I have given some thought to how my therapist has impacted my life. I (and several friends who also go to him) call him Dr. C, but, beyond that, what role has he played in my life? For a while, he was a father figure. He taught me much of what I should have learned from my father and, for that matter, my mother, and that was a comfort and much appreciated. Now, though, that role has been fulfilled. He is not a friend, though his wife is a good friend of mine. Finally, I decided he is my lifeguard.
When I first started with him (6 years ago in January, 2010) I was a mess emotionally and psychologically. I felt like I had been tossed out of a boat during a hurricane and I was drowning. He would throw me the lifeline but it never quite reached me and I had to reach out for it. Then he would encourage me to pull myself to the boat while he also hauled on the line. This happened week after week, twice a week, for almost 2 years before I found a calm place in the lee of the boat and he taught me how to swim. At that point I went down to once a week visits.
When MSA came calling, the hurricane built up force and, once again, I was thrown into the tempest and once again he threw me the lifeline. Once again, I had to make my way to it and work to be pulled back aboard the boat. Now, after another year or so of twice a week hurricane winds, I am looking for another calm spot in the lee of the boat. This time, my lifeguard is swimming next to me, reassuring me that I can do it. I can cut back to once a week and survive. He has given me the skill to swim and find my way, even in the dark, back to the boat. I am afraid, though, of what will happen if the storm clouds come back in the middle of the week. He tells me he is only a phone call away, and he always returns his phone calls. He also assures me that he will always be there, ready to throw out the lifeline in case I ever need it again.
During the last two months our cat of 15 years died and 3 weeks later our dog of 13 years died. Now our last remaining dog is going through mourning and has the same disease his sister had so we are also living with anticipatory grief. These deaths, on top of the deaths of family members and the family on the Shy-Drager online support group have taken a toll on my swimming ability so I am going to remain a bit longer on twice a week. However, I will decide every Tuesday if I can go a full week without his guidance and cancel my Friday appointment when I feel confident. I believe I will cancel more often than I keep that appointment. That is, unless I get derailed by another fierce blow by MSA or other family difficulties. Our other Akita is the brother of our lost one and so is also 13 years old and in frail health. We feared we would lose him to grief over his sister, but with lots of love and attention from my husband/my caregiver, he is doing well and once again is able to smile. Dr. C carried me through those weeks and got me back into the water to hang onto the lifeline and gradually start swimming again, further and further from the boat.
So, I give honor to him, Dr. C. for being there whenever I needed him and for teaching me to swim well enough to get back to the boat and climb the ladder to safety. What more wonderful gift could one human give another than to provide someone with the tools to learn how to swim not only back to the boat and climb the ladder, but also how swim to shore and safety without the need of a constant lifeline.
Monday, December 28, 2009
Tuesday, December 15, 2009
Who Knows Where the Maze Goes
Time, as we know, appears to be very flexible. The more experiences we have (ergo: the older we are) the faster it seems to pass. Children, who have little experience in life, feel that time passes way too slowly, especially waiting for Christmas or birthdays.
Take a lab rat in a maze. At first, the little rat gets let out of his den every morning and runs the maze to where he learns the cheese is. He grabs the cheese and heads back to his den to eat it. The next morning, and the next, he continues going to the cheese door, getting it and taking it ?home?. This is a rather boring routine and time passes very slowly for him, since, after he ate his cheese there was nothing to do and nothing new to think about. Then, one day, the cheese door is closed and he has to learn a new route to locate his cheese. He follows the new route and then suddenly that door is closed and he has to learn yet another path through the maze. Now, it is a big maze so it can take a while to learn the way around.
One morning, the rat got up (now, I know rats are nocturnal, but bear with me) and went outside his den. There was no wall blocking his way. Instead, there was a meadow with grass so he cautiously went in and explored. He had never experienced anything like this, but he decided he really liked it so he spent a few days there, and, every morning his cheese would appear in the meadow with him. Finally, he stepped out of the meadow and next door was a mountain stream and flowers. He liked that, also, so he spent a few days exploring that environment. This went on and on and the rat grew ever more experienced as he learned many new things. Along the way, he met other rats who were also learning new things and they shared ideas and thus learned of even more wonderful experiences that could be enjoyed.
Now time was passing very quickly and he started to age. He found it difficult to get around as much as he wanted and once again time seemed almost to slow down. Then he remembered all his experiences and he had something to think about and once again his sense of time expanded. One day, a young rat came upon him as he lay in the sun, reading a book. The young rat asked what the secret was to making time go faster and the much experienced, older rat, replied that it was experiencing life. The more experiences you try, the faster time seems to go but in fact it is just the opposite. When you grow tired, you have a lifetime of memories to examine to fill your hours. You have hobbies to enjoy, books to read, music to listen to, friends to talk to, and, you have young rats who come for advice and that is good.
Take a lab rat in a maze. At first, the little rat gets let out of his den every morning and runs the maze to where he learns the cheese is. He grabs the cheese and heads back to his den to eat it. The next morning, and the next, he continues going to the cheese door, getting it and taking it ?home?. This is a rather boring routine and time passes very slowly for him, since, after he ate his cheese there was nothing to do and nothing new to think about. Then, one day, the cheese door is closed and he has to learn a new route to locate his cheese. He follows the new route and then suddenly that door is closed and he has to learn yet another path through the maze. Now, it is a big maze so it can take a while to learn the way around.
One morning, the rat got up (now, I know rats are nocturnal, but bear with me) and went outside his den. There was no wall blocking his way. Instead, there was a meadow with grass so he cautiously went in and explored. He had never experienced anything like this, but he decided he really liked it so he spent a few days there, and, every morning his cheese would appear in the meadow with him. Finally, he stepped out of the meadow and next door was a mountain stream and flowers. He liked that, also, so he spent a few days exploring that environment. This went on and on and the rat grew ever more experienced as he learned many new things. Along the way, he met other rats who were also learning new things and they shared ideas and thus learned of even more wonderful experiences that could be enjoyed.
Now time was passing very quickly and he started to age. He found it difficult to get around as much as he wanted and once again time seemed almost to slow down. Then he remembered all his experiences and he had something to think about and once again his sense of time expanded. One day, a young rat came upon him as he lay in the sun, reading a book. The young rat asked what the secret was to making time go faster and the much experienced, older rat, replied that it was experiencing life. The more experiences you try, the faster time seems to go but in fact it is just the opposite. When you grow tired, you have a lifetime of memories to examine to fill your hours. You have hobbies to enjoy, books to read, music to listen to, friends to talk to, and, you have young rats who come for advice and that is good.
Friday, December 4, 2009
Time _ and MSA_ have made a change in me
I was in session with my therapist today, talking to him about changes I have noticed in myself, especially during the past 6 months. Despite the losses in my life, right now life looks better than it ever has.
I used to be a self driven Type A personality, always rushing and multitasking. Always busy, never idle, not able to just sit. Speeding from one thing to another. Not just speeding emotionally, but also driving. Hurry, hurry, hurry.
Now, the journey is just as important as the destination. A drive to the library is a pleasure just to be out and see other people. The grocery holds many wonders. New products, old friends, and familiar brands. I just wish they would stop moving things around so you can no longer find what has always been right there, and now is somewhere unknown. But again, the journey takes over while you go in search of the missing item.
In the past, my dreams were of being shipwrecked and without a life vest. I held onto the rope in the hands of my therapist, hoping he could save my life. Now, I dream of swimming in a river with a strong current and know that I can exit the river at any time. I control when to leave the water.
So, as horrible as this disease is, positive things have happened to me because of it. This slow down in life, enjoying the pleasures of everyday things has occurred because life has suddenly become precious. Where I used to want to die, now I find that life is a pleasant place to be. Simple pleasures such as the taste of an apple, watching the river flow by with leaves floating along, the ducks swimming and begging for a handout, the ospreys and their nests, and even the alligators with just their eyes protruding out of the water, all are special to me. I am a nature lover, not a city dweller. I love the woods and the water, and not just underwater diving. I love to sit and watch the water and visit for a spell with a friend. To canoe down the river with friends, even for a couple of hours, brings me enormous pleasure, despite the physical pain that can accompany it.
When I see a path or dirt road leading back into the woods, I want to follow it. I have photos of wood paths on my screensaver slideshow. I want to go down those paths, wander along on the pine needles or oak leaves. Look up at the beautiful sky as seen through the tree canopy. What beauty there is in nature.
Things I used to feel I had to do, or people I had to do something with, no longer matter to me. I do not have to be with people who are negative or appear to try to bring other folks down.
I used to love to rain walk, back when I could walk more than 50 feet or so. I walked our two Rhodesian Ridgebacks in freezing weather, in rain, during hurricanes, and when the county was spraying for citrus canker with the helicopters dropping the poison on me. When that happened, I would hurry the dogs under a tree where we would huddle under the canopy hoping to be missed by most of the poison. They supposedly had posted where they would be spraying every day, but somehow they managed to catch me anyway. We walked at 5 AM so I could get back and be showered and dressed and at work by 6:30. Later, I moved the walk up so I could get to work at 5:45 or 6 AM. Workaholic, Type A, hurry, hurry, hurry.
Now, I am no longer able to work and I sleep until 10:30 or 11 AM every morning. I walk the remaining Akita, Bear, from our yard to next door and back and find that is all I can do. He appreciates even that little. My husband also walks him and spends a great deal of time with him. Without his sister, he is very lonely and appreciates every minute of attention he can get. He is still in mourning, though not as severely as we were afraid he was going to be, at least, not at this time.
You have heard the old saying, is the glass half empty or half full. I contend that it depends on whether you are looking from the bottom up or from the top down. As another saying goes, the devil is in the details.
I still long to return to Utila and revisit my old underwater haunts. To find the seahorses and the squid, to be cleaned by a cleaner shrimp, to marvel at the beauty of nature under the ocean, and, with luck, to once again be in the water with a whale shark. I realize I can no longer swim with one ? but to have one pass by me as I float on the surface, to have it look me in the eye curiously as it glides by, would be a completion for me. I have been in the water with a number of them over the years, but it has been a long, dry spell without a sighting. They come and go on their own schedule, not according to our wishes. Another unlikely wish is to be revisited by a pod of dolphin that enjoyed the company of humans. We spent 30 minutes one year with dolphin playing all around us, mimicking our every move, spiraling, leaping, diving, swimming under our arms as long as we did not reach out to touch them. What an unexpected, and awesome, experience. Yes, Utila is number one on my bucket list. I guess it always will be until I draw my last breath.
