MINIMIZING MY REAL DISABILITY
In just a few hours, the surgery I have been waiting for since July 9, 2018 will begin. Why it has taken so
long to schedule is anybody's guess, perhaps detailed in another post, but it definitely had nothing to do
with me. I was ready to go to the hospital the minute Dr. Bernasek told me that a femur replacement
was the best solution. Not a total replacement, but a more experimental approach, customizing part of
a femur, and adding knee and hip replacements to stabilize it. I was all in. With each cancelation,
however, eager anticipation has morphed more into a blend of hope and fear.
And finally, after more delays and postponements than I care to enumerate, today's the day.
Technically, I've almost always had a disability. Due to a rare childhood cancer, I've been totally blind
since shortly after my fifth birthday. But for as long as I can remember, that never felt like a disability.
Learning to read braille in first grade, I could read better, faster, and more than any sighted kids in my
family or neighborhood and, from roller skating to tree climbing, there was always a way.
It was just part of me, this not being able to see thing, but never a disability.
My hearing felt like more of a disability. It started leaving in adolescence, but I didn't believe it till I was
26, had my first beautiful baby, and realized I couldn't hear her cry upstairs without the electronic
monitor. When I learned in my thirties that the cause of hearing loss was that radiation they zapped me
with to save my eye in early childhood, well, it made it easier to understand and maybe accept. For
decades, I've been grateful to live in a time when hearing loss could be made less traumatic with
technology.
The real disability came calling just under three years ago. Initially, it was the fault of the cancer in my
leg in 2003. Radiation and surgery saved my life but weakened my femur. Then, 13 years later,
December 1, 2016, that femur abruptly snapped in two, mad about the insertion of a hip replacement.
That was abrupt, unanticipated, and brutal, but I spent 2017 being grateful for life and working hard to
return to being an ambulatory human.
Fast forward to January 21, 2018. Not quite fully rehabilitated, I was walking well with an orthopedic
cane, and thought it in high time I went on vacation. I went to Ski for Light, not to ski as I had done so
many years in the past, but to volunteer in the information room, help wherever possible,and bask in the company of friends old and new.
Sadly, the first night in the Nevada hotel, I mistook where I was and stepped off a staircase -- like
stepping off a cliff -- and spent the week in the hospital. My femur was again broken, in new places, and
loads more metal was inserted to stabilize.
You might say my quality of life significantly plummeted. Since then, I have only been able to walk with a
walker. I was getting stronger when given some unfortunate medical advice in July 2018, but again,
that's for another post.
Dr. Bernasek at Florida Orthopedic advised that the best solution was this surgery I will finally have
today. I have often felt a certain bewilderment at the extraordinary lengths some friends with impaired
vision have gone to in order to gain some vision. For me, blindness has not been a disability. These past
two-plus years, however, the inability to run – or even walk -- -down the street, alone and unafraid, has
felt like a gigantic disability and profound loss.
Every day I am grateful -- that it is only a broken femur, that it is not cancer, that I am alive.
Rehabilitation will undoubtedly be long and probably grueling. I hope I'll be up to the task, and look
forward to the adventure of learning new things. In 2003, I knew without doubt that it was the prayers, warm thoughts, and positive energy of friends everywhere that enabled me to sail through radiation and
surgery. I'm putting this out there in hope of yet another similar miracle. Thanks in advance for any
good energy you beam on my behalf!
