Hey, Brie...

That’s my filler phrase at home.  It is the way I start a lot of conversations at home, hoping to grab my wife’s attention for my question, idea, thought, or conversation starter.  I think that she is starting to cringe every time she hears “Hey, Brie” because she knows what is coming next.  Something to do with MS.

      Hey, Brie…

•         Do you think I need to call my doctor about (fill in the MS Ailment)?       
•         I have another appointment tomorrow for (fill in the MS ailment)…       
•         My tests came back.
•         I need more tests.
•         I’m starting my new drugs tomorrow.
•         Today is a bad day.
•         Today was a good day.

Sometimes it gets to the point that every conversation is about MS.  Ailments, treatments, appointments,… it never ends.  When we go out a lot, we’re with other MS friends or at an MS-related event or we’re just with friends who want (or get) an update on my MS.

There comes that point in my life, usually once every year or two, where I realize that EVERYTHING is about MS!  It’s a shame because I love a lot of the things that we do because of MS:

       ·         The camaraderie and friendship from our MS support networks.

       ·         The accomplishment and excitement of our MS fundraising efforts (GO TEAM AMULET!)

       ·         The excitement I feel when I am part of an effort that will end this disease forever.

It’s a shame because I love all the aspects of MS support but I absolutely hate MS.  Brie gets all the issues we live through, plus she gets my thoughts about everything.  Still she supports me and the whole MS community (on the board of the NMSS Oregon Chapter and leading our BikeMS team every year).

I think that she’s getting gun-shy whenever I say “Hey, Brie…”.  She unfortunately knows where the conversation is headed.

Not this time.  As we putter through our daily routine and clean up from dinner, I come up behind my wife.  “Hey, Brie” I say as a wrap my arms around her waist.  “I Love You”

For a moment, MS takes a backseat to life….

For just a moment.

“Hey, Brie – I just wrote another story for the MS blog site.  Can you proofread it?”

Kevin Byrne - Portland, OR

www.brieandkevin.com

MS and the Hover Button

October 1993.  Class 94-01 was ready to take to the skies.  2LTs and WO1s, all fresh from their basic courses, were ready for Initial Entry Rotary Wing Training at Fort Rucker, AL.  Flight School.  The first day that you fly is your ‘Nickel Ride’; an folklore about the crusty flight school instructors who always said “If I had a nickel for every new student I taught…..”  During my time in flight school, most of the helicopter instructors were DACs (Department of the Army Civilians), retired Vietnam-era pilots.  Walking the flight line in the morning, you were treated to tall tales about the specific Hueys you were passing.  Rescue missions, firefights, midnight nap-of-the-earth runs, shoot downs and crashes.  Every tail number had a story to be told; the patched-up bullet holes across the fuselage lent credence to seemingly tall tales told by these men. 

Jimmy Weeks was my first instructor.  He was 59 when I went through flight school, but I would have guessed he was a lot older than that.  Not the healthiest of individuals, Jimmy would have to stop once or twice on the way to the aircraft to catch his breath.  Originally from Silsbee, Texas, Jimmy was a good ol’ boy who ate two bags of Red Man chew during a flight.  That wasn’t a mistype, yes he ATE it.  No spitting— just chew and swallow.  He hacked and wheezed as he talked us through our preflight checks, and took quite a bit of time to climb into the left seat of the Huey every morning.  My stick buddy (two students rotated time at the controls every day) and I used to joke about which of us was going to give Jimmy CPR that day.  We answered that with “Rock-Paper-Scissors” as part of our preflight ritual.  After two weeks of ground instruction I wondered how in the heck he ever got to fly, let alone become an instructor for Army Aviation.

The Hover Button

After preflight we started the engine and Jimmy lifted that 30-year old bird one foot off the pad and held it there.  You would have thought we were still resting firmly on the ground and not hanging in midair with two rotor blades spinning, beating the air into submission.  “The hover,” Jimmy squealed in his distinct southern

accent, “is the most important maneuver you’ll ever learn.  If you can do that, you can do anything.”  Right then, I learned that Jimmy Weeks was more at home in the seat of a Huey than anywhere else.  I found out later that Jimmy was a retired LTC who commanded B Troop, 1/9th Cavalry Regiment, 1st Air Cavalry Division in Vietnam in ’67-68. 