So, MSA has been a blessing in many ways. To be able to slow down, to write this journal or blog, and to hope to encourage others with MSA that there are positive side effects until the disease grabs them down and will not let them go. To be bedridden and in pain, unable to communicate; those have been my worst nightmares, and I know many on the ShyDrager.org online support group are there already. Their caregivers communicate for them and for support for themselves as they deal with both grief and the anticipatory grief of losing a loved one, too soon. Until that time comes, I am going to keep on hanging in there and doing as much of what I love as possible. I thank my husband for making many of these loves of mine come to fruition.
Right now, life is good and that is enough.
I used to be a self driven Type A personality, always rushing and multitasking. Always busy, never idle, not able to just sit. Speeding from one thing to another. Not just speeding emotionally, but also driving. Hurry, hurry, hurry.
Now, the journey is just as important as the destination. A drive to the library is a pleasure just to be out and see other people. The grocery holds many wonders. New products, old friends, and familiar brands. I just wish they would stop moving things around so you can no longer find what has always been right there, and now is somewhere unknown. But again, the journey takes over while you go in search of the missing item.
In the past, my dreams were of being shipwrecked and without a life vest. I held onto the rope in the hands of my therapist, hoping he could save my life. Now, I dream of swimming in a river with a strong current and know that I can exit the river at any time. I control when to leave the water.
So, as horrible as this disease is, positive things have happened to me because of it. This slow down in life, enjoying the pleasures of everyday things has occurred because life has suddenly become precious. Where I used to want to die, now I find that life is a pleasant place to be. Simple pleasures such as the taste of an apple, watching the river flow by with leaves floating along, the ducks swimming and begging for a handout, the ospreys and their nests, and even the alligators with just their eyes protruding out of the water, all are special to me. I am a nature lover, not a city dweller. I love the woods and the water, and not just underwater diving. I love to sit and watch the water and visit for a spell with a friend. To canoe down the river with friends, even for a couple of hours, brings me enormous pleasure, despite the physical pain that can accompany it.
When I see a path or dirt road leading back into the woods, I want to follow it. I have photos of wood paths on my screensaver slideshow. I want to go down those paths, wander along on the pine needles or oak leaves. Look up at the beautiful sky as seen through the tree canopy. What beauty there is in nature.
Things I used to feel I had to do, or people I had to do something with, no longer matter to me. I do not have to be with people who are negative or appear to try to bring other folks down.
I used to love to rain walk, back when I could walk more than 50 feet or so. I walked our two Rhodesian Ridgebacks in freezing weather, in rain, during hurricanes, and when the county was spraying for citrus canker with the helicopters dropping the poison on me. When that happened, I would hurry the dogs under a tree where we would huddle under the canopy hoping to be missed by most of the poison. They supposedly had posted where they would be spraying every day, but somehow they managed to catch me anyway. We walked at 5 AM so I could get back and be showered and dressed and at work by 6:30. Later, I moved the walk up so I could get to work at 5:45 or 6 AM. Workaholic, Type A, hurry, hurry, hurry.
Now, I am no longer able to work and I sleep until 10:30 or 11 AM every morning. I walk the remaining Akita, Bear, from our yard to next door and back and find that is all I can do. He appreciates even that little. My husband also walks him and spends a great deal of time with him. Without his sister, he is very lonely and appreciates every minute of attention he can get. He is still in mourning, though not as severely as we were afraid he was going to be, at least, not at this time.
You have heard the old saying, is the glass half empty or half full. I contend that it depends on whether you are looking from the bottom up or from the top down. As another saying goes, the devil is in the details.
I still long to return to Utila and revisit my old underwater haunts. To find the seahorses and the squid, to be cleaned by a cleaner shrimp, to marvel at the beauty of nature under the ocean, and, with luck, to once again be in the water with a whale shark. I realize I can no longer swim with one ? but to have one pass by me as I float on the surface, to have it look me in the eye curiously as it glides by, would be a completion for me. I have been in the water with a number of them over the years, but it has been a long, dry spell without a sighting. They come and go on their own schedule, not according to our wishes. Another unlikely wish is to be revisited by a pod of dolphin that enjoyed the company of humans. We spent 30 minutes one year with dolphin playing all around us, mimicking our every move, spiraling, leaping, diving, swimming under our arms as long as we did not reach out to touch them. What an unexpected, and awesome, experience. Yes, Utila is number one on my bucket list. I guess it always will be until I draw my last breath.
So, MSA has been a blessing in many ways. To be able to slow down, to write this journal or blog, and to hope to encourage others with MSA that there are positive side effects until the disease grabs them down and will not let them go. To be bedridden and in pain, unable to communicate; those have been my worst nightmares, and I know many on the ShyDrager.org online support group are there already. Their caregivers communicate for them and for support for themselves as they deal with both grief and the anticipatory grief of losing a loved one, too soon. Until that time comes, I am going to keep on hanging in there and doing as much of what I love as possible. I thank my husband for making many of these loves of mine come to fruition.
Right now, life is good and that is enough.
Tuesday, December 1, 2009
Is Recovery Possible
On a good note, our remaining Akita, Bear, is already adjusting very well without his sister. He has come out of his mope in the doghouse and now does his rounds in the yard, checking all fence lines and gates. He is enjoying going on short walks with my husband, as well as a couple of very short walks with me. He has not been out for a walk in 3 years since his sister was in too much pain to walk. The other night, he gave one soulful, mourning howl and my husband went out and consoled him with some dog biscuits. After that, he went back to bed and slept through the rest of the night. He repeated the cry again the next night and once again my husband went out to console him.
Today has been awful. I think the loss of Tiki and Beta uncovered a lot of suppressed emotion from past losses and all of the losses of the past few years have brought to a head how much I have needed to let go and mourn. I still hurt from the death of my best friend. I call him my spiritual twin brother. It has been a long time and I still have not recovered from his loss. We were inseparable throughout our lives. I miss him more than I can say. I loved him so much, not romantically, but as the best friend I had ever had. The only person who never turned on me, never criticized me, always supported me against anyone who said anything bad about me. I feel so much guilt that I have carried around since 1988 when I did not go see him at Christmas, 1987. He died on Jan. 18, 1988 on Super Bowl Sunday. I do not think I can ever forgive myself for not going to see him when I was in town. I did not cry for him at the time, either. I have not truly mourned for any of my losses and my heart aches.
He was a genius on the piano and organ and taught himself to play the pipe organ in our church, complete with its three tiered keyboards and a myriad of wooden pedals that had to be operated by stocking feet. We used to go to the church on Thursday after school so he could practice the next week’s music. One week we arrived and found the church locked so we located a window that was not latched and went in to practice. A new youth pastor charged in and accused us of theft and vandalism. We were infuriated, this was our church and what right did he have to deny us entrance. He was only there a short time following that incident. My heart breaks every time I think of my friend, a daily occurrence even after all these years. Is recovery possible? I do not know, but I am hopeful.
There is a huge, aching and bleeding hole in my heart where I have locked up all my grief over lost loved ones. Whenever I have a new loss, I gently pry open the door and toss in the new grief and quickly bar the door so no one can escape.
I read the book, Tear Soup, and it struck a chord with me. I did leak some tears. I may take it to my next therapy session, but I am afraid I will break down and not have time left for my therapist to bring me back to equilibrium.
I need to move on from all this sorrow. I need to get beyond the sadness and depression caused by so much unreleased emotion. I need to free myself from this albatross of unexpressed grief I have hung around my neck. It is hard, though, for me to let go of the rigid control that I maintain on my emotions. I am afraid I will not be able to stop crying once I start. I have to have hope, though. If Bear can recover, so, too, can I.
Today has been awful. I think the loss of Tiki and Beta uncovered a lot of suppressed emotion from past losses and all of the losses of the past few years have brought to a head how much I have needed to let go and mourn. I still hurt from the death of my best friend. I call him my spiritual twin brother. It has been a long time and I still have not recovered from his loss. We were inseparable throughout our lives. I miss him more than I can say. I loved him so much, not romantically, but as the best friend I had ever had. The only person who never turned on me, never criticized me, always supported me against anyone who said anything bad about me. I feel so much guilt that I have carried around since 1988 when I did not go see him at Christmas, 1987. He died on Jan. 18, 1988 on Super Bowl Sunday. I do not think I can ever forgive myself for not going to see him when I was in town. I did not cry for him at the time, either. I have not truly mourned for any of my losses and my heart aches.
He was a genius on the piano and organ and taught himself to play the pipe organ in our church, complete with its three tiered keyboards and a myriad of wooden pedals that had to be operated by stocking feet. We used to go to the church on Thursday after school so he could practice the next week’s music. One week we arrived and found the church locked so we located a window that was not latched and went in to practice. A new youth pastor charged in and accused us of theft and vandalism. We were infuriated, this was our church and what right did he have to deny us entrance. He was only there a short time following that incident. My heart breaks every time I think of my friend, a daily occurrence even after all these years. Is recovery possible? I do not know, but I am hopeful.
There is a huge, aching and bleeding hole in my heart where I have locked up all my grief over lost loved ones. Whenever I have a new loss, I gently pry open the door and toss in the new grief and quickly bar the door so no one can escape.
I read the book, Tear Soup, and it struck a chord with me. I did leak some tears. I may take it to my next therapy session, but I am afraid I will break down and not have time left for my therapist to bring me back to equilibrium.
I need to move on from all this sorrow. I need to get beyond the sadness and depression caused by so much unreleased emotion. I need to free myself from this albatross of unexpressed grief I have hung around my neck. It is hard, though, for me to let go of the rigid control that I maintain on my emotions. I am afraid I will not be able to stop crying once I start. I have to have hope, though. If Bear can recover, so, too, can I.
