Chronic: The Pain We Don’t See, Chapter 23

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Top illustration by Tim Forkes

Chapter 23: The Road Ahead
Thursday: January 14, 2021

When I think of the average life expectancy of someone and how we have put so much effort into finding ways to extend it, I can’t help but think doctors and scientists have failed to see the obvious. How long we live is not as important as how well we live. New surgical approaches and drug cocktails have helped improve the survival rates of illnesses like cancer, heart disease, and diabetes. However, for many, the lives they are left with are painful reminders of what they no longer have and can do while bringing uncertainty about what lies ahead.

Assisted living homes are filled with too many elderly people just waiting to die. They have outlived their friends and all too often feel as if they are nothing more than a burden to their children. While they may have access to activities and peers, too many feel they are in a holding tank waiting for the day the Grim Reaper comes calling.

New drugs are constantly being created to combat one problem after another. We have over prescribed antibiotics to the points where new strains of germs are resistant to what is available. Opioid prescriptions were handed out to adults like candy to a kid on Halloween resulting in overdoses and deaths. Teens raid mom and dad’s medicine cabinet and attend parties where they randomly swap meds with others as a way to escape the world they live in. Why buy street drugs when there are plenty of legal ones to get your hands on?

Sufferers of depression or bipolar disorder will tell you they hate the medication they need to take because it makes them stop feeling emotions all together. Unfortunately, these drugs are far less expensive than talk therapy and certainly much less than TMS therapy, two drug free alternatives.

I have read more than once the average American spends eighty percent of the money they spend on their healthcare over the final two years of life. The end result of all of this is we live longer, but we fail to thrive.

After my bicycle accident in 2007, I was in my doctor’s office complaining about a list of problems I suffered from. Hearing difficulty and ringing in my ears, horrible occipital headaches, spine pain and arm numbness. His response was, “Be glad you are alive.”

The idea that I was ungrateful for all my aches and pains after surviving what nearly killed me was just his way of not wanting to be bothered with finding solutions to help me thrive. I should accept the status quo and be happy. Instead, I eventually found a new primary doctor, one who was willing to take the time to help me enjoy a higher quality of life.

If I am offered a choice between ten free meals at a restaurant that serves terrible food and one free meal at my favorite establishment, I will select the single meal. For me, quality beats quantity. It is the same with life. What is the point of living into our 90’s or longer if we are not able to enjoy a life that brings us joy? This does not mean as a 90 year old I should be able to go out and do the things I enjoyed at a much younger age. It also does not mean I should be happy to just be alive despite having constant pain or being unable to care for my basic needs.

Life expectancy has improved greatly, but in too many cases, we have traded it in by giving up our quality of life that makes looking forward to the next day a joy.

When you struggle in your twenties, thirties, and forties to get through your days because you suffer from something others can’t see, understand, or relate to, it is no different than being old and waiting for the Grim Reaper. It doesn’t matter if doctors can extend our time on this planet if inside we feel that extra time is not worth it.

Having been convinced I was minutes away from dying only to be saved changed my perspective about death. So have the years of physical therapy, talk therapy, and endless treatments. I am no longer as afraid of dying as I am of living beyond my value. I have signed a DNR form because if I end up in a hospital and in a life or death situation, I feel it is okay for nature to take its course, especially if what I am going to be left with is more pain and less joy. I realize now there are worse things than dying and leaving behind this world. In some cases, one of those things is continuing to live while being unable to thrive.

So what does the road ahead have in store for me? I have been in a place where when asked this question, my initial response was, “Who cares?” This is what you get with depression. This is what comes when you are devoid of emotion. This is what comes from living a life inside a bubble of fog and are unable to see anything with clarity.

That depression may or may not be coupled with other challenges. After my accident, constant pain was my reward. Having to fake your way through life and hoping no one notices you are a miserable SOB is not thriving. Being thankful you made it until noon before your day was destroyed by horrific pain is also not thriving. Looking into the eyes of the people you love and know best and seeing the apprehension in them because they have no idea if you are having a good day or suffering again is certainly not thriving.

After my accident, I am the first to admit I was not someone who was easy to be around. Hell, before it, thanks largely to my depression, I was not always a joy. However, life is not as easy as just choosing to be happy to be alive. We all need purpose in this world.

Wanting to be happy and choosing to be happy are two different things. I am fortunate that while I was not thriving, I still made the choice to want to thrive. This is what led me to finding a new primary doctor who in turn helped me find a pain specialist and someone to talk to. It was the first step toward really getting better.

But this is all in the past and there is a road in front of me that I have no idea where it will take me. You can bet I intend to find out. I also intend to continue my constant fight to find ways to help me enjoy a quality of life I am thankful for, even on my most miserable and painful days. This means I still have work to do.