What that man repeatedly did is now part of 1/9 Cav lore.  And it all started with the hover.  Jimmy continued, “this is the hardest thing you will ever have to do in an aircraft.  10,000 totally unrelated moving parts, constantly working against each other, and it’s up to you to make them purr.  Find it.  Once you find the hover button, you will never forget where it is.”

The hover button is that magical place where everything becomes manageable.  After Jimmy’s demonstration of perfect harmony we went out to the training area.  For the next two hours, he scared me in ways I never thought possible.  He’d start us out flying straight and level.  The instant I took the controls, that helicopter was all over the sky.  Just before I put us into an ‘unrecoverable’ position Jimmy would take over: “I have the controls.”  Then, just as quickly as I lost control, he found that hover button and we sat idle in mid-air.  We were hanging in a training field perfectly still, only the gentle rhythm of the blades.  Perfectly still…except 50’ above the ground.  “All right, LT.  You ready?  Let’s see if you can find the hover button.”

As if I was issuing my own death sentence I uttered “I have the controls.”  For the next 20 seconds, I rode that beast.  Up, down, backwards, sideways.  I did everything BUT hover..  Jimmy just sat in the left seat and loudly let out his signature “Yee Haah!” over and over…. until we were again nearing that ‘unrecoverable’ point. “I have the controls” was all he had to say.  As if that Huey heard his command, she stopped again in midair.

“You’ll find it, LT.  We’ll just keep coming out until you do.”

Eventually I found my hover button. 

Once I found it, everything else was second nature.  You know the statement “it’s like riding a bike”?  Well, riding a bike has nothing on a hover button!  Once you find it, everything becomes easy; or maybe I should say easier.  Or should I say that now I was able to focus on the really tough stuff.  I transitioned from the UH-1 Huey to the OH-58 Kiowa, then finally to the AH-64 Apache.  Flying, shooting and leading air missions was the really tough stuff, knowing that you had found the hover button was a constant reminder that anything was possible.

It’s a great lesson in life: everything has a hover button.  The point at which the insanely difficult becomes mundane and easy, allowing you to focus on the really tough stuff.  It’s a great reminder in life.  I’ve used the reference many times; it was just as applicable holding an aircraft in midair as it was potty training my three-year old daughter earlier this year.  She found her hover button and no more diapers! 

In 1999, I crawled into the cockpit of an Apache at Camp Eagle, Korea.  New to the unit, I was flying with an instructor pilot.  CW3 Jamie Henry transferred the controls and I taxied out to take off.  Smoothly hanging the aircraft a foot off the ground, I calmly said “I wasn’t sure how easy this was going to be.”  That startled Jamie a bit since he forgot that I was getting back into the air after being grounded for 2 1/2 years.  A car accident with a nasty head injury kept me out of helicopters for a while.  The hover button let me focus on the tough stuff: nighttime flying in a foreign country.  That was fun.

One theory of MS is that we are pre-disposed to the condition.  Genetic factors, supposedly.  Certain physical traumas can trigger your first exacerbation.  Any doctor who reviews my medical records would say that the car accident triggered my MS.  Maybe.  Three months after that flight was my first attack that prompted my diagnosis.  As quickly as my aviation career resumed it came to a permanent halt.

Now I have a problem.  MS has no hover button.  The difficult foundation, the most basic challenge by which everything else is built on, changes just as I think I am getting the hang of it.  It seems that basic everyday function is too often the really tough stuff.  I deal with walking, speech, swallowing and vision instead of focusing on my family, friends, life and career.  The easy stuff is not supposed to be hard.