Tuesday, November 24, 2009
Grief and Loss
This is the hardest thing I have written. It was inspired by the death of a cherished family member, our cat, Tiki. She was like a dog and followed us from room to room, slept under my husband’s chin, and traveled with us in our motor home to the
Yesterday, we lost our female
I do not mean to trivialize the death of human loved ones and I am fully aware of the difference, but the grief I feel for our dog and cat is just as deep as the grief I felt for my father, my husband’s father, my mother, my aunt, and three of our best friends in the past 5 years. And we have two other friends undergoing cancer treatment. It is different, but it still leaves an aching empty place inside my heart. I realize that the suffering endured by those who lose a spouse or parent experience a deeper pang of grief, but grief is grief, regardless of the source.
Grief is awful. We all take our own paths and I tend to push mine down and distract myself in order not to feel the pain. Some people can recover in only a few days and some may take a few years. Some, like me, bury it down inside to avoid the pain and then have it turn up later as depression. That is dealing with it without dealing with it. I wish I could cry it out but something always holds me back, even though I know that crying is a very good way to recover. Grieving and crying does not last forever. At some point, the tears will dry up except for special moments, holidays, etc. Odors/aromas can also trigger other bouts of grief. There is an old saying that time heals all wounds but that is only partially true, at least in my experience. Some wounds are so deep that they scab over but under certain circumstances the wound can reopen and grief for that very, very special loved-one can once again overwhelm me. I experience grief as a very profound sadness and I have a difficult time expressing that sadness in tears. The sorrow I feel is always in my mind no matter what I am doing. I admire those who can grieve openly and let it out as much as possible.
One thing that makes grieving easier for me to bury deep inside myself is my sense of spirituality. I do believe our spiritual essence, our soul, if you will, does continue to exist and therefore the loved one is not gone forever. The body is gone, but the spirit lives on within our hearts. Yet, still I experience the sadness, even knowing the loved one lives on inside me. I miss the warmth, the hugs, the comforting words that are shared on a day-to-day basis.
Another type of grieving is anticipatory grief. This is what people feel when their loved one has MSA or other fatal diseases similar to this. The grieving starts while the loved one is still alive and it hurts to watch the beloved slowly die. I believe this situation makes the grieving process much more difficult than in a less protracted illness.
During the month of October, the Shy-Drager online support group suffered through an inordinate number of deaths of loved ones. The grief shared by so many for so many was heart-felt and the love, empathy, and compassion shown by people who have never met each other was truly inspiring. What a wonderful group of people who give their time and energy providing support and comfort for others in need, even as they are also in need. Immediately following the announcement of a death, messages pour in for support to the caregiver and family. This kind of support is, I feel, rare. Most of us have never met and probably never will meet, yet we know each other better than many life-long friends. We pour out our hearts at this site; we ask for help and advice; we ask for information from the caregivers who have been there to assist others long after their loved ones have passed on. In one request for help, a desperate plea, within 10 minutes over 12 individuals responded with their support. I am so glad my neurologist suggested this group as a source of information and support. MSA is a horrible disease, but life can still be lived with modifications given physical limitations. My deep-felt thanks go to each and every member for the comfort they each provide.
Monday, October 26, 2009
Fear
Fear makes up a normal response to every persons life. From the fear of the saber toothed tiger to the fear of the unknown. Fears like fear of cancer, fear of unemployment, fear of poverty and homelessness, fear of heart attacks and strokes, fear of diabetes, fear of war. So many real things to be afraid of.
Because of MSA I have learned that I am no longer afraid of some of these things. People say not to reuse plastic bottles as I could get cancer. So? Many people are afraid of so many things that are no longer of importance to me. No more worry about breast cancer or other cancers, no more worry about cholesterol, no more fear of many unknown diseases. Yes, I am concerned about H1N1 but I take reasonable precautions and use hand antibacterial lotion whenever I go anywhere. I also wash my hands repeatedly. I am not saying I have a death wish just because I am no longer going to worry about so many aspects of everyday life. I just know that, from what more than one doctor has said, it is better to die of anything else than letting this disease run the full course.
I have written a very detailed and specific Advanced Care Directive to avoid unnecessary medical intervention. I wear a DNR bracelet with the name of my primary care and my neurologist on it. However, I have been told by several doctors that they do not follow such guidelines and will do everything in their power to keep me alive. I find this strange as I have always thought the doctors have to follow your own directives.
The most common fear is that of death. As I mentioned in an earlier post, death is a friend to be welcomed when life takes a turn for the worst. I believe we have a soul that lives on and that we will be reunited with our loved ones after death. In discussions with my therapist, I have started to believe that even those people who treated us badly and were abusive, will be healed and whole after death and their true loving spirit will be available to us.
Many famous individuals have made statements about death. I am including a few.
One of the most meaningful to many people who suffer from fatal illnesses is by Gilda Radner written shortly before she died, I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious Ambiguity.
Anais Nin wrote, People living deeply have no fear of death.
Amelia Burr writes similarly, Because I have loved life, I shall have no sorrow to die.
Charlotte Perkins Gilman writes, Death? Why this fuss about death. Use your imagination, try to visualize a world without death! ... Death is the essential condition of life, not an evil.
John Muir, the famous naturalist, wrote, Let children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed star, and they will learn that death is stingless indeed, and as beautiful as life.
And, finally, a quote by a famous Buddhist, Songyal Rinpoche, ...when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.
All of these people, and many thousands of others, have written of a life well lived holds no place for fear of death. Death is a natural occurrence of life. We start dying at the moment of conception.
Think how boring immortality would be. To live forever may be some people?s wish, but I think life holds more excitement, more time for spiritual growth, when we are aware that our span of years in this body is limited. These are a few of the reasons I do not fear death. I fear suffering, but not death. I believe this fear of suffering is common to all people around the globe. So, be not afraid. for fear is the enemy, not death.
Because of MSA I have learned that I am no longer afraid of some of these things. People say not to reuse plastic bottles as I could get cancer. So? Many people are afraid of so many things that are no longer of importance to me. No more worry about breast cancer or other cancers, no more worry about cholesterol, no more fear of many unknown diseases. Yes, I am concerned about H1N1 but I take reasonable precautions and use hand antibacterial lotion whenever I go anywhere. I also wash my hands repeatedly. I am not saying I have a death wish just because I am no longer going to worry about so many aspects of everyday life. I just know that, from what more than one doctor has said, it is better to die of anything else than letting this disease run the full course.
I have written a very detailed and specific Advanced Care Directive to avoid unnecessary medical intervention. I wear a DNR bracelet with the name of my primary care and my neurologist on it. However, I have been told by several doctors that they do not follow such guidelines and will do everything in their power to keep me alive. I find this strange as I have always thought the doctors have to follow your own directives.
The most common fear is that of death. As I mentioned in an earlier post, death is a friend to be welcomed when life takes a turn for the worst. I believe we have a soul that lives on and that we will be reunited with our loved ones after death. In discussions with my therapist, I have started to believe that even those people who treated us badly and were abusive, will be healed and whole after death and their true loving spirit will be available to us.
Many famous individuals have made statements about death. I am including a few.
One of the most meaningful to many people who suffer from fatal illnesses is by Gilda Radner written shortly before she died, I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious Ambiguity.
Anais Nin wrote, People living deeply have no fear of death.
Amelia Burr writes similarly, Because I have loved life, I shall have no sorrow to die.
Charlotte Perkins Gilman writes, Death? Why this fuss about death. Use your imagination, try to visualize a world without death! ... Death is the essential condition of life, not an evil.
John Muir, the famous naturalist, wrote, Let children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed star, and they will learn that death is stingless indeed, and as beautiful as life.
And, finally, a quote by a famous Buddhist, Songyal Rinpoche, ...when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.
All of these people, and many thousands of others, have written of a life well lived holds no place for fear of death. Death is a natural occurrence of life. We start dying at the moment of conception.
Think how boring immortality would be. To live forever may be some people?s wish, but I think life holds more excitement, more time for spiritual growth, when we are aware that our span of years in this body is limited. These are a few of the reasons I do not fear death. I fear suffering, but not death. I believe this fear of suffering is common to all people around the globe. So, be not afraid. for fear is the enemy, not death.
Tuesday, October 20, 2009
Time reconsidered
I have been thinking about what I said yesterday that I would go back 20 years to when my body was healthy and whole. Now, I don?t think so. Back then I did not have the serenity and the wisdom I have now. I had not discovered that peace was a possibility for me. Despite this disease I believe I would choose to be who I am today instead of what I was 20 years ago.
Back in my early forties, everything had to be done right now. It had to be done rapidly at warp speed. I could not slow down and smell the roses (I was one who did not see the roses back then). I had never been diving and had not discovered the oneness with the sea. I had not learned to accept myself for who I was instead of what I was. So, all in all, I will stay in my sixties with my MSA and see what the future holds.
Back in my early forties, everything had to be done right now. It had to be done rapidly at warp speed. I could not slow down and smell the roses (I was one who did not see the roses back then). I had never been diving and had not discovered the oneness with the sea. I had not learned to accept myself for who I was instead of what I was. So, all in all, I will stay in my sixties with my MSA and see what the future holds.
Saturday, October 17, 2009
TIME
If I could put time in a bottle. Those words from a famous song are especially haunting for those of us with MSA. For us, time is of critical importance. Not only concerning how much time is left, but also, if we could go back in time before this horrible disease trapped our brains. Could we possibly do something differently so it would not occur?
If I could go back in time, it would be twenty years ago when I was able to walk two large dogs at 4:30 in the morning and still get to work around 6 AM to start my busy day in my library. I could lift heavy boxes of books all day, run to the back of the 20,000 square foot building to grab a book for someone, pick up a stack of books 16? high and carry them in one arm to the front of the building, unload 3 three foot deep carts containing books being delivered to our library from other libraries. I was a true type A individual, only happy when I was going full steam ahead. In between these activities, I completed all my administrative tasks: preparing and keeping track of the budget, writing reports for the Library Board and the City Manager and reading reviews to order new books. The City Manager finally had to tell me I would have to retire and take disability as he was afraid he was going to find me dead on the floor someday and he was afraid for my life. By then, I could not walk more than five feet without gasping for breath, my legs wooden as I tried to hold on for only a little bit more.
