Chronic: The Pain We Don’t See, Chapter 20

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Top illustration by Tim Forkes

Chapter 20: Sisyphus

Monday: December 28, 2020

I have a tattoo on each of my shoulders. On my left is one with the Japanese symbols for the words, “Running Man.” It lies within a rising sun and shows my personal best times I ran over five, ten, and fifteen kilometers. It’s red, orange, and yellow colors draw comments from people who ask what it means.

On my right shoulder is a gecko stretched across the island of Kauai with the words, “Kimo’s Kihi.” It represents my corner of the world, a quiet spot where it is the easiest place to just kick back and enjoy life in a much simpler way.

Lately, I have been considering a third tattoo, one to represent my struggle with chronic conditions that cannot be seen by others. There is a loneliness that comes when you suffer from what others can’t see. People with autoimmune disorders go about their lives and for the most part the people in their lives have no idea they suffer from one unless they share their struggle. Their body attacks their digestive tract, joints, muscles, and with them, sometimes their minds. It becomes easy for depression to set in along with the physical struggle that goes unseen.

Shame and embarrassment often are linked with such struggles. It becomes too easy to isolate from the outside world because the discomfort that comes from your body attacking itself is the sort people do not want to hear about. The foods we eat, the weather, and worst of all, the stress from worrying whether you will get hit with a flare up while socializing is often enough to trigger an attack.

Sufferers go in search of cures that often are not part of the traditional methods of treatment others follow when they are ill. Homeopaths, eastern practitioners, naturalists, herbalists, hypnotists, therapists, and psychiatrists are just some of the people we seek for answers to our problems. Too often, when you tell someone you suffer from chronic pain, celiac disease, or IBS, you are met with a story from someone who tells you about a person they know who has something different because they do not know what else to say. Other times, they turn it around and talk about their own aches or a recent trip to their doctor.

In the end, we feel alone, left to push a giant stone up a mountain only for it to roll back down before reaching the peak and having to start over. We become Sisyphus and we relate all too well with those who lose their lives to their silent struggles because we have too many times asked ourselves, “Is this all there is?”

The mind is a powerful tool. When properly fed with love, support, and compassion, it is able to overcome many challenges. As I used to always say to the kids I taught Physical Education to, “Whether you think you can or can’t, you are right.” We all hit rough patches in life where we need to rely on others who can remind us we can get through this. We need people who simply are there and do not judge us for our struggles. We have no problem providing encouragement, love, and hope for the person struggling to get their life back after cancer surgery, open heart surgery, or even something like a broken leg. Their struggles are visible and for the most part, more relatable than what is not visible.

Photo by Tim Forkes

For much of my life, I learned to retreat into my own world and not rely on others for what did not feel right inside me. Constant battles with episodes of depression sucked up my energy. Trying to hide them from everyone and solve the problem alone eventually beat me as each time I was left to start over and push that stone up my personal hill, the stone got heavier and the hill became steeper. It has been the same with my battles with pain and fatigue.

I am lucky because I know I am not alone anymore. Charlene, my wife of less than four years, gets me. She understands my struggles and brings to me a level of empathy I have gone without for much of my life. She can relate to my struggles because she has faced her own set, different than mine, but certainly no less. When one of us hurts, the other hurts for them. We are not let down by their pain and we do not put the other down for theirs. The result is our load is lightened and we become more appreciative of what and who we have instead of focused on what is happening to ourselves.

Yesterday, I struggled at work just to maintain a grip on the roller I was using while painting the exterior of a building. My right hand was stiffer and more numb than usual, but I had to rely on it because my left hand was needed to hold on to the pan filled with paint while standing on a ladder. My pain has spread beyond its usual places; the neck, spine, and shoulders. It now is constant in my elbows, wrists, forearms, and fingers. There is no break from it unless I increase the Vicodin I am already doubling up on. For the past week, the pain has also increased in the back of my ribs and feels like it presses on the lung I collapsed when thrown off my bike.

Today, I haven’t much choice but to call the pain clinic and become the squeaky wheel. I need to demand someone get back to me with an answer they should have had by now on when I can get my next epidural. It has been nearly four weeks since my doctor sent in a request to his surgical staff and twelve days since I stopped by to see what the delay was and I still have no answer. Like anyone else in any other line of work where you are exposed to unpleasantness, I am sure the staff at the pain clinic becomes numb to the pain they see on patients and fall into the trap of forgetting who it is they serve.

