Please forgive me for my bit of a rant.
Is this a fight I have any chance of winning?
For the last six months, I have struggled with that
question, praying for the best, expecting the worst, all the time wondering if
I would ever find an answer. Worse yet
was my persistent fear of the obvious answer I may end up facing: no, you do not
have a chance. I looked for signs, for
clues as to what lay ahead.
CHAPTER 9 EMERGENCY PROCEDURES
“So, how are you doing these days, Kevin?”
“I’m struggling.”
“Are you holding altitude?”
It was a fair question; his carefully worded attempt to
connect with me at this critical time. He knew my background. The question was
carefully phrased in such a way as to capture my full attention, so I worked to
form my answer within that same context.
Am I holding altitude? Shit, I had no idea if I was
maintaining anything, be it altitude, airspeed, or what direction I was even facing.
Any cues I may have relied on in the past now seemed to be of little value to
me.
“I don’t even know what my attitude
is these days.”
Even through the anguish of my reply, the irony of my words made
me chuckle a bit. My attitude, in every
sense of the word, was in danger, well beyond mere terminology of pitch, roll,
and yaw. At the end of last year, my
health was continuing to fail. The
pitch, roll, yaw of my healthcare progress, this slow decent of Secondary
Progressive MS (SPMS), was taking its toll on me.
In this conversation, much like many others, I relied on familiar
aviation terms, which helped me so much in the past, to plan on my future. One day, I found myself thumbing through old
Apache technical manuals. My search for the
best emergency procedure was where I found guidance.
LAND AS SOON AS
PRACTICABLE: defined as landing at a suitable landing area. (The primary
consideration is the urgency of the emergency.)
Get on the ground, then figure out what you need. Blindly maintaining my current course was of
no value to any effort, so I planned to land.
Practicable was January 1st. I would pause then, to evaluate the urgency of
my needs. A pre-planned short term
disability combined with a revised treatment plan was a nice target to have for
the new year.
How long would I need? I had no idea. With 6 months of short
term disability available, I was at least comforted by that stability for the
moment. The prospect of needing six
months, with the possibility of still finding no clearer path ahead, frightened
me. I tried to shield myself from
worrisome ‘what-if’ scenarios, instead focusing my efforts on preparations for
my time away.
As the new year approached, my checklist was nearing
completion. Work requirements were
mostly reassigned, physical therapy appointments scheduled, and my new
medication regimen was already in place. After two and a half years
off-treatment, while I was on a drug clinical trial for SPMS, I was happy to
resume attempts to stave off further decline. Sometime in the middle of ‘17 the
last patient enrolled in the trial will complete their course, then the results
will be unblinded and analyzed. I pray this trial shows some promise, for there
is nothing available right now. I hope to God that I was part of the untreated
control group, on a placebo throughout the trial, or this course has no promise
to offer.
LAND AS SOON AS
POSSIBLE: defined as landing at the nearest suitable landing area (e.g., open
field) without delay. (The primary consideration is to ensure the survival of
occupants.)
The only true hurdle left was the holiday season. Christmas,
my birthday, New Year’s Day. When I
first made plans for this time off, the thought of spending the holidays out on
disability was a bit too much to handle. This schedule would be easier; get
through the holidays and then focus on ‘what’s next’.
Starting a couple of weeks before Christmas, my energy level
dropped. Weakness, irritation, hot
flashes, and cramping were all known, common side effects as my body adjusted
to my new medication. Known side effects, especially short term symptoms, are
common issues faced by anyone undergoing treatment for chronic illness. It’s an easy tradeoff for most of us: some short
term issues, regardless of the severity, are as far less scary than the unknown
future unfolding before us every day.
December 28th
After muddling through my growing struggles for a few days,
I lay in bed that Monday morning, my left side nearly completely shut down. I never before experienced panic on such a
scale, as a volley of thoughts and questions ran through my mind:
·
I asked myself over and over, “Will I recover
from this or is this my new life, laying here in this bed?”
·
I closed my eyes, imagining what my life will be
like if I remained bedridden from this day on.
·
“Happy Birthday, KB!”
Using every bit of strength I could muster, I pulled myself
from the bed as Brie was on the phone, navigating my healthcare provider
options. MS lesson #4,872: don’t have
issues between Christmas and New Year’s Day.
Based on availability, the ER was our directed option. After sending a
quick note off to my workmates, declaring this day as my disability start date,
Brie and I headed off for yet another fun date night at the VA hospital! Happy Birthday, indeed.
The ER was packed; an unusual flurry, even for the standard
expectations of this holiday week. At the registration desk, the nurse informed
Brie we may be waiting for several hours.
That was her cue to get ready for a long night. She helped me settle in a chair, give me a
kiss, and headed off to park the car.
Not more than two minutes passed from the time Brie stepped
out of the ER to when the nurse called me back. My condition, medications, and
history raised enough flags. The need to
triage me, send bloodwork off to the labs, and get IV fluids in my body
outweighed the requirement to wait for a room.
I spent the next four hours laying on a gurney in the middle of the
hall, just off the nurse’s station in the emergency room. Unable to move my arm, or even curl my
fingers into a fist, I just sat there and watched my caretakers bustle from
room-to-room and patient-to-patient as ‘Is this my new life?’ echoed in my mind over and over.
“Stop taking your MS medication. Go home.
If you don’t show any signs of improvement in a few days, come back. Follow up with your neurologist.”
If the doctors don’t know what’s wrong, there isn’t much
they can do. My symptoms didn’t give the
appearance of a new exacerbation.