Now, I feel lucky if I can walk 30 feet or if I can pick up the cat, or tuck in the sheet on my side of the bed. One book is about all I can hold (unless they are paperbacks), and I use the motorized carts in the grocery (thank God they have them!). I used to breeze through the grocery in a flash, loading the cart and getting in and out with a full cart. I could take the cart out, unload it into my van, and return the cart to the store. Now, I have someone accompany me to load my van and return the scooter. I don?t remember the grocery even having scooters before I lost my ability to really function.
I frequently wonder what is going to fail on me next. I started having difficulty swallowing food last month and I have to take a swallowing test on Tuesday. I dread it. Food gets ?stuck? between my windpipe and my esophagus and I can neither swallow nor breathe until I can force it away from my windpipe with leftover breath in my lungs. Today, I started coughing and choking and gasping for breath while just sitting still. Fortunately, I was with my therapist the first time and he got me some water to soothe my throat. I have had four episodes of that just today.
I started with the night terrors last April and they are truly terrible and terrifying. I start screaming and thrashing and my husband rushes in and holds me and reassures me that it was all a bad dream.
I lost my sense of balance in 2005 when I fell out of chairs, fell while walking, fell while standing, fell while kneeling; you get the picture. I would fall as often as 20 times per day.
None of these things are new to those with MSA. In fact, I am lucky. I can, with the help of medications, walk that 30 feet (sometimes) and, if I am careful, I can swallow (sometimes) without choking. Many of us with MSA cannot do these simple things. Many have feeding tubes in order to absorb nutrition to keep their bodies going. Not to ever be able to savor the taste of food again is a very frightening thought.
People talk about time standing still or time going by so fast. For someone with MSA, unless we are asleep, time creeps by as we wonder if the pain will ease up or what may go wrong with us next. Many times we are left alone with our thoughts and time seems to drag, then a friend comes to visit and time speeds back up. Time has its behavior and we have no control over it. It moves at its own pace, regardless of how we perceive it.
I think of time and of the control it holds over me. And I also think of the control my body has taken away from me. I cannot control time any more than I can control this disease. This disease just is and time just is. And they are what they are. All I can do is observe and try to adjust my focal point away from fear and toward a more positive attitude. I told my therapist I felt like I was on a runaway train that I had no control over and it was heading for a crash. He quietly reassured me it was not going to crash; it was going to gradually slow down until it finally came to a slow stop. Time, for this body, will be over.
If I could go back in time, it would be twenty years ago when I was able to walk two large dogs at 4:30 in the morning and still get to work around 6 AM to start my busy day in my library. I could lift heavy boxes of books all day, run to the back of the 20,000 square foot building to grab a book for someone, pick up a stack of books 16? high and carry them in one arm to the front of the building, unload 3 three foot deep carts containing books being delivered to our library from other libraries. I was a true type A individual, only happy when I was going full steam ahead. In between these activities, I completed all my administrative tasks: preparing and keeping track of the budget, writing reports for the Library Board and the City Manager and reading reviews to order new books. The City Manager finally had to tell me I would have to retire and take disability as he was afraid he was going to find me dead on the floor someday and he was afraid for my life. By then, I could not walk more than five feet without gasping for breath, my legs wooden as I tried to hold on for only a little bit more.
Now, I feel lucky if I can walk 30 feet or if I can pick up the cat, or tuck in the sheet on my side of the bed. One book is about all I can hold (unless they are paperbacks), and I use the motorized carts in the grocery (thank God they have them!). I used to breeze through the grocery in a flash, loading the cart and getting in and out with a full cart. I could take the cart out, unload it into my van, and return the cart to the store. Now, I have someone accompany me to load my van and return the scooter. I don?t remember the grocery even having scooters before I lost my ability to really function.
I frequently wonder what is going to fail on me next. I started having difficulty swallowing food last month and I have to take a swallowing test on Tuesday. I dread it. Food gets ?stuck? between my windpipe and my esophagus and I can neither swallow nor breathe until I can force it away from my windpipe with leftover breath in my lungs. Today, I started coughing and choking and gasping for breath while just sitting still. Fortunately, I was with my therapist the first time and he got me some water to soothe my throat. I have had four episodes of that just today.
I started with the night terrors last April and they are truly terrible and terrifying. I start screaming and thrashing and my husband rushes in and holds me and reassures me that it was all a bad dream.
I lost my sense of balance in 2005 when I fell out of chairs, fell while walking, fell while standing, fell while kneeling; you get the picture. I would fall as often as 20 times per day.
None of these things are new to those with MSA. In fact, I am lucky. I can, with the help of medications, walk that 30 feet (sometimes) and, if I am careful, I can swallow (sometimes) without choking. Many of us with MSA cannot do these simple things. Many have feeding tubes in order to absorb nutrition to keep their bodies going. Not to ever be able to savor the taste of food again is a very frightening thought.
People talk about time standing still or time going by so fast. For someone with MSA, unless we are asleep, time creeps by as we wonder if the pain will ease up or what may go wrong with us next. Many times we are left alone with our thoughts and time seems to drag, then a friend comes to visit and time speeds back up. Time has its behavior and we have no control over it. It moves at its own pace, regardless of how we perceive it.
I think of time and of the control it holds over me. And I also think of the control my body has taken away from me. I cannot control time any more than I can control this disease. This disease just is and time just is. And they are what they are. All I can do is observe and try to adjust my focal point away from fear and toward a more positive attitude. I told my therapist I felt like I was on a runaway train that I had no control over and it was heading for a crash. He quietly reassured me it was not going to crash; it was going to gradually slow down until it finally came to a slow stop. Time, for this body, will be over.
Friday, October 2, 2009
I Had a Dream
Last night I had a strange and wondrous dream. I dreamed of my mother, as I had never seen or experienced her. She was in her twenties and radiantly beautiful, with loving and compassionate eyes. I had never looked her in the eyes before, I had never explored her face with my eyes.
What, you may ask, makes this dream strange? Well, my mother had schizophrenia from the time I was an infant. Even my newborn self knew she could not be trusted and I would not nurse (she told me in my thirties) and would struggle to get away from her. I did not learn she had schizophrenia until I was in my forties and I drove over to see her just before she went into colon surgery. The emotional trauma I experienced in my childhood haunted me until I was in my late fifties. I was always afraid of her and never trusted her. When I spent the night in her apartment, I would lie awake, afraid she would stab me in the night.
In 2004, she was Baker Acted again and that was when I sought therapy. Shortly after she was released, she went into the hospital for tests as her hormone level for ovarian cancer was off the charts. She chose to have surgery, hoping it would cure her, despite my advise to not have the surgery. When they opened her open she entirely eaten up by cancer and all they could do was sew her back up.
The doctors did not tell her what they had found. She asked if they had gotten it all and they did not answer. I had driven over to be with her and when she asked me, I could not lie. I told her the truth and she shoved me away. I understood why and did not hold it against her.
I spent the next two days with her, letting her sip water from a straw, feeding her a teaspoon of ice cream, and just Being with her. I think that was when I discovered I loved her for the first time. I tended her for those two days, and when I left on the second day, I knew she would die and, instead of telling her I would see her ?tomorrow? I simply said, ?goodbye, I love you.?
The building she was living in for my dream was a beautiful condo on the beach with crashing waves and an inlet of calm water. The entire wall facing the ocean was windows so she could see it from her living room and bedroom. She had always loved the ocean and every time I would drive over to see her, I would take her to an inlet dividing the island and she would sit and watch the waves and the boats going out to fish or the big ships coming into the harbor. This was where she found her peace and her solace. So, seeing her beautiful face for the first time in the surroundings she found so meaningful to her meant even more to me. I can look back in my mind?s eye and see her beautiful eyes, filled with love, looking back at me. She was whole in my dream, not tortured by her mental illness, and she gave of herself fully to me, as I to her. It was a very wondrous dream. I know she is waiting for me when my time comes; waiting for me in the lustrous white light and her kind eyes.
What, you may ask, makes this dream strange? Well, my mother had schizophrenia from the time I was an infant. Even my newborn self knew she could not be trusted and I would not nurse (she told me in my thirties) and would struggle to get away from her. I did not learn she had schizophrenia until I was in my forties and I drove over to see her just before she went into colon surgery. The emotional trauma I experienced in my childhood haunted me until I was in my late fifties. I was always afraid of her and never trusted her. When I spent the night in her apartment, I would lie awake, afraid she would stab me in the night.
In 2004, she was Baker Acted again and that was when I sought therapy. Shortly after she was released, she went into the hospital for tests as her hormone level for ovarian cancer was off the charts. She chose to have surgery, hoping it would cure her, despite my advise to not have the surgery. When they opened her open she entirely eaten up by cancer and all they could do was sew her back up.
The doctors did not tell her what they had found. She asked if they had gotten it all and they did not answer. I had driven over to be with her and when she asked me, I could not lie. I told her the truth and she shoved me away. I understood why and did not hold it against her.
I spent the next two days with her, letting her sip water from a straw, feeding her a teaspoon of ice cream, and just Being with her. I think that was when I discovered I loved her for the first time. I tended her for those two days, and when I left on the second day, I knew she would die and, instead of telling her I would see her ?tomorrow? I simply said, ?goodbye, I love you.?
The building she was living in for my dream was a beautiful condo on the beach with crashing waves and an inlet of calm water. The entire wall facing the ocean was windows so she could see it from her living room and bedroom. She had always loved the ocean and every time I would drive over to see her, I would take her to an inlet dividing the island and she would sit and watch the waves and the boats going out to fish or the big ships coming into the harbor. This was where she found her peace and her solace. So, seeing her beautiful face for the first time in the surroundings she found so meaningful to her meant even more to me. I can look back in my mind?s eye and see her beautiful eyes, filled with love, looking back at me. She was whole in my dream, not tortured by her mental illness, and she gave of herself fully to me, as I to her. It was a very wondrous dream. I know she is waiting for me when my time comes; waiting for me in the lustrous white light and her kind eyes.
Tuesday, September 22, 2009
When the therapist is away?
The last couple of weeks have been very interesting (euphemism) while my therapist was out of the country presenting a program in China. It seems that everything that could go wrong, did.
First, my hair started falling out in clumps as if I had had chemotherapy so I now have several nickel-sized bald places on top of my head. I emailed my therapist a wild note that my hair-dresser had suggested a wig and that ?I do not WANT a wig, I want my HAIR?.
