The Right To Be Happy

I watched a HBO movie recently about the first reality show in 1973. It was an interesting and thought provoking tale about a family living in Southern California with 7 kids, Mom and Dad. A PBS special that was the first stone thrown to shatter the Donna Reed image television narrowly portrayed. I enjoyed watching it, for I have major big-family envy, but there was one line that snapped my attention and stopped me cold. The traveling-salesman philandering husband was complaining about how important it was for his expectant children to learn how to pay their own way in life. His late teens/early twenties eldest son was floating from the East Coast to Europe, exploring his passions and dreams, indulging in theater and the arts. The wife took a long drag of her cigarette, turned her head to her husband and said "What about raising people that have a chance to be happy in life?" I think I actually gasped. It was like a knife to my heart. Her single statement a dagger in my psyche. For the fundamental difference in the art of parenting that burst to the surface of that exchange was one I had never heard before. I was raised to grow-up and take care of myself. I got a job at 15 and was taught to work hard and persevere and swallow it and do whatever it takes to be successful, get the job done. So that is what I did. My teenage and college years were no better or worse than any other middle class suburban kid growing up in the USA in the 90's. Absolutely no reason to feel sorry for me, but I worked for a bit of what I had too.

Yet the thought of being given an opportunity to indulge myself in play and self-exploration is something I had only been told to hope for on the other side of my career and child rearing. Something  for which I had paid my dues and bought for myself. The justifiable luxury on the other side of a lifetime of hard work and toil. The thought that a parent would be interested in providing that for me was, well, laughable. That was just not our lifestyle. My grandparents were working class farmers. They lived the great depression and were industrious and thrifty. Those were the values they raised their children with, and in turn my parents (after indulging in the hippie-love movement) passed down to me. Those same values are the ones I applied to my career while repetitively ignoring the clanging symbols my health was banging in front of me.  For in my mind there was no option as to whether or not I worked, and I pushed myself back to it so many times I lost count. I forced myself to continue to do a job I was too sick to do because I had to pay my bills. Just like so many other Fibromyalgia patients have to. Unfortunately we tend to do this to ourselves, don't we? 

Through the years of all my research and experience in surviving multiple health crises I believe now that if I had stopped when my symptoms first started, took them seriously and pursued wellness, I could have avoided the intense severity that brought me to my knees, caused my emotional breakdown and subsequent devastation to my family. But I truly saw no way to do that. My income was necessary to the survival of our life. Between all the medical tests to obtain a diagnosis and my reduced salary it was not long before we were in financial dire straits. Which pushed me to work harder. Which made me sicker. So this too is what we are fighting for, dear friends and readers. Yet another objective of The Fibromyalgia Crusade. The right to be sick. And the right to tend to our illness when we get it, not after we have ran ourselves ragged and can no longer stand up. This is an amazingly expensive disorder to have. It is disabling, has no cure and limited treatment options wrought with unsavory side-effects, and is only firmly diagnosed after dozens of other illnesses have been ruled out. Obtaining disability is a nightmare, let alone finding a doctor to treat you and work to discovering the root cause of your pain. So keep marching forward, my friends. We the patients must join forces and progress awareness and, dare I say it, acceptance of this illness together. For I know now I am not waiting until "retirement" to enjoy my life. I guess when your 34th birthday is spent in the hospital having danced on death's door it makes it pretty darn hard to plan to wait until I am 65 to get to livin'. Besides, the retirement age will be close to 80 by then. Oh my.

Thanks for joining,

Leah