For starters, my hearing. Even with my hearing aids in, I am not picking up what people say to me. Part of this is due to everyone wearing masks these days, keeping me from reading lips. However, it is more than that, so I will be tackling my hearing loss and that damn cat bell sound in my left ear.

I will remain diligent in my self-monitoring, whether it is with my pain, fatigue, or depression, because I know it is easier to remain ahead of them than it is to slip up and let them get out of hand before treating them.

As long as I am able to enjoy working and feel it is not adding to my problems, I want to continue contributing to the work world. For me, it is about balance. I need to be kept busy to keep my mind off of my flare ups while not over doing it to the point work becomes counterproductive.

The road ahead also includes being mindful of my limitations. Like most men my age, I am reluctant to accept I cannot do what I once did or even attempt to. It means appreciating the things I can still do, even if it means doing them a little less often or with a little less fervor. My neck will always limit what I can do in the gym, but it doesn’t mean I still cannot enjoy a good workout. I can continue to grow in my constant quest to find ways to remain in the best shape I can maintain, even if it is not the same shape I was once in.

I also need to find new ways to grow as a person and find things that replace what I have given up. There are endless ways for me to tap into my creative side instead of choosing to tap out of life. Along with my writing, I am at a place in life that allows me to try other forms of self-expression and find new avenues to get excited about.

The road to acceptance is not a road to giving up. I see now for much of my struggle with chronic pain, depression, and fatigue, I was traveling down a road of resistance. Today, I have an opportunity to help others who are traveling a road I was once stuck on. Perhaps I end up helping them find a new path that leads them to a life where they thrive more and suffer less. Knowing where I have been makes not knowing where I am headed less daunting.

It is no longer the end of my world knowing I suffer from chronic conditions most do not see or understand. I am not as concerned knowing I will be dealing with these conditions for all of my remaining days. Others deal with a life of financial challenges, family tragedies, or illnesses and injuries so horrific, no one would wish them on their worst enemy. The world is also filled with people who suffer from the same conditions I have. I am not unique in this regard and can be of help to people who are near their personal breaking point. There is no reason I cannot be the one who offers them that much needed ray of light during their darkest hour.

What I do know is I am not alone in this world and no matter how difficult life gets, we need to hold onto this realization. While it seems this past year has been nothing but negative with a pandemic raging through every nation, a country at odds with itself and ready to go up in flames, as well as all the usual challenges that pop up in life, it has, for me, been a wonderful year. It has been a year of growth and improvement despite all that has gone on.

In a few weeks, I will be fully tapered off my antidepressant, something I never imagined possible. I have an opportunity to experience life knowing I have not been medically numbed from emotion. Whether it remains that way or not is for me to find out, but I know either way, I am looking forward to the result rather than fearing it.

I can begin pursuing treatments that hopefully will make me less reliant on an opioid to treat my flare ups. Whether this includes things like acupuncture, ketamine therapy, or other less traditional methods remains to be seen. Perhaps it means a regular schedule of epidurals. It may even come down to being ready to undergo major neck surgery. What I do know is I will keep up the fight.

The most comforting thing about the road ahead for me is knowing I travel it with the most amazing wife a man can have. As long as I have Charlene in my life, I know I am never alone. Together, we will continue to help each other through the different set of challenges we face. We will thrive together more than we could ever thrive apart.

In a few months, I will become a grandfather for the first time, something I was not sure was going to happen any time soon. It means taking on a new role in the life of another person while watching my daughter adapt to what will be a new role for her. It’s a chance to see someone who was never given much chance at birth to thrive and continue to prove the medical world wrong and serve as an inspiration to me as I work to overcome what many others give into.

The old me could sit down and make a list of all the things I have lost in life or had to give up and make myself fall into a funk that would make me question the point of life. Instead, I am now able to look at that list and marvel at what I have done while still looking forward to all that awaits me. It is an entirely new way of thinking for me and all because of this past year, I made the decision to take control of my life. This led me to a therapist who pointed me in the direction of a psychiatrist that offered TMS. The result of his treatment has cleared my head and naturally improved my thought process which now makes it easier for me to handle my other battles.

Life is not random nearly as much as it is a series of never ending chain reactions. These reactions are the end result of the choices we make and the choices made by others and play out in a drama we call life. Rather than numbing ourselves from what we do not enjoy, or escaping from the world into one we create through technology, I highly recommend taking the road less predictable. It’s as challenging to master as any video game and a whole lot more rewarding to look back on. It offers no guarantees, but if you allow it, it offers us hope, and that, more than anything else, is what we all need to thrive.