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.
Monday, October 26, 2009
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.
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