I have become more patient now that my head feels clear of depression. I have also become my biggest advocate and speak up for myself more instead of not wanting to bother anyone. Growing up in a large household with a dad who wanted peace and quiet taught me early not to rock his boat. Now, if necessary, I will make tidal waves if I need to in order to ease my pain. Still, I know these are difficult times for everyone and I am sure they are swamped with countless demands for more pain meds and treatments from not so pleasant folks. I have seen some first hand.

However, I have come too far this year pushing my boulder up a mountainside. I have slid back on the slippery slopes of pain, fatigue, and depression, but I have managed to keep my boulder in front of me. Slowly and patiently I have ascended what not long ago seemed insurmountable.

Thomas Edison made over one thousand light bulbs that did not work before inventing one that does. He brought light to a world of darkness, never giving up on his quest. When asked about his determination despite all his setbacks, he said with each failed invention he learned something new that eventually allowed him to succeed. Each time my boulder has rolled back to the base of my mountain, sometimes running me over in the process, I feel I have learned something new. It has taken me a lifetime to get to where I am, but I finally feel the peak is within reach and I am not being fooled by another false summit.

There were times when I used to run in road races where I felt I was about to break from the pace I was keeping. I was on the brink of disaster only to find it in myself to push through the pain and doubts that were creeping in. Then I would reach a point, perhaps a mile or less from the finish, where I could see my effort was about to pay off. Instead of caving into the discomfort, I became re-energized and managed to summon a finishing kick that reeled in runners ahead of me. I believe I am at that point now.

The race is never over. There are always mountains in our lives; each one preparing us for the next. They come in many forms and can appear out of nowhere.

Rocky Mountains (Tim Forkes)

When I trained for races, I often headed to a local track and put myself through grueling workouts. My hardest was always a series of quarter mile sprints. As my conditioning improved, I gradually increased the number run from ten to twenty while maintaining a steady time for each one. What told me I was in peak shape was not the total number run or how fast I ran them, but the time it took me to recover between sets. Early in a season, I would run a hard quarter mile and follow it with a recovery of the same distance. However, when I was in peak shape, my recoveries would drop from one lap around the track to a quarter lap.

I feel like my recovery time is getting shorter. Mentally, I am more relaxed and patient. I have learned how to pace myself with each round of pushing my boulder. Once I summit this mountain, I will take the time to enjoy the view before I ready myself for the next race, the next hill, the next challenge; whenever it arrives and wherever it takes me.

Each day is a race within a race. Once again, I am awake early. My joints are stiff, my muscles are sore, and my ribs are tight. In a while, I will head out to the garage and put myself through a series of moves designed to wake up what wants to shut down so I can head off to work where I have no idea what awaits. I will do what I can do. I will learn from my errors. I will move forward, even if for every two steps forward I take one back. I will get to the finish and I will enjoy what I accomplish.

Perhaps when this current COVID shutdown ends, I will get that tattoo.

Thursday: December 31, 2020

As this year of global craziness comes to a conclusion, my pain knows no concept of time. It continues to do its things whenever it wants and as much as it wants and I feel powerless to do much to fight it. I am trying to accept this riptide of pain I am caught in rather than fight it because I know the more I fight, the harder it is on my mental state. This is not to say I have given up because I have not. I just know I need to relax and accept being caught in a current I cannot swim out of and just need to keep my head above water until it lets up.

As often is the case, my epidural procedure for next Tuesday can’t come soon enough. Each day that passes finds me engulfed in more physical discomfort at a time there is a massive surge in COVID cases that threatens to shut down procedures like mine. Since my doctor has his own surgery center, I feel he has more control over an outbreak than any local hospital where there no longer are enough beds for patients.

While work is hard on my body, I know it is not adding to my discomfort. On my days off, by late afternoon I am pretty much at the same pain level I am after an eight hour shift. Tuesday evening, in a matter of minutes I went from feeling very good to being in horrible discomfort. It felt as if my body was turning on itself and deciding to rip my arms apart, one fibrous muscle after another while I lay under a crushing weight that pressed against the back of my rib cage. My right hand felt stuck in a semi clenched position. If I tried to open it fully or close it tightly I was made to feel like it was impaled by a knife.

