Adjustments, Concessions and Embracing the New (aka, "My Bicycle")

This started out as a story to share with you, with a focused theme that was quick to the point.  Somewhere along the way I lost my narrow focus (typical for me).  What I ended up with here is more of a reflection of the adjustments and concessions I have faced in my fight with Multiple Sclerosis.

When I was diagnosed with MS, the doctor told me that I would never be able to fly a helicopter again.  That hurt, but I learned to deal with these things “that were happening to me.”

When they medically retired me from the Army I hurt again.  This too was a challenge “that was happening to me” I overcame.

The day I told myself I couldn’t ride my bicycle anymore nearly destroyed me.

It almost seems easier for me to handle unwanted changes if they are thrust upon me; that way I have a new challenge that I need to overcome.  Maybe it’s the Army mentality rooted deep in my psyche.  If you hurt and beat me down in a battle then I will adapt, overcome and find another way to win the war!  In the end, those adjustments pushed into by MS were merely opportunities for me to become a better man.

Example #1: my career

My plan in the Army was always about the Army.  I am one of the lucky people who got to do exactly what I wanted to do every stage of my career, and excelled every step of the way. 

·         Started with West Point,

·         Branched into Aviation,

·         Trained in scout helicopters,

·         Rolled right into a transition on the AH-64 Apache,

·         Assigned to Fort Bragg to lead an attack platoon,

·         Finished my Platoon Leader assignment by moving right in to a primary staff officer position,

·         Advanced Course and Maintenance Officer Course, and then

·         Assignment to Korea to walk directly into a Cavalry Troop command, followed by…

·         MS.  Pow!  MS was winning this battle….

                                               

My only option at that point was to start fresh.  I control my fate, so I stayed in Korea for a while longer (9 more months).  When I finally left, I transferred to Walter Reed for some final tests.  During that time I worked with civilian recruiters, polishing my professional resume and rolled right in to a fantastic career in Strategic Sourcing and Supply Chain Management that has taken my all over the world!

Pow!  This battle’s over, Kevin won!!!

Example #2: my personal life

After I made my initial transition to the civilian life in 2000, I thought I had it all figured out.  With my new corporate career I spent some time in Pittsburgh and then moved to Europe for a while, finally coming back and relocating to New York City.  I was born and raised in Bronx, NY so I was finally coming back home after 12 years away.  I thought I had it all and would always succeed at keeping those demons MS created at an arm’s length.  MS has a funny way of reminding you that those demons are always there…always pressing me…physically…mentally…emotionally.  In 2003, the demons almost won.  Before I lost the last shred of sanity left in me, I threw my hands up in the air and reached out for help.  After three years, MS was tipping the scales of the mental and emotional battle.  Pow!  MS was winning this battle….

Would I ever be healthy and happy again?  Healthy and happy enough to succeed?  Heck, how about enough to function?  I think that every person I know with MS has reached this point.  The challenge is to redefine life, what matters and what is important enough to work on.  I did that for myself.  With the help of family, friends, doctors, therapists and time I learned to live a new life as a new man.  I learned that there are some controls I don’t have.  No longer bound by the fears of keeping my MS at bay I focused on healing myself mentally and emotionally.  It was that healing that enabled me to love myself and, ultimately, to love others.  I found my peace and then she came into my life: Brie and I were happily married in 2006.  On April 28, 2010 we welcomed baby Eleanor into the world!  Perfectly happy…

Pow!  This battle’s over, Kevin won!!!

There are so many adjustments and concessions that Multiple Sclerosis requires.  Some of the most difficult adjustments are the ones I am forced to make on my own.  I must make them before I am pushed past the edge or before someone else makes the decision for me.

But I’m learning….

