Chronic: The Pain We Don’t See, Chapter 9

Top illustration by Tim Forkes

Chapter 9: Perhaps There is Hope, Thursday: July 2, 2020

An interesting thing happened to me last night. I enjoyed a full night of pain free sleep, one where I was able to sleep on either of my sides and not be awakened with sharp pains shooting through my left shoulder. It was a “normal” night of rest, one I have not enjoyed in years. While I managed to sleep well the night before, it was due more to exhaustion that came from the previous night of only three hours of slumber. Last night’s sleep was a direct result of the epidural procedure I was given earlier in the day.

I have received epidurals before with mixed results. It has been about two years since my last one and that one did not yield any improvement so I decided to forego them because I felt the financial cost was not paying off with the desired result. Yesterday’s was well worth it.

This time last year, I was three weeks into my post shoulder surgery recovery and still not feeling any comfort at night. In fact, that surgery seemed as if it was not necessary based on how my shoulder has failed to come around. I was told by the surgeon most pain behind the shoulder is neck related but the film he had on me showed a tear in the rotator cuff and a large spur on my shoulder blade that pinched into a major muscle. He suggested the surgery was needed so I agreed. Since the surgery, I have not enjoyed the range of motion or level of strength I hoped for and with my pain increasing to the point it was limiting my arm use, I chose to try another epidural.

While the initial result has been great, I also know there is no guarantee it will last for long. I am aware that if the pain and limitations return, they will most likely do so gradually and that I have a way of sucking up the pain until it is unbearable. I have to guard against this and be sure if the pain does return to nip it sooner rather than later. The best results I have received from epidurals came from when I had them for my thoracic spine pain. It took me three rounds of them, each a month apart, before I received any long term relief. That relief lasted almost a year and a half. It is that type of relief I need so my brain can retrain itself into thinking being without pain is normal.

Following my bicycle accident in 2007, I sucked up so much pain and just lived with it that my brain actually began to think the pain response was normal and was basically turned on 24/7. I could not escape it because my brain did not know any better. Now, I am seeking ways to break that pattern again and my hope is doing so will lead to me a more normal life, one where I can enjoy working again and being more available to my wife and the world in general.

I am also realizing with each passing day the effects of carrying childhood trauma has had on my life. In short, I never had a close relationship with my father. He invested himself more into some of my other seven siblings than he did in me. He saw things in them he did not either see or appreciate in me so he gravitated toward them so we never connected.

The other day, my therapist asked me to go through some old photos of my childhood and bring them in for my next session. As I was doing this and looking at each one, I came to the realization there were only two photos of just me with my father. The first was when I was maybe 5 years old and I was posing with him while he was working on a project in the backyard. It was clear by the picture I had come over at a time in which I was not in his way. I would have been too young to help on the project and I probably had spent my time playing in the backyard and entertaining myself while he worked.

The other photo was of us after I graduated from college. He has his arm around me and it is the type of photo a father would display in his office to show others. I remember clearly the mood of that day. It was uncomfortably hot and my dad showed up in a foul mood. A few months earlier, he booked a room for the busy weekend, but when plans changed and he and my mom decided to just drive up for the day instead of staying for the night, he was unable to cancel the reservation. The manager said it was such a popular weekend he could not afford to lose a booking that might go unfilled. My dad knew he was being played and the manager could fill the room without trouble, but since he had my dad’s money already, he was not going to part with it.

My dad arrived still angry over it. As soon as he showed up, he asked me if I stopped by the motel to pick up the room key the day before so the manager would not double book it. I showed him the key and he reminded me to return it the next day before checkout. Then he instructed me to have my friends and I use the rooms and hold a party in it, something I had no intention of doing. Finally, he ended the conversation by telling me to toss a handful of nails into the motel pool so they would leave rust stains on the bottom. In his mind, that manager should have to pay a price for screwing my dad out of a few bucks.

