January 2010
My brain tumor journey is full of physiological losses such
as normal eating, normal sleeping, normal vision, normal appearance, normal pain levels to name a few. But the physical
loss that looms largest is a big one - freedom of movement. I feel almost desperate to try and describe what
it's like for me on my feet. I should start by saying that even when I'm still I have a swimming feeling in
my head, sometimes with a feeling of building pressure or a full-blown headache. This starting point doesn't bode well
for my moving around! Honestly, I don't know how I do it, except that the alternative would be to completely give in
to the difficulties and not move. As it is, I wonder how I've only had two bad falls since my 3rd surgery when I noticed
all of my deficits had worsened. (I sure appreciate when people put out their stiff arm and let me use it to go up or
down a curb if there's no railing.) The most discouraging thing is that even with a rolling walker, a grocery
cart, or the one-armed crutch, I'm still wobbly and scared that I'll tip over.
My legs feel either like overcooked pasta or frozen
tundra, and usually one leg feels like it is collapsing while the other refuses to bend. It feels like weights alternate
between my shins and feet which cause me to veer off course. My wonderful physical therapist Valerie Gibson
first made me aware of the feet as one of a person's balance centers. Sure enough, I feel inordinate sensation
in my toes and balls of my feet, like they are hanging on for dear life. My toes scrunch up just to help keep
me from falling. Having one foot even slightly off the ground feels extremely dangerous. I literally cannot walk
in a straight line. I had a little of this problem in 2000, but it improved within a year. I looked
up the definition of ataxia on Wikipedia: "Ataxia is a neurological sign and symptom consisting of gross lack of coordination of muscle movements.
Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that
coordinate movement, such as the cerebellum." Bingo, the cerebellum is mentioned prominently
in both my 2nd and 3rd operative reports.
So much is "firing" wrong if that makes sense. I've
lost control of my limbs the way I used to control them. It doesn't help my balance that my left arm wants to fly away
and I hit my elbow on the wall all the time!
My mobility problems feel deeply rooted from my inner core.
It's like a force that my body has tried to fight but lost.
Another strange sensation is that I know my legs are adequately
muscular, yet within a few minutes on my feet my legs are so tired I collapse (I shouldn't use this catastrophic word
but it describes what I do the second I see a chair). My problem is not from lack of strength, I know it.
My hand-eye coordination and my proprioception have vanished
and those were two skills I took for granted - how I'd love to have them back! I'm sure they would help me feel more
at ease on my feet and in the world. MedicineNet.com defines proprioception as "the ability to sense stimuli arising
within the body. Even if you are blindfolded, you know through proprioception if your arm is above your head or hanging by
your side."
I often think of what it would be like to just move again
without effort - I remember in my mind but my body won't cooperate. I long for my running days yet I can't even go two
strides. I would love to just move without thinking or feeling. Sometimes it cuts like a knife to be around people
who are moving freely the way I used to.
I'm disappointed that I can't find the words to express more
eloquently what a challenge it is to move, but hopefully this is a rough explanation. I certainly am grateful for the
level I have but the way I am feels like a "no-man's land" and the prospect of living in it is daunting. Thank
you to the professionals and my family and friends for helping me.
August 2009
"All love begins with hope."
Thank you to angel Jane Combemale for this quote, the perfect way to sum up the annual Race for Hope. It's
been over three months since this year's race, but the spirit of the event continues to resonate. People try
to describe the event with words that just don't do it justice, but inspirational, hopeful, sad - these are apt - and they
all blend together. This year I personally felt these swirling emotions.
In years past, I was able to
walk most, if not all of the 5K course, which winds in front of the US Capitol starting at Pennsylvania
Avenue right where I worked downtown in 1993. This year, though, my unsteadiness
and overall weakness and pain, topped off with the trach, meant I could only walk the first 100 yards and then had to sit
under a tent during the race. It poured off and on so at least I stayed dry! It was the first year
I'd brought my cane with me to Freedom Plaza
(even with a cane I am wobbly and feel seasick when I move). My heart beat faster when I watched survivors make
it across the finish line in their unmistakable yellow tee-shirts. I remember how I was slightly embarrassed
in years past when my name would be called - "Carol Welsh - Survivor." How things can change! This year I felt demoralized
that I wasn't in that special group as I had been the last five years. I was crying inside but I kept my chin
up surrounded by the love and care of my Madeira friends who stuck by me every minute.
I was inspired by the outpouring of love and support from the thousands of people who rallied for "my" cause.