I was home the other week cleaning up toddler toys.  Struggling to lift my arms up and place toys on the shelf, all I could hear was Jimmy.  That distinct “Yee Haah!”—as I wrestled little plastic cars and farm animals—was as loud as on my Nickel Ride almost 20 years ago.  I smiled.  Jimmy didn’t take the controls from me; I only assume he didn’t think I had reached ‘unrecoverable’.

MS has no hover button, or maybe it does.  There must be something out there to make the easy stuff…well, easy, letting me focus on what’s difficult.  I just need to find it.  I will!

Jimmy Weeks passed away in 2008.  An aviation legend who continues teaching me lessons to this day.  .  On those tough days when I struggle to get past the basic, Jimmy still reassures me.

“You’ll find it, LT.  We’ll just keep coming out until you do.”

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we ride…write…fight!

Never Stop… Never Quit…^®

Kevin Byrne

Portland, OR

neverstopneverquit.com
neverstopneverquit.blogspot.com

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

What Else Can I Do?

What Else Can I Do?

Since last year’s battles with multiple sclerosis, I’ve found that I have a hard time with many common activities: just the other day I couldn’t outrun Eleanor while playing tag in the backyard.  She’s adorable, but it’s still disheartening when my three–year-old daughter is faster than me.

That’s just one of the activities that I can’t do these days.  I won’t bore you with the entire list but it includes many things that I used to find great joy in:  running, hiking, swimming, sometimes even just walking a block can feel as strenuous as my toughest Army days. 

MS is relentless.  I never get a break from its effects.  Whenever I feel like I have overcome one challenge, it comes back with much more vigor.  As soon as I grow used to one difficulty, another will soon pile on, making it all rather overwhelming.  Frustrating hardly begins to explain my feelings.  To not be able to do what was once as routine as taking a breath…that’s a difficult change to accept.

My options are pretty limited these days.  In fact, there are only two available to me when simple tasks become insurmountable:

I do them anyway.  My Father’s Day from Brie was to go hiking.  The Angel’s Rest hike in the Columbia Gorge is 4.8 miles round trip with an elevation gain of about 1,450 feet.  I easily conquered this hike many times in the past.  The last time Brie and I hiked Angel’s Rest, I carried our daughter in a pack on my back.  This time, I made it about a third of the way before my leg just couldn’t do any more.  I pushed as hard as I could before it was no longer safe.  We drove back to Portland without saying much.  I felt proud of what I did and also frustrated over what I couldn't do.  Before I toss my hiking boots and trekking poles I will look over the ridge of Angel’s Rest again.  I have no other choice.

I do what I can.  Besides running, hiking and swimming, I used to bike a lot.  Then came the time when I could no longer hold on to the handlebars safely.  So I traded in my road bike for a recumbent.  Then I couldn’t keep my balance on two wheels.  So I traded in again, this time for a recumbent trike.  Last year I rode the 202-mile Seattle to Portland ride as well as 88 miles of the National MS Society’s BikeMS Oregon, climbing the 4,503’ of elevation gain through the Willamette Valley and Oregon Wine Country in triple-digit heat.  That was an amazing triumph over a tough round of MS issues and hospitalizations.  But, alas, that was short lived as I was soon to be back in the hospital just two months later.  That was November.  By the time March came around my MS had taken its toll again.  The thrill of those long bike rides just ten months ago is long gone. 

So I did what I could.  I changed my diet and daily lifestyle with a focus on my health and recovery.  Next, I got back into the gym to see what I could do.  I rode the stationary bike.  All I had in me was 10 minutes, going pretty slow, but that was a stake in the ground.  For the next few weeks I rode faster and at a harder resistance, back to the training rate that I was up to last year.  Now, I need to work on my time.  10 minutes became 15, then 20, then 30.  When I extended my time, it took a while to get back to last year’s training rate.  When I got there, I extended it again.  30 minutes became 45.  Last week I rode strong for an hour.  The week before that I took my recumbent bike out and rode 25 miles.  My goal is next month’s BikeMS Oregon.  I’m no way near where I was even last year, but I am doing what I can.

There is no other option.

So this year my goal is to ride, just ride.  I’m not sure how far or how fast, but I will ride. 

