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?”
“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.
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.
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…®
Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.