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The Beast

The BEAST moved in with us about April of 1983, before we were aware he was around. He hid in the bushes, and growled and nipped at our heels, but we didn't recognize him. We thought it was something else, the wind or something in the bushes. Then he crept slowly into our lives.

Michael Lee Lynch was a wonderfully alive, intelligent, physically active young person with a zest for life until the beast came along.

Mike was my son-in-law. He was 31, blond, blue eyed, and weighed in at 205. Father of two children, a girl Michelle and a boy Ryan, who is a carbon copy of him.

He worked his way up from meter reader to head of the computer department for a large utility company. He had a brilliant future ahead of him. Mike went to school at night, and in December before he began to experience his illness finished his degree in business. He played semi-pro softball and was featured on the front of the Dallas Times Herald Sports Section for his abilities. He was a friendly, warm hearted young man, a good husband of 12 years, a good father..

Mike began to have trouble swallowing and presented himself to the Doctor for diagnosis. The specialist seemed to think that the cause of the problem was a deviated septum so arrangements were made for an operation. This is a simple procedure which is usually successful and the patient is better in a few days. Such was not the result in Mikes case. After a stay in the hospital and a period of recuperation he still had difficulty swallowing and began to have trouble remaining in a closed space. The Doctor checked the result of the operation and felt there might be an infection so Mike was given medication, which changed nothing.

After a time he became be highly nervous and very claustrophobic. The Doctor suggested the possibility that strain and the combination of the operation had caused psychological problems. Mike walked the floors, believing he was going crazy. He found it impossible to remain in a closed room or one without a fan. He could not stand anything with a strong smell. He became nauseated and could not eat and so nervous he felt he would go berserk. At times he was afraid he would hurt himself. We tried everything, psychologists, punching bags, throwing dishes and still the inability to stand closed places and the nausea continued. What to do - no one knew. We were helpless.

Then came another swipe by the beast- Double vision. Mike began to see everything double. So began another round of doctors. Eye specialists who found no cause, no physical reason for his sight disturbance...but put him in glasses for double vision, hoping it was a temporary muscular spasm. No improvement came and soon we knew why.

In late 1983 Mike began to stumble. He became less and less able to walk on his own. He could hardly function, he could not read because of the double vision. He needed a walker to stand and still we had no clues. One Sunday evening we took him fishing. It was difficult and he let his walker drop in the water, we did not try to shelter him but let him try to walk and fish. He and his son caught several small fish but Mike caught the largest. What a pleasure this was because he had accomplished something on his own and his son was proud of his Dad.

Next came the Neurologists. Tests, tests, tests and more tests and no positive result. No one could find anything wrong. His mind still functioned excellently, but his body no longer responded to his commands.

After many trips to Houston, Waco and other special center for tests, brain scans and physicals the only thing the Doctors could find was a problem with the lower left primitive brain. No one knew what or why.

In August of 1984 the head of the Neurological department at Southwestern Medical took over Mikes case and did a through work up. He found no more than the others, and so Mike continued to stumble and fall through life fighting the beast all the way to keep it from moving in. He failed, all of us did.

In March of 1984 the Doctor found it necessary to do a biopsy of the brain, to see if there was a possibility of something they had been unable to detect. The biopsy was to have taken one weekend, and a couple of days in intensive care. It took a couple of days, and two weeks in intensive care. Mike never walked again, not even in a walker. The trauma coupled with his disease which the Doctor's described as a Neurological Degenerative disease, was more than his brain could stand, and so the beast moved into our family.

The beast took up permanent residence in April of 1985 and we hated him. He became a part of our lives. He is death and he continues to prowl around Mikes bed and wait patiently taking small nips out of Michael day by day.

Constant living with this beast is hard to explain. Mike so gradually lost his life, over 18 months. He slipped as on a slow sled down a small hill. We too gradually slipped each day. We lived as with a toothache, al-ways in the back of our minds lived the pain of Mikes dying. The beast stalked. We glimpsed him sneaking around a corner every now and then as when Mike had a seizure. These are part of the nips of the beast. We see him reflected in Mikes eyes and feel him near when Mike desperately holds onto our hands and won't let go.

The day to day living is extremely wearing, the struggle, and the questions you face are unanswerable. Some problems have no solutions. We especially are bruised by the kind remarks people make such as "God gives you this trial to strengthen you." Sometimes you wish to just be weak and cry, and cry. You really find it ridiculous that God would use Mikes life just to strengthen- your character. You find yourself wishing to remain weak so Mike can be alright.

My knees are sore from praying and my heart is broken with the words of those who lay Mikes death on those who love him because we haven't prayed enough. They have judged us as without enough faith, who are they to judge, let them first walk in our shoes,

I find it impossible to believe in a God who would destroy a strong, good young man's life to teach anyone a lesson.

