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Guest Column

Promise of peace is close by as life slowly slips away

By Suzanne Cizek Moore
Published February 15, 2008

I was given a silver wishbone strung on red thread. The card read, "Put this on and make a wish. When the necklace breaks, your wish will come true."

My wish was easy. I am 48 and have a rare mitochondrial disease. It is chronic and progressive. I will die from it.

I was always a skinny kid. Mom worried about me. Every morning, she lined up seven sandwiches on the counter: two each for my brother and me, one for each of my three sisters. But I never ate much.

We didn't realize that was a symptom. At 15, a routine physical diagnosed a mitochondrial disorder, an amazing catch for the time. A more precise diagnosis came two years ago.

My disease is called MNGIE, short for mitochondrial neuro gastro-intestinal encephalomyopathy. Fewer than 200 cases have been diagnosed. The mitochondria are the spark plugs of the cells. MNGIE attacks every part of the body.

Despite the disease, I've lived a fairly normal life. For the past 14 years I have lived in a condo in Palma Ceia. Six years ago, I married my husband, Rick, and soon after the symptoms worsened.

Now I am a young woman in an old woman's body. Day by day, I lose weight and strength. My eyes are now paralyzed, and I am legally blind. My hearing has diminished, and I can only walk short distances with a cane.

The digestive system is especially affected, so I am unable to eat normal amounts of food. I spend my days trying to get down 1,000 calories: a dietary supplement, a vitamin cocktail, yogurt, cream of wheat, pureed soup.

Meeting my nutritional quota is a huge effort. One day my system will no longer tolerate anything, and the reality of that causes me extreme anxiety. I am 5 feet 7 and weigh 94 pounds. Eventually I will probably starve.

One day at a time, I tell myself. This is my job.

Last August, I decided I needed a break. I wanted to be rescued. With admission papers in one hand and my husband, Rick, holding the other, I moved into a private hospital room. Rick stayed with me. My bed was, well, not my bed.

I was to have a feeding tube inserted, but after repeated attempts, this failed. Two weeks of little nutrition, a severe loss of weight and energy, and with my health deteriorating, it became apparent I would have to save myself. If I were going to live, I would have to abandon the hospital and take my chances at home.

I thought death was near. My family came. I felt as if I was cramming for a test, and I wanted to get an "A" in life. I could have been a better person. I shouldn't be so judgmental. Some people believe God endows us with a gift for the world and that we will not die until we fulfill our destiny. I know the closer I get to death, the better student I become.

I am tired. I don't fear death, but I do fear dying. It's so scary. I'm losing control. I'm losing my looks. I keep thinking, I wish I could go out and sweep the front porch or the back patio. What I would give to do a load of wash. The little things. I'm at the mercy of others.

I'm now a hospice patient. In hospice, there's no, "Get well soon," but the support is invaluable.

I am making plans for my memorial service. This is one good thing about my situation. I can do that, and I find comfort knowing that I have control over something. I picked a church nearby and met with the minister. I want bubbles and butterflies, friends singing chosen songs and playing instruments.

Black and white photos of my family cover my living room wall. My earliest memories are of my dad snapping pictures. Every day I talk to my sister, Ann Starr. As the oldest child, she is the captain of the family. My mother tells me to call her any time, day or night. It's hard for my family to watch me grow weaker, especially for my parents. This is not the natural order.

I have been nourished by love and support. If that were the cure, I would be healed.

The reality is, even with comfort and care, I am in this alone. Every waking minute I fight to stay alive, but death will be solitary.

The silver wishbone came from a friend in Miami. Fifteen weeks later, I still wear it. The string is as fragile as I am, but it has not broken. I didn't think either of us would last this long.

For now I try to appreciate each day and look forward to getting my wish: peace, peace beyond understanding.

You can contact Suzanne Cizek Moore through her Care Page at www.carepages.com, Care Page name: SuzanneCizek59.

[Last modified February 14, 2008, 22:42:10]