Next came an acceleration of MSA symptoms. My muscle weakness grew worse, balance grew worse, vision problems increased, back pain became radically worse, and hips and knees started hurting more intensely. I started using a wedge pillow to raise my head and instead of snoring loudly all night, I would suddenly and very LOUDLY roar out a snore that freaked out the cat and awakened my husband, and stridor became so loud that I woke myself up.
Then, part of a filling came out and I had to go to the dentist to get it drilled out and refilled. Always my favorite past-time!
To top it all off, I woke up one night to the sound of huck, huck, huck and jumped (well, inched) out of bed to try to catch the cat before she left the hairball on the carpet. Alas, I was too late, and, since I did not have my glasses on and the room was dark, I stepped in it. Huck, huck, huck, YUCK!
I did meet with my psychiatrist each week while my therapist was gone. He is a psychoanalyst, mostly, and provided me with 2 really good sessions. This gave me plenty of fodder for my first visit back with my therapist today.
Despite all of this, I met with the finance committee for the Friends of the Library Group and provided valuable information. I had my Lunch Bunch outing and had a great time. I read several good books and started reading up on the topic of quantum mechanics, fluid dynamics, consciousness and the nature of reality. I met with an old friend I had known as a library customer for many years and discussed the theory of consciousness and quantum theory at Panera Breads. So, I was a busy little beaver while my therapist was away.
First, my hair started falling out in clumps as if I had had chemotherapy so I now have several nickel-sized bald places on top of my head. I emailed my therapist a wild note that my hair-dresser had suggested a wig and that ?I do not WANT a wig, I want my HAIR?.
Next came an acceleration of MSA symptoms. My muscle weakness grew worse, balance grew worse, vision problems increased, back pain became radically worse, and hips and knees started hurting more intensely. I started using a wedge pillow to raise my head and instead of snoring loudly all night, I would suddenly and very LOUDLY roar out a snore that freaked out the cat and awakened my husband, and stridor became so loud that I woke myself up.
Then, part of a filling came out and I had to go to the dentist to get it drilled out and refilled. Always my favorite past-time!
To top it all off, I woke up one night to the sound of huck, huck, huck and jumped (well, inched) out of bed to try to catch the cat before she left the hairball on the carpet. Alas, I was too late, and, since I did not have my glasses on and the room was dark, I stepped in it. Huck, huck, huck, YUCK!
I did meet with my psychiatrist each week while my therapist was gone. He is a psychoanalyst, mostly, and provided me with 2 really good sessions. This gave me plenty of fodder for my first visit back with my therapist today.
Despite all of this, I met with the finance committee for the Friends of the Library Group and provided valuable information. I had my Lunch Bunch outing and had a great time. I read several good books and started reading up on the topic of quantum mechanics, fluid dynamics, consciousness and the nature of reality. I met with an old friend I had known as a library customer for many years and discussed the theory of consciousness and quantum theory at Panera Breads. So, I was a busy little beaver while my therapist was away.
Thursday, September 17, 2009
Random Thoughts & Stray Quotations
These are some personal musings and quotations/truisms gathered over a decade of reading and thinking, not to mention those items sent to me over the Internet.
Is the glass half full or half empty? I say it depends upon whether you are looking down on the glass or up at it. If you are looking down, it is half empty, if you are looking up from the bottom, it is half full.
The universe is blowing don not get in the way.
Nothing needs to change in your life situation or the world in order for you to have peace of mind.
THE SENILITY PRAYER:
Grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones I do,
and The eyesight to tell the difference.
Always Remember: You don't stop laughing because you grow old,
You grow old because you stop laughing!!!
When you have come to the edge of all the light you know and are about to step out into the darkness of the unknown, faith is knowing that one of two things will happen: There will be something to stand on, or you will be taught to fly.
Inch by inch, life's a cinch; yard by yard life is hard
I did not have to let the terms of a disease define me. I could redefine the terms. (Michel J. Fox)
Life is uncertain. Eat dessert first. (Ernestine Ulmer)
You never know when a moment and a few sincere words can have an impact on a life. (Zig Ziglar)
Life is all about the moments shared with family and the people you loved that can never be taken away.
A man is but the product of his thoughts. What he thinks, he becomes.
~Mahatma Gandhi
Fear is just a feeling. Fear can never hurt you.
I?ve learned that one of my best traits is that I am resilient. And I have learned that fear is a normal reaction to danger. And I know for certain that panic is the enemy. So I sit where I am and try to keep it together.
(Janet Evanovich)
I had had drilled into me an unflinching attitude toward illness or weakness: Fight it. You can fight it, and you can win. To be weak is to fail; to let down your guard is to surrender; and to give up is to dismiss the power of your own will. (author unknown)
The fundamental flaw in all of this, though, is that it neglects something intrinsic to the complex real world and to complex real human beings. In fact, it is not necessarily true that everything can be conquered with will power. There are forces of nature and circumstance that are beyond our control, let alone our understanding, and to insist on victory in the face of this, to accept nothing less, is just asking for a soul-pummeling. The simple truth is, not every fight can be won. (From The Last Lecture by Pausch)
Computer user error: (from the Internet)
A young lady was having trouble with her computer. So she called the office geek over to her desk. He clicked a couple buttons and solver her problem.
As he was walking away, she asked him, So, what was wrong?
He replied, it was an ID ten T error. A puzzled expression ran over her face. What is that in case I need to fix it again?
He grinned and said, Haven?t you ever heard of an ID ten T error before?
No, she replied. Write it down, he told her, and I think youll figure it out.
She wrote: ID1OT
HEART CENTER MANTRA
I AM THE OPENNESS OF THE HEART...I AM THE FOCUS OF THE MIND...
I AM THE CONNECTION TO THE SOURCE...I AM ONE WITH THE DIVINE...
I AM THE GIVER....AND THE RECEIVER...
I AM ONE WITH ALL THAT IS...AS SO IT IS.
Is the glass half full or half empty? I say it depends upon whether you are looking down on the glass or up at it. If you are looking down, it is half empty, if you are looking up from the bottom, it is half full.
The universe is blowing don not get in the way.
Nothing needs to change in your life situation or the world in order for you to have peace of mind.
THE SENILITY PRAYER:
Grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones I do,
and The eyesight to tell the difference.
Always Remember: You don't stop laughing because you grow old,
You grow old because you stop laughing!!!
When you have come to the edge of all the light you know and are about to step out into the darkness of the unknown, faith is knowing that one of two things will happen: There will be something to stand on, or you will be taught to fly.
Inch by inch, life's a cinch; yard by yard life is hard
I did not have to let the terms of a disease define me. I could redefine the terms. (Michel J. Fox)
Life is uncertain. Eat dessert first. (Ernestine Ulmer)
You never know when a moment and a few sincere words can have an impact on a life. (Zig Ziglar)
Life is all about the moments shared with family and the people you loved that can never be taken away.
A man is but the product of his thoughts. What he thinks, he becomes.
~Mahatma Gandhi
Fear is just a feeling. Fear can never hurt you.
I?ve learned that one of my best traits is that I am resilient. And I have learned that fear is a normal reaction to danger. And I know for certain that panic is the enemy. So I sit where I am and try to keep it together.
(Janet Evanovich)
I had had drilled into me an unflinching attitude toward illness or weakness: Fight it. You can fight it, and you can win. To be weak is to fail; to let down your guard is to surrender; and to give up is to dismiss the power of your own will. (author unknown)
The fundamental flaw in all of this, though, is that it neglects something intrinsic to the complex real world and to complex real human beings. In fact, it is not necessarily true that everything can be conquered with will power. There are forces of nature and circumstance that are beyond our control, let alone our understanding, and to insist on victory in the face of this, to accept nothing less, is just asking for a soul-pummeling. The simple truth is, not every fight can be won. (From The Last Lecture by Pausch)
Computer user error: (from the Internet)
A young lady was having trouble with her computer. So she called the office geek over to her desk. He clicked a couple buttons and solver her problem.
As he was walking away, she asked him, So, what was wrong?
He replied, it was an ID ten T error. A puzzled expression ran over her face. What is that in case I need to fix it again?
He grinned and said, Haven?t you ever heard of an ID ten T error before?
No, she replied. Write it down, he told her, and I think youll figure it out.
She wrote: ID1OT
HEART CENTER MANTRA
I AM THE OPENNESS OF THE HEART...I AM THE FOCUS OF THE MIND...
I AM THE CONNECTION TO THE SOURCE...I AM ONE WITH THE DIVINE...
I AM THE GIVER....AND THE RECEIVER...
I AM ONE WITH ALL THAT IS...AS SO IT IS.
Friday, September 11, 2009
Dreams, Nightmares, Night Terrors…and More
It started on a ranch in
I spend most of the night talking, frequently waking up myself and my husband. A number of times I have started fighting the bed and he has had to hold me and reassure me that all is OK. Last night I woke up from a series of terrors that continued on and on so I finally got up and read some while drinking a glass of milk. After that I was able to sleep. I still had plenty of dreams and lots of talking but nothing frightening.
There was one incident about two years prior to the
Last night was one of the worst. The terrors would not stop. I became so frightened I was almost ready to call my psych and ask for some relief. I thought for sure I had lost my mind and had developed schizophrenia (which my mother had had). These dreams are SO REAL that they make reality pale in comparison.
Sunday, August 30, 2009
MEMORIAL CELEBRATION
DRESS IS CASUAL – NO SUITS OR TIES, jeans ok
SEATING: My Husband and his family (along with whomever else he chooses) and four couples close to us should be seated near my husband
SPECIAL INVITEES: a dozen close friends of mine whom I eat lunch with on a regular basis as well as all of the people I have known over the years with an open invitation to all library users. Also important are people my husband has known from childhood or work. In addition, any of the people I knew growing up or whom my brother thinks would like to attend
LOCATION:
FIRST CHOICE: The site where we used to live on the river, with half my ashes spread upriver just before the service (regardless of site, ashes still to be spread from old bridge gazebo along the river)
SECOND CHOICE: The library – either in meeting room or study area down length of building, using sitting areas, seating can be casually arranged with tables
THIRD CHOICE: A park along the river in the City where a gazebo is available for speakers and singers
INTRODUCTORY PRAYER & REMEMBRANCE: by former police chief of City
INTRODUCTION AND FIRST REMEMBRANCE: Past President of Library Board and Friends
HYMN: CLIMB EVERY MOUNTAIN sung by members of the library secretary’s family
NO SERMON: TIME FOR FRIENDS TO PROVIDE ANY REMEMBRANCE THEY WISH
FINAL REMEMBRANCE & BENEDICTION: my brother
HYMN: LET THERE BE PEACE ON EARTH (sung by everyone and members of the above family)
THE REST OF ASHES ARE TO BE SPREAD OUT FROM THE SEA SPRITE AT MY BELOVED UTILA FROM
How has MSA affected my life?
