Sunday, May 31, 2009

Ranting Anew

Sometime ago, the Butterfly Cauldron blog, found at, posted a piece that discussed life while working full time with a disability and dealing with not only the perceptions of others regarding what appears to them to be laziness, but also dealing with one's own frustrations, thwarted ambitions and financial concerns, among other things.

This piece and all of the comments which followed hit me squarely in the gut. For almost two years now, I have been going from one doctor's appointment to the next trying every available protocol for a very damaged knee. I thought, it appears incorrectly, that like the other chronic issues I deal with stemming from living with cerebral palsy for almost fifty years, that it would be manageable, the consequences relatively minimal and that I would find a job in my field after completing a graduate degree.

After an allergic reaction to the latest medication, I was sent to see an arthroscopic specialist who informed me that the knee damage was severe, that the knee was now twenty years older than the rest of me and that I would not gain any benefit from arthroscopy. After having been warned off total knee replacement by another specialist, I was left with the possibility of a partial replacement of the knee, although there is nothing in the medical literature to suggest this procedure was optimal for patients with CP and those with my condition who have had joint replacement are no longer walking.

The problem is the joints are not constructed to withstand the variability in gait or movement found in those with CP, thus, they have no predictable life span. That leaves the patient with greater possibility of joint failure, numerous surgeries more often over the remainder of the life span and, with any surgery, there are other risks and recovery issues to consider.

For those who may be unaware, cerebral palsy is a neurological condition usually stemming from damage to the motor and often other areas of the brain. In my case, it effects my mobility, balance and coordination and although my case is fairly mild, age and time have brought stress on joints because of the way I move and walk. This has led to osteoarthritis and other secondary conditions that have become increasingly well known among adult CP patients, although until the current generation of doctors, these were not discussed or documented, mostly because docs aren't trained sufficiently, don't see large numbers of adults with CP and until recently, adults with CP often failed to live normal life spans.

Now, we are living into old age and acquiring conditions due to the CP that complicate already thorny issues such as balance, mobility, work, independence and quality of life. Fatigue has become commonplace for me, as has pain, which varies with the duration and frequency of activities, and since I lack the talents of a soothsayer, I've no idea what to expect next and how that will effect the delicate balance achieved in my life thus far. My doctors, though sympathetic, largely put out fires rather than preventing anything, so they cannot tell me what to expect.

I had planned to graduate, get a job and move, working until traditional retirement age. Since my knee did not become problematic until recently and I had no reason symptomatically speaking, to assume life would not continue as it had for many years, this new development has left me worried financially, angry and frightened of the future by turns emotionally and wondering at the snail's pace of our medical and social service bureaucracy.

These concerns are not new to most of you, and you may be shaking your heads and thinking I might have seen this coming, but honestly, I did not. I am waiting for a sports chair with power-assist version three wheels, a bit like waiting for Godot,which in itself has been stupefyingly slow, and trying to figure out how to plan for several years ahead.

Unlike Butterfly Cauldron, I do not yet have a plan and find myself increasingly frustrated in trying to formulate one. Since college, I have always lived on my own and rarely had need of a chair or any other assistance. Until now. My ambitions toward a doctorate have been suspended, and I'm not sure about my work options anymore. I also have three chronically ill pets and will have to make arrangements should I no longer be able to live with them or provide their care.

Damn! I thought I had more time and did not expect to be thinking about these things before turning fifty...


  1. FT, if you figure out how to plan ahead for future disability, please let me in on the secret. I can't get doctors to figure out what's wrong with me now, much less tell me what to expect next year or in five years.

  2. Hi Yanub,

    I know none of us has the ability to plan for every possible contingency, but I am starting to get information on SDI and other services and try to figure out what I can do if more crap happens...Living with a chair now has been daunting enough...

    Are you having any luck with your job issues?

  3. I am sorry about all these changes for you. I am also amazed by the snail's pace in medicine and medical services.

  4. Hi Frida,

    Thanks for your kind words. I'm staying on top of the chair thing as much as possible, looking at cutting everything I can budgetarily and working with someone to figure out the financial end of things. I will also see a hand therapist and speak to someone at Voc Rehab.

    Aside from that I;m working on a finding aid for a special collection...