It is common during wartime that when a man is down he is not left behind. It is one of the few kind aspects that persist during wartime. I was thinking about that today and how we leave behind so many people that are sick or injured. Sometimes we don’t completely leave them behind we just forget about them after the initial shock or carry them part of the way and realize that it is hard to even be near the critically ill because it is so deeply depressing.
There have been times that I have wished that I have cancer. Seriously, it would be something tangible that people would believe and that I would never have to explain certain things. Things like why I was in pain or that the pain was so great that I couldn’t walk, that I fall down or that I jerk uncontrollably sometimes awake and asleep. Yes, if I had cancer, I would not have to explain these things. I would also have people walking by my side and sometimes carrying me on a stretcher to get through things. But cancer is not what I have.
I am the unfortunate recipient of not only a rare disease, Behcet’s, but I also have another monster lurking somewhere underneath that is either something new, rare, known but bad or a form a Behcet’s that there are only a handful to have known to have it. This monster is taking my life slowly from me. Doctors do not know what it is. The smartest doctors know that it is coming and that this monster exists. But the right symptoms have not made their presence known. Everything I have is being taken from me in so many ways but I could care less as long as I have my family. It is taking my health, obviously, or I think obviously. You see, sometimes after a lengthy illness people start losing faith that you are struggling or they start asking questions about what exactly is going on with you. Especially when you don’t look sick on the outside like I do. You might catch a wince of pain or my eyes drifting upwards as fatigue takes over as some outward symptoms, but I look healthy on the outside. It is not that they don’t trust you. When they look back they remember the person you were. They know your character and they know that there is no way that this could be some mind manifestation or that you could be making all this up. You really have to have faith that this person has what they have unless you have outward signs or disturbing tangible symptoms. Faith is hard to maintain, even in perfect circumstances with intangible evidence out the Wahoo. Faith is but a rumored fact away from being burnt to the ground sometimes. But in people’s doubt, they break your spirit, they break your trust. This is what really takes the wind from your sails. This is something that people don’t realize when they ask questions or doubt your symptoms. At times, these feelings will betray you and try to break everything that you have. But you know it is real. You know the pain is real. You know the swelling is real. You know that the jerking and the nighttime seizures are real. You know that when you have to have surgery on both hands for carpal tunnel that is real. These are all tangible things but these are not things that people get to see unless they are always around you day and night.
If I had cancer, my word would be tangible and never questioned. Sometimes you feel stranded without the tangibles of other diseases. But as time goes by, I get the “terrific” tangibles like having carpal tunnel surgery on both hands at two different times. The carpal tunnel popped up one stressful weekend and well stress and autoimmune diseases don’t do well together. Isn’t it strange that both hands did the same thing at the same time during a stressful event and now within a very short amount of time I already have nerve damage and need surgery? This is a tangible. In time, I know that more and more tangible symptoms will appear that will catch people off guard. These same people that doubted will become saddened by what a terrible disease this is and what it has done to you. Getting the backing of the best physicians in the world provides some intangible help, but people still doubt, still question because they don’t understand the rare and the unknown. It scares them and it should.
What has happened to me can happen to anyone. Take inventory of your lives and what is precious to you. Take to heart the people suffering around you whether you believe them or not at least give them a chance. I am not saying that everyone out there saying that they are suffering is truly suffering, but many of them are. Suffering is not something that many people make up when they come from a life where they had no need or want, where at any moment they could have that life back if they were able to work. No person in their right mind would make up such a thing.
Many are silent about their suffering. I was for many years until it took everything I had physically from me so that I couldn’t work, I couldn’t play sports anymore, I couldn’t do the things with my family that I used to do. I was quiet because I didn’t want to make a big deal out of it. I want people to believe me but if they don’t then more tangible evidence or a more tangible diagnosis for people to understand what devastation has befallen my life is highly likely. I don’t want it to be. I wish that it would all just disappear and go away just as fast as it came.
For those of you that have stuck this out with our family so far, I can call you nothing short of heroes. Truly and without a doubt you are the salt of this earth by which we all should be learning and living from your example. For those of you that are scared, doubtful or just aren’t sure, it is ok, the tangible is becoming more evident and your comfort will soon be satisfied. I don’t say that spitefully, I say that with a spirit that is calm but damaged. The doubt hurts but I can understand where it comes from. Just know that I love you guys just the same and I want you to join me on this journey. My family desperately needs your help more than ever. We need people to be with us in community. We need people to spend time with us and help us fight the daily battles. Don’t ask what you can do for us, come and do what you think you would need if the situation was switched. Whether that be sitting and keeping us company, watching the kids for an afternoon or evening, doing a load of laundry or giving financially, it is all the same. Help us, but help us with an open heart and a mind that is true and honest in the belief of what I am going through. You don’t have to fully understand it, heck some of the doctors don’t fully understand it but they see it right in front of them. They see the swelling, the changes in my blood and the pain in my eyes and on my face. The see things that defy science and they call in their residents to study. But they also see my spirit and the fight that doesn’t accept that I will always be like this. I am either too stubborn or too callous to give up. I will never give up as long as I can fill my own lungs with air. That you can believe in.
Over the coming days, I will try to write as much as I can. I am having surgery on my right hand this coming Friday, May 14th and then on my left hand six weeks later if all goes as planned. I am not sure how I will blog unless someone has a copy of a voice to text software that I could use like Naturally Speaking or something better. I would like to keep blogging. I haven't been because my hands really are killing me because of the carpal tunnel which we are not sure is or is not caused by the Behcet's. My suspicion is that it is by the fact and manner with which it materialized. Best to everyone. Happy Mother's Day to my beautiful wife Mary. I love you with all my heart!