Part 12: When
the(my) World Changed
I first started sharing my
words 11 years ago (April 15, 2010 – Injections). Every post has been a story
of who I was, who I am today, how I navigate my constantly evolving
environment, or what unique iteration of infinite possibilities will become my
future. I originally intended this blog series to be yet another short quip in
the ongoing tale of my life with multiple sclerosis. It quickly turned into the
most challenging writing of my life. I never addressed the question, “How will you
react now that your fears have arrived?”
Five months into writing this
post, my answer is the framework upon which I hope to reinforce my wellness as
I continued to react, as my fears continue to pour in.
***
Everyone has their story. More
than a year into our “new normal,” each of us can tell our own tale of how lives
changed. This is mine.
March 13, 2020, was my last
day in a time now referred to as “Back before…” and “Remember when…?” The virus
was here. In Portland, it was the last day of fitness centers, bars,
restaurants, etc. The events following that Friday until [whenever the hell
this ends] killed many lives and destroyed, stymied, damaged, and changed many
more.
My experience was different. I
had already become isolated, even more so than in the past, although I was
always wired that way. My immediate adjustments were limited to life in the gym,
the pub, or a restaurant. It took less than two months to become comfortable — in
that time, I rediscovered lost areas of focus while nurturing new priorities. I
thrived in my new environment, improving in ways I once thought unimaginable
and finally realizing what mattered in my life.
There was also a fourth focus: Eleanor. I will
save her story for a later time, but I had the privilege of watching a curious
little kid form the foundation of a budding young lady who will discover so
much on her own beautiful journey.
Strong. Healthy. Happy and
hopeful, as signs of life began to emerge after nearly a year into the
pandemic.
These were descriptions I
would apply to any characterization of myself. I decided to begin drafting the
story of my journey and discoveries over the last several years, Reconstructing
and Defining Kevin. Proud of overcoming without curing, I needed to share
the concept of wellness and its effect on my future.
That was everything before
January 26, around noon.
***
From this point forward, there
are two stories: mine and my brother’s. The details of Tommy’s are not for me to
share. They are for his family: his wife, his sons, our mother. I will only
review his terrible journey, from the day he first became ill until his death,
to talk about how our lives overlapped and his boundless impact on my thoughts,
decisions, and fears.
On January 26, I fell. My
now-annual “bad fall” was a doozy. While doing nothing foolish, in a safe and
calm environment, I fell. Landing hard on my right side sent shooting pains up
and down my arm. Everything moved, albeit with a lot of pain. I stayed at home
to nurse my ego. The pain and stiffness increased throughout the day and night,
leading to a trip to my primary doctor in the morning.
Assessment: nothing broken,
suspected soft tissue injury. Ice, rest, ibuprofen – physical therapy referral
and reassess in one week. The resulting pain and immobility drew fears of a
greater issue. I tried to come to grips with what a torn muscle or tendon would
do to my ability to function independently. Fuck!
On January 29, Tom suffered a
seizure while sleeping at home.
Assessment: unknown. Testing
and observation after admission to the hospital.
We didn’t know much beyond the
Fuck Factor with both issues. I was in torment, but countless issues after more
than 21 years had dulled my trigger for concern. Suck it up and deal with the
pain. I told myself, “This is just a temporary setback. You’ve done it before,
so do it again.” For over a month, that is where my mindset remained. Tom was
the bigger concern.
I stopped writing, focusing
instead on trying to interpret the avalanche of conflicting thoughts running
through my mind. The well-formed concepts of wellness began to crumble when I
sat down and scratched out this cryptic note on February 6, 2021:
I am in the thick of a unique challenge, faced
with the realistic possibility my wellness is nothing more than unjustified
boasting of a “solution” I claimed to have found. Is there a way to tell when
your sense of calm is true wellness and tranquility rather than in the numbness
felt when giving up? Can I be at peace with myself and still fight for that
which I may never achieve?
My mind struggled with
everything I believed before the 26th. The Eight Dimensions of Wellness now
felt like something fitting to my mindset only as things were going well. The
distraction of my arm and hopeful concern for my brother fed worry for my mom.
This was a lot to bear, even as I downplayed my issues when calling back East
to check in. Her sons were suffering. I cannot imagine the anxiety.
We all held our breath, hoping
to have our worst fears proven false.
I am unable to translate the
meaning of my emotions at that time. I tried inserting possible answers to see
if I could rationalize how I made it through each day: mental lethargy,
indifference, apathy, disassociation, depression. I did not welcome my physical
pain, yet I was reluctant to accept anything more than over-the-counter
acetaminophen or ibuprofen.
After more than a month of
rehab, I finally agreed to a cortisone injection to ease the pain of my slow
recovery. Everything to follow started with the doctor’s comment, “Before the
shot, I want to do a sonogram and see what exactly we are looking at.”