I’ll ride to increase awareness of my fight and everyone else’s who battles this disease.

                                                                                         

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we ride!

brieandkevin.com/bikems

Kevin Byrne - Portland, OR

www.brieandkevin.com

Good Days

October 1, 2012. 

That was the day my newest battle with MS began, with the thought that screams “I can’t explain it, but there is just a subtle hint that something’s just not quite right.”  After that there were constant strings of bad days, the only intermittent interruptions being BAD days.  I am now classified as a “difficult patient” by the VA, not for my charming personality but rather the clinical difficulty of my disease.  At that time, I could only focus on trying to get used to my new body and fearing just how bad it would get. 

Today is April 23, 2013.  204 days later and a thought dawned upon me: I have managed to string together a few good days.  The concept of a ‘good day’ is different than it was in the past.  When I am walking down the street and I notice that I am not limping or dragging my leg; when I can raise my glass and ‘cheers’ my daughter at the dinner table; when I can talk to someone for 10 minutes; when I can write and type these journals.  Those are good days.

What makes a good day?  More importantly what compensates for, eases or prevents a bad day?  If I knew that secret, my friends, I would be shouting it from the rooftops.  Maybe someday I will cipher my MS codebook.  That is exactly what I am trying to do.  My compulsive behavior may finally yield the rewards I long for, as I recently started keeping logs of everything.  I am trying to see if there is a pattern between eating, drinking, exercise, sleep, medications, and about 14 variables that I track daily.  I have only been doing this for two weeks but I see a few patterns developing.  I’m looking forward to sharing this with my neurologist next month.  There is no way that I can do this myself and I will need all the help the VA can muster.

So I track my good days, and I track my bad days, and I track everything in between.  I have been focusing on healthy habits (water in lieu of soda), healthy meals, holistic treatments (acupuncture and nutritional supplements), my prescribed medication regimen and exercise.  I’m a 41 year old man who just learned (for the 1,000^th time) that a healthy diet and lifestyle is good for my body.  The days of a large peperoni with extra cheese and a pint of Ben and Jerry’s are over.  Go figure!

I am seeing a reward so desperately needed after this tough winter.  These good days bring the biggest smile to my face as I walk along the street in warm sunlight!  It’s euphoric!  But, alas, it’s also a fleeting moment…  As quickly as those good days come, they disappear.  I can’t yet predict when my leg will buckle under me, or my arm will stop working, or when I can no longer talk, write or type.  So I track those times and I look to see how to put a string of good days together.

I am really starting to get excited about putting in workouts in the gym again!  I really hadn’t been there much (at all) for the last 6+ months.  It feels great to get back.  I realize just how much I’ve stepped away from my fitness, both from MS and lack of activity.  It’s tough but the tired and the pain actually feel good for me mentally!  I worked out 5 days last week.  Most of it is in the gym on the stationary bike, ending with a 1 hour ride at a pretty tough level on Saturday!  I have done Mon/Tue so far this week.  It feels good and I am looking forward to building on this big step.

I’ve got a long road to recovery ahead of me, and I may never quite get back to where I was, but the thrill of the fight is alive in my spirit again!

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

brieandkevin.com/bikems

Kevin Byrne - Portland, OR

www.brieandkevin.com

Sometimes

 “You OK there, Kevin?”

“Fine” is all I can muster between choking coughs.

Sometimes that’s the end of the conversation.  Those who know me will go back to their own business; the moment fades as quickly as it first erupted. 

Those who don’t know me as well may linger a bit longer, their focus remains on my persistent cough.  After a while everything is calm again.  Sometimes the topic is dropped, other times I have to explain myself a bit.  I prefer to not leave the thought in minds that I don’t know how to eat a sandwich, or that I take such obscene bites that I can’t even swallow my food.  Sometimes my mouth just ‘forgets’ how to swallow, at all or just completely.

Such is the world of MS……………..Sometimes.

The waxing and waning of my disease has become quite extreme over the past year.  Sometimes I can do things.  Sometimes I can’t.  Sometimes there is every iteration imaginable between the two.

