Chronic: Pain that is invisible - Baltimore Post-ExaminerBaltimore Post-Examiner

Chronic: Pain that is invisible

Illustration by Tim Forkes

Introduction 

It is easy to tug at our hearts with images of people suffering from illness. When we see pictures of children bald from their cancer treatment, we stop and think about how fortunate we are and how unfair it seems to be so ill at such a young age. We remember the physical changes our aging parents go through and are reminded of our own mortality. It is hard not to feel bad for the person we see struggling to get around on crutches or confined to a wheelchair. All of these are clear visual reminders of challenges humans face. 

The past year has been filled with countless images of men and women of all ages, races, and economic circumstances fighting for their lives, victims of a pandemic that has spread worldwide. One day they are living their life as normal as possible and in a matter of a few short days they fill hospital beds to capacity, morgues beyond their limit, and add to the mounting totals of sick and dead. 

What we fail to see are the people we encounter every day who face the unseen ravages that come with suffering from depression, chronic pain, or chronic fatigue. For the most part, these are invisible illnesses until each has spiraled out of control to a point they can not be hidden. Unfortunately, long before that time has arrived, the sufferer has learned to retreat into their own hell in an attempt to hide their illness from others. 

I know this because I have lived this. Take it from someone who has walked a path he has often wondered where he is headed or how he got to where he is; it is a lonely and exhausting journey. 

Add in the stigmas that come with depression, pain, and fatigue and you end up being one of those people who say about a sufferer, “I had no idea he/she was suffering. They seemed fine to me.” 

I come from a generation that was raised to not talk about our feelings. We had parents who believed that if they did not talk about something, maybe it would go away. We also did not talk about what was uncomfortable and considered taboo. Mental health was one of those taboos and consequently, people like me who entered this world wired for depression never knew what they suffered from because no one modeled talking about our feelings. 

Depression, chronic pain, and chronic fatigue often go together. I remember preferring to be by myself despite having seven siblings. Unless it was a group game of tackle football on the weekend, I usually played by myself or with a singular friend who lived around the corner. As a kid, I would get teased at home in the evening because I could be found with either a heating pad or ice pack on some part of my body that simply ached. It would be decades before I learned about how the body’s response to emotional pain often results in inflammation just as it does when it is physically injured. 

I have clear recollections of feeling like I had to mask my inner struggle with depression by being the class clown. Like the late Robin Williams expressed, I went to great pains to try and make people laugh because inside I was hurting, even though I was never sure why. Other times, I just retreated from people all together and waited for what I referred to as that fog that came along and settled inside my brain, sometimes for days, others for weeks. By the time I was a father, that fog might last for months. 

With my fog of depression came physical pain. It would start out as an overall feeling of aching throughout my body and eventually settle into my lower back, often to the point it would seize up and make going about my daily life miserable. The stress that comes from knowing your work is cut out for you to make sure no one knows how much physical and emotional discomfort you are in wears you down, sapping you of energy and joy. 

When the fog and pain cleared, all was well, or at least that is what I told myself. Eventually, you realize it returns with greater frequency and lasts for longer stretches and hiding it becomes exhausting. Your loved ones are the first to notice the swings in emotions. Then it is your colleagues at work. In both cases, relationships suffer and over time, you feel isolated and left on your own to combat what ails you. 

The time lost and energy consumed feeling you are on your own because there is something wrong with you that society has deemed as not being “normal” is enormous. The stigma that comes when you finally realize you suffer from a mental illness that makes people uncomfortable to talk about just ends up leaving you feeling more isolated. No matter how funny, smart, or strong you try to come across, inside you know you struggle, but you feel too much shame, pride, or fear to get the help you need. 

You lose yourself, your loved ones, and years of possible joy all because you suffer from the invisible and people are too often uncomfortable to know how to help. 

What follows are my journal entries over the course of a year in which I devote to knocking out the demons that plague me. It has taken me over 60 years to feel comfortable enough to share what millions of Americans suffer from, but who too often do as I have done and suffer alone. I am not any different from the rest who must find ways to deal with depression and the chronic pain and fatigue that can come from it. 

If you are one of the many who have to deal with these invisible enemies, you will be able to relate to the thoughts I have penned. You are not alone and you do not need to be alone to fight this battle. We live in a much better time for those who are suffering from these silent killers. 

