In the summer of 2011, I had been living with MS for 12
years. Wow, how time flies! Quite a lot had happened in my life since my
diagnosis. Ups, downs, and just plain
sideways at times. But in 2011 I was
strong; probably the healthiest I have been since diagnosis. I climbed Mt. Rainier and ran a tough 10k
‘mud run’ obstacle course before my MS reared its ugly head with a subtle, yet
significant, signal: my balance. I fell
and broke my leg while roller skating.
Yes, I said roller skating…
Setbacks
That fall was the start of a series of events (both related to
the fall and random) that led to the toughest year yet. Over the next 12 months the mountain of
issues climbed higher and higher.
·
I had my broken leg surgically repaired with an intramedullary
nail inserted the length of my tibia; my first hospital stay.
· I spent two other nights in the hospital tethered to a heart monitor.· I visited the emergency room four times and had 16 other medical appointments.· I experienced "mysterious" medication unexplained side effects like deep muscle infections, bleeding in the eyes, and one bout of anaphylactic shock. · I was prescribed 11 different medications in an attempt to and stem the progression of my disease.
· I spent two other nights in the hospital tethered to a heart monitor.· I visited the emergency room four times and had 16 other medical appointments.· I experienced "mysterious" medication unexplained side effects like deep muscle infections, bleeding in the eyes, and one bout of anaphylactic shock. · I was prescribed 11 different medications in an attempt to and stem the progression of my disease.
Daily life really starts to take
its toll when MS becomes such a burden.
For me, the loss of all that physical progress was crushing. I spent every last ounce of energy to get
through all the doctors, medications, pain, frustration, and trying to start
some rehabilitation. Through all this I
tried desperately to reduce the impact my disease had on my family, friends and
my job. For Brie, MS turned her from a mom
raising a 1-year along old with her supportive husband to a overwhelmed working
mother and caregiver.
The funniest part (funny?) is that
all of these MS related issues (balance, medication and reactions, appointments
and testing) made for one horrendous year without even one noticeable MS
attack! Every day my body is fighting
the damage MS has already done and the attempts to hold off further disease progression. Someday soon there will be better, safer and
more reliable treatment options. Today,
this is the best available.
Motivation
The recovery started almost
immediately. Even while plagued by issue
after issue over the next year, my progress slowly outpaced setbacks. With my leg in a cast, I missed the 2011
BikeMS but vowed to be back for 2012. So
that became my focus. Once I was healthy
enough, riding was great therapy for my leg.
My worsening balance issues called for a modification to my strategy: a
new trike! I shared the excitement with
you earlier this year in “Adjustments, Concessions and Embracing the
New (aka, “My Bicycle”) Part II”.
Riding and training were the keys to
my physical recovery. Support and
motivation from my family and friends were the keys to hanging in there emotionally. The only way I was going to recover and
rebuild was by living my mantra: Never Stop…Never Quit… Sporting my snazzy bright yellow trike, my
goal was to do that in style! My target
was, of course, to ride the full 153-mile event this year. The hills would be the deciding factor; or
should I say my legs on the hills would be the deciding factor!
I was slowly getting healthy again
with just a few months left to train. Training
was intense for a while. Hills on a
recumbent are the equivalent of towing a sea anchor!
My first true test was July 14th
and 15th. My brother, Tyson,
and I rode STP (Seattle-to-Portland).
That’s a 205-mile ride, but a little less grueling due to a pretty flat
route. 113 miles in Day 1 was a
success! I made it to our overnight
rest-stop in one piece, albeit a little sore.
Rest, recovery, and just a little bit of celebrating our success gave me
enough energy to roll back into Portland on Day 2.
That was good but I needed more,
so I kept training. After a year of
broken bones, surgeries, infections, and the never-ending onslaught of new
medications & treatments I had just one question as BikeMS neared. How far can my body go? My training had been focused on just that,
rebuilding the strength and endurance in my legs. That new titanium rod may make my leg
stronger but my muscles weren’t quite the same as they were as when I climbed
Mt. Rainier a year earlier. So building
the strength, speed and endurance needed had been my goal. Weakened muscles from lack of use were
compounded by the need to train a whole new set of muscle groups; riding a
recumbent trike is way different than any other experience riding.
Pushing Limits in BikeMS
My target was to see just how far I could push myself on the
Day 1 ride. There were three route
options to take: 30, 60 and 100 miles. I
wasn‘t sure what I would have in me. 30 would
be manageable. 60 would be tough. The 100 route looked insane! I couldn’t leave anything on the table,
however. If I finish the 30 or 60 I will
always wonder how far I could have, should have, gone. So I opted to tackle the 100 mile route.
The ride was a physical roller coaster for me. Not just for the literal slow (and sometimes
steep) climbs and drops of the Oregon Willamette Valley, but also for the
bursts of energy I was able to find just as I thought there was nothing more
left in my legs.
How far could my body go?
Well, on a recumbent trike in 103⁰ heat my body went exactly 81.4 miles
before it said “no more”. My left thigh and
my right knee finally wore out. Both are
victims of MS related surgeries and muscle/nerve damage over the years. I stayed hydrated and fully lathered in
suntan lotion, but my legs were just not strong enough. That day all I could muster was 81.4
miles. After being picked up I sat on
the SAG Wagon (support and gear) with other riders and pondered how I was going
to do more next time!
By the way, yes. I
did say 103⁰ heat. Brutal heat is an
understatement. The last thing that any
rider ever wants is a strong headwind but there were a few times I would have
paid good money for cool air blowing across me.
Any air, for that matter. I’m not
sure how hot it reached down low to the asphalt on my trike but at one point I
looked over and watched my odometer screen crack as it warped in the sun! It was hot.
I was happy to make it back, kiss my wife and daughter and get some ice
on my knee!
Saturday night we rested, recovered, celebrated a hard day
of riding and listened to the MS Society’s program of events. Honoring those who ride and support BikeMS is
always a huge focus. We know it’s a lot
to ask, and we appreciate everything done in support of the cause (riding,
donating, supporting). What a great
night indeed!
When I awoke on Day 2 I immediately thought of my
legs…..wondering what it would feel like to pedal, walk, or even stand. I’m happy to say that I had no problems at
all! A shorter route, lesser hills and
lower temperatures combined to make the full route quite pleasant. Still reeling from the lessons learned on Day
1, I spent much of my time on the road planning for next year. Planning how to train and rebuild my body for
the next ride. After a tough year, I am
so happy to be strong and healthy but I still want more.
BikeMS 2012 ended on August 5th. By the end of the month I was in physical
therapy, working on building the strength, flexibility, mobility and balance
that I have lost after years of MS. I
almost forgot how much rehab hurts, but less than a month into it and I already
notice improvement. As I start to think
about 2013 all of my targets are Further, Stronger and Faster!
This is now….
As the summer of 2012 draws to an
end, I can happily thumb my nose at MS one more time. You threw all that you could at me and I came
back strong! I have the stubborn
dedication, dedicated healthcare team, and loving support from my family &
friends that will keep me going. I know
that my MS is not ready to give up. Even
now my body is going through a new round of pain and debilitation. Will it last long? Will it get worse? I don’t know.
All I know is that I will be ready to ride for BikeMS 2013…whatever it
takes!
It will never
stop…nor will we
It will never quit…nor
will we
This is why we ride!
Kevin Byrne
Portland, OR