After I was first diagnosed with MS I generally avoided sharing my disability with others.  Fear of unknown reactions, shame for feeling weak, and my stubborn refusal to give in were my reasons.  I thought that if I didn’t ‘look‘ disabled then I could avoid the reactions, shame, and stubbornness.  Sometimes there we issues, but not often.  I could handle the occasional issue.

That’s not the case anymore.  I always look disabled now; sometimes more than others. 

My willingness to share my disability with others is stronger today.  A few things have helped me grow in this openness.  I’d like to proudly say that I am no longer afraid of the reactions and shame.  That’s not completely true.  My greatest fault will always be my stubbornness.  As I learn to get over the fears of what others may think about my MS, I have a great catalyst….fears of what others may think if they don’t know it’s my MS.

·         I don’t take such obscene bites that I can’t even swallow my food; sometimes my MS acts up.

·         I’m not a clumsy oaf as a stumble, trip and drop my way through the day; sometimes I have worse days than others.

·         I’m not being inconsiderate if I can’t quickly get out of your way or I bump into you; sometimes…..

·         I’m not drunk when I sway, stagger and slur; sometimes…...

I’m more willing to talk about my MS when it helps me; I guess I’ve earned that.  I’m less resistant to accepting the help that I sometimes need; I am glad I’ve learned that one! 

Overall, I’m slower at some tasks these days.  Sometimes I can’t perform some of the simplest tasks without difficulty, if at all.  I need help more often than I care to admit.  This weekend I walked in the National MS Society’s WalkMS.  The 5km was interesting since my new legs haven’t handled that much yet.  I needed help sometimes; my cane was used for the first time.  It was easier with this group, since my fear of reactions and shame doesn’t exist.  Maybe my cane may be my way of sharing my disability with others.  My clumsiness, swaying or staggering may look less oaf-ish if I wield a cane!

I don’t want to change the way people see me.  I am still the same strong man as before.  I just need a little help and understanding because sometimes I can’t do the things I used to do.

But, quite honestly, I am happy and grateful because sometimes I still can!

Kevin Byrne

Portland, OR

Reality

Usually I deal with my MS every day in much the same way as I have for the last 14 years.  Resilience, determination, challenges, strength.  Those are the words that usually describe my fight.  I understand the reality of MS, but I often don’t feel that those difficult realities apply to me.  Or at least not for long as I usually quickly overcome them.  When I send out my annual fundraising letter for MS, my focus has usually been support for others.

It has been 14 years now since I first heard those words "You have MS". Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back, though!  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!

Now, Brie and I are focused on giving back and fighting for those who have helped so many. 

That sounds nice.  A nice story of strength and determination, overcoming the odds and rising to pay it forward.

That sounds nice but it’s not real anymore.  My MS is now pulling me back into reality, and today I see more reality than I have ever confronted before.

I am faced with some simple facts.

I am disabled and that disability is worsening.  In the past, I would usually get by without “looking disabled”, for whatever that is worth.  That’s not the case today.  The peaks and valleys are extreme.  On good days I can walk and talk with relative normalcy.  On bad days I can’t.  Brushing my teeth or getting out of a bath tub can become impossible tasks.  My slurring can be so bad I sound drunk at 10 in the morning.  My legs or arms will just stop working.  Those peaks and valleys can hit 5, 10, 15 times in a single day!  It can be exhausting to manage my limitations through prediction, preparing my surroundings and explaining to others those awkward moments. 

My medical treatment options have been nearly exhausted.  My body has rejected most active treatments to treat my MS and limit its progression.  I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis.  Steroids no longer recover the increasing incremental damage done to my body.

This isn’t going away anytime soon, if ever.  It’s early April.  Normally I am starting my training cycle for the annual National MS Society BikeMS.  My focus is normally “how far can I push my body this year?”  This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up.  I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.

I am faced with simple facts.  What comes next is neither easy nor clear.  How I move on from here will define everything that I am.

My life has been numb for the past several months, waiting for the resolution of “What’s Next?”