All I could think of was why the hell did he show up for my graduation? It did not matter to me if I walked and collected my diploma just so he and my mom could say they saw me graduate. He had no plans to stick around long because he did not like the heat and my dad would say he wanted to get home before it got too late. I could not get rid of him soon enough and get on with my day. There was no point in him being there because by that time in my life, I already realized my dad and I did not share a connection and it seemed he was doing this more for my mom’s sake. She’d want to enjoy the day and my achievement, but it would be my dad who would ruin it all over a room reservation.

Unfortunately, for me, this was typical of my father and the way he modeled for me how men behave. He could show me how to be angry and how to get back at those who screw you over, but he was unable to be genuine when it came to expressing any pride or love because, as I would come to realize much later in life, it was all that was modeled to him by his dad. That cycle would be passed onto me and I would carry it far too much as an adult and it would take me too many lost years before I realized this. By the time I did, I would have failed and ended up modeling the same sort of behavior too often to my own children.

It is impossible to go back and relive life. I am trying to sort through my past to see how emotional pain and physical pain are connected. I only hope to grow and improve and that my children see this change and set about making the corrections they feel the need to make long before I ever changed.

The road in life is in front of me. I am more aware of myself on many levels than ever before. I have gained a better understanding of how I arrived to where I am and it is now entirely up to me to make choices that are more than simply repeating what was modeled to me. It is time to take more ownership of my life. At the very least, I have to try so that whenever my time here on earth ends, the people who matter most to me will be able to say they wish they had more time to spend with me, something I never felt about my father since he passed away in 2008.

Saturday: July 4, 2020

One thing that has not changed yet is my wake up time. This morning, I was up just after 3 a.m. However, despite the early wake ups, I am sleeping better. I am not waking up with a nasty headache and neck pain. My shoulders are not sending me constant reminders not to move with sharp pains interrupting my sleep. I feel fresh and ready for the day despite the fact sunrise is still a few hours away.

Today, is our nation’s birthday and it is clear to me we have slid into a nation overcome by pain, fatigue, and depression. To say we are a nation divided seems like an understatement. It feels like the average citizen is a child who has been forced to choose sides in a bitter divorce between parents. Our parents are Republicans and Democrats and the custody battle grows uglier with each passing day.

Decency and common sense was tossed out long ago and have been replaced with anger, blame, hate, and revenge. Neither side feels wrong for how they act toward the other because they feel they are the ones who have been wronged. To compromise is to admit weakness and neither side is about to do so which just leads to digging in further.

We are being led by people whose opponents believe are leading us to ruin and must be stopped at all cost. I was just a few months shy of ten years old when RFK and MLK were murdered. While I remember the events, I was too young to comprehend all the divide behind them. Today, I can’t imagine that divide was worse than what we are seeing play out every day, every hour, and even every minute on social media.

Therapists often tell family members of a loved one whose life is spiraling out of control, that they must wait for that person to hit rock bottom before picking them up. Hitting rock bottom forces the individual to make a simple choice between living or dying. If he chooses death, he will find a way to make it happen. However, if he chooses life, he will need the help of others, many of whom have been wronged by his actions, to forgive, love, and help him to recover. What concerns me most about our country is we have yet to hit rock bottom. We have yet to narrow our choices to the two simple ones an addict may face. We are still in search of more enablers to drag us further into our living hell before life and our choices catch up to us.

We have allowed ourselves to be consumed by the big picture of politics at the national level, so much so, we have forgotten to focus on what we have real control over. Trump, Biden, Pelosi, McConnel, and all the other big names are, for the most part, insignificant to each of us on a day to day basis. They are manipulating us into their war, not ours, and preventing us from controlling our lives.

On my cul-de-sac, there are sixteen households. I have neighbors who are gay, black, Asian, Hispanic, young, old, religious, employed, unemployed, conservative, liberal, and independent. We live in peace on our street primarily because we respect each other’s right to live their life as they choose. Why is it we can’t do this on a larger scale?

There will be an election in four months to see who serves as our president. That race will suck up our lives far more than it should because at the end of the day, who sits on my city council, school board, and parks district will affect my life more than who sits in the Oval Office. My vote on local matters carries more weight than it does on a national level.