Extreme treatments may not help, and may even cause further damage (I
can only endure so many doses of steroids). If the reaction was indeed my
medication, and that was the unanimous guess, the immediate recommendation had
to be ‘Stop doing that’.
Sometimes there isn’t much to offer. If it was permitted,
I’m sure the doctor would’ve left one final note in my discharge record: Go
home, rest, and pray.
That’s exactly what I did.
Reduce, Reuse,
Recycle
From the moment I woke up on December 29th, Day 1, I was
strangely aware of my surroundings. I noticed myself lying in the same
position, flat on my back with my arms and legs extended straight down, the
exact position I fell asleep in almost 10 hours prior. I paused for a moment,
wondering if this was going to work. In one fluid motion, I swung my legs over
the bed and stood up. Rubbing my eyes as I turned around, I looked down at the
bed and mumbled under my breath, "Well, shit, I guess the doctor was
right". Overnight, my body recovered. Later on, my docs would explain
their theories. Severe immediate
gastrointestinal intolerance to the medication that significantly inflamed all
of my current symptoms. Once we stopped medications, the side effects subsided
immediately. I recovered overnight, though
my body was showing more wear than normal.
Fall back ten steps then struggle to recover nine, maybe less than
that. How long can I do this?
Day 1 was here. Regardless of how it happened, I was now on
the ground. My revised treatment plan needed revision, in every way. I now had
time to focus on it.
For a few days, the looming question “Is this a fight I have
any chance of winning?“ subsided. My
focus turned to the very few pieces of my life I wouldn’t place on hold: my
family and my health. Feeling as if I
was reintroducing myself to Brie and Ellie, I realized just how much my fears
and worries had consumed me. Cooking
meals, grocery shopping, drop-offs, and date nights was more important than
just about anything else. For the rest
of my life, my goal will be to remember those wonderful days and the message
they held; my family should always remain more important than anything else.
My health was going to be a more arduous task. Once again, MS medication proved
unsuccessful. I have been on six
different FDA-approved medications for treating relapsing-remitting MS (RRMS). Five have sent me to the emergency room, for
a variety of side-effects and intolerances.
All too often, I have had to sit through puzzled explanations of “we’ve
never seen that before”. It’s an awful
conversation for caregivers to have to give; I can see the anguish on their
face when there is no answer or explanation they can offer. Personally, I’m tired of being a medical
anomaly.
The next step? I went back to an older medication, the one I
was on prior to my SPMS clinical trial, the only option my body hasn’t rejected.
Though I am no longer classified as RRMS, this medication remains crucial to my
healthcare as a focus to prevent further relapses while I struggle with the
debilitation I already have.
Phoenix
I was reborn in March, just 10 weeks into my short term
disability. My body and mind were
refreshed. My new medication regimen
seemed stable. With my new leg brace,
midday walks increased to 3 and 4 miles!
This was a fight I started to show signs of overcoming (again). Back at work, with a refreshed sense of hope
and enthusiasm, I sat down to pen the first story of our 2016 Bike MS campaign:
Phoenix rising from the ashes!
Then came April…
April 15: my follow up evaluation for my new
brace. The concept of the brace is to deliver
programmed, low-level electrical stimulation to activate nerves and muscles
that lift the foot, giving me added mobility.
The practical result was indeed welcomed added mobility! The unfortunate side effect was 3rd
degree burns on my calf from excess electrical stimulation. Yet again, the term “we’ve never seen that
before” came up. No, I’m not used to it
yet. Yes, I still hate hearing it.
I struggle to find a way to make this brace work for
me. The benefit is so significant I
actually wonder if taking the days or weeks off if need, to let the bruises and
burns heal, is sustainable in the long term
April 24: I have been tracking
my MS in detail for a little more than three years now. My progression is definitely not linear; daily
changes are often subtle. How I feel
every day, how I grade myself, will jump when I realize the subtle differences
are now significant. In the past, those
‘resets’ were months apart, usually coinciding with a change in seasons or some
other noticeable shift. No longer even
weeks apart, changes in my progressions are noticeable now day over day.
There comes a time in every battle where dramatic shifts in
life change the outlook: the last day I xxxx, the day I needed xxxx. On the 24th, my average rating
stuck to new lows below 60%. I asked
myself, “Is this the breaking point?” Little,
subtle issues no longer seemed so subtle.
By the end of the month, I had grown tired of all the
setbacks. I was frustrated with the prejudices
and m limitations set on me by others, but worse so by myself. The looming
cloud of ‘everything’ was overwhelming. As
I wrote, then rewrote, this story I began to wonder. Am I telling the story of my triumph over
MS? Am I chronicling my overwhelming
disabilities. Am I just documenting my
decent into madness as I battle physical ailments, emotional stresses, and
imaginary demons?
How long can I do this?
How long do I want to do this?
I truly don’t know the answers to these questions, though I
search for signs all the time. A friend
of mine interrupted one such session the other day.
“What’s that?” <pointing to the tattoo on my arm>
“It’s
my family shield. Byrne.” I traced my finger along the outline. “The three hands stand for sincerity, loyalty,
and justice surrounding a chevron, the strength of the shield.”
“What does that say below?”
Just then, it hit me.
I’ve carried the answer all my life; the words are etched into my skin.
“That’s
my family motto.”
Certavi et vici
I have fought and
conquered
It’ll never be true if I don’t fight.
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 fight!
Never
Stop… Never Quit…
Kevin Byrne
Portland, OR
Never Stop... Never
Quit... Reg. U.S. Pat. & Tm. Off.
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