Hopefully, if you know someone who deals with one or all of these three challenges, this will help you to better understand what it is like for the person who just wants to enjoy what most get to take for granted. 

Chapter 1: First Steps Sunday: January 26, 2020 

I have no idea where I am headed with this writing endeavor. Like much of my life, I feel like I have no clue what lies ahead and for a person who prefers knowing what’s around the corner, it is not easy for me to come up with something to write about that I have not taken the time to process. 

A few moments ago, I learned of the tragic death of Kobe Bryant at the age of 41. There is no way of knowing how our lives will unfold and when they may come crashing to an end. At 49, I survived a bicycle crash I was told by one doctor after another should have either killed me or left me in a wheelchair. Lying alone in the middle of a quiet street knowing my life was no longer in my hands to control was nothing like I would have thought it would be like. I was no longer angry at the world and accepted my fate. I decided to relax and think of my loved ones and the joy they had given me for what I was convinced were my final thoughts. 

I have been told countless times I was lucky I was saved and yet since that day, June 16, 2007, I have not always felt as if I was lucky. Instead, it seems the only thing I feel is pain. Antidepressants have kept my emotions in check to the point I no longer express much of how I feel other than when I am in pain. I process, internalize, think a lot, and write, but I do not often feel. 

Tomorrow, I am set to meet with a new therapist and resume talk therapy with the hope she can unlock all the shit that has built up inside me. I have no idea whether or not I will be capable of opening up to this person and freeing myself of weights I stack on my shoulders. I can’t blame anyone but me for where I am today. I have much to sort through and make sense of and can’t afford to wait any longer if I want to thrive. 

I am tired of this pain. I am tired of this fatigue. Mostly, I am tired of knowing I have lost control of my life in areas I should be able to master. Besides feeling like I am stuck in a rut, I realize I am too old to be young and too young to be old. I want to think of myself as still youthful and useful because I fear the idea of growing old and what it does to us. 

Having been on the brink of death, knowing I was just minutes away from dying, and somehow being one of those lucky people who survive what should have killed them, I no longer see death as being anything to fear. I only worry about the impact my passing will have on those I leave behind. 

However, fading away into oblivion, growing old and feeble, and wanting nothing more than to pass away because your life is no longer worth living seems more like a punishment than a reward for a life well lived. 

Like my brother Rob, who died at the age of 42 in 1992, Kobe Bryant died suddenly and in spectacular fashion. His 13 year old daughter was with him and also was killed. The real tragedy is him leaving behind a wife and daughters to make sense of it all. 

Tomorrow, I hope to begin making sense of a lot of stuff and in the process, gain some peace of mind, acceptance, and a new outlook that will allow me to be a better husband, father, employee, friend, and person. I can be better than I am. At the very least, I need to know I exhausted everything I have access to now so if I come up short, I will know I tried. 

Wish me luck! 

Monday: January 27, 2020 

The biggest difference I noticed in my first session with my therapist was how much more comfortable I was talking with her than the guy I began seeing in 2014 for a few years. The session was about what I expected. Most of the time was spent addressing the reasons why I have come to her, but did not go into great details on anything. 

I know this is a process and not a quick fix. As long as I remain open to it, it will yield positive results. There is much to go into and with a clearer head than I had when I tried therapy last time, I am hopeful for the best. 

Thursday: January 30, 2020 

It was nice while it lasted. Most people take living without pain for granted. However, for me, a week without any pain symptoms other than the nagging headache I have had now for almost three months was like being on vacation. 

This morning, I woke feeling as if I had been thrown out of a moving vehicle the day before. I woke up at 3:52, a little later than usual, after having moved from my bed to the recliner. When my arms hurt, I am unable to push myself up off the bed when I get up in the middle of the night to use the bathroom so I try to catch more shuteye in the family room. The recliner keeps me from rolling onto my sides, something that every time I do sends sharp stabbing pains through my shoulders. 

Once I was up and out of the recliner, I dragged the blankets I used across the room to the couch because my arms lacked the strength to pick them up and carry them. I tell myself I need to get some caffeine in me because in the thirty seconds I have been awake it feels like 

someone has used the back of my head for batting practice. I am also able to feel a slight burning in my spine, a sure fire sign that by mid afternoon I will be visiting my medicine cabinet for some Vicodin and Robaxin. 

