My brothers and nephew are perfectly healthy; they don't even usually get a cold and certainly have never had anything serious enough to send them to the hospital other than a broken bone. By contrast, I have done the hospital tour in three states: New York, where I work; New Jersey, where I live and Boston, where I used to go to college.
I have a rare autoimmune disease, igG4 related systemic disease, and it's cost me nearly all of my vacations from work for the last decade. I use my time off for medical procedures, my recovery time from them, for tests and doctors' visits. Even if I have leave left, my illness usually sucks up the cash to go away. It's spent on medications, co-pays, and procedures.
When I was in my 20s I used to wonder, why me? Why was the one who was too sick to go clubbing, out drinking and dancing? I couldn't because I was either too ill or too drugged to function after nine o'clock at night. And heck, we all know the club doesn't start hopping until at least 11.
Then, one day my mother shared her thoughts about my perpetual illness. She said if my brothers had been sick this long, they probably would have given up. To her, I was fighter, someone who gets on with things no matter the obstacles. It reminded me of the famous quote: "Ours not to reason why, ours but to do and die," by Alfred Lord Tennyson.
So, I took a step back and started thinking about what I really want from life and whether I had to miss out on any of it because I was chronically ill. It occurred to me that I let opportunities pass me by because of my own short-sightedness. If I really wanted to go clubbing, I could've taken a nap and gotten back up. If I wanted to go out drinking, I could've gone out with my friends and sipped on a soda instead of alcohol, at least i would've been social. If I wanted to dance, I could've gone to clubs and selected a few songs to dance to instead of all of them. It occurred to me that when it came to challenges, I needed to starting think why not me? What's truly stopping me from enjoying my life?
Instead of looking at my condition as a hindrance, I began figuring out how I could tackle things in my present state. First, I got the best medical care I could so my body is performing at its optimal level. Then, I became determined not to let anything, including my illness, prevent me from reaching my goals; to make the best with what I have rather than what I don't. Often times I had to be daring, creative and innovative in solving my problems.
When walking became a challenge, I got a cane to assist me. I also exchanged my old car for one that allowed me to raise the seat so I wouldn't have trouble sitting down or getting out of it; it also has no armrest so my cane is easily accessible to me. More importantly, the vehicle had seats that flip down and out of the way so should I need a wheelchair, it can be loaded into the back through the hatchback. I also obtained a walker to help me stand up and prepare meals with both hands free. And, I put handheld shower heads in all of my showers so it was easier to wash myself.
At work, I modified my desk so that the monitor was higher and didn't strain my neck while looking at it. I got a massaging lumbar support pillow to help my back, a mug that allows me to drink from any angle, and a pillow to rest my leg on under my desk when it hurts.
Of course, sometimes sheer will doesn't overcome my physical limitation so I've learned to rely on friends and family members who can be my strength when I am weak. I allow them to be my eyes, my ear, my arms and my legs when mine fail me; two people working together in tandem are always better than one.
When my body fails me, I turn to using my mind, which functions perfectly well. I write blogs and books to educate others about self-esteem, health, and medical mistakes. Knowing my words make a difference to even one person usually help me stave off the depression that comes with a long illness.
Now when I ask myself the question, "Why not me?" The answer is there's no reason I can't face anything that comes my way by adapting to control the things I can change and letting go of and pray about the things I physically can't.