Being disabled is really such a strange thing. This is a horribly bad picture of me, but you get the gist:
I feel that when people see the crutches, they cast a judgement. They they think I’m weak, that I’m not smart, that I’m deaf, that I’m dumb, that I’m mute (HA! I bet my friend wish at times), that something isn’t right with me. I feel because I have a bad back, off-kilter balance, weak knee, and more that I’m somehow incomplete. That something isn’t right with me.
And it’s a horrible, horrible feeling. I wonder if I’m broken. I wonder if I can be fixed. I wonder what people think when they see me. And I wonder if I will ever live a day without pain. There is literally nothing they can do for my knee at this point in time. My back has been fused.My balance disorder has an unknown origin. As I get older, my NF will continue to progress and I will become more and more disabled. I may be able to achieve my two dreams: get a license and go overseas, but that will take more time and energy and effort than most people.
It’s a hallowing feeling, knowing that I’m only 24, yet already destined to live a life of pain. I will likely never know what it’s like to be fully pain free, only how to better manage and control the pain. I will never know what it’s like to do so many things that so many people take for granted. I don’t know what it’s like to not have a laundry list of disorders, or to make sure every place I go is somehow handicap accessible. I will likely never know what it’s like to have a child, as the disorder would not only harm me, it would harm the baby. I get so angry. I get so frustrated. And I wonder why God chose me to walk this path. I get frustrated that over the course of a year I see more doctors and specialists than most people see in their entire lives.
I’m told that God must have a special plan for me, that He must know something. Perhaps he does. But it doesn’t change how angry I am that I was made this way. That my life is consumed with appointments to just try and give me a normal life, something others take for granted. That in addition to the physical ailments, I was cursed with PTSD and ED-NOS (coming soon in a blog entry near you about those).
I wonder if it would be easier if I had a family support structure, that when I’m up in pain at 5:30 in the morning, crying because I can’t sleep because my back kills and I can’t move my leg, if that would make it better. Or if it’s better that I often suffer silently, so that others don’t know, don’t worry, don’t have the chance to care.
It’s funny the thoughts that run through my head – even though I know most of them are purely irrational. I wonder how much the pain fogs them.