I remind myself of all this because for too much of my life, I have focused more on the stuff I have little influence over and allowed it to get the better of me. It has caused me much pain, depression, and fatigue all because I have spent too much of my time reacting to the larger stuff rather than focusing on what I can control.

Today, I woke without any pain. There was no fog in my head. I am energized instead of feeling like going back to bed. It is a nice feeling to know I do not have to hurry to get what I want done before I am slammed by the effects of my struggles. I can choose to go about my day how I want rather than wait for what may or may not happen.

On our nation’s birthday, I am able to enjoy my own personal freedom in a way I have not always been able to do. Am I cured of this triangular war with depression, chronic pain, and fatigue? No. However, I am hopeful. I can see how nice life is when not consumed by the worst it can throw at me. It is this type of hope each of us needs in order to begin the kind of healing we need as a country.

Rock bottom is not some place anyone should want to experience. Sometimes we need to ask ourselves is all this divide really worth the collective grief, pain, and suffering it is inflicting? Is it worth all the grief, pain, and suffering it is inflicting on us individually?

Today, I am hopeful about myself. It might seem selfish, but it is all I have control over. I can do what I can to help others in my life, but at the end of the day, my life is my responsibility. I am not going to blame others for how it has turned out. I am not going to blame others for failing to fix my problems. I am simply going to do my best to control what I can and let go of the rest. Hope is a wonderful and powerful feeling. It is what we lose when we hit rock bottom. May we all find ways to remain hopeful.

Thursday: July 9, 2020

It has been eight days since my procedure and I am still enjoying pain free days and nights. This is all new to me and I am still trying to get used to it. My body has been a house of pain for so many years that it has become normal for me to experience it.

Following the accident in 2007, I spent five years in physical therapy. My physical therapist did an amazing job getting my body back to working order, but the spine-related pain was pretty much constant from the moment I woke until I fell asleep. Each day, the spinal pain would get progressively worse as the hours passed. The back of my head would throb and the burning in my thoracic spine wouldn’t let up while I went about my normal work days. The problem I had was trying to stand upright and going about simple tasks was far more painful than engaging my muscles in larger tasks.

Each day’s workout brought relief because much of what I did helped to open up my spine. Weight and core work helped keep me strong and long rides on my bike were a huge relief because the position of leaning forward and holding onto the handlebars brought relief to my spine. However, teaching was miserable, especially inside a classroom. I had to lean forward onto my lectern to simulate my bike riding position. Still, my head would throb, I was sensitive to noise, and there was a great deal of numbness down my right arm and into my hand. I was unable to hold a pencil well enough to write and working at a computer was so painful my doctor had to write me a medical note instructing the school I worked at to excuse me from that task.

My primary doctor of many years never uttered the words, “pain management specialist,” so I had no idea this was an option. I figured I was destined to have to live with the pain in my spine which was sucking my joy of life and exacerbating my depression. This made me miserable to be around at home and added a lot of stress for my loved ones.

By 2013, I was spiraling out of control. I hated life. The only joy I found was from working out because that was the only time I was not in pain. I was no longer available as a husband or a father. Pain and depression were choking the life out of me and if it succeeded, I doubt I would have been missed.

In December of 2013, my new doctor recommended a pain management specialist and I began seeing him about the same time I began getting relief from my depression. However, my first wife and I separated right after Christmas of that year. 2014 was going to be filled with a lot of new chapters.

I was placed on medical leave while my body adjusted to some new medications. I was living in an apartment above a pest control business and had nothing but free time. I used it to undergo a series of injections the length of my spine and after the third set, my spinal pain was knocked out. The new medication was also knocking out my headaches. As it turned out, I was done for the remainder of the school year. In fact, I was finished with teaching since I was already intending to retire in June.

Life was no longer constant pain. I spent three months separated from my wife and during that time I read a lot and I also began seeing my life from a much clearer perspective. I finally understood how it had unfolded and I knew what I wanted going forward.