Oddly, after waking up at 1a.m., I felt refreshed and pain free. My energy level was high and I worked from eight to four without feeling fatigued. My work day was spent bent, twisted, and contorted working on toilets and bathtubs. The work was constant and I was pleased with how much I got done and how well I felt despite the night before. By seven in the evening, my arms were worthless and any movement or task asked of them was nothing but an exercise in pain tolerance.

I remind myself I am lucky because for the last few days my pain has been kept in my arms for the most part. My head and neck have felt good and the tension I often get that works its way down my back has been missing. I have also had a minimal amount of burning in my spine. I remind myself these are good signs and my upcoming procedure will provide the rest of me with much needed relief.

Photo by Tim Forkes

This is just the physical toll of pain. It is important to understand the emotional toll it has on others besides myself. My wife is left to feel alone all too often after putting in her own long day of work. It becomes hard for me to concentrate on “Us” when my pain level reaches eight on a scale of one to ten. She deserves more from me and with our work schedules not always lining up, it becomes harder to find the time and energy to connect.

This has been a rough week for her. Charlene’s mother fell and hit her head earlier in the week. It has become clear she will need to be moved into the memory care ward at her assisted living facility and a recent zoom conversation confirmed her mother no longer knows who Charlene is. Despite never being close to her mother, Charlene has taken it upon herself to provide her with the best living situation possible since her father passed in 2017. Her brothers, while kept aware of her mom’s situation, have no real understanding of how frail their mother is.

I need to be more in tune to Charlene’s needs just as she has been to mine. The last thing I want is for the two of us to become a casualty in all of this. We have both been fortunate to find in each other a mate who gets us and appreciates the second chance in marriage we both have enjoyed. The last thing I want is for my pain, fatigue, and depression to become wedges that drive us apart. Still, when my body turns on itself, I feel powerless.

Today, I have the day off from work. At least I hope I do. The schedule says I am off, but the person who made it failed to schedule anyone for maintenance. Since the other maintenance person has been temporarily moved to another motel because of a shortage of healthy employees, it is just me and someone training under me who is limited in ability. Today is his day off as well. Since I live just five minutes from the motel, it will be me who gets asked to come in if a repair is needed.

Otherwise, I am hopeful today Charlene and I are able to spend time together. We are both working on our own paint by numbers projects. With us both being off today, we can work on them together instead of doing so alone on our separate days off. Charlene is the easiest person to be with because we can connect so well just being in the same room. We can talk about anything and everything and her relaxed manner is a perfect fit for me. I always wonder what it is she sees in me because in my eyes, I feel so flawed for anyone to want to become involved with me.

I also am set to get more blood drawn today. It has been two weeks since I received a testosterone injection so it is necessary to check some levels in order to gauge how much I need and how often I need it. Since my last injection, I have noticed less fatigue and a little more strength, but as I wrote earlier in this post, no significant improvement in my pain. Still, if it helps knock out my fatigue, and with TMS doing so well with my depression, I am left in much better shape mentally and physically to combat my pain. As Meatloaf once sang, “Two out of three ain’t bad.”

Photo by Tim Forkes

A year ago, I wondered if all I had left in my life was seeing how much I can tolerate from three chronic and invisible illnesses. Was the final third of my life going to be spent wishing I never lived it because it only turned out to be torturous, or was there a chance I could overcome what was dominating my life? I have worked long and hard to take on this three headed monster. There are signs I have lopped off two of its three heads which leaves me in a much better situation than twelve months ago.

Still, I know it is a fight that never ends. Just as someone with diabetes, heart disease, or any autoimmune disorder knows, I can never let up and think my life will return to what it once was. I must remain vigilant in handling these challenges while at the same time not allowing myself to use them as an excuse for being less than who I need to be for the woman who I married and the others who depend on me. I do not live an excuse, just a challenge and when I stop and think about it, I realize we all do in some form or other.

It is just past three in the morning. There is a calmness to the hour and as I type away, I am able to hear the quiet. The world around me is asleep. My arms are slowly beginning to feel as if they can perform the functions most of us take for granted. My ears can pick up sounds I normally can only hear with my hearing aids. There is a clarity that comes with this calm and it is refreshing to be left with just my thoughts. This has not always been the case.

There are challenges that lie ahead for me in the coming year as an individual and as a person living during unpredictable times. However, unlike a year ago, where I was filled with doubts about myself and the future, today, I know I can face what is thrown my way and navigate a path forward that allows me to grow as an individual, husband, father, employee, and human being.