Example #3: my bicycle

One of the ways that I have faced MS is by being part of efforts to fight the disease.  The National MS Society’s annual fundraising events have been my cornerstone.  In 2003, I rode in my first bike event (Pennsylvania’s MS150 “Escape to the Lake”).  I was finally healthy enough to ride.  I wanted to prove that MS won’t win; prove it to myself and to others around me…  That was my plan and it seemed rather successful.  After “Escape to the Lake” I rode in New York City in 2003 and Delaware in 2004-2007, riding with Brie (and occasionally a friend or two) as Team Amulet.  Later that year Brie and I moved out west and I joined up with the Oregon Chapter for their 2008 ride.  Every year our fundraising goals are set higher and higher.  My personal rehabilitation and support efforts were my fundraising and support efforts for my peers.

Riding a bicycle for these events has always been a challenge for me: my problem is holding on to the handlebars.  MS has weakened my upper right side.  Control and feeling have been replaced by the numbness and that glorious “screeching sensation”.  Concentrating to hold on to the handlebars took every ounce of strength I had.  I remember the cold, wet second morning in 2006.  Both of my hands were so numb that I just couldn’t go on.  I quit the second day’s ride about 10 miles into the 75-mile route.  Failing hurts; quitting is worse.  I felt like a quitter, so I was determined to never let my MS get me again.

2007 and 2008 events were challenging but I finished both rides.  I was confident that I had found the way to overcome my challenge and hold on to the bike.  I started training for ’09.  Riding to/from work downtown was a great way to prepare.

I don’t know if my hands have worsened or if I just lost my concentration for a split second.  Either way, I stopped holding on and ended up sprawled across the road with screeching car tires right in front of my face.  I finally had to admit the truth: I couldn’t ride my bicycle anymore, at least not without running the risk of killing myself.  The thought of losing my grasp as I flew down a road at 40mph was terrifying.  For the first time in my war with MS, I had to voluntarily give up something I loved.  That was the worst one yet.  Pow!  MS was winning this battle….

In the past, I recovered from what was taken by embracing the new.  So how do you recover from voluntarily giving up something you love?  It might seem obvious to everyone else but it took me a while…you recover the same way.  Embrace the new.  My new adjustment was a new bicycle; a recumbent bike where I was no longer constrained by the need to hold on with a death-grip.  This was my new lease on life, but not without some challenges of its own.  37 years old and last year’s challenge was learning how to ride a bicycle.  A humbling experience indeed! 

Pow!  This battle’s over, Kevin won!!!

Fast forward to now: a year later and I am training for July 31^st. That weekend I team up with this year’s 42-person strong Team Amulet to ride 133 miles through Oregon’s Columbia Gorge and Willamette Valley.  We aim to raise $50,000 and increase awareness for everyone fighting MS.  My message is strong: It is a fight. For approximately 400,000 people with MS in the US and 2.5 million worldwide, the fight is not over and it won't be over until the cure is found.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

Sharing My MS with Others

My diagnosis of Multiple Sclerosis came while I was serving in Korea, commanding an air cavalry troop (D/1-6 Cav).  I remained in-country for several months, using the time to prepare for when I would come back to the US and have to start my life beyond the Army.  I spoke with a recruiter several times who helped me begin the job search and transition into this new life.  His first point of guidance to me, and my biggest takeaway to share with you, was to become familiar with ADA (the Americans with Disabilities Act) and my rights as a disabled veteran.  For me though, sharing my MS with others goes so far beyond my rights; it’s my pride and fears that are the toughest issues!

I guess I am one of the lucky ones (?) who usually ‘doesn’t look like he has MS’.  I have been told that before, though I’m not sure what that really means.  What I do know is that I spend a lot of time managing the appearance of my disease.  How do others see my MS?  That is my focus because how others see my MS is how they see me.  There is always that battle within me; the fight between avoiding the stigma I don’t deserve while at the same time getting the support and understanding that I need.  I hope that I am doing it right.

Hi, my name is Kevin and I have Multiple Sclerosis

I don’t try to keep my disease a close secret but I try to control when I tell employers, colleagues and friends.  Sometimes it is the only part about my MS that I feel I can control.  In the perfect scenario, I use my MS to my advantage.  I like to show others that I am capable, successful and strong, and then let them know in a matter-of-fact way that I have MS.  I love when I can change a person’s misconceptions about what a disabled person can and cannot do!

“If that’s the case, then why tell them about your MS at all?”

