Perhaps a better title is ‘What’s it like right now for me to have
MS?’ My MS symptoms change from week to
week (or more lately, from minute to minute) as the disease presents itself
differently. Sometimes it’s hard for my friends
and family to appreciate the full impact of my MS. Do I need assistance with something? Maybe just a little extra time? Should they ignore my struggles and let me
deal with it on my own? Is this
something that has nothing at all to do with MS (a cold dragging me down, a few
drinks, or my charming personality)? In
the past, I grew frustrated when they couldn’t understand. Now, I realize how difficult it is for me to know
what this disease is doing to my body at the moment. Just like I have no idea what my peers with MS
are experiencing, I can’t imagine someone else trying to understand what is
going on. Sure, some of our symptoms are
the same but it’s that special combination of effect, severity, timing and
duration that makes every situation different.
With those disclaimers out of the way…what’s it like right
now for me to have MS? Many of my symptoms
are unfamiliar ground, as I learn to live in a new body. The truth, however, is that I’ve experienced
most of these symptoms before. Many of
you have as well. The issues I’ve
experienced before are now the physical demonstrations of what MS is doing to
my body.
Some of these may sound familiar to you:
·
My left arm sometimes doesn’t work very well (or
at all). I remember the same thing happening
when I was a younger man. Back then it was a sort of tough guy pride
from when I would go to the gym with my pals.
In the gym everything was a competition. The only way to “win” in the
weight room was by lifting more weight for more reps. If you did more, you won. There weren’t physical prizes but that smug
pride was worth more than gold. Maybe a
quick comment thrown into the conversation later that night when we all went
out for some chicken wings and beer! The
problem came when you couldn’t even lift a chicken wing up to your mouth. Your arms felt fine but they seemed to have a
400# weight holding them down. That was
the point when your win faded and your pals realized that you were spent. Like any loving 22-year old male buddies
would do, they laughed, flicked your sore bicep and threw fries at you! They knew you’ll be back soon, but for the
moment they were relishing in their “win”.
When this happens to me these days, my pal is Eleanor. My 3-year old daughter watches me struggle to
lift my fork to my face. When I can’t,
she asks “are you not feeling OK today, Daddy?”
“I’m OK, Ellie,” I tell her, “I just need a minute.”
·
My legs (mostly the left) have all sorts of
challenges. Foot drop, knee
hyperextension and muscle spasms are all side effects of the damage to my
nervous system and its ability to maintain coordinated control. I experienced all of these, in one fashion or
another, in my active pre-MS days.
Damage on the football field, the rugby pitch or the boxing ring was
swift, violent and had many of the same side effects that I feel now. Along with the injuries were sore muscles and
painful leg cramps. These issues came
and went, maybe they slowed me for a bit, but I would work through the pain and
get myself back into the game as soon as possible. I’m still doing that, working through the
pain and getting myself back into life.
The only difference now is that these ailments are a constant companion. Time and rest don’t make them go away.
·
My right arm works fine, but I can’t really feel
it. I remember when I would lay on the
sofa while watching TV or sleeping. My
arm would ‘fall asleep’ as I remained still.
After a while I would get up and move but my arm was still numb. I could move it but couldn’t really feel what
it was doing; I’d poke at it but still couldn’t feel anything. As the blood started to better circulate in
my arm I would start to get that pins-and-needles stinging sensation. It was still numb and I couldn’t really feel
outside touches but that awful, intense stinging was there! There was nothing that you could do until it
finally went away. Mine hasn’t gone away
in 14 years.
·
My speech pattern tends to slur, sometimes worse
than others. There is also the annoying
habit of a stream of drool developing on the side of my mouth and sometimes I
don’t notice it in time. This classy scene
is reminiscent of the late night condition that same group of young guys were
in after one of those long nights of wings and beer (not me, of course).
·
When I was a kid, food “going down the wrong
pipe“ was often a result of eating too fast at the table. It tended to lead to a lecture on proper
table manners. These days aspiration of food
into my lungs has an awkward, uncomfortable and potentially dangerous result.
·
Weakness in my left hand and arm is similar to my
childhood memories of the first big snowfall of the year. All the neighborhood kids would go out to
play, building forts, having snowball fights, making snow angels and creating a
good ol’ Frosty the Snowman! Hours and
hours out in the snow and ice was worth the price we would pay when we came back
in with cold, wet gloves (if we cared to wear gloves at all). It was a challenge to do anything, like
grasping the door handle or unbuttoning your jacket. I don’t think I ever tried it but sitting
down and writing with frozen hands would have been pointless. The hands would warm. When they did that pins-and-needles stinging came
on in full force! Again…14 years and running.
·
Blurred vision is nothing new. When I was a kid it was one of those magic
pictures: stare at a photo of seemingly random dots and relax your eyes. Your vision blurs but suddenly, a 3D image of
a flower or cat would jump out at you. Pretty
cool, especially when no one else could see it.
It’s called an autostereogram, described as “the visual illusion of a
three-dimensional scene within the human brain from an external two-dimensional
image. In order to perceive 3D shapes in these autostereograms, one must
overcome the normally automatic coordination between accommodation (focus) and
vergence (angle of one's eyes).” (Wikipedia, the free encyclopedia, http://en.wikipedia.org/wiki/Random_dot_autostereogram, November
2013). I no longer have ‘automatic
coordination’. I’m just the opposite. Now I have relaxed, blurred vision all the
time. I spend a lot of energy pulling
those images together into crisp and clear 20/20 vision. With a little bit of effort, I can do it most
of the time. The real challenge starts
when my body can no longer hold that normally single three-dimensional scene.
So, you ask me what’s it like to have MS? The answer is simple:
It’s like being a weight lifting,
boxing, rugby playing athlete in my prime who sleeps a lot on the couch, parties
like a rock star, wolfs his food down, builds snow forts and is the
neighborhood champion at autostereograms.
So…you know…that’s cool!
Kevin Byrne - Portland,
OR
