Over and over again I share all different aspects of my life, not because I am looking for praise or people’s approval, but because writing and sharing (venting) help me process a situation. I also hope people can learn from my story. I do not spend my time reading to my sons in hopes that a teacher in the midwest somewhere will be impressed by a woman who uses a wheelchair who also has really smart, handsome sons. I write because I want to let the world know that sometimes life blindsides you, knocks the wind out of you and your world comes crashing down around you. Under all that rubble and pain pure joy can be found. In my case, it was a beautiful round baby, whose big brown eyes forced me to wake up and fight my lifelong battle against Friedreich’s Ataxia (FA).
2021 will mark 20 years since both my graduation from high school and my diagnosis of FA. In those two decades, I have lived so many lives. I have done some things well, but most of the important lessons I have to share are from mistakes I have made and also the information I have accumulated from all the amazing people who have touched my life in various ways.
Recently I have been experiencing an increasing amount of lower back pain. Back pain is not uncommon for wheelchair users, so for quite a while, I have just been enduring it. Whether I chalked it up to my second pregnancy, age, weight, or I simply spend too much time in my chair: my degenerative disease was somehow not a blip on my radar. It is interesting that even after 19 yrs my brain still seems to revolt against the idea that I do have FA. There are a number of co-occurring medical conditions. Diabetes, a form of heart disease, and swallowing issues are just a few from the long list. Not to go all ‘geek-speak’ – the science behind it can be confusing and overwhelming – but, in simplified terms, there is a mutation in my DNA. Remember that double helix most of us saw in high school biology? There lies the mutation. Depending on how many times that mutation occurs in your DNA directly affects the severity of the disease. Meaning the higher the number of repeats you have, the more severe the disease will present. Making the opposite true – fewer repeats, a lower number, is equal to a less severe presentation of the disease and its symptoms.
I was informed a number of years ago, that my number of repetitions was relatively low compared to a large number of patients with FA. My symptoms might progress slower and not end up being as severe (as someone with a higher repetition number) and I would live well into my sixties. I am continually impressed by the power of the human brain and the uncanny way it processes and organizes information. A brain is able to and does take away the information it finds most relevant and the least painful. I was NOT told that I would live to the current life expectancy for an American woman or that my symptoms would not be bad. So instead of telling myself that I still had FA and, like every other person with this horrible disease, would continue down a path of physical decline, I let this tiny sliver of good news go to my head. Once again denial set in. I somehow turned ‘not as intense’ = into ‘not existent’.
With this “wow, I dodged a bullet” attitude, I mentally took that intangible number and gave myself a ranking. “See I am not really disabled”, instead I trapped myself in some unseen plain between the world of abled and not. For this reason, I told myself I could not be dealing with the pain associated with moderate and severe scoliosis (curving of the spine) which is one of the more common co-occurring conditions with FA. “That is what happens to them not me.” Guess what? I might choke on only every third sip of every liquid I drink instead of every single sip, but I do choke. The muscles in my throat do not activate when I drink to stop fluids from entering my airway. Once again it reminds me of the fact – a number is merely a number.
Does it matter exactly WHY there is a pain if it’s unavoidable? My answer is unequivocal – yes in almost all situations. In our society, we have this need for diagnosis and labels. “Knowledge is Power!” Wherever the necessity stemmed from, modern insurance companies and many other forms of supports, such as Special Education Services within the public school system, require these labels and proper diagnosis to procure these needed and often crucial treatments, durable medical equipment (wheelchairs, walkers, etc.) and services. Also, I am reminded that my knowledge and reported symptoms will help to treat, if not eliminate, this despicable disease, FA.
Do I really think I can avoid the inevitable? Do I think if I keep blaming outside factors my legs will be the only part of my body that will be affected by this relentless disease? So maybe it is not denial? Maybe it is my way of looking for hope where there is little hope to be had when you have FA. No, my continual hope is actually me trying to keep my fire lit because I am not done fighting yet!