I figured I was heading for a divorce since my wife said that was where she was leaning when we first separated. However, after she came to break the news to me after two months, she said she wanted to hold off because she liked what she saw in me. When we agreed to get back together, I was very clear what my needs were as well as the improvements I needed to make for a happy marriage. Our problems, I realized, went beyond just my issues and I finally had the clarity to see this.

My pain seemed a thing of the past, but unfortunately, the marriage did not survive. Just as it takes two to make one work, it takes both to make it fail. A little over two years after we reconciled, we agreed the marriage was over and I was fine with it. It was time and I was no longer going to spend my life hoping for something that was not meant to be.

I pretty much did everything experts tell you not to do when going through a divorce even though it was not my plan. I moved into a home I purchased and was working a part time job while taking on the raising of two puppies. I had no plans to date and when a colleague of mine said she wanted to help set me up with some people, I told her I was not interested.

However, my future wife was already in my life. In fact, she had been for decades even though I was not aware of it. As we became involved with each other, it would cause some issues with our families. Charlene’s ex was the brother of my soon to be ex. She and I were at one time brother/sister in-laws. However, by the time my marriage ended, Charlene had already been divorced from my first wife’s brother for over 20 years. She and I had become Facebook friends through her daughter, my niece.

Long story short, we found out we shared more than the family we married into in common. As we communicated more, it was evident we had a lot in common. Since it was summer, we talked for hours on end on our phones because we lived two and a half hours apart. By late summer, I was listing my home I just purchased to move from the Inland Empire out to Ventura County to be with her. My divorce became final at the start of 2017 and Charlene and I got married in May of that year.

My three kids and Charlene’s lone child all had a lot to process. I was going to marry the mother of one of the cousins of my three kids. Was I my niece’s step dad or still her uncle? When Charlene’s daughter informed me she had a new title for me, I laughed. I was now her Duncle; part dad and part uncle.

Shortly after moving in with Charlene, I became laid up by two herniated disks in my lower back. Unfortunately, I was not able to do anything about them because my health coverage was still under my ex-wife’s and the plan would not approve of out of network doctors even though I had moved away. I had to wait to begin a new plan in January and by the time I had my surgery, it would be late February.

The surgery was a huge success and two months after it, I was cleared for full activity. Charlene and I married and I soon began working part time at our local Parks district. Then came the headache.

It began as a minor pain, but instead of going away after a night of rest, it hung around for months. It was in the back of my head where my headaches struck following my bike accident. I tried to increase my dose of Gabapentin, but doing so left me too drowsy so I cut back. By September, I began noticing some chronic pain that was annoying, but not debilitating. The pain ran down both arms and the nerve that passed through each elbow became increasingly painful. I also began noticing a return of my spinal pain I thought was knocked out. I began researching for doctors and was led to a pain specialist.

When I met the pain specialist the first time, I was in a good deal of discomfort. He gave me some trigger point injections with the hope it would calm down my back. Then he asked to see the palms of my hands at which time he told me I did not have any fat pads on either one. He was concerned because he said this usually means there is some sort of permanent damage because the lack of fat pads was a sign of atrophy.

I was sent to a number of specialists, received some epidurals, went through nerve conduction testing, and through it all, noticed no relief. In fact, I was fearing I needed neck surgery since an MRI on my neck showed bilateral herniations on each of the seven cervical vertebrae as well as one other that pinched down on my spinal cord.

I decided to meet with the surgeon who worked wonders on my lower back to get his thoughts since the pain specialists and the doctors he was sending me to were giving me conflicting information. This doctor laid it out for me. He said there was no way to know where to begin operating unless he completely rebuilt my neck. However, he warned me not to go this route because I still had a good range of motion. He also recommended a different pain specialist which is who I see now.

Still, my pain was only getting worse and all that seemed to be giving me relief was the use of a narcotic and muscle relaxant. My strength continued to decline and my left arm was pretty much useless because I had such terrific pain in my shoulder. It was now October of 2018 and I was in constant pain that got worse with each passing week. I was working three part time jobs and arriving home in pain and totally exhausted. My head throbbed, my shoulder made sleep damn near impossible, and my arms felt the stinging pain from nerve problems.