For the most part, so far, I am very lucky as I can continue on with what looks like a “normal” life to most people. I can still drive, talk on the phone, walk around the house and far enough to go from a handicapped spot at the grocery to inside for a motorized scooter. I do admit, however, there are a few things that I “feel sorry for myself” over their loss.
Walking along the beach with my husband, holding his hand as my toes dig into the wet sand. Looking for shells and bending over to examine some more closely.
Losing out on the opportunity to climb the cliff dwellings at
Going to a shopping mall and strolling along stopping at this shop or that one, just looking at things.
Taking a sunrise walk with my dogs through the neighborhood. I would get up at 4:30, walk the dogs until 5 or 5:15, take a shower and be at work by 6 AM. It was beautiful listening to the mockingbirds wake up and sing to the sun.
Walking the trail along a river at a county park where we used to live
Working at “my” library. I miss the people, the easy camaraderie, the ordering of books and other materials, helping people locate information, walking back in the stacks to put my hands on the one book that answers someone’s needs. I admit, I don’t miss the few truly nasty people that one encounters in any public place – people who argue and lie just because they want to get away with breaking the rules.
Working with the City government – the City Manager and other Department Heads. I still have lunch every 2-3 months with one I have known for over 20 years. We sat on many committees together and have become friends, even more so now that I am no longer employed.
The loss of my muscle strength so I am unable to practice yoga as I used to, although I do as much of the stretching and strengthening as I can. The stiffness appears to be winning, however, although I am going to continue fighting it.
I realize that I am very fortunate to not be as far along on this road as some other victims of this disease, and I am grateful for that. I cannot imagine the hardship on the caregivers as the diseases progresses. I have a very tight Advanced Care Directive in order to not put my husband through such an ordeal while he watches me suffer and slip further and further downhill.
Wednesday, August 26, 2009
Day by Day, Moment by Moment – Living with MSA
Living with MSA is like rolling the dice. You never know what you are going to come up with and it usually is not the same thing each time. Then, sometimes a third die gets thrown in and everything goes to hell in a handbasket. Some dice produce good moments and some produce really bad moments – but they are just moments. I can’t change those things that are happening, but I can change the way I look at them. I just have to remember to play the cards I am dealt with as much dignity and grace as I can. And, there is one advantage – I no longer feel I have to hang around with negative people whom I don’t like. I can just say “no”.
Having a good sense of humor is helpful, also. Sometimes I get up and can only shuffle (well, I’m up!) and it helps to remember Tim Conway in his “old man” skit. Then, maybe the very next moment, my knees suddenly fly out of my control and I look like a prancing pony that is double jointed. As I said, it helps to be able to laugh about these things.
This disease really is no fun. You truly do not know if you are going to be able to get up, are you going to be able to shift into your wheelchair, are you going to be able to go to the bathroom, are you going to fall (again)?, are you going to be able to speak or to swallow. Can you eat? Can you drink water? Can you breathe? It does no good to be angry or to feel sorry for myself. All that would do is cause me more harm. So, I try to roll with the punches and keep "the rubber side down" (a motorcyle phrase meaning to stay upright). Life is a strange, beautiful, and frightening place full of wonder, awe, fear, and pain. But it is LIFE, and I choose to LIVE a life as full as I possibly can for as long as I can.
I try to emphasize the good moments: to smell a rose, to hear the song of a bird, to read a funny joke or book, to watch a funny movie on TV. All of these distractions can help me mentally survive those not-so-good moments. If the time comes when I can no longer smell, or see, I will try to visualize and remember those pleasant experiences. I will try to go deep inside myself and see what I can do. If I can’t visualize and remember those special moments, I don’t know if I could stay sane. I can’t imagine being locked into my own head with no way to communicate with anyone – no way to escape myself. Then I look at Stephen Hawking. All he can move are his eyelids and that is how he communicates. There are always people who are worse off than I am. I have to keep reminding myself that.
I also try to always have something to look forward to. My husband and I eat lunch out together almost every day, but I try to have lunch with a friend from the City where I worked at least once a week. I have my Lunch Bunch, as well. This is such a close-knit group from all departments – finance to public work to library – but we have learned what we have in common. Most of us would not go out if this was not pre-arranged. I organized it, invited the people, made arrangements with the restaurant and send out emails the Monday before we meet as a reminder. We all laugh and share stories, talk about grandkids (those who have them), and just plain have a good old time. I am proud of myself for putting this group together. One member said this is the only time she meets with other people and this gives her something to look forward to.
In addition to weekly things to look forward to, my husband and I try to have a trip planned in two or three months so I can think of where we are going, look for RV parks to stay in, and enjoy the planning stage. This helps. Knowing that soon I will be seeing something new or different than just the neighborhood keeps me interested in the future.
I am happy with my life now – happy and sad at the same time. I believe I lived life a little more intensely now than before this diagnosis. I take time to study my environment when I am outside – even when sitting out in the back yard. I find joy in little things and appreciate nature in all its glory.
Monday, August 24, 2009
To Tell or Not to Tell – and When?
There have been a lot of posts lately on how people treat those with fatal diseases. Best friends stop calling, people you did not know come through to provide support and assistance, some people feel awkward and don’t know what to say. For the most part, these posts have been for patients who were already at the terminal phase of the disease.
But what about those, like me, who have a slowly progressing disease but are still noticeably disabled in several ways. I talked this problem over with my therapist. But I was not thinking of friends not calling or coming over, I was thinking of people pitying me. I did not want pity. I want them to still see me as “me”. I wanted them to have the knowledge so when my speech slurred, when I could not find a word, when I fell – they would know why and not wonder what was wrong. I chose to tell my staff and the City Manager and told him he was free to forward it on to the rest of the management staff if he saw fit. He did, and I am glad. Since that time, I have told my family and most of my close friends. I made up a letter starting with: “I have MSA” and then explaining what I meant. So far, everyone has been supportive and treated me as they always have. Perhaps because they have been given a long-term understanding and they can observe the deteriorations yet still see me laughing and joining in on conversations, they will not feel any anxiety when the time comes for me to enter Hospice.
My high school is having its 45 reunion next year and I hope to go. I sent the “I have MSA” email to the person in charge with the authority to send it out however she saw fit. By that time, I will almost certainly be in a wheelchair or a scooter. I called a couple I had been close with in high and they said they are going to hold off until the 50th and I had to say I could state that I would not be able to attend that one.
Reading those posts about the loss of old friends when you fall critically ill has made me think about that problem. I hope I don’t have it, but I believe I know quite a few who will be there on a regular basis to sit with me.
Depression or Sadness?
I have struggled with and suffered from depression and anxiety for my entire life. With the help of the universe’s best clinical psychologist I am finally almost free of childhood trauma, and with the help of some good pharmaceuticals from my psychiatrist I am on an even keel (ain’t drugs good!).
When I first started therapy with my psychologist I had already started the doctor train, as I call it. I had MRIs, C-scans, Ultrasounds, Dopplers, Heart catherization, Right-lung pressure, Urinary Function Test, Pulmonary Function tests, Sleep apnea tests, X-rays, Cameras put down my esophagus and up from my groin to my heart, a tiny computer implanted in my esophagus, and I don’t know what all else. Both my psychologist and my psychiatrist have taken an active role in helping me with coming to terms with MSA. I expect my psychiatrist knows more about MSA than many neuros. He had read up on it on his own and I also take in copies of new journal articles for him. In addition, he keeps track of my many prescriptions, not just his. He cross-checks everything and helps me figure out what does what. My PC also goes over it so I am fortunate.
Both my PC and my psychiatrist are somewhat concerned about liver or kidney damage since all the drugs impact those 2 organs, but all of my blood tests come back OK.
My neuro sent me to my nephrologist to see about my blood pressure. He looked at my month’s worth of taking pressure lying down and standing up and told me not to worry about my blood pressure, that it was not too high to damage my kidney. Go out and enjoy life. He already knew I had MSA and had read an article on it. Before he left the room he said he was not going to have me reschedule but if I ever want to come in and talk to him he would be glad to see me – then he gave me a big hug and an understanding look.
My pulmonologist looked over the results of my PFT and my latest apnea test and said that I slept better without the machine than with it. I gave him a copy of what MSA is and he read it. Then he did the same thing as my nephrologist – he gave me a big hug, an understanding look, and said I don’t have to come back unless I want to. I would always be welcome. Good docs!
What does this have to with depression or sadness? Well, having experienced depression I know what it feels like. When I am in my psychologist’s office what I talk about is mostly sadness and sometimes I “leak” tears. He has said sadness is a very understandable and human emotion when faced with something like MSA. He also has said I have coped with this dreadful disease better than anyone else he could think of. I have kept smiling and laughing (most of the time) and tell people that I am “OK” with it. When I feel myself starting to spiral down from sadness, he has taught me many tools to help bring myself back up. Meditation, imagery, counting breaths, yoga, breathing deeply and letting my breath out slowly, listening to soothing music, etc.
So, I will take sadness over depression any day – and I do know the difference. My favorite, however, is joy of living. Living a life full of friendships, a loving husband/caregiver, a fulfilling career, and at least one social activity out of the house every week. What could be better?
Sunday, August 23, 2009
What is our purpose for being alive?
I realize this a very deep philosophical question and everyone has his or her own private opinion. Mine, however, probably overlaps with most folks.
