I was getting cocky. I had gone one and a half years, ever since I had finally found a neuro who diagnosed me and got me on various medications, including Florinef, Midodrine, Neurontin, and others. Oh, sure, I had fallen back onto couch when trying to get up and had stumbled but always caught myself until. Until Last night when I was sitting at the kitchen table reading a large print book resting on the table. The next thing I knew, I was going down. In a merger of slow and fast motion, my head hit the cabinet, my right elbow hit the table leg, my left arm hit the leg of the cabinet, and both knees were skinned and sore.
My husband came running to ask what had happened and all I could say was that I fell. Up until this point, he had not really grasped what MSA was and how it could suddenly make you fall flat on your face while sitting or standing. We had a good talk about it, then, and now he does understand.
MSA is a sneaky little devil. You can go along and think all is hunky-dory and the next thing you know you are flat on your ass. When I go back to my neuro next month I expect a change in meds.
In addition to the MSA factor, I also recently suffered the third bout of stomach virus in one and a half years. Yes, I had the flu shot, both of them. But I went 30 hours unable to keep any fluids in me. Even a tbs of water took the express route and out, bypassing my kidney. This is bad, for I also suffer from kidney disease and have only one kidney.
Last week, when I was talking with my therapist, I told him I was tired and just ready to give up (I am not always thinking of being positive, I am only human). He said he could totally understand. I was dealing with a lot of hard stuff and it is bound to get me down from time to time. It made me feel so much better. It is a struggle to always be up and positive; sometimes I just want some sympathy for how badly I feel.
So, I am back on track, sorta, waiting to see my neuro. If I keel over again I will call and go in early. It is a very unpleasant feeling to suddenly just fall over or out of a chair. I would rather not do it again.
Monday, January 18, 2010
Monday, December 28, 2009
The Importance of Learning to Swim
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.
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.
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.
Subscribe to:
Posts (Atom)