The simple fact is that I do have this disease and it will affect me.  Sometimes I know, or can predict, what those effects will be, more often than not it’s just random.  There are times when I need that extra support, help or understanding.  If people around me don’t know about my MS they might not be able to provide me what I need.  I normally ‘don’t look like I have MS,’ but my right side doesn’t ever really work.  I often can’t grab things that are handed to me.  Other times if I am holding on to something, I can’t let it go.  That can make for an awkward moment of silence when I am shaking someone’s hand!  There are the occasions when I can’t get up from a chair, or I lose control or my hand and throw or drop whatever I am holding.  It’s easier for me if others know the reason.  I have found that when those around me understand, they are more likely to help then to turn and walk away.

My other reason to talk about my MS is a bit more selfish.  I want to use my disease to help generate support and to educate others!  As a fundraiser for the National MS Society’s Bike MS, I use my MS as a personal appeal to others.  I figure that talking about my MS and its effect is a great way to solicit donations and support for the organization.  I talk about my challenges and the ways that the VA and the NMSS have supported me.  It has become my mantra.  Here is an excerpt:

It has been 11 years now since I first heard those words "You have MS"; a young captain in command overseas when my life instantly changed.  Like many others, my course has been a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back!  Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the NMSS have kept me prepared for today and whatever may happen next!

It is a fight. For approximately 400,000 people with MS in the US and 2.5 million worldwide, the fight is not over and it won't be over until the cure is found.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride.

Please support our fight!

Lie about MS?  Sort of… 

Sometimes I am just not ready to come clean about my MS or what it does to my body.  I have a few standby excuses that I keep available just in case I need them.  My favorite?  I like to ride bikes so when I showed up to work a few years ago on crutches and in a soft cast it was easier to blame a bike crash than the truth about my legs just giving while walking down the stairs.  That one has come up at again other times; like when I did a face plant down a carpeted flight of stairs; how else do you describe rug burn across your whole face?   I don’t like when I have to tell others I am that vulnerable.  I have MS and I want to be in control of how my disease is managed! 

Sometimes, my MS reminds me that’s just not the case at all…  Those are the times I fear: when I have no control over my disease, who knows or how they find out.  I am helpless in the face of the opinions and reaction of others.  My last battle with that was in early 2009 when I started my current job.  It was a dream job as a Sourcing Manager with Iberdrola Renewables, a renewable energy company based here in Portland.  I showed up Week #1 ready to again demonstrate myself as capable, successful and strong.  I showed up Week #2 with an eye patch because I was losing my right vision again.  Weakened by steroids, I had to come clean about my MS much earlier than I wanted to…and not on my terms.  Halfway through my jumbled explanation of my MS, why I didn’t mention it before and what to expect, my director cut me off:  “Don’t worry about it.  Tell me whatever you need; now about that contract you’re working on….”  My fears set aside; I was able to focus on reality instead of worries about impressions.

After 11 years I am still learning that fate, fortune, and circumstance can’t compete with the support provided by positive employers, colleagues, and friends!  For that maybe I am a lucky one!

Kevin Byrne - Portland, OR

www.brieandkevin.com

Thank you, Top!

I like to think of myself as a strong person.  I’m the one who stands straight when dealing with adversity; there to support the ones who “really need the help”.  My MS proves that’s not true.  It reminds me how much I lean on others and how much others carry me, support me and give me the strength to keep moving forward.  There are three people in my life who have carried me through some of my darkest battles with MS: my mother, my wife and my first sergeant.

When I was first coming to terms with my diagnosis, Mom was always there to support me and help me down this new path.  I retired from the Army at the end of 2000 and started a new life: 28 years old and learning how to live with multiple sclerosis.  Some of my worst days were still ahead of me.  At several points during that time, my only salvation was being able to lean on mom.

In 2004, I met Brie.  On the first date, I spilled every detail of myself.  She took it all in stride and, for some reason, still kept me!  Brie has held me through nights of tremors and long days in ERs and hospitals.  She knows when my hands can’t hold on to something and when I can’t let them go, when I am having a hard time walking and when my words start to slur.  Without even asking, she knows just how to help.  She’s there every time.