One of the most painful things are the people who bury Mike before he dies. Their excuse is that they don't know what to say or that they cannot stand to see him this way. They see their own mortality in Mikes eyes. They cannot stand the pain of seeing him. Please don't stand over him and cry and moan. We know your pain, but Mike is still there. If he must die please make his last days a celebration not a wake.

Mike can no longer move from his bed or wheel chair. He cannot eat, but must be fed through tube in his stomach. He can't see except up close and double. He can no longer talk. He is already in a prison where we can only touch his hand and his mind. Most of all we never had the chance to talk with him because this came on so insidiously.

If there are blessings, they are two. Mike can still recognize friends and family, still under-stands what you say to him and there is no pain. We are thankful for these.

Katerina Cobbler Ross says talk to a person about their dying. How can you talk with someone who cannot respond about a subject so devastating? I want to tell him so desperately how I feel so many times, but the look in his eyes and the tears on his cheeks stop me. I am frightened that he will only be burdened because of the inability to respond and cry out his anguish to us. How very terrible to be deprived of the ability to express your feelings, how frightening and confusing it must be, to be locked away from all human communication.

Mike is wonderful in the love department. He is still able to let us know he loves us because he can still smile. When we tell him how much we care for him and ask if he loves us he breaks out with a bright wonderful smile. When awake he still loves jokes and waits for his friends to come and talk, and save them for him. In fact he will chuckle for awhile afterward at the happy time. He sleeps almost constantly now and will soon go into a coma never to awake again.

We are terrible hurt by people who are kind but destructive to Mike. Mike has so little control over his body and life and some refuse to allow him what little he has left. This is a blow to what faith he still in himself as a man. They talk about him and around him, rather than to him. They no longer treat him as a man and they give him no choices, he has so few.

We allow him to decide when to bathe and brush his teeth. If he wants to sit up in his wheel chair or lie down on the pallet and we always allow him to make as many decisions as possible. This is difficult, for we could understand his wants and needs much better several months ago when we devised a system of squeezes of hand for yes or no. Now Mike will smile for yes and will not respond for no. It is terrible hard to communicate and to know his wants.

The children, Oh, the children, they watch their father die. Michelle is in the first grade. The class was told to draw a picture of their family. Some drew pictures with a father that works and a mother at home. Some with one parent only. Some with both a mother and father who both work. Michelle drew both her mother and father at home, her father in a wheel chair. They are so realistic.

Ryan resents the fact that his dad can no longer wrestle and play with him, and so for a while hooks onto any male in the family who is nearest. He hits everybody, taking out his anger at a world that takes his father from him. Michelle treats Mike as always. She lays in his arms, kisses his cheek and tells him of her day at school. If only adults could follow the instincts of children. Both will be defeated for a time when their dad is gone. Michelle in particular for he always told her how beautiful she was, what a wonderful girl she is, and called her his princes, she will miss him so.

Wives don't cope easily either, sometimes Chris cries for hours and then she again takes control. She misses so the closeness of her and Mikes relationship. She misses the person she could tell her most secret desires and thoughts. She misses someone to hold her. She has become both father and mother. This is not such a task, but at the same time she has become the decision maker in all matters. The payer of bills, consultant with nurses and doctors, and at the same time copes with the beast that roams her home, living with the prospect of death every day and seeing it take him so slowly.

She would not move Mike to a nursing home as long as he could understand anything. She loves him and wants him near her and the children. Sometimes she must leave for a visit with friends for a day or two, just to get the world back in perspective. Dying is hard to live with.

How do we cope? Chris' answer "No one gave me a choice." Wouldn't you like to run away? Of course, everyone would like to run away from their problems, but I love and care for Mike and the children and I cannot leave them. She holds his hand and tells him how much she loves him but can't stay long for she dissolves into tears.

What do you talk about to Mike when he can't talk back. We tell of our days and how much we love him. We bring in diversions, a new puppy or kitten, a bright balloon or a new cap or t-shirt.

Sometimes I have to stop thinking for there are books in Mikes

eyes. I can look into them and see the questions and the suffering, and the wonder about what is happening to him.

I especially have a time with the tears... sometimes they just run out the corners of his eyes and mine too. Yes I cry, sometimes I find myself crying at the stupidest, simplest things and then I find I am crying for Mike. Sometimes I feel like crying and can't I hurt too much. I want too much for things to be different.

I ask why too much. I have hated this beast but now I have begun to find it familiar, we have lived with it so long. lt has become a familiar face to live with in this house.

How does this end. Eventually in death, my only comfort is something one of my friends told me. Sometimes the ultimate healing from God is death. Go away beast you are not a welcome here.

Our beloved Michel died February 2, 1988. Age 36 years

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