Milestones: Accepting the Limitations of an Invisible Disability

A neck injury in 1986 left me in constant pain. That was 20 years ago. I was a single parent, determined not to be on welfare, and the sole support for my twin sons.

I accepted the pain and the fact that doctors were not going to medicate me to relieve it. The same stories about exercise, stretching, physical therapy, and the horror stories of addiction and physical dependency were recited over and over again by the medical community, and I suffered. I have developed spinal stenosis and ankylosing spondylitis, a form of spinal arthitis, all in my neck. The pain has several layers and likes to travel from neck to shoulders and upper back with muscle spasms that knot the muscles sometimes get the thumb and forefinger on the right side twitching. Ouch.

January of 2006, I turned 50 and made a decision. I will no longer accept this pain, I will not avoid physical dependency, and I will not push myself beyond reason any longer. Taking about an hour each day to stop and think, a list of those activities and stresses that create unnecessary burdens began to grow. Slowly, a personal set of guidelines developed.

Contrary to popular belief, life is much better now.

Fulltime employment is no longer an option.

This is probably the most difficult fact to accept. Most people define themselves through their employment, which is unfortunate. Committing to a set number of hours a week, worrying about having to use more sick days than provided, and the toll the stress takes cannot be justified. Driving aggravates the pain and taking a bus, suffering the starts and stops every 2 blocks, sets the nerves blazing. That awareness took time to develope. Days away from those problems had to pass before the affects could be evaluated through their absence.

Working part time and/or at home is the solution. Work in bed, on the couch in a robe on a heating pad, take a nap when needed, or adjust the pace of production. No worries about driving while medicated, no worries about a flare up while away from home. When the wather seems stable and feeling well rested, a temporary situation outside of the home is good. I work part time for the school district in special education. The people are more than happy to see me and its good to get out and feel needed.

A carefully chosen circle of friends and acquaintences can make or break a decent day.

There are people in everyone's lives who are difficult to deal with, at best. There are those who reject the thought of cutting those people out of their lives, or severly limiting contact. That luxury has no place in life now. The stress of conversations with those who are manipulative, or lash out when they cannot have their way, are now listed in the "will not be tolerated" category. Those who will never go into that list would be offspring and spouse, but all others can earn their spot on the list. The conversations raise adrenaline levels, subtle and painless for most people, that can bring on a flare up. If conversations cannot be comfortable, those people have to find someone else to talk to.

Physical Dependency?

Yes, I will be dependent. Just as a diabetic is dependent on insulin, I will be dependent on Vicodin, Flexeril, Percocet, what ever it takes to keep the pain from twisting my nervous system into my worst enemy. Years have gone by without a nice firm hug, with touch being avoided. Quality of life is more important. I can take a deep breath now without aching, I can use my relaxation techniques more effectively, and I can actually go for walks without being too concerned about how I am going to feel an hour afterward. Redicovering interests that I had put aside nice, the pain isn't filtering every attempt at concentration. I have started replacing supplies for hobbies I once had, so that I can relearn them. With 20 years having elapsed, it will be starting over, but worth it.

Determination in Action

The doctor is no longer giving me little quips about the evils of physical dependency. I think I made myself clear when I sited the results of the last MRI. I am not going back tophysical therapy and the neurosurgeon has not offered surgery. Get that pad and start writing. He approved a handicap placard for my vehicle. I need park closer to buildings so that pushing or carrying items doesn't aggravate my nerves. I can't turn my head as far as most people, so I need the extra room to maneuver. I need to open my car door all the way, not just a crack to squeeze through. My not having a wheelchair or some other form of assistance causes a few stares. I can't wait for someone to be so unwise as to give me their opinion on my lack of disability. My response will be through my cell phone to the nearest cop. Don't assault me, I earned this spot.

If you are one of the millions of people in constant agony, take heart. Adapting to your limitations and then rearranging life can have benefits that those who are not suffering cannot see. Too bad for them!