Before I was as ‘well versed in MS’ as I am now, everything was new.  I was still a Captain in Army Aviation, in command of a maintenance Cav Troop over in Korea.  I was diagnosed in September of ’99 but I stayed in command until June of ’00.  First Sergeant Michael "Top" Stewart and I were a command team for about a year and a half.  I remember thinking about how great he was for the troop.  After first becoming sick, I wanted to stay in command.  “I can do most of my job still.”  Besides, if I need to step back a bit, Top Stewart is always picking up my slack.

And so life went on for a bit.  Some days were worse than others; my right arm and my vision were the parts most likely to fail on a regular basis.  Thank goodness for Top!  Like First Sergeants before and since, Top Stewart would pick up the commander’s slack.  A commander’s time is always busy, so 1SG Stewart never questioned when I wasn’t around.  I was able to ‘take care of other stuff’ without having to worry about the troop. 

Right before 1SG Stewart was scheduled to rotate back to the states, I thanked him for everything.  I let him in on my little secret.  I told him how many times when I wasn’t around or was just sitting in my office, I wasn’t busy with other work.  I was just having trouble seeing or moving.  I figured that since he did so much to help carry me for those months I should at least let him in on the truth.

 

His only response…. “Yes, sir.  I knew."

 

He never let on that he was carrying me.  Fair enough, I guess since I never let on that I was letting him carry me.  Through the years we’ve talked a bit; even as a SGM he was still "Top Stewart" to me…Now, we’re both retired.  It’s a younger/healthier game!

It’s been a while since I last spoke with Mike.  Too long, in fact.  Time to reach out to an old Army buddy and let him know just how much his strength still carries me today!

Laugh Until It Hurts

Laugh until it hurts…

If it hurts this much now, I have a lot of laughing to make up for.  I’d better get started!

I always tell me friends “Try not to take what I say too seriously”.  When I want to speak seriously with them, they’ll know it.  Besides that, it’s as if about 90% of what comes out of my mouth is sarcasm.  Nothing bad, nothing hurtful.  Just fun.

I’d like to blame that on my MS (I’d like to blame all of my quirks on my MS) but that’s not true; at least it’s not entirely true.  Call it what you want to (sarcastic, witty, smartass) I have always relied on humor.  I just do it a whole lot more now than I did before.  For me, it softens the mood.  If there is no reason to be all serious and tense, I say “why not relax a bit and enjoy life?”  It definitely helps take the edge off…

When I was first diagnosed with MS in 1999 there seemed to be little reason to relax and enjoy life.  The numbness, pain, vision loss mixed with question.

·         What is going on?

·         What’s going to happen next?

 My diagnosis was faster than many others I now know.  Those first few weeks were dark.  Before I even really knew what was going on, I knew that my career was over.  The Army was the only thing I knew since I was 17 years old.  After all of the initial testing I was sent to Tripler Army Medical Center in Hawaii.  More tests and more waiting.  By the end of the week, I had all but given up.

I was in the office with the chief neurologist as she explained what was going on and what was going to happen to me.  The conversation went something like this:

“You have Multiple Sclerosis”

What does that mean?

                                <feel free here to insert your own first explanation of MS that you got>

What will happen to me?

                                “We have some treatment options that we can look at trying”

Can I still fly?

                                “No”

Will I ever be able to see again?

                                “We don’t know for sure.  You might in time.”

Will I ever get feeling back in my arm again?

                                “We don’t know for sure.  You might in time.”

For me, this was a make or break point in my new life with MS.  I reached out for the only way I knew to take the edge off of my stress.

Will I ever be able to play the piano again?

                                “We don’t know for sure.  You might in time.”

Good, ‘cause I never could before!

She was to taken back by that, for the next half hour I don’t think that Colonel blinked even once.

I sure felt better!

Laugh until it hurts…

Never Stop, Never Quit

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

 

Back in my Army days I was an attack helicopter pilot in the Air Cav.  By default, I love to tell stories…bear with me.