I believe first of all, we must “do no harm”. We should neither verbally nor physically abuse and living creature. All of us deserve to be treated with dignity and respect. I feel we should greet everyone we meet or pass by with a smile. Our manner should be welcoming. Now, I realize, that some people have no respect for anyone and these folks need to be watched carefully – but that does not mean they can be abused physically. I have mixed emotions about some criminals and some crimes are so heinous that the perpetrators need to be dealt with firmly and never be allowed to walk out freely into society. This would eliminate the opportunity for them to do the same thing to someone else. Child sexual predators and abusers along with rapists are two such criminals that have lost my ability to think of them with respect. Those who prey on the elderly and who commit premeditated murder are another couple of categories of criminals who should not ever be allowed back in society.
Regarding greeting others with a smile and an open face, I feel that many arguments between people could be avoided if everyone followed that precept. I used to tell my staff at the library to “put steak in your voice”. That is a dog training term and works well with many animals in addition to dogs and people. By this, I mean, speak softly and warmly, always be open to listen to someone else’s story. After all, they would not be telling it if it was not important to them. Librarians are the bartenders for those who do not drink. We hear many stories of divorce, children on drugs, a sick spouse, being evicted from their apartment or losing their job. When someone would come into the library already angry and in a bad mood, they could frequently be diverted by a smile and a “how can I help you?”. It is always easier to avoid a fight than to try to win one. Compromising with others also goes a long way toward soothing tempers.
Serving others is also part of my belief system. Providing love and support to those in need is a high priority. Those caregivers on the Shy-Drager support site for MSA sufferers and caregivers know what I am speaking of. So many have selflessly taken care of sick loved ones, and sometimes sick relatives they did not get along with or care about but they still provide the loving care that is needed. These caregivers KNOW what LIVING is. Living is not only having fun, laughing, and seeing friends, it is also about caring for others while maintaining a sense of humor and treating the sick with respect and dignity. These caregivers deserve our profound thanks for the work they do. I believe it is harder to be a caregiver than it is to be a patient. Bless them all for their dedication to serve.
Saturday, August 22, 2009
Utila dive trip, day by day summary
Sunday, May 24, 2009 3:09 PM
| Somehow I brought the wrong housing for my camera. I may rent one from the dive master on the boat for the rest of the week. It is so wonderful to be back underwater again. Floating and soaring and reaching out to embrace all of the creatures there. My Keeper is a dive instructor from |
Tuesday, May 26, 2009 2:53 PM
| Litle Bight again. Saw 2 seahorses and a conch with his foot and eyes out, crawling in the sand. Martin is the best ever. For my safety stop I just lay in the sand at 15' and enjoyed the moments. Two good sand dives today. I went back to "moon walking" with my hands and it was easier going. |
Wednesday, May 27, 2009 9:18 PM
| Rented camera, maybe good photos. Banged up - legs weak, tired, shaky. Knee does not want to support me. Diving is great. Great Keeper. Spider bite needs to be cut open and packed with antibiotics. One of those bad spiders. Sunburned. Having a great time. Went to see our dear boat captain, Willy. He has cancer and is off work for several months. His son "little" Willy (4 times the size of his dad) is captain in the meantime. We hope for the best with Willy. Cried together. |
Thursday, May 28, 2009 9:28 AM
| Last night we had a 7.3 earthquake about 80 miles NE of us. It shifted the Lodge off its pilings a bit and the entire structure now lists eastward. The pier is pulled away from the wall and doors don't want to open. It happened at 2:24 AM (this time CST) and we were up and too stressed to sleep. This morning I ache all over. It was very scary. |
Thursday, May 28, 2009 2:04 PM
While we were diving there was another earthquake. We heard the rumbling underwater and saw the sand shifting. Then there was a tremendous amount of sand thrown out of the sand chutes. An interesting day. I feel a nap attacking me for this afternoon so I will skip the afternoon dive (as usual). This was my last dive.
| Despite earthquakes (including a 4.1 while we were diving) I had a beautiful last dive this morning. I frightened my keeper, without meaning to. I settled down into the sand and felt the ebb and flow of the surge and started timing my breaths with it. I would exhale and my body would surge back towards shore, then I would inhale and my body would flow out toward the sea. I stayed there, meditating totally one with my breath and the sea. After a few minutes Martin, my keeper, came over and asked if I was OK and I said OK He said he was scared that I was very ill. I apologized and said I was just meditating. It was really, really wonderful. |
Travel Now!
best if you are in a hurry. In fact, I am going to put it here as well to make it easier on those of you who stumble across my blog:
Life is good right now. I can still walk short distances (but will use the wheelchair in the gardens). Although I am having some trouble swallowing and breathing, for the most part I am able to live a somewhat normal life. This is what is called – Living While Dying. Have fun. Enjoy life in all its glory. SEE what I am looking at, FEEL what is touching me, HEAR the songs of birds, SMELL the scent of the flowers. Laugh, love, and, sometimes, cry.
Back in August, 2008, when I finally found a neuro who
diagnosed me with MRIs and physical tests of autonomic reactions, etc., she told me that if there were any places I wanted to travel, I should go this year – not wait.
So, here we were. We had traveled to
First I wanted to go to
So, what did we do to accomplish some of these goals? We went out and bought a used 24’ motorhome with less than 10,000 miles on it for only $15,000. It was from a foreclosure. We had a motorized lift for my wheelchair installed and my husband had a motorized lift for his BMW motorcycle installed at the back of the vehicle.
Part of our “family”, our cat, Tiki, traveled with us. She had never been anywhere in a vehicle other than to be crated to the vet so we had no idea how she was going to react. She was a trooper, however. During the day, while we were driving she slept on the floor where it was warm between our seats. When we stopped to eat or to walk around at a rest area, she hid under the table on or in her circle scratching post. She HATED the sound of the air brakes of the big trucks at the rest area. We also discovered that she was afraid when she saw the trees moving out the window – trees are definitely NOT supposed to move. So we shut the blinds. We had to take our showers in the RV parks because we had her kitty litter box in the shower! When it was cold in
So we set off for
Now, while we were out there anyway, we decided we would also go to the
In May we flew to Utila. I cried when the plane touched down on the runway. Two of my closest friends live there and since the Utila Lodge, where we stay, has only 8 rooms and we had spent so many weeks there, it is truly a homecoming when we arrive. The staff greets us with hugs and tears. We have seen tragedy and love there and shared so many adventures with them. This year a 7.1 earthquake shook us up at 2:24 AM. It was very frightening as I had never been in an earthquake. It did some damage to the Lodge, which is built out on stilts over the water, and some minor damage to some of the homes. The stores had all their shelving fall over but no one was hurt. A nail store had 8,000 nails on the floor that had to be resorted and put away. I bet it took days to pick them all up! The next morning, while diving, there was another 4.1 earthquake while we were underwater. You could feel/hear the shockwave and the sand lifted up and shot out of the sandchutes in a horizontal line. It was pretty interesting.
In October this year, hurricanes permitting (we live in
to have a hurricane hit our house while we are gone), we are going on a sculpture garden tour. We are going to revisit
So, there is my bucket list – the places I intend to see while I can enjoy them. Life is good
right now. I can still walk short distances (but will use the wheelchair in the gardens). Although I am having some trouble swallowing and breathing, for the most part I am able to live a somewhat normal life. This is what is called – Living While Dying. Have fun. Enjoy life in all its glory. SEE what I am looking at, FEEL what is touching me, HEAR the songs of birds, SMELL the scent of the flowers. Laugh, love, and, sometimes, cry.
My Journey on the MSA Road
This is a list of how I have progressed along this path. I could wish it were not taken, but I was not given that choice.
It began with a combination of ailments in the late 1990s and has grown gradually over the years. I am fortunate, my MSA is a slow progressor and not an overly avid pitbull. I am afraid I am going to just list these problems and not write prose. I believe it makes more sense that way, and for those not interested in the disease development, they need not tarry here but can skip right on over to the next post.
Late 1990s
? Occasional incontinence (better after surgery)
? Constipation followed by loose stools and fecal incontinence
? Abdominal pain/GERD and UPR
? Blood pressure changes
? Blepheritis/Sjongrens with severe dry eyes and mouth
? Headaches/migraines
? Fatigue
? Choking when swallowing liquids
? Chronic, but intermittent hoarseness
2000-2004
? Balance instability, frequent falls
? Fatigue worsens
? Frequent sighing
? Knocking things over
? Dropping things
? Depression and anxiety
? Body temperature of 97.1-97.5 became normal
2004-2008
? Hyperventilation syndrome
? Extreme muscle pain when performing any exertion
? Vertigo when trying to stand or when leaning over
? Depression worsens ? now taking Celexa, Elavil, and Seraquel
? Breathing problems, sometimes gasp for another breath right after a first breath, sometimes run out of breath before I can finish a short sentence of only 3 words (passed 3 PFTs
? LOUD snoring
? Confusion when faced with too many choices
? Difficulty emptying bladder on first try, go again in 20 minutes and empties
? Cane or scooter needed for anything other than very close walks
? Difficulty turning over in bed
? Unable to lie on back, thick mucus blocks my airway
2009
? Stiff shoulders ? difficult to put on seatbelt
? Stiff knees, elbows, hips
? Difficulty in pulling a shirt over my head
? Difficulty drying myself after a bath
? Intense shoulder and neck pain, resulting in migraines many times, keeps me awake
? Sometimes I can say only one word at a time and speak haltingly. Speech is sometimes jerky, staccato, breathy, irregular, or imprecise
? Hallucinatory nightmares (night terrors), now taking Depakote to treat it
? Wake myself up frequently by talking in my sleep, also sleepwalking
? Diuresis, up every 2 hours every night and every hour or two during the day
? Confusion - difficulty understanding complex instructions, written or verbal
? Difficulty following a series of instructions...or when given too many choices
? Difficulty processing and responding to questions, takes time to answer or respond
? Difficulty urinating when I feel the urge
? Cold feet requiring heavy socks and extra blankets on feet at night
? Problem thinking of dinner, what to fix, when it is time ? husband has to remind me and tell me what he wants and then I can fix it
? OH started back up, several occasions ?grayed out?, frequent dizziness
? Reading/visual problems, words and letters don?t make sense after a while of reading
? Water and food more frequently gets caught in throat, valve that open and closes for swallong/breathing no longer functions correctly
It began with a combination of ailments in the late 1990s and has grown gradually over the years. I am fortunate, my MSA is a slow progressor and not an overly avid pitbull. I am afraid I am going to just list these problems and not write prose. I believe it makes more sense that way, and for those not interested in the disease development, they need not tarry here but can skip right on over to the next post.
