LIVING WHILE DYING -- A MODEL FOR US ALL!

LIVING WHILE DYING

James R. Fisher, Jr., Ph.D.
© December 4, 2009

REFERENCE:


Mary is someone I have known for many years. She was director of the Temple Terrace Library in Temple Terrace, Florida, a suburb of Tampa, Florida since the 1990s. Quiet, dignified, private, she was a human dynamo full of ideas and grace with the executive skill to make the branch library one of the busiest in Hillsborough County. She did it with love, devotion, dedication, and as it turned out, with the burden of declining health.

Mary has MSA. The acronym stands for “Multiple System Atrophy," a degenerative neurological disorder for which there is no cure. MSA is associated with the tectonic degeneration of nerve cells in specific areas of the brain. The disease causes problems with movement, balance and autonomic functions of the body, things we take for granted, such as bladder control.

The cause of the disease is unknown and no specific risks factors have been identified. Around 45 percent of cases occur in women with typical age of onset in the full flush of their productive lives, or in their 50s or early 60s. Such is the case with Mary.

Mary retired from her directorship, and went through a period of understandable emotional as well as physical difficulty in accepting the cross she has had to bear.

One day I ran into her at the library, and she said, “Jim, I’d like to get on the Board of Directors of the Friends of the Temple Terrace Library.” She was tired of nursing her disease and wanted to again be productive. I could see in her eyes the pain behind the passion and resolve. But it was only later that I learned what an ordeal ordinary daily life had become for her. A brave face has no room for self pity.

Since then, she has been an active member of that board. Thanks to her contributions, taking an active role on several committees, we are moving forward more efficiently. She is the most positive person I know, the most upbeat with a smile and a gentle laugh that melts you.

Mary sent me her "Time, MSA, and ME" that follows. I asked her if I could publish it. She said, “Yes, by all means.” Incidentally, Mary has a blog. Check it out www.mershanti.blogspot.com to learn more about Mary, the disease, and what others suffering MSA are doing. You will find they are living while dying, while, unhappily, many of us are dying while not finding time to live.

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TIME _ and MSA _ HAVE MADE A CHANGE IN ME

Mary Satterwhite
© December 4, 2009

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.

Mary