Everyone Needs A Hug

September 30, 2007 - I usually write about technical or semi-technical topics. I thought I would do something different this time and write about the human side of Chiari. Let my female side show a little, just a little. I want to talk about what it is like to have Chiari at the emotional level and why everyone with Chiari needs support and genuine understanding especially from those closest to them.

Chiari was particularly aggressive with me. It more or less started with pain upon swallowing probably due to compression of the lower cranial nerves and 18 months later reduced me to using a wheel chair. I had strength in my legs but when I attempted to use it, it made me sick. It was also true of my arms but even worse so I couldn't even push my own wheel chair. I had many other symptoms as well; too long a list to reconstitute here.

I was on disability. I pretty much came to the conclusion that I would never feel well again. I was depressed and sometimes thought about suicide. The doctors were convinced that clinical depression was my problem and the cause of my physical symptoms. They had pretty much convinced my wife which really drove me into loneliness. When your spouse is forced into a state of confusion, you are truly alone.

I was the only one supporting my family. My wife did not work. I worried about my family on many levels. How would I support them? What if I became a burden to them? How was I going to raise my son and be there for him? I worried about gradually declining which would lead to significantly shortening my life span.

The worry was absolutely overwhelming. Doctors could not tell me what was wrong and didn't particularly care to find out. They just wanted me to continue talking antidepressants and seeing the psychiatrist. When you know clinical depression is not part of your normal make up and no one believes you, you feel completely helpless. Not getting a diagnosis drains you of hope and living in a situation where no one is the least bit curious about finding a diagnosis is a nightmare.

Decompression is fairly painful particularly the first couple of weeks after surgery. Your head feels like it will explode with the slightest movement. You have to stay in bed most of the time the first couple of weeks after coming home. You lay in bed in such a great deal of pain that you wonder if you made the wrong decision in having surgery. Most surgeons will only promise that the surgery will halt the progression of the syndrome but will not promise improvement. You lay there and have serious doubts that you will experience improvement.

My parents drove 600 miles to be there for me during and after my surgery. They were old and had their own problems but there is no way to stop parents when their child is in need.

The first day I was home after the operation, my mother was at my side in my bedroom. She looked at me with the back of my head all bandaged up and could feel my pain. Tears came to her eyes and she began to weep. She bent down and hugged me and told me that she wished we could trade places. Even though I was 48 at the time, I needed to hear that and when I did, I too cried because I realized just how deep her love was for me. I assured her that I would fight back. Her display of love at that very moment was an important turning point for me. Even though I was the one suffering, I could not bear to see her sadness. I wanted her to be happy and I resolved to do my best to recover.

My mother passed away a couple of years later from idiopathic pulmonary fibrosis. She suffered far greater than I during the last two years of her life. At one point she developed pneumonia and was hospitalized. She had glaucoma and while in the hospital she contracted an eye infection from a nurse or aid who administered her eye drops. The infection could not be controlled and she had to have her eye removed a couple of months later. The eye she lost was her good eye and she was left blind for the last year of her life while she was anchored to an oxygen tank at all times.

I was at her side in the hospice for her last two days. I watched her struggle to take every breath. I kept her lips moist and put ice chips in her mouth. I, my father and brother stayed with her to the end. Our hearts were ripped out at the end but we all felt relieved that she was out of her misery. She remained true right up to the moment that she went unconscious. She never despaired and her mind was clear. She was brave and good and full of love.

Whenever I think about her, I remember her crying over my bedside and pleading to trade places with me. All the times she disciplined me or nagged me, I really recall not. I remember her love most of all, the love that gave me resolve to fight back.

Today, almost 8 years later, I am better than ever. In many ways, I have never felt so good. Yes, it was the surgeon's knife that played a key role in giving my life back but without my mother's loving hug, I wonder if the ultimate outcome would have been as effective.

Postscript - I recently learned of the death of a great woman, Dr. Marcy Speer. I never had the privilege of meeting her but I am familiar with her work in the genetics of Chiari. Her paper in the Journal of Genetic Counseling, volume 12, No. 4, August 2003, is a paper I have referenced dozens of times as the best review article on the prevalence of Chiari. Marcy lost her battle against breast cancer on August 4th but her contributions to Chiari research constitute a significant victorious battle in the war against Chiari.

Ed. Note: The opinions expressed above are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Mr. D'Alonzo is not a medical doctor and does not give medical advice. Anyone with a medical problem is strongly encouraged to seek professional medical care.