The Dyslexic Writer #


My husband is now very ill. He’s paralyzed from the waist down. It happened slowly at first. Numbness in his arms and legs. A twinge here and a tingle there. Tiredness, a change in his disposition. Anger more often. Some forgetfulness.
Then the legs became numb and hurting. First one leg totally numb, then the other. One leg paralyzed, the he woke up with the loss of bladder and bowels, then in the hospital he lost the use of the other leg.
For a long time even before he was paralyzed from the waist down, it was as if I losing him, a piece at a time, a cell at a time. I prayed, meditated each night with him to heal, to hold back the changes in him. The pain. The loss. Our loss.
For my 70th birthday, three months before, my daughters had a party at our middle daughters house. I invited all my friends. Most came. My kids wondered why I asked so many, I don’t think I was supposed to. But something told me I had to. That this was the last gathering for us all. It was wonderful, but my husband was across the driveway at home in bed, he couldn’t get up.
On our Golden Anniversary our children, grandchildren and great grand children had planned a huge picnic. The oldest daughter bought a fortune in food, the middle daughter and the younger daughter planned and prepared, the granddaughter wrote an article and sent a picture to the paper, mostly unknown to me. We had to cancel, he was in the hospital, in the physical therapy section.
Finally he came home from physical therapy; he was there for Christmas. Hospital bed, wheel chair. He’s been back and forth several times since. Too many to count.
Now it’s different, he has early onset dementia.
He has a spinal infrart, which is like stroke in the brain. Only this is in his spine, which is much smaller than it's supposed to be. This after months and moths of misdiagnosis, guessing, stumped doctors. This moves up to the brain until everything is gone. Everything but life. Life stays like a medieval torturer until after the body is a shell and nothing is left. I haven't slept sound for a very long time. I sleep in the next room and listen for his breath. I listen to see if he moans or his pain. Why? I don’t know. Nothing can stop the pain, hold the breath inside him. Before the diagnosis,before one of trips to the hospital I woke up at night and went into his hospitalbed, I put my arms around him and held him as close as I could. I wanted to hold him, take him away from all the loss. Keep him close to him. Hold him tight and let him never go away.
` Because I felt him leaving me, a cell at time, a piece at a time like some one was erasing him from himself, from me, from our children and grand children.
We learned how to change dressings, clean him up after bowel accidents, empty the catheter, measure it’s contents. Find ways to appeal to his every decreasing appetite so he would eat. Love him. Talk to him and just hold him close.
We have learned to hold in tears until in the kitchen or outside. Once I gave him a scrapbook like the doctors and nurses said, with all the kids pictures, and he looked through it. I was proud to for once following the doctors and hospital suggestions until saw a tear slide down his cheek. I went into the kitchen and wept until my whole body was empty of everything. I had prayed once before to turn my heart into stone so I could take care of my father after my mother was killed by a drunk driver. I wanted no tears for my mother, no feeling, no compassion only hate for the drunk that killed her and be strong for my dad. Now I prayed that prayer again. Hate for this sickness, any weakness I had, turn my heart to stone, but make me strong to care for my husband. That’s all I ask. Be strong, no tears. He can not see me cry. The kids can not see me cry. I must be mean. Make him do his exercises, take his medication, eat his food, drink his water. When the time comes, be able to say to doctors, nurses, “no more. Let him alone. Give him peace.”
That’s still my prayer.
Sometimes he can talk, eat and laugh. Sometimes he is like a child and sometimes into his own world. That world beckons him more and more now, away from us. When he was young, other times. and I listen and smile.
He is cold or hot because the infrart, which is like stroke in the brain. Only this is in his spine, which is much smaller than it's supposed to be. moves up to his brain and he losses temperature control. To watch someone die slowly, in pain because of dying nerves, without feeling in parts of his body where the nerves have already died is my idea of hell and my punishment, I think, for being healthy now. I almost died two or three years ago, and Spirit told me I had to live and that I would live, but I must fight. So I fought with everything I had to live. Spirit wrapped me in White light and I sang the Bearcat Fight Song to keep fighting. Part of me didn’t care if I lived or died. I figured whatever happened was ok. Death was beautiful, so was life. Deep inside myself I knew I had to live for some reason. And I did live. I always wondered why.
Now I know why. And I am grateful.
For Norman who will never be able to read this, and we love him so much. Sherita