I write from a place where I am physically safe. I am surrounded by love and support. I am financially stable. I have access to healthcare, both physical and mental health. But I also write from a place of darkness, of loss, of profound grief. Right now, the concept of time is foreign. I have lost patience and the ability to see the good. I’m struggling. I’m hurting. I keep coming back to the phrase ‘depths of despair’ to describe my inner turmoil. I’m tested with each new depth reached. I am deep in my despair.

Picturing words

As a creative person, dare I say an artist, I see words or phrases and immediately imagine their color, their weight, how they move in this world, and feel in the mouth when spoken. I think about the sounds, smells and taste of words. So I’m here, chewing slowly and yet choking on the acrid bitterness of despair. I’m stumbling in black, murky, grainy quick sand with skies weeping and spitting cold, wet rain and hail. I see dark, vibrant colors; hues of blue, green, gray, and black. I feel as if I’m sinking, reaching the surface and coming up for a gulp of air, only to be pushed under the water, held under the black water, unable to to come up. I’ve reached a new depth, my lowest point yet.

Mystery pain solved

In the beginning of February, I had pain in my left arm around the elbow. I thought I was favoring that arm and putting strain on the joint while walking with my rollator. I tried to adapt, to rest, and ice the pain away. It got worse, radiating and shooting pain up to my shoulder and through my neck. I asked my mom to come stay with me because there’s no glory in suffering alone. I messaged my neurologist and his fellow and they both responded almost immediately. I am going to share what the fellow wrote verbatim because it’s important for every person who has ever felt ignored by their doctor or had their symptoms dismissed to read her words, or for those who have learned to live with chronic pain so they can’t recognize when pain becomes too much. It’s life-changing when your doctor is your advocate and understands your suffering. And it matters when they expertly communicate what you needed to hear.

She wrote in response to my concern over worsening pain, “I think it is far too easy to write things off when somebody has MS, and I would hate to miss something unrelated that could be more serious or need a different treatment. And there is even more reason to be careful in your case given everything you’ve been through in the past few years.”

Another Emergency Department visit

I felt stable in my symptoms the next day, so I sent my mom home but woke early on a Sunday morning and the pain had worsened, it migrated up my neck. It was sharp, constant, and intense pain so harsh it took my breath away. I texted my dear friend and lovely neighbor to see if she was up (she has a three-year-old so it was a safe bet) and asked if she would take me to the Emergency Department. Looking back this seems insane, but I really believed I would be seen by a doctor, given pain medication, and sent home. Spoiler alert: that didn’t happen.

In the ED, they ruled out a cardiac event first. I had an extensive two-hour brain and cervical spine MRI to rule out new MS activity and lesions. They decided to admit me to the hospital. I had an ultrasound as well as a x-ray of my arm and neck. Everything came back clear, clean, and unremarkable. They threw everything they could at my mysterious and grueling pain including steroids, opioids, seizure and nerve pain medication as well as muscle relaxants and antivirals. The only thing — through three days of the worst pain I have ever endured — that took the edge off was an opioid, first fentanyl in the ED then oxycodone when I was in patient. And I had to cry, scream, yell and demand help, but that’s a story for another time.

Following the ultrasound, I was wheeled back to my room and happened to notice a small rash/bump on my left arm the size of a grain of rice that hadn’t been there before. I causally mentioned it to my neurologist who was kind enough to visit me in hospital. He happened to be there and took one look at it and pronounced, “That’s shingles. You have shingles.” Once a diagnosis is rendered the entire game changes in the hospital. Everyone goes from hypothesizing to pre-scripted action plans. Also, my extreme pain was instantaneously validated.

The clinical team looked at my mother sitting next to me and asked if she was vaccinated. Thank goodness she was. PSA: get your shingles vaccine ASAP if you’re eligible. This diagnosis explained my nerve pain in one fell swoop. I didn’t catch shingles like one catches the flu or COVID. Even after the nuclear holocaust that was my chemotherapy regimen from bone marrow transplant, the chicken pox virus from my youth survived. It lies dormant in the body waiting to be woken up. My baby immune system got triggered and sadly, chicken pox awoke, 30+ years later, stronger and more painful in shingles form.