The excitement for the possibility of a cure for brain tumors was palpable. The sad thing about the survivor shirt
is that there just aren't that many... out of 10,000 participants, there are probably 300 survivors - if that.
Wearing the shirt produces a whirlwind of emotions inside me - gratitude to be alive, grief for the people who have died,
and appreciation for all the walkers, virtual runners, volunteers, and sponsors who raised over $2 million to fund brain
tumor research and patient support services.
The spirit of the Race is exemplified
by an outstanding individual, David Cook, the 2008 American Idol. You might know David's story - his brother died of
a brain tumor the very night before this year's race. Yet David bravely fulfilled his promise to attend, ran an
excellent 5K, and led a team that raised over $200,000 - incredible! Check out David's post-race speech at
http://www.youtube.com/watch?v=lmizGmyc6Hw. He greeted every one of the survivors and posed for countless photos; what a genuinely nice guy! I got
the feeling he would have enjoyed having more time with the survivors than the 9AM start permitted.
Another fine example of the
fantastic spirit of the Race for Hope is the marathon team from the US Military Academy at West Point.
For the last several years, the cadets have given up two days of their incredibly busy schedules and come to Washington. The cadets arrive at 6:00AM to help with
set up, run the race, and stay for the clean up. Rain or shine, you couldn't ask for a nicer or friendlier group.
If you haven't joined my team
before, I encourage you to check out the Race for yourself - Sunday, May 2, 2010. I guarantee you will be inspired,
hopeful and sad all at once. See you at the starting line!
April 2009
If you are familiar with brain tumors, you might have heard the phrase "disguised disability." I
first read it in Paul Zeltzer's book called Leaving the Garden of Eden. I'd like to share my experience, as I
consider this to be one of the most important aspects of my brain tumor story. From the wonderful people who have contacted
me over the years, I know my experience is shared by many.
Consider one of the many invisible problems that people like me suffer from - even with my special eyeglasses, when
I look at you I'm often seeing two and the images float around. It's a great reminder to never pre-judge someone you
see using a handicapped placard in a parking space. There could be quite a lot wrong that isn't visible on the surface.
Double vision is just the tip of the iceburg... Here are a few more examples of disguised disability:
the moonbounce: remember this attraction when you were a kid? You went in barefoot, and to stay upright
you had to balance deep down into your toes, and sometimes you couldn't help but fall. You felt the air bubble under
your feet. You never felt steady - cool! It was fun for a finite period of time, then your turn was up and you
had to get back in line if you wanted to go again. For me, walking around is like being in a permanent moonbounce.
Unfortunately, I never get to come out of the tent! Using a cane isn't the remedy for this, though it helps me get around
mostly by coaxing others to keep their distance from me.
frozen joints: I wish I could use the Tin Man's oilcan liberally. For that matter, I'd like to see
the Wizard of Oz - maybe he could fix all of this! My complaint is not just stiffness, it's a combination of numbness,
shaking, and freezing, all in different body parts. My neck, pelvic bones and hips are the most iced but my right knee
is also stubborn. I have tried many therapies to address this sensation and lack of fluid movement;
so far nothing has worked. Every small movement even in a sitting position is like a forced march.
queasiness of the brain: this sounds bad, and it is. Imagine what typical nausea feels like;
now imagine you could have that in your brain instead of your stomach. I have yet to find a better description of the
disconcerting fog that I have lived in since my first brain surgery. It has improved for periods of time, but with every
procedure it has gotten more pronounced and lasting. Some fellow patients talk about a swimming feeling or cobwebs.
Dr. Fine once expressed his appreciation for my attempt to describe this, and he said, "I'm so sorry you have to deal with
this, it must be horrible." He is right. I would give anything to be awake and out of the fog. I definitely
feel the difficulty in seeming to live in a different world from everyone else. I almost can't stand it any
longer - I'm ready to be part of the "regular" world again.
proprioception: Another disguised disability is my lack of proprioception. To understand a bit about
this, try closing your eyes, holding out your hand, and then touching your nose with your finger. When I do this,
my finger winds up somewhere in the vicinity, but not on my intended target. Obviously it's not that important
if you cannot do this particular test, but when you apply this deficit to navigating throughout our world, it's really challenging
- and uncomfortable.
Bottom line: things aren't always what they seem. For brain tumor patients like me, remember the significant
impact and sometimes relentless presence of disguised disability. These problems might be invisible from the outside,
but they are exceedingly real.
Thanks for reading!
Future topics:
- feedback from the brain tumor community
- of Dragons and Garden Peas
- extreme feelings
- the basics of sleep apnea
- what makes an outstanding therapist