The reality is that this IS what’s next.  My next challenge to display resilience, determination, and strength.  My fight is still the same; my message just needs to face reality.

A World Free of MS  is still the vision but we’re nowhere close. 

New cases of multiple sclerosis that are diagnosed daily remind us that we don’t yet have a cure.

The worsening of my own disability reminds me that challenges for those affected by MS are still there.

Not yet, but we will get there.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

I wonder how far can I push my body this year.

Kevin Byrne - Portland, OR

www.brieandkevin.com

Welcome back, my friend!

I can’t explain it, but there was just a subtle hint that something’s just not quite right.  That’s the way my MS fights.  The issues first appear as some annoyance that you shrug off as being tired, not paying attention to stuff, or maybe having one too many the night before.  Those new issues are just accepted; not even focused on or thought about.  Hell, if I focused or got worried every time I had an “issue” I wouldn’t get out of bed in the morning!  With MS, issues are normal; sometimes it is difficult to realize that some of those issues are new.  MS is sneaky and its resurgence can be slow.

For me, it took over a month this time.  I had recently finished BikeMS.  That pushed my body and my mind hard.  It was a great event that I prepared for months before, and expected a bit of recovery on the back end.  So numbness and tingling are just part of the package for me.  It has been that way since 1999, so just a little bit more is no big deal.

*** Monday

There’s that point in every MS episode when the reality of what is happening settles in.  5 weeks later was that point for me.  While preparing for my regular 3-month appointment last week, I reviewed with Brie.

“I need to talk to Mary (my NP) about this new numbness in my hand”

“Be sure to tell her about your slurring”

“I’m slurring again?”

“Yes”

Crap.  All at once everything comes together in that moment of clarity where all my issues become a pattern.  I realize just how bad my “normal” has become again.

At that point, it’s as if my MS realizes the jig is up and subtly goes out the window.  Welcome back my old friend!  Now you are moving fast and I am scared.

When I was first diagnosed with my I didn’t fear MS attacks.  The fact that I didn’t know what MS was at the time sure helped me avoid any confrontation.  I got sick and I had issues; that’s enough explanation that an Air Cavalry commander needs to know before he focuses on the important issue: “Now what?”  “Now what?” was my priority and focus: treatment, recovery, moving forward.  My MS issues continued so my Army career was over.  That just extended the “now what?” for a while.  Moving forward, transitioning, and settling in to my new life. 

MS stopped my Army career and turned my world upside down.  But I didn’t “have MS.”  I didn’t deal with the relapsing-remitting issues that sick people had to deal with; in fact, I visited with a neurologist one time in the private sector who even suggested that I had a mono-symptomatic neurological disorder and not MS.  One big issue that I would deal with for the rest of my life, but that’s it.  I asked if I should stop taking these drugs that the VA had me on.  Quickly backtracking with a definitive “no”, he explained that there is no surety either way; so best to play it safe and take the medication as if I do have MS to treat.  OK.

When I had my first exacerbation I still didn’t fear MS attacks.  It was easy since I didn’t know I had an MS attack.  My eyes were getting bad and I needed glasses (or so I thought).  The funny part about that one was that when my eyes improved in a few months I thought they were getting worse because the glasses weren’t working anymore.  I just stopped wearing them after a while and dealt with my new normal.

In 2005 I called my then-girlfriend, Brie, up and told her that I was going to the VA hospital.  I couldn’t see from one eye.  After a long day of tests, my neurologist and ophthalmologist broke the 6-year old news that everyone already knew: I had MS.  “So that’s what an exacerbation is?” was my reaction.  They still didn’t scare me, but know I formally met an MS attack.

The fun part about my MS is that the exacerbations are usually quiet and subtle.  It’s everything else that takes center stage: balance, falling, broken bones, muscle infections, surgeries, anaphylactic shock are just some of the great times from dealing with what my MS has already done to me, and my attempts to treat it.