The pain of shingles

I’ve broken bones, suffered miscarriages, and endured HSCT but I can safely say, shingles is the most excruciating pain I have ever experienced. It finds a nerve path, settles in and wreaks havoc. My left arm slowly erupted in a rash from wrist to shoulder like a bad game of connect the dots. I was lucky that the rash was not itchy, oozing, or overwhelming it was just present. I was discharged home with a list of medications longer than my arm.

I forget that my body is so fragile. I forget that it takes time in it’s descent. I think each time will be different and am surprised when it isn’t. I was discharged home but got weaker each day. My village rallied, taking shifts and working from my home so I wasn’t alone. Throughout this, I continued to work. I welcomed the distraction from my physical pain. I enjoyed the mental energy expended. But again, as the weekend approached, I texted my neurologists and said something was off, something was wrong. My legs and mobility were continuing to decline. Something was still very wrong. They arranged for me to bypass the ED and go straight back to inpatient admission.

Getting worse not better

I spent the weekend in the hospital, ignoring the Super Bowl, listening to audio books, willing myself to get stronger. My legs, my poor sweet legs, they just don’t remember how to work. The muscles contract but no movement occurs. It saddens me every time. My medical team worked to control the shingles pain, which they said could be heightened or more intense due to my MS. They also were not surprised that my MS symptoms were flaring. Like pushing on a bruise that already exists, shingles pushed every MS bruise. It also overwhelmed my baby immune system. I had nothing left to give, no spare energy to draw from.

They asked if I had a safe place to go home to if I was discharged. My mom agreed and I was released. Looking back now I wish I had handled this conversation differently. I wish I had clarified that my health goals involved independence. Discharge to my house is different than discharge to my parents. What am I still capable of doing on my own? What are my goals physically outside of shingles that I need my medical team to address? What’s the plan for health and wellness and rebuilding strength? I didn’t ask those questions.

The universe just doesn’t care

So here I am, broken and battered — literally and metaphorically on the floor, struggling. I thought I was through the hard part. I thought surviving bone marrow transplant in 2022 meant I got a pass for 2023. I thought going through a divorce at the same time as a bone marrow transplant meant I was due good things, good people, good outcomes from the universe. But we all know that isn’t how it works. Bad things happen to good people every day. The universe owes me nothing.

I will continue to be surprised by the new levels of disappointment I can experience as well as the continuous process of dealing with body grief. But I will also try, try harder than anything in my life, to continually shift my focus to the good, the light, the moments of joy and happiness. They are brief, but they are present. In my yoga teacher training, my instructor said light chases the darkness away, always, every time. I’ve clung to that image over the years. It only takes a drop of light to make the darkness dissipate.

Two of my coworkers I met working on COVID-19 vaccines with, visited me in patient and delivered Starbucks coffee to my bedside. My dear friend in Australia contacted my mother on Facebook, got her address and sent me a stuffed koala bear to snuggle. I have received text messages, Marco Polos, deliveries of brownies and flowers and an outcry of support and love. Each message matters. I watch them, I read them, and I cherish them.

My mobility is not me

In the moments before sleep at the end of the day and just after waking, I go back to that artful imagery of words. I reflect on what joy or happiness means for the day ahead. Is it sunshine on my deck? Is it a visit from a friend? Is it taking a shower? Is it my foot moving with a little more ease? I think about the things big and small that could happen. I dream in color, bright pinks and beautiful golden yellows. I wonder at the brilliance of that first sip of the first cup of coffee in the morning or my mom’s oatmeal chocolate cookies. I think about the beauty of music and the soothing sounds of piano or cello. Right now, my mind is what I have, untouched by this horrible disease. I have my writing and creativity. I have my sense of humor. I have an active imagination. I cling to those more fiercely with each new set back in the body.

I also repeat over and over that those who love me do so not because I have hiked mountains, but because I’m me. My mobility is not me. I work every day to understand that simple sentence.