The past week has been a classic example of how frustrating dealing with a “fuzzy” illness is. I say fuzzy because we found that my local rheumatologist believes that NeuroBehcet’s is playing no active role in what is going on to me. He informed my primary physician Dr. Sellers after my wife and Kristin Turney Jones confronted him on making progress with my condition. This of course was all news to us. I saw Dr. Myerson in December 2010 and he had no observations of the like. Teetering on fury and this new found blindness in my position and diagnosis, I talked with Dr. Sellers and convinced him that maybe it was time that I got a new MRI of my brain and also exploring the parts of the spine other than the cervical spine. After a short back and forth, we agreed that it would be best to expand what we are looking at within the nervous system.
The results revealed some new things and some worsening things. So I do the usual run through of specialists to get opinions on what this means and what to do. The newest doctor to be seen was a neurosurgeon who was very nice but needed more scans to finish his made-up mind. It turns out that my MRI covered my brain, cervical and lumbar sections. It was missing the thoracic section of my spine. The thing that made this somewhat important or inquisitive or whatever you want to categorize this as, we walked away with a theoretical piece. There could be a spinal arteriovenous fistula on my spinal cord in the thoracic section of my spine. A clue being that there is a strange “serpiginous enhancing vessel” along the right lateral aspect of the cord at T11 (thoracic 11) through L1 (lumbar 1) of “uncertain clinical significance”. So the next step is to get more tests and more opinions. We will either find a significant answer to the paralysis that is evolving in my body or we will be at another dead end. I do need spine surgery at this point to correct what years of disc disease has wrought on my body and one of my other diseases, scoliosis.
So what does all this mean? It means that we are at an area that we have been literally over a hundred times before. So far we are zero in the win column with all losses. That is a pretty hard record to contend with and to continue to ride on wingless hope. It is what I can only explain as being at the bottom of hope. A dreadful, lonely place even if you have someone you love right by your side it is as if they are non-existent, a million miles away. At the bottom of hope you can do one of a few things; you can give up hope and slowly or quickly disappear from existence, you can hold onto what little hope there is and keep looking for answers with a hopeless feeling in the back of your mind always nagging you to just give up, or you can thank God for the ground and the ability to fight and the advocates that stand by your side whether they be in person or silently working on your behalf. I don’t have a choice in all of this. I must keep fighting even if nothing comes of what I stand on or what hopelessness stands in my sights.
The hardest thing that I deal with daily is not the pain, or wondering what part of my legs, arms or other body part I will have problems with this day, the hardest part is the people that are directly a part of my life. It is hard to watch your wife cry so hard, so deep it as if you have died every night for the past year. It is hard to watch your six year old daughter worry so much about her father that she thinks that she will have to be the daddy if I pass. It is hard to watch my three year old daughter often confused about why daddy is in bed so often. People visit, people cry, people hug me and apologize for not doing more or for what I am going through. Some people disappear without a word or note. The common denominator within all of these things is me and I feel an innate responsibility for how others respond to my condition. I know that I am not responsible. I have no control over this disease and how it affects others but it hurts my heart to no end the pain surrounding my situation.
I have met so many people that are hurting and have no voice. These people have no way to communicate to others that they are hurting. I hope that these few words give them stay and courage to begin bridging the painful gap between what is in their heart and what others know. There is a price to pay for putting yourself out there and a risk as well. But pain, in any shape or form, will get the best of you and rot your soul. You will turn the world into a darker place each day that you lay the pain down and fight the world on your own. Very few have survived this world on their own. I can only hope that my words free the pain that those without a voice carry inside and I hope that in freeing that pain people are lifted to help each other, however that may be.