Late 1990s
? Occasional incontinence (better after surgery)
? Constipation followed by loose stools and fecal incontinence
? Abdominal pain/GERD and UPR
? Blood pressure changes
? Blepheritis/Sjongrens with severe dry eyes and mouth
? Headaches/migraines
? Fatigue
? Choking when swallowing liquids
? Chronic, but intermittent hoarseness
2000-2004
? Balance instability, frequent falls
? Fatigue worsens
? Frequent sighing
? Knocking things over
? Dropping things
? Depression and anxiety
? Body temperature of 97.1-97.5 became normal
2004-2008
? Hyperventilation syndrome
? Extreme muscle pain when performing any exertion
? Vertigo when trying to stand or when leaning over
? Depression worsens ? now taking Celexa, Elavil, and Seraquel
? Breathing problems, sometimes gasp for another breath right after a first breath, sometimes run out of breath before I can finish a short sentence of only 3 words (passed 3 PFTs
? LOUD snoring
? Confusion when faced with too many choices
? Difficulty emptying bladder on first try, go again in 20 minutes and empties
? Cane or scooter needed for anything other than very close walks
? Difficulty turning over in bed
? Unable to lie on back, thick mucus blocks my airway
2009
? Stiff shoulders ? difficult to put on seatbelt
? Stiff knees, elbows, hips
? Difficulty in pulling a shirt over my head
? Difficulty drying myself after a bath
? Intense shoulder and neck pain, resulting in migraines many times, keeps me awake
? Sometimes I can say only one word at a time and speak haltingly. Speech is sometimes jerky, staccato, breathy, irregular, or imprecise
? Hallucinatory nightmares (night terrors), now taking Depakote to treat it
? Wake myself up frequently by talking in my sleep, also sleepwalking
? Diuresis, up every 2 hours every night and every hour or two during the day
? Confusion - difficulty understanding complex instructions, written or verbal
? Difficulty following a series of instructions...or when given too many choices
? Difficulty processing and responding to questions, takes time to answer or respond
? Difficulty urinating when I feel the urge
? Cold feet requiring heavy socks and extra blankets on feet at night
? Problem thinking of dinner, what to fix, when it is time ? husband has to remind me and tell me what he wants and then I can fix it
? OH started back up, several occasions ?grayed out?, frequent dizziness
? Reading/visual problems, words and letters don?t make sense after a while of reading
? Water and food more frequently gets caught in throat, valve that open and closes for swallong/breathing no longer functions correctly
Death
This is strictly my opinion and I hope I am not stepping on anyone?s toes. This is a very controversial subject.
Death is not an enemy to be feared or fought against. Death is a friend who frees our spirit soul from the physical self that we call ?real?.
I was born with only one kidney and suffered numerous kidney infections as a child. In my twenties I learned I had kidney disease and the doctor said, based on the condition of my kidney at that time, I would like to around 64 or 65. In my twenties I also developed Rheumatoid Arthritis. This body I carry around has suffered for 40 years now and my spirit soul is ready to be free to rise up, following the beautiful white light to live in peace and love.
Sometimes, when I am able to get into a deep meditative state, I have seen and been enveloped in that light and there is nothing to fear. I come back, at peace with myself and the world around me. That place of ?no thing? is a beautiful place free from anxiety and sadness.
Death is not an enemy to be feared or fought against. Death is a friend who frees our spirit soul from the physical self that we call ?real?.
I was born with only one kidney and suffered numerous kidney infections as a child. In my twenties I learned I had kidney disease and the doctor said, based on the condition of my kidney at that time, I would like to around 64 or 65. In my twenties I also developed Rheumatoid Arthritis. This body I carry around has suffered for 40 years now and my spirit soul is ready to be free to rise up, following the beautiful white light to live in peace and love.
Sometimes, when I am able to get into a deep meditative state, I have seen and been enveloped in that light and there is nothing to fear. I come back, at peace with myself and the world around me. That place of ?no thing? is a beautiful place free from anxiety and sadness.
Thursday, August 20, 2009
Mershanti - the Sea Lover
Scuba diving is such an enthralling experience. Everywhere you look on a coral reef, life abounds. Many people ask to see the big things: turtles, rays, midnight parrot fish, sharks, etc., but the tiny things are what attract me the most. To spend 20 minutes with a sea horse is a mystical experience. Soaring in the surge with 3 squid is sublime. Peering under a tiny ledge under a coral mound, you can spot cleaner shrimp who will come out and climb on your hand if you are very still. There are “cleaning stations” where large fish go to have small brightly blue-striped cleaner fish. These little fish go inside the mouths and gills of large fish and clean them of parasites. We came upon a 5’ barracuda getting his face and teeth cleaned. We approached very slowly and he stayed until the cleaning was finished.
Every breath is a part of life, a meditation of breathing in and breathing out, listening and feeling every breath. It is a total escape from life as usual. You float, weightless and soar in the surge as the waves wash over you. You time your breath to the waves and truly become a part of this living sea.
The number of fish and the colors and patterns are truly amazing. You can hover to watch a green moray swim from one lair to another. You can see a pair of angelfish swim side by side. A gang of blue tang, hundred of them, come upon you and swim all around you as they clean the coral of algae. There are large white-spotted eagle rays that fly by as you swim along the reef. They pay us no mind, unless someone chased them. Their giant “wings” move them effortlessly through the water. On a sea mound (an underwater mountain) you see Atlantic spade fish, jacks, and many other varieties of fish in abundance.
From the boat, on the way to a dive site, a pod of dolphin surf the bow wave. One time a pod stopped when the boat captain turned off the engine and we all slipped into the water. The dolphin mimicked our moves, swam between our legs, all around us, playing for over 20 minutes. A truly moving experience as these were wild dolphin, not kept penned up for the amusement of humans, but with humans because they chose to be.
Finally, there are the whale sharks. They are massive, up to 45 feet (longer than our boat). We are like gnats to them. Floating on the surface, watching one swim right by you is an awesome. This is a fish that is longer than a school bus and whose head can be 8 feet wide. Sometimes, a youngster will swim by and stop to look you in the eye. You can almost hear him thinking: “what kind of strange fish are these?” It is a privilege to be in the sea with them and you come away humbled by the experience.
Living while Dying - what do I mean?
Many people go through life like an ox walking around in circles, grinding corn. They are on automatic pilot; trudging to work, to home for dinner, TV, sleep and yard work on weekends followed by sports. They not only do not stop to smell the roses, the don’t even see them.
Think of a rose. Smell it. Every variety has a different and unique aroma. Feel a petal. It feels like silk between your fingers.
Look at the perfect symmetry of the petals. See the pollen in the center. To really experience a rose, you must do all of these things. I had never experienced a rose until 7 years ago. I was that ox, keeping my nose to the grindstone until I was in my mid fifties.
Consider a bird – from the majesty of its beauty in flight to the plumage you can study when it is perched. Hear the songs of the birds. They are all different and can be easily identified from the cheap of a cardinal, to the raucous scream of a jay, to the coo of a dove, and the intricate songs of the mockingbird. Look at the ungainliness of a pelican on land and compare that image with the soaring and swooping magnificent bird gliding just over the waves. Even a buzzard, reviled for its looks and it place in the ecosystem, is beautiful in flight. And despite our revulsion of its “duty”, think what our streets and highways would be like without them. Without scavengers, dead carcasses would be piled up along the sides of the roads.
The horse: a majestic and strong animal, capable of hurting and killing a human yet they bond with us and allow us to lead them around by a piece of string, to ride them and bid them to go where we want even if the horse does not want to go there. And the smell of a horse – a clean, fresh scent of live animal. Touching a horse’s nose and between its front legs feels like the silk of a rose. Soft and velvety.
We used to live in the country, along a river. For a while we kept our horses at home with us and I would come home every evening and ride my horse in the woods and along the river, dodging cypress knees and uprooted trees. We road through miles of undeveloped swampland, often knee deep in water.
When I walked along the river I would take time to hear the bird songs, the soft sound of the slow moving river, sound of small insects and of small animals moving about in the grass. In one particular spot there were 2 oak trees, a cypress and a tree which I could not identify growing out of one root-ball. I would sit and quietly meditate while “seeing” the trees. The smell of the swamp was also present - a musty, earthy smell.
Think of a rose. Smell it. Every variety has a different and unique aroma. Feel a petal. It feels like silk between your fingers.
Look at the perfect symmetry of the petals. See the pollen in the center. To really experience a rose, you must do all of these things. I had never experienced a rose until 7 years ago. I was that ox, keeping my nose to the grindstone until I was in my mid fifties.
Consider a bird – from the majesty of its beauty in flight to the plumage you can study when it is perched. Hear the songs of the birds. They are all different and can be easily identified from the cheap of a cardinal, to the raucous scream of a jay, to the coo of a dove, and the intricate songs of the mockingbird. Look at the ungainliness of a pelican on land and compare that image with the soaring and swooping magnificent bird gliding just over the waves. Even a buzzard, reviled for its looks and it place in the ecosystem, is beautiful in flight. And despite our revulsion of its “duty”, think what our streets and highways would be like without them. Without scavengers, dead carcasses would be piled up along the sides of the roads.
The horse: a majestic and strong animal, capable of hurting and killing a human yet they bond with us and allow us to lead them around by a piece of string, to ride them and bid them to go where we want even if the horse does not want to go there. And the smell of a horse – a clean, fresh scent of live animal. Touching a horse’s nose and between its front legs feels like the silk of a rose. Soft and velvety.
We used to live in the country, along a river. For a while we kept our horses at home with us and I would come home every evening and ride my horse in the woods and along the river, dodging cypress knees and uprooted trees. We road through miles of undeveloped swampland, often knee deep in water.
When I walked along the river I would take time to hear the bird songs, the soft sound of the slow moving river, sound of small insects and of small animals moving about in the grass. In one particular spot there were 2 oak trees, a cypress and a tree which I could not identify growing out of one root-ball. I would sit and quietly meditate while “seeing” the trees. The smell of the swamp was also present - a musty, earthy smell.
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