Warning: Morbid Medical Jargon
(Translation Follows)
Ultrasound
- Ultrasound shows full-thickness supraspinatus tear with retraction as well as subluxed biceps tendon.
- Somewhat challenging situation given that his left arm has disability secondary to his MS -because of this, it is important to maintain strength and function in the right arm as much as possible, but rehab postoperatively for rotator cuff repair will be somewhat more challenging as he will need to rest the right arm as well.
- We discussed this with the patient, and I think the next best step is to get an MRI and discuss his case with the surgeon.
MRI
- Full-thickness, full width tearing of supraspinatus extending into the anterior fibers of infraspinatus on a background of tendinosis.
- Tendinosis and partial-thickness bursal sided tearing of the mid to posterior fibers of infraspinatus.
- Tendinosis and partial-thickness interstitial tearing of the cranial fibers of subscapularis.
- Tendinosis and partial-thickness longitudinal split tearing of the intra-articular and extra-articular portions of the long head of the bicep’s tendon with medial perching upon the lesser tuberosity as it exits the bicipital groove.
- Contact orthopedics regarding IF he requires surgery should he postpone the rituximab injection with 100 mg Methylprednisolone? Or can we push up his appointment?
Surgery Consult
- Treatment options were discussed in detail. Questions were encouraged and answered. The pros and cons of various treatment choices were reviewed. Risks vs. benefits, potential complications, likely post-op course, as well as short and long term outcomes were discussed at a detailed PAR conference.
- Pros and cons of operative versus nonoperative management were discussed. Issues surrounding possible procedures, including rotator cuff debridement, rotator cuff repair, labral procedures and biceps tendon procedures, were discussed. We also reviewed the use of implants, both absorbable and non-absorbable. We also discussed realistic expectations for ultimate outcome and potential complications. Issues surrounding distal clavicle excision were discussed, as well.
- Issues surrounding biceps pathology were discussed including debridement versus tenodesis and the possibility of requiring an open incision for tenodesis. Issues surrounding biceps tenodesis versus tenotomy were discussed, in particular the fact that a tenotomy is a smaller procedure that can typically be done arthroscopically but leaves a significant cosmetic deformity with the “Popeye muscle.” Tenodesis may require an open incision and additional implant or anchor. He has done an excellent job with preparing for the social aspects of being able to care for himself through the VA. But there is also a concern about whether he could have an exacerbation of primary or permanent of his multiple sclerosis and could he further lose function. He is already discussed that with his neurologist in detail and apparently is not felt to be predictable.
- If he ultimately decides to proceed with surgery, then the procedure would be a shoulder right shoulder arthroscopy with indicated procedures anticipating rotator cuff repair biceps tenodesis and Regenten graft augmentation given the deficient tissue. We discussed that possible choice of repeating his MRI in about 2 months to see if there is any significant worsening try to avoid the potential risk of the tear becoming not repairable. We will wait to hear back from him as to how he would like to proceed from here.
Translation of Morbid Medical
Jargon
The surgeon and I had a direct,
no-bullshit conversation. Based on my totality of issues and injury, he simply
stated my surgery/rehab would be “brutal,” yet he touted the expected outcome
of his work.
“I only know knives and
needles. I don’t know the details of other options. That’s a decision you will
have to make on your own.” It was the best medical advice I could have received.
“That’s a decision you will
have to make on your own,” was a recurring response to my unique combination of
issues, echoed by a second orthopedic surgeon, my sports medicine primary, my
neurologist, my physical therapist, my mental therapist, and my priest.
I weighed every option.
Expectations for me flew from
good to bad, then back to hopeful. I decided not to have surgery to repair my completely torn rotator
cuff tendon. The expectation (hope) was that the partial tears would
sufficiently heal. After receiving input from every source, all mentioned
before, plus Melissa, I spent time in solace. With my significantly degraded
left arm and leg, I would require inpatient rehabilitation for at least eight
weeks before starting the rehab to use my right arm. I would be unable to feed
myself or perform essential tasks. A 6-to-8-month outlook was the minimum
portrait have a functioning arm. It is my only functioning arm.
It is doubtful my body
would recover from everything I would lose, in terms of overall function,
during that time. Adding the increased potential of additional MS issues arising
due to the strain on my body creates a low probability of success.
How much I will permanently
lose remains to be seen. My recovery will be dependent upon rehabilitation and
dumb luck. Many of the functions at risk I am not currently able to do regardless.
My permanent pain level will vary from none to significant, all to be
determined after the other partial tears heal.
Every option is bad. After
a lot of deliberation, I decided intense rehabilitation had the highest
potential to be the best of the lot. I spent time reviewing with every possible
source of input, included my private considerations, and made a choice I will
have to live with forever. I am comfortable with my decision.