Nine days ago, I went to bed thinking if my pain level got any worse I was going to go to the ER the next day. Amazingly, I woke up last Wednesday pain free. I could use my fingers again for small motor tasks. Gripping and holding onto things was no longer an issue. The feeling of my arms being ripped away from the body, nerves lit up throughout my arms, elbows too tender to touch, and shoulders too stiff to lift my arms were gone. My neck felt loose and free, my spine no longer burned, and my headache was now nothing more than a slight reminder of the constant throbbing I had been living with. 

I have no explanation as to why my pain comes or goes. Doctors have no explanation either. All I know is it sucks the life out of me when it hits. There is no joy to be found in anything and because it becomes debilitating, I am left with little more than idle time to think about it. It is a vicious cycle that leaves me like a hamster trying to figure out how to stop making a damn wheel from constantly turning. The only answer at times seems to be to quit, but to do that means to give up. 

I am not ready to give up yet. How can I when I do not have a definitive answer as to the cause for all of this? I have felt pain all my life and I have suffered from depression for just as long. However, as a kid, the pain was only in the form of an overall aching feeling that was short lived. Toward the end of the day, after playing as long and hard as I could, my body would ache and I just figured it was normal until I realized no one else in my family had this problem. Now that I am 61, I understand pain and depression are linked, but to complicate matters is a lifetime of wear and tear on my body from my love of sports and exercise. Toss in the head and neck trauma I suffered in 2007 from a horrific bicycle accident, and it becomes very complicated for anyone to pinpoint a cause or a solution. 

I just want a firm answer which I now realize is not likely to ever come my way. Unlike other medical issues, blood work has not shown anything unusual. X-rays, MRI’s, and countless other diagnostic tests have yet to yield conclusive answers. Drugs like Gabapentin have not fully blocked the pain sensors in my brain without leaving me feeling like a zombie and antidepressants have a way of numbing my emotional reactions, but do nothing to bring me the feeling of joy or happiness. 

When I am without pain, I am still without feeling because I have been medically numbed. If I had one wish, it would be to be able to feel something other than pain. To feel the normal range of emotions others feel and know what it is like to be “normal,” to let others see and know who the real me is rather than feeling like I have to work hard to maintain appearances. I am worn out from all of this, but not ready to quit because I still hold out hope my wish may someday come true. 

Friday: January 31, 2020 

It’s another early start to a long day. Yesterday, my acupuncture session went well in that it knocked out most of my headache and left my neck feeling relaxed. In fact, I find acupuncture very relaxing, it’s just that there is no guarantee it will work for an extended period. This time, my relief was short lived. 

In the afternoon, I did a small project in the backyard that involved constructing a fence that was five and a half feet long and two and a half feet high. Just a few years ago, such a project would have been one of many I would have done to fill a day. However, this one section was all my body could handle and left me heading to the medicine cabinet when I finished. 

I have two more small sections to build and know each will have to be done separately and each will leave me with similar pain. In a few years, if things progress as they are in my arms, I won’t have to worry about these little projects because I won’t be able to do them. It kills me to know this because I always figured I would be one of those old guys neighbors watched in amazement as he did projects around the house. 

The end result of yesterday’s work has left me with a throbbing head, locked up neck, and arms that are of little use. I am a bull in a china shop when I work in the kitchen. I realize now it is because my arms, hands, and fingers are not as coordinated as they used to be. When my neck is tight, I rely more on my peripheral vision and even that is not what it once was. I wonder if my hearing loss has been magnified, if not entirely caused, by the impact to my head when I was thrown off my bike in 2007. When I die, I would like my brain donated somewhere to examine whether I suffered other damage that might explain to my loved ones all of this is not just the result of me being a nut job. 

In another hour, I will go for a run. Originally, my workout plans called for me to run tomorrow but there is no point in trying to get anything accomplished in my gym when I feel this way. If I feel good, I will run hard, if not, well, there will be another run in a few days. 

Running has always been my go to for exercise. It has always released endorphins to counterbalance my predisposition for depression. Now it is a perfect example of what happens when you have to see as many doctors as I do. The surgeon who repaired two herniated discs in my low back in 2017 was the one who suggested I give running a try after not being able to for ten years because of the bike accident. He suggested that I go easy and to stick to dirt and grass which is what I mostly do. If I want to go hard, I hop on my treadmill because I find it easier on my joints. 