 

Back in the spring of 1993, I was a West Point cadet preparing to graduate in a few months.  I remember (though the circumstances have grown fuzzy) a conversation that our Commandant was having with a tour group on campus.  At the time, BG Robert Foley was one of three remaining soldiers on active duty who had been awarded the Medal of Honor.  He was describing the dedication that is groomed into young cadets, and how that dedication consistently shines in generation after generation of Army leaders coming out of West Point.  “They will never stop.  They will never quit.”  That was a repetitive theme that he shared through examples of moral & physical challenges that grads had faced.  It was quite stirring.

 

Stirring to the point that his theme became kind of a calling card for my dedication years later.  I was overseas in commend (D/1-6 Cavalry) when I was first diagnosed with Multiple Sclerosis in 1999.  Although my Army career ended in a flash, my physical recovery has taken much longer, I continue to come to terms with being told "you have MS". 

 

I have been able to fight back, though.  Through the amazing medical treatment that I receive from my doctors at the VA Hospital, my health is ‘stable’.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the National MS Society (NMSS) have kept me prepared (for today & whatever may happen next)!

 

A few years after first getting sick, I was healthy enough to ride my first MS150 (now bikeMS) for the National MS Society (2003 – Pittsburgh Allegheny Chapter).  It enabled me to progress my physical recovery and to give back to support those who had helped me since diagnosis.  I met my wonderful wife and she joined me the next year.  Ever since, we have been participating in NMSS bike rides everywhere we have lived.

 

The theme of our battle every year is simple:

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

 

Brie and I are preparing for our third year riding with the Oregon Chapter of the NMSS; I cannot believe this will be my eighth year!  The two-day event is so much more than just a bicycle ride.  For Brie and me, Christmas comes during the bikeMS weekend!

 

Because of the ride, I have to train year round.  That helps me focus my MS therapy.  When I am stricken more with my disease, I look to our mantra.  Never Stop…Never Quit.  When I lost my vision for a while in one eye, I put on an eye patch, went to the VA for treatment and kept on training.  Never Stop…Never Quit.  Early last year, my arm lost more strength and I could no longer hold on to the bike handle bars.  So there I was, a 37-year old man learning how to ride a bicycle with my new recumbent!  Never Stop…Never Quit.

             

The ride gives me a reason to reach out to friends of long ago.  I talk with COL(R) John Brier, who graduated with the West Point Class of June, 1943 (50 years before I graduated).  Every year, he sends me a very shaky handwritten note with a clear message to be strong! 

 

The special bond felt riding with supporters, friends and our MS family is amazing.  Our team, Team Amulet, spends all year planning, preparing, fundraising and training.  When the ride comes, we celebrate with other teams and ouir supporters.  I share my MS story, but more valuable are the MS stories that I hear from all of my other friends with MS.  We talk about the challenges we face, treatments to help, and ways to cope.  Most important, we talk about all of the efforts we have to get closer to the hour when no one will have to hear the words, "You have MS."

 

Then there is the ride!  10, 30 , 75 or 150 miles.  Anything that we can do is what the goal is.  I always want to do it all, but some years my body just will not let me. 

 

That’s OK, because there is always next year.  Never Stop…Never Quit!

Living with Injections

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. 

 

Whatever….

 

Yesterday (14 April 2010) marked my 541^st Avonex injection, dating back to 2 December 1999.  It was a quiet celebration at my bedside with very little fanfare.  Afterward, I spent a little bit of time thinking about my intimate relationship with that 23 gauge, 1.25 inch needle….

 

Not Exactly Sure

I remember first reading the Avonex medication guide way back.  My favorite FAQ was “Q: How does Avonex work? A: No one is exactly sure how Avonex works but it has statistically shown to……”.

 

No one is exactly sure? 

