Throughout my experience with my condition, I've come across a wide variety of people full of opinions about my life. Most are sympathetic, but every now and than, I get a few "head-scratcher's."
You know, the type that can't figure out how an injury can keep you down and why doctors won't let you go back to work when you have one of those few good days.
I've even had former supervisors ask me, "can't you just take something and come back in?" I honestly wish it was that simple. But it was that same mentality from my former employer that made my condition worse. They were in such a hurry to bring me back to work, the company doctor missed a severe injury to my Thoracic spine which went on to heal wrong, causing all kinds of chaos in my body. Permanent Nerve Damage, Osteoarthritis, Proprioception Issues, Kyphosis, Regional Pain Disorder, Complex Regional Pain Syndrome, Inappropriate Sinus Tachycardia, Postural Orthostatic Tachycardia, Transient Ischemic Attacks, Stroke; the list goes on and on.
But most people just look at you at face value and see someone who seems fine, despite the use of a cane. Maybe a little bit slow to move around, but nothing seriously wrong.
They don't understand that you have bad days too. The type where the pain just gets you. No matter what you do or try, it erases that day from existence and you know that you'll never get it back.
Those who've had severe injuries or illnesses will understand this. You try anything in your power not to have a "bad day." Whether it be by distraction, meditation, prayer, stretching, long hot showers, ice baths or whatever means that might possibly work, it sometimes isn't enough. When that happens, you can't think, let alone move. Your heart rate increases and you begin to stress, which can lead to far greater problems such as heart attacks or strokes. You tell the doctor and, of course, they try to increase your medications which just makes you sleep 16 hours a day. Basically, another day lost regardless.
That's what's devastating to me. It's the time lost that you'll never get back. I always think about the songs I could have wrote or the time I could have spent with others. I often get asked about why I bother to force myself to walk or go to the gym when I'm never going to get any better than I am now. My response is simple. If I don't try today, I may not be able to tomorrow.
I've learned to appreciate every moment that I'm able to do something because I know a bad day, or even moment for that matter, may just be around the corner.
I still want to live my life on my own terms. But sometimes, the pain just gets me. I just make sure I go down swinging and refuse to stay down.
Thanks for all the wonderful support everyone! Remember. We're never alone and we STILL control our lifes!
~EJ