My pain management specialists recommend I not run and that I stick to riding my road bike instead. He thinks the jolting from running is not good for my spine and since bicycling is nonimpact, it is better for me. His Physician Assistant thinks I should avoid both. Besides the impact to the spine from running, he says road biking puts my neck in an awkward position that can add to my problems. He also mentions how another spill on my bike could be horrific for me. 

I am encouraged to keep active as much as possible by my chiropractor who explains why I am better off doing whatever I feel I can do because of exercise’s benefits. He tells me I am better off so long as I do not over do it because I am going to have more pain if I stagnate. 

Finally, my primary care doctor simply tells me to listen to my body and trust what it is telling me. Do what I feel I am able to do and don’t force things. In other words, trust my instincts and know anything I do for exercise carries risks. 

As much as I hate this pain I live with, I am not going to live in fear of it. I refuse to allow it to take away my biggest pleasures. I have learned to listen to my body and if I have a choice to make, I err on the side of caution rather than try to push through any discomfort just get in one more mile or one more set. It is pretty much how I live life now. I do what I feel up to doing and try not to force myself to do more. It’s just that it scares the hell out of me to know just how much less I can do today than I could just two or three years ago. 

Saturday: February 1, 2020: 

Yesterday, I met with my pain management specialist to discuss the idea of stem cell therapy. I know there is a certain level of desperation I feel as I chase after solutions for all this pain. Before meeting with him, I completed another fence section and was pretty lit up in the pain department. I could have taken some medication before seeing him, but I chose not to so he could see how I was. 

He was honest with me and explained how stem cell therapy works, the exorbitant cost of it, and how there is no guarantee it will work. He also explained the two types of severe stenosis I suffer from. One involves a narrowing of my spinal canal. The other, which seems worse, involves each of the points where nerves enter and exit the spine and is inoperable. While stem cell treatment may provide some relief, it will not undo my stenosis. 

My doctor then asked me to consider a spinal stimulator, sort of a pacemaker for the spine. He explained in detail how they work and the process involved in implanting them. My biggest concern with one is whether or not I will be able to enjoy an active lifestyle, one where I continue to workout, run, and ride a bike. Exercise has always been the one thing I have relied on for physical and emotional pain relief. I cannot imagine my life without it. 

Charlene, my wife, recently said I should go forward with a stimulator and points out how much of my life is robbed by pain. However, I think I need to give acupuncture and talk therapy time to see if either one helps avoid another surgery and the cost that goes with it. 

My pain specialist tells me not to rush a decision and to think about my next step. As I do, another fear hits me. Would I even know what to do with my life if a stimulator knocked out my pain? Will my brain relax and I become less anxious and depressed or are those entirely different issues that need addressing? 

I know these are topics for me to discuss with my new therapist and like everything else, they will take time to sort out. I am tired of being patient. I am even more tired of being a patient. 

Tuesday: February 4, 2020 

I need a plan that will allow me to look at the road ahead with a sense of hope, joy, and anticipation. Normally, this would not be a problem for me, but I have to admit I have been knocked on my ass by not just the pain and fatigue I feel, but the depression that comes along with it and the fear that comes with thinking things are just going to continue to get worse. 

But this is more than just the result of neck injuries. I also have to admit I have yet to transition well to retirement even though it has been six years. Did I over estimate how easy it would be to leave the work world behind, especially since I was pretty much fed up with working in the public school system? Has time passed me by and left me with few skills to offer the work world, even on a part time basis? Has my confidence been destroyed as a result of my 2016 divorce or seeing how well my wife, Charlene, has transitioned to retirement life? Am I fooling myself thinking I can even be a reliable worker while I navigate my way through the physical challenges I am facing? 

I feel like I am an old house in need of physical, mental, and emotional repairs that are so numerous I have no idea where to begin. Worse, I have no idea how I allowed myself to get to this point and am more than just a little embarrassed by it. 

When I taught, I used to always tell parents who have a child struggling to adjust to a new school how hard it is for children to move. At 61, I see now it is not any easier. My part time jobs were also outlets for me and gave me the opportunity to get to know other people. I have lost all of this now that I am on the shelf, unable to work. Many days pass with me feeling like I am incarcerated at home. I wait for that time of day when my wife returns from her job for what little time we get to spend together much like a prisoner waits for his lone hour a day in the yard. 

Tomorrow, I meet with my new therapist and hopefully the process of moving forward begins taking shape. 