Great

 

Injection Story

Everyone who takes a regular injection has their favorite Injection Story.  Here’s mine:

When I was first diagnosed, I was an Aviation Captain commanding an Air Cav Troop in Korea.  The first few weeks were a whirlwind of tests and ‘trying to figure out my fate.’  I was allowed to remain in-country and be treated there for the time.  So, the US Army ordered my medicine (Avonex).  When it arrived at the Yongsan Army Garrison hospital in Seoul, I took a 3-hour drive from base camp.  There, the medical team gave me a 6-month supply of Avonex and a videotape on how to inject myself.  When I got back to my camp I watched the tape, mixed my medication, and prepared the injection site.  Hooah!  I then prepared to execute a clear & crisp “stabbing motion” with the needle into my thigh.  I sat there holding the needle in my hand for the next 3 or 4 hours.  “Do I really want to stick that thing into my leg?” was the only thought I could muster for hours…

 

Method

I eventually did that first injection.  It hurt – I would love to meet whoever said that a quick stabbing motion is an ideal way to inject yourself.  We would definitely have words.  I’m a lot better at the injections now.  Last night, it was easy-squeezey!  Here’s my trick:

First, the preparation.  No mixing the pellet and water anymore – that’s good.  I gotta let it warm up a bit, so  I take my medicine out of the fridge and let it sit for a while.  Else, I will warm it up in my hands.  If I don’t do that I have cold medicine going into my muscle.  Brrrr!

 

Next, take Advil.  At least 10 minutes before, but I try for a ½ hour.  That will help my body.

 

Now comes the shot.  The guide says you can do it into the top of the legs or the back of the arms.  I have only done the leg muscles.  The other is hard for self-injection.  I normally sit on the end of the bed when I inject.  I get my shot put together, swab my leg and start.  First, I tense my leg muscle up as much as I can and hold it.  Only for a few seconds but enough for my leg to feel the strain.  Then I relax…relax my leg as much as I can and put the tip of the needle against my skin.  Slowly, I press the needle into my leg: straight and gentle.  Sometimes it fights breaking the surface.  Sometimes it hurts a bit while it fights breaking that skin.  I just keep a slow, steady pressure.  Last night was easy and straight in all the way in.  When I inject all the medicine, I unpack the bandage, remove the needle and cover it.  Done!

 

Final step: go to bed!  My body hasn’t fought issues that much for a while but I still just go to bed. 

Done.….  All good

 

Day of Week

That’s tricky.  I try to figure out the best day; when I am most likely home relaxing.  In my Army days, the best chance of that was Saturday night.  Now that I am living the laid back, fat-and-happy retired life (right!) I have switched to Wednesday night.  It’s my routine now.  My cell phone sends me a reminder at 7:30PM each evening.  I also have my beautiful wife to remind me.  There is no way that I can forget!...except when I forget!  Those weeks I have to stumble through the day after a Thursday AM injection.

 

Not everything is MS

My other favorite line is “Flu-like symptoms are manageable. For many people, these symptoms will likely go away over time. So as you stay on AVONEX, these symptoms may lessen, leaving you feeling better”.

 

That wasn’t true for me.  My ‘flu-like symptoms’ occurred every few weeks.  They were the worst nights of my life (drenched with fever, terrible shaking chills) that rolled into painful, bruised days.  I dreaded the next shot but chalked it up to ‘flu-like symptoms’ because of my MS medication. 

 

Stupid MS.

 

In June of 2007, Brie and I moved to Portland to start brand new jobs.  20 June was that infamous injection.  25 June, I started my new job.  28 June, I was in the VA emergency room.  The ‘flu-like symptoms’ and pain in my leg since the 20^th was too much to bear.  The next day they checked me in.  Was it my medication?  Did I have a piece of needle in my leg?  They weren’t sure.  Four days later, the surgeons opened up my leg and drained a massive infection.  After, my doctor’s words to me were that I was ‘a day or two from leaving the hospital without my leg…if I left at all’.

 

So what was causing my ‘flu-like symptoms’?  A splinter.  A splinter in my leg since I was a child.  My injection used to irritate the splinter deep in my leg.  My ‘flu-like symptoms’ were me fighting an infection caused by a childhood splinter.  After my 20 June injection, I lost the fight.

 

Regardless of this being just a splinter, Stupid MS.

So here I am.  541 Injections down.  Is it working?  I’m not exactly sure but statistically speaking I am better off…