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.
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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.
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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
MRI
Surgery Consult
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.
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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.?
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.
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The developing draft of my story will be shared on this secure drive location: https://drive.google.com/drive/folders/1E4cNpkFBU4qf3zYDIqZ5Nw72DzhGe88r?usp=sharing
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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
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100% of the royalties earned from my books go to the National MS Society, to support our fight: https://neverstopneverquit.com/books
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Never Stop… Never Quit…?
Kevin Byrne
Portland, OR
Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.