No surgery.
On March 19, my focus
switched to a cortisone injection before flying back East. My doctor
recommendation was against a shot at that time. Leaving the next day, I would
not be close to my health care if issues arose. Reluctantly, I agreed. He
offered pain killers for the flights and duration away, but it was now my turn
to decline. I am deathly afraid of opiates, having seen too many morbid outcomes.
My pain was secondary to
the purpose of seeing my brother. He was now home to die.
I am grateful I got the
chance I did. I saw him while he could still speak. 11 days later, my brother
took his last breath. He was 51 years old. Two months and two days after his
first indication of an issue that planted its seed 7,141 days prior, on 9/11,
when he stepped up to project the city he swore an oath to protect as an NYPD
sergeant. Well done, Tommy!
My brother was now at
peace.
His family’s burden was
just beginning.
My focus needed to return
to life.
Neglected pain management
and rehabilitation necessitated my return to Portland. Two days later, I flew home.
As the dust settled on a surreal ten weeks of utter turmoil, I made my first
conscious efforts to reflect upon my place in a world moving at the temple far
beyond my capacity even to feign control.
- Sunday, return
- Monday, cortisone treatment before I get to see Eleanor finally! With the biggest kiss and hug, we took a trip for ice cream. E gently stroked my arm as I broke down, telling her Uncle Tommy has passed.
- Tuesday, intense rehab
- Wednesday, I sat quietly in my home watching the live stream of my brother’s funeral service. The flag-draped coffin held his cremated remains in a bastardized COVID era event.
- Thursday, intense rehab
- Friday, rest a weary arm with a self-described “tweak.”
My text to Melissa on
Saturday seems funny now:
First day in a while I
actually felt active and productive! The funniest part is we only left the
house to walk up the block and check the mail. Ha
Big focus on the house.
Cleaning, cleaning, cleaning. Six loads of laundry washed, dried, folded and
put away. Clean sheets on the bed! Baked two protein breads. I have been on the
go since 5:30 until 4:00.
Strong PT in the morning;
my arm felt great the entire day. I never had that motion where I “tweak” my
muscles. I can usually feel it before the tweak, so I backed off or readjusted
my position. I was able to do everything I wanted: reaching, lifting, etc. Now,
a warm shower then my ice pack!
Mandatory daily tasks from
now on include morning warm-up/PT I am watching out for that nasty tweak.
Eleanor was a trooper, a
helpful part all day!
In that shower, I looked
down and noticed my ruptured bicep. I immediately recognized the “Popeye” bicep;
my next trip was to the ER. They confirmed and told me to do “nothing until I
follow up with ortho.”
Sunday, after a series of
stressful calls to my primary sports medicine, VA Orthopaedics, my VA social
worker, I waited to see what my next steps were.
Monday, I met with my
primary. He told me exactly what I thought I was going to hear. There was no
need or ability to do anything different since the tear would probably have
happened soon anyway. Everything was a textbook scenario. Surgery is usually
not an option explored in this case.
Get back to physical
therapy. Manage everything else with continued care. Focus on the repair of the
shoulder, which has many redundant components to it.
Long story short – put on
my big boy pants and suck it up!
Tuesday, I spent most of
the day in the VA hospital, receiving my semiannual Rituxan treatment. I
occupied myself by noting the highlights of this recent endeavor into the world
of “What’s Next?”
For as long as I can remember,
there have been two parts of my life. One, I thought I was able to control. The
other would probably destroy me someday.
Control. This journey first began
on October 6, 2019, with the ambition to control parts of my life with which I
had grown uncomfortable.
I nearly cried while listening
to a loving voicemail left in an attempt to support me. “I’m glad you’re
feeling better and getting back to normal.”
Better? Back to normal?
I once again began to
experience the painful emotional response to a heartless question as I leaned
back in my chair and closed my eyes.
“Now what?”
I cannot think of the last
time I just stopped. All my constant noises faded away until I had nothing more
to focus on, just the pages yet to be written in my efforts to reconstruct and
define myself.
***
The developing draft of my
story will be shared on this secure drive location: https://drive.google.com/drive/folders/1E4cNpkFBU4qf3zYDIqZ5Nw72DzhGe88r?usp=sharing
These are the thoughts going through my mind as I try to piece it
all together…
This
is not about what my life will be like when the
fight is over.
I
will never stop
I
will never quit
This
is my story
https://mssociety.donordrive.com/participant/Eleanor
100% of the royalties earned
from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books
Never
Stop… Never Quit…®
Kevin Byrne
Portland, OR
www.neverstopneverquit.blogspot.com
Never Stop…
Never Quit…
Reg. U.S. Pat. & Tm. Off.