Three years ago, I first learned to fear the relapse.  My eyes again.  Subtle changes from that new normal slowly crept in until I made the connection.  I didn’t like that one bit.  Again, my friends at the VA took great care of me and I recovered most of my vision.  This time, though, the damage was done mentally.  I was afraid of the next exacerbation:  when would it come and how bad would it affect my eyes this time?

Since then, progression of my MS has gone into hibernation.  MS waited until I let my guard down a bit.  After a year of MS-related illnesses, surgeries and other ailments I grew weary of looking for more issues.  Besides, my eyes are great.  It was that slow, sneaky progression that I didn’t see coming. 

You know, my boasting of being an old Air Cav guy loses its value when

I keep missing the enemy staring me in the face!

This time it’s not my eyes, but instead my issues are my arm, my slurring, my drooling and my bladder.  For the first time in our 13-year dance I am afraid of what is going on right now and how bad this is going to get.  This is going to be a fun week…

It’s 3AM.  I have an MRI tonight at 7PM.  This could be the longest day of my life.

Welcome back, my friend!

*** Tuesday

Today may have indeed proven to be the longest day.  A full day at work that seemed to drag out like day after day after another long day.  Running to the bathroom to empty an emptied bladder didn’t help my stress.  Everything stings, hurts, or has to pee.  My saving grace was being able to spend a little time with Brie and Eleanor before heading off to my MRI!

MS even managed to ruin Spa Day.  MRIs are a lot less relaxing with the stress of ongoing MS issues and the mind that likes to role play every bad outcome.  On top of that, I missed out on the VA MRI.  Due to the expedited need, I was sent to the medical school, OHSU, next door.  Alas, the rhythmic chiming of the machine eventually worked its magic and soothed my mind and body.

In the effort to maintain a sense of normalcy I will go to bed, wake up after a (hopefully) full night’s sleep, bring my daughter to daycare, go to work, and do it all again.  At some point I hope to hear the news of what’s next.  Until then, I will live my life like I always do.  Why?  Because I can and because I need to.

Not today, my friend!

*** Wednesday

The wait can be the worst past.  I know there is a problem; Mary knows there is a problem.  Until we know what the problem is, throwing drugs at it is like blowing out a candle with a fire hose.  I understand the damage treatments can do to my body, and the need to limit them, but I’m sure that everyone fighting MS has made the statement “just give me something to make this stop!” at least once…

I slept for 9 hours and woke up exhausted.  My left hand and arm hurts (just like the right one always does); my throat and face hurt; I’m slurring, drooling and running to the bathroom hourly with an out-of-nowhere need to pee, though little is there.  What can I do right now?  Just hold it together and try to focus on what matters: my family and my life.  I try to maintain a sense of normalcy, keeping my issues quiet and trying to go about my regular day without impact or “reactions of pity”.  Without knowing the background story, three coworkers yesterday told me (in a professional way) that I looked like hell today.  Great. 

One of my biggest fears about MS is how it will affect my career and my ability to provide for my family.  I’m a proud man; some may say cocky, arrogant, and aggressive.  I don’t mind those classifications.  The Army (West Point, Attack Aviation, Air Cavalry) took me in, groomed my natural need to succeed, and fostered that into the personal motivation that still drives me today.  It’s hard to be a successful professional, manage a team, and advance your career if you come to the office with a litany of physical issues and grow and change constantly.  I understand and am familiar with ADA (Americans with Disabilities Act) but I also understand subtle impressions and stereotypes.  I hate the fact that the impression of ability can be impacted by disabilities.  I hate it but I understand it; I am guilty of it myself as times.  Maybe I am wrong and maybe I am naïve but my fear of its unknown reaction leads me to keeping my issues quiet as much as I can.  I just quietly wait for my test results.  Masking my issues and worries from most, my fears continue to simmer.

Show yourself, my friend!

***

Some initial reports back.  I do have a bladder infection (yeah!); my MRI shows activity but the full comparison to my November scan is not complete.  The specific infection is still pending some culture tests later today.

Wow!  Relieved to have a bladder infection!   I guess that an infection and not further MS damage is better of the two crappy options.  Another side effect of my medication.