Wednesday: February 5, 2020: 

Another day began with a nasty headache and ringing in my ears at 2:30 a.m. I knew as soon as I woke I was not going to be able to roll over and fall back to sleep. I headed out to the kitchen, ate a banana and some cashews, then mixed my usual 16 ounce mug of coffee with protein powder. Then it was back to my office where I looked at headlines, read some articles, and looked at job postings. At 4 a.m., I headed out to my recliner and placed a couple of heavy duty blankets over me and went back to sleep for about 90 minutes. 

I am used to this routine since I have been dealing with sleep troubles for about a year and a half. Once I was up for good, I noticed I did not have much in the way of aches or pains and the headache had eased up. It’s not always this way. In fact, more often than not, I will be hurting anywhere from mild aching all over to arms too painful to want to bend, straighten, or lift. However, today has been a victory for me in the pain department and I plan to enjoy it while I can. 

This morning was also my second appointment with my therapist. I took some tests to see how I score in the areas of PTSD (mild), anxiety (moderate), and depression (mid range of the severe level). My therapist asked me if I was open to EMDR therapy (Eye Movement Desensitization Reprocessing). This is where I am asked to talk about some traumatic events in my life and then after doing so, my therapist guides my eyes through a variety of finger and hand movements that allow negative memories to be reformulated in the brain, or in other words, releases their traumatic effect. 

She mentioned it is not something that is universally accepted, but that she has been trained in it and has been using it with success on the clients she has seen from last year’s Borderline shooting near me as well as with cops and other first responders suffering from PTSD. All I said to her was I am open to anything because clearly what I have been doing has not worked. I need to find a way to take back my life and not be a prisoner to the pain and depression that has latched onto me. 

I feel I have exhausted most of my options. My hope is between therapy and acupuncture, I can reach a state where I can manage my pain on a consistent basis which in turn will hopefully allow me to work part time and not feel like a burden. If I do not see improvement in six months, I may have to consider a spinal cord stimulator, something I do not want. 

Before today’s session finished, my therapist had me recount an early event from my childhood which was traumatic. It seems silly to think of it as traumatic when I know some of the things others experience, but so much of what goes into making something traumatic is more than the actual event. Mine centered around two neighborhood brothers who were much older than me and known for being bullies or jerks. 

I was walking back home from downtown. It was the first time my parents agreed to let me make the trek by myself and I was going to buy something with the dollar I earned doing some work for my dad. My dad made it very clear that I was not to lose my money and his words indicated he had little faith in me. I ended up not buying anything and on the way home, the West brothers walked up behind me, lifted me up off the ground and began to give me a hard time. When they put me back down and said I had nothing to worry about, one of them noticed the folded dollar in my shirt front pocket. He took it and off they went. 

Not only had they made off with my dollar, they left me feeling powerless throughout the process while petrified to go home. I knew if I returned empty handed, I would be asked to show the dollar as proof my dad was wrong about me. In fact, in my eyes, I proved him correct and felt like a total failure. 

I managed to get home without my parents seeing me. My two oldest brothers asked me about my shopping spree and I began to cry. Jodi was about ten years older than me and Rob was eight years my senior. I told them about what happened. All they said was not to worry about it. An hour later, they returned with my dollar and informed me the West brothers would never bother me again. Given my brothers were older and bigger than the West brothers, I assumed they beat them up or at least threatened to if they didn’t return the money. 

That event was not only traumatic, it taught me the importance of looking out for others. By the time I was in junior high school, I did not have any tolerance for guys who were bullying others and got into a few scraps helping kids who were getting picked on. Still, now and then I am reminded of that feeling of powerlessness I felt that day walking home. It’s weird how some things just live inside us no matter how much we wish they didn’t. 


About the author

James Moore

James Moore is a life long resident of California and retired school teacher with 30 years in public education. Jim earned his BA in History from CSU Chico in 1981 and his MA in Education from Azusa Pacific University in 1994. He is the author of Teaching The Teacher: Lessons Learned From Teaching and currently runs his own personal training business, In Home Jim, in Hemet, CA. Jim's writings are often the end result of his thoughts mulled over while riding his bike for hours on end. Contact the author.
COMMENT POLICY

Leave a Comment

Comment Policy

You must be logged in to post a comment.

HOME / ABOUT / CONTACT / JOIN THE TEAM / TERMS OF SERVICE / PRIVACY POLICY / COMMENT POLICY