I saw an orthopedist who injected my shoulder and prescribed physical therapy, neither of which worked. An MRI showed a torn rotator cuff and large bone spur that impinged a muscle, both of which needed surgery to correct. In June of 2019, I had shoulder surgery and followed it up with physical therapy. At first, I thought it was a success, but sleep was still impossible with the pain from the shoulder. On top of this, by November, I was in so much discomfort from my head, neck, and arms, I left my jobs.

Too often, I was exhausted before leaving the house at 11 in the morning and arriving home and heading straight to the medicine cabinet. More trips to the pain clinic failed to yield the results I wanted and by the start of 2020, I was aware that along with my pain and exhaustion, my depression was picking up steam.

The last thing I wanted was for all of this to destroy my marriage to Charlene and take over my life. However, this three headed monster has a way of slowly entering into lives and by the time we realize we can no longer handle it, we are in over our heads.

Today, however, I am not in a bad way and have not been now for the last eight days. I know the epidural will wear off in time, but I am hopeful between it and keeping up on my pain instead of sucking it up, I can have more good days than bad. Eight days can lead to eight weeks, which can lead to eight months and perhaps eight years.

As I said in the beginning of today’s post, this lack of pain is new to me. However, I can get used to this.

Saturday: July 11, 2020

With both my depression and pain in remission, I have turned more of my attention to looking for part time work. I currently have two applications submitted for local jobs that will not work me to death. My desire to work stems from a variety of reasons.

First, I need to get out of the house more. I have been cooped up here since last November with the bulk of my ventures out centered around medical appointments or for grocery shopping. I have not enjoyed much in the way of social interaction which is one of the benefits of working.

The previous part time jobs I left allowed me to come into contact with a wide range of people. Depending on which of the jobs I worked, they allowed me to interact with people as young as five or six and as old as 100. This variety of ages allowed me to appreciate the many stages of life I have lived or have to look forward to.

It was also nice to work different jobs. Each presented its own set of challenges in terms of the type of work required along with the type of people I worked with. By the time I left each job, I had a much better understanding of what type of work I excelled at, which kind I struggled with, and which kind I preferred. Moving forward, I feel I know better what type of work will suit me best. I no longer need a job I take home with me. At the same time, I don’t need one that has me stuck behind a desk.

I am happy with what is simple and helpful. I do not need to be a ladder climber and I am not interested in being Superman. If the job keeps me busy and helps others, then I am happy.

While I would love to get paid a lot of money, I know the less responsibility that comes from some jobs, the less they pay. One of the jobs I left paid almost $40.00 an hour and was just four hours a week. The money was too good to pass on, but it involved teaching, something I retired from six years ago. I made the best of it, but was not excited by the work mainly because it was not new to me. The other two jobs paid much less but offered me new ways to help others and grow in the process.

I am not going to jump at just any job. At the same time, I won’t say no to another well-paying one that is four hours a week because I would love to earn back some of the money I have spent on medical bills. Mostly, I need to make sure I do not spread myself thin because if or when my pain returns along with the fatigue that comes with it, I want to hopefully keep working. Trying to balance three different jobs and the travel between them was too much. If it means working one lower paying job for more hours a week, I am happy with this. At the same time, if it is four hours a week at $40.00 an hour, I can find other ways to fill my free time rather than balancing two other jobs.

Today, I woke up still feeling the benefits from my epidurals. I am noticing some slight sensations in my elbows so I think the effects may be starting to decline. Still, I am not worried. I know I have the energy in me to do the gym work I planned out as well as the yard work that needs doing. I also know not to force things. If I begin to feel my pain returning, I have the luxury of knowing I can always do it another day.