I’m fighting back, my friend!

*** Thursday

Some progress, albeit not much.  I do have a bladder infection, and they have started me on Amoxicillin.  What is causing the infection is not known yet.  Is it just due to a weakened immune system from my MS medication?  Is it due to an exacerbation causing more harm?  We won’t know until I get the report from my MRI.   The ‘expedited today’ MRI reading isn’t here yet.  I could go on about efficiencies and the pain of waiting even an additional second, but tonight is my day to make dinner; Brie is picking up Eleanor and I don’t want to miss out on one bit!  Besides, I have started on more drugs.  Throw another prescription at the problem.  What else can I ask for (he says sarcastically)…

I have more important stuff to do right now, my friend!

*** Friday

I put my MS aside last night.  Everyone fighting this disease, everyone fighting any debilitation, needs those days when they put their woes aside; even if it is only for a moment.  It is the glue needed to hold my emotions and my mental clarity together.  The simple life last night was exactly what I needed.  Grilling burgers on the back deck for dinner with Brie and Eleanor; sitting together as a family and enjoying dinner (as much as you can with a feisty 2½ year old); the Daddy duties of bathing that unwilling participant; finally, after Ellie’s bedtime, sitting alone with my wife.  Just decompressing from the day, enjoying some wine, talking about our day, watching a little TV, and spending time together.  No agenda, just together.  My MS fades for a while on nights like this.

I appreciate the respite from MS but I know it’s only temporary.  MS made a sharp visit and reminder at 3AM:  My arm.  Throbbing, aching, and fatigued.  It’s like I am trying to hold my arm over a campfire with a 50-pound weight hanging off of it.  The concept “pain is relative” is the most accurate statement I can make in this case.  My right arm has felt like this since 1999.  Most of the time I barely notice it anymore; I am used to it.  If I am asked the question “does it hurt?” my answer is typically no.  But if I stop and think about it, think about the pain in my arm, the pain is horrific.  The mind stops gauging the pain if there is no way to make it stop.  Anyone who understands physical therapy will tell you that the only reason to feel pain is to make you stop doing or heal whatever it is that’s damaging your body.  It you can’t fix it, no need to feel it.  My right arm figured that out years ago.  My left is just out of the starting gate.  He still is looking to heal.  I hope he does.

Hopefully some answers will come today.

Show yourself, my friend!

***

All my results are back.  Great news...and some of the worst news I could hope for.  This latest round is not something new.  My MRI lesions are completely stable: that’s awesome!  The bad part is that the infection is a normal reaction to my medicine.  It is apparently my new normal and probably will happen again.  The impact on my arm and face muscles are inflammations of prior lesions, harried by the infection.  That again is my new normal and probably will reoccur.  The answer for now is yet another prescription to pick up.  Great.

Just one more reason to fear my MS. 

You sneaky bastard!  What else could you possibly have in store for me, my friend?

Try all you might but you won’t win, my friend………

*** Sunday

So I finished 2 weeks living my greatest fears and challenges.  The result is both good and bad:  good for the immediate resolution but bad for the new normal in my future.  We’ll call this one a draw, my friend.  I went into the weekend with new challenges and new fears.  Instead of bowing to those fears these days were the best bits of life anyone could hope to experience, sick or healthy:

• Enjoying my family and future with little Eleanor, dancing together around the living room without a care in the world.
• Celebrating life with the marriage of wonderful friends.  Congratulations Joe and Chelsea!
•  Affirming my faith through church service; a day made better the opportunity to bring Monte! for the blessing of the animals in honor of St. Francis of Assisi.
• Cheering on my Yankees as this win Game #1 of the postseason.  You can take this boy from the Bronx, but you can take the Bronx from this boy!
• With every celebration, with every moment both public and intimate, is Brie.  My life…My Love…

I live by a new set of rules now.  I don’t know what the next round will bring.  If the future is anything like the first two and a half days of this new ‘normal’ have been, I already have what I need to fight.

I will always win…

Kevin Byrne

Portland, OR