Hopefully, I have finally realized not to suck up pain and keep plowing along. This is a habit I have had that goes back many decades. Not only have I made a bad habit of swallowing my emotional pain, I have learned to do the same with my physical pain. While this may have helped me as an athlete, it has hurt me more than it has helped as a person. It’s one thing to swallow the discomfort of a bone chip in my ankle for two years because I did not want to stop playing soccer as a teen, it’s another to do this when the discomfort becomes so much I need increasing amounts of drugs that are highly addictive.

I will meet with my pain specialists in a couple of weeks to discuss with him what is next? Until then, I will enjoy what I can and remind myself I have plenty of options to turn to should my pain flare back up.

Tuesday: July 14, 2020

Today marks the passage of time. I went to bed last night at the age of 61 and woke up at the age of 62. My birthday has never been a big deal to me and maybe other than when I was a little kid, I never care much for celebrating it. By the time I was ten and I was playing little league baseball, I always hoped I had a ballgame on the evening of my birthday. This meant having to scarf down a sandwich and heading off to my game before everyone sat for dinner. My mom might get my siblings together beforehand so I could open my gifts, but as far as making a big deal of it, I was able to avoid this.

Charlene asked me if I wanted to celebrate my birthday on the weekend before or after my birthday and I replied neither. I really don’t want to. By tomorrow, my birthday will be in the past and it will be the one thing I manage not to look back on.

I understand a lot of people enjoy the attention received when it is their birthday. I don’t. It makes me terribly uncomfortable and I would prefer to go without it. Since Charlene has to work today, it will be just another day which is how I like it.

Later today, I will meet with my therapist. She has asked me to bring in photos of my childhood so I dug out a photo album my mother made for me. She wants to begin digging up more of my past which I know I need to work through, however, I am not looking forward to it. If it helps me in the long run, then great, but I know stirring up a bunch of dormant shit will mess with me more than I want. Like a lot of things that need fixing, sometimes you have to hurt more before feeling better.

On the pain front, I am enjoying how I feel, but I am also noting a slow return of my pain. Sunday, my elbows and lower arms began to hurt quite a bit and my body ached all over. I ended up knocking out the pain with a single dose of medication, but it was the first time I experienced pain since my epidural. Yesterday, I felt great all day. However, this morning, I woke up and could feel the back of my shoulder. It also woke me up earlier in the night. The pain was not as bad as before the procedure, but it was enough to serve as a reminder I am not out of the woods.

At 62, I do not kid myself and claim to feel better than ever. In some ways, I do. The TMS has helped me quite a bit and my head feels clearer, and my thoughts are not depressing. I am hopeful my treatments for depression and pain will actually pay off and allow me to enjoy life far more than I have been able to. Still, I am not about to claim I have never felt better.

I know enough about myself and physical performance not to think for one second that I have never been better than I am today. As it is, I see myself as just different from when I was more youthful. There are things I no longer can do that I used to do without thought. At the same time, while there has been an obvious physical drop off to my abilities, mentally, I have grown and I am able to see things that never would have registered in my mind as a twenty year old.

My life is nothing like I thought it would be like when I was younger. Nothing ever goes exactly as planned and the road I have traveled has not been as smooth and open as I thought it was going to be after I left college life. Obstacles, traffic jams, detours, and accidents have all played a role in leading me to where I am at. While my location in life is not what I ever expected, I am thankful and happy to be where I am.

Maybe because I grew up feeling alone or wanting to be by myself a lot in a family of ten, I learned to reflect more than others. Perhaps, because I have a problem with getting too close to people I feel they will either hurt me or leave me, I prefer to keep to myself more than most. Whatever the reasons, what I do know is I am not desiring of any celebration of my life even though I am happy to be where I am and especially happy to have found someone who loves me like Charlene does.

There is no telling where the road of life will take me over the next year. Maybe next July, I will feel like celebrating. Who knows? What I do know is for me, while today is my birthday, it is just another day. I have things I want to do, things I have to do, and things I need to plan for down the road. In other words, it is just like any other day. My needs are met, my wants are few, and most of all, my life is good. I enjoy what so many in this world can only dream of and I no longer envy others. This, in my opinion, is the greatest gift of all and it is something I get to open up and appreciate most every day of my life. What more could I want?