Chronic: The Pain We Don’t See, Chapter 22

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Chapter 22: Lighthouses
Thursday: January 7, 2021

Indeed, life is filled with the unexpected twists and turns that take us in directions we may never have planned on or saw coming. I’d like to say yesterday’s events at our nation’s capitol building were a shock, but they were not for me. It was a natural progression of failed leadership at many levels and the end result of what we get when we let a mad man act as he has. However, the attempts of Trump’s thugs to make a mockery of our institutions are not the emphasis of my life’s focus.

Yesterday, my wife received news from a doctor and nurse from hospice brought in to examine her mother was disturbing. They informed us the care she was receiving from the assisted living facility she lives at is pretty much non-existent and she is in need of being moved as soon as possible. In a nutshell, since the lockdown, she has gone without the care she deserves and needs which has resulted in her feeling abandoned and wanting to die. After a long conversation with the nurse, rather than moving my mother-in-law into a different facility, we plan to move her in with us despite our lack of space and five little dogs.

My wife is experiencing a wide range of emotions over all of this and I cannot imagine the pain and load she bears. What I can do is choose to support her in her time of need just as she has supported me during my struggles. There is an enormous amount of work to be done in a short time, but I know together we can get it done so her mom can enjoy a home life during what appears to be her final months.

I see my wife’s pain and when I compare what she is experiencing I can’t help but feel fortunate to suffer from an entirely different type. We all carry our own pain in life and it comes in almost as many forms as there are people. Like mine, her pain cannot be seen by the average person. Most who encounter her during her day will never know what she is going through. My wife learned early in life that there is pain and suffering that comes in multiple forms. Hers was a childhood I would never wish on anyone and despite it all, she has refused to give into it. She continues to amaze me in her strength and ability to move forward and thrive despite having to overcome obstacles that break most people.

Painting by Marilyn Moore

On the wall of my office, next to a large photo of the two of us on our wedding day, hangs a painting of a lighthouse. It was painted by my mother and is the only possession of hers I asked for. I left anything she and my father had to my siblings to divvy up. Most of it was just stuff and served no real purpose for me. I have enough of my own clutter to thin out and figured I did not need to take on more.

However, this painting means so much to me because it represents what my mother was to me. She was my beacon, a light I could turn to for much needed encouragement. She was a steady and consistent source of light and an inspiration that I will carry forever. We all hit dark times in life. Challenges pop up out of nowhere and make us question whether we can weather life’s storms. My mom saw me through many and always reminded me of my worth and value to the world. She understood me in ways I didn’t know existed.

My mom always encouraged me rather than push or drive me. Mostly, she inspired me with her relentless way of always moving forward in life and by her refusal to let it beat her. Like anyone raised in the depression, her childhood was not an easy one, but she hardly spoke of it or let it hold her back. How she had the strength to raise eight children, hold a household together, beat cancer, keep a high maintenance husband happy, and always find ways to make others feel appreciated still is beyond my comprehension. She led by actions and not words and in doing so, shined a light of hope for anyone who knew her. It has been nearly seven years since she passed away and I still miss her dearly.

We all need a lighthouse.

I only wish my mom lived long enough to meet Charlene. She would be amazed in her strength, resilience, and compassion. She would see in her someone who led by actions and not words and who refused to give into excuses.

To say Charlene is my lighthouse is an understatement. She keeps me centered and blows me away with her endless willingness to help others in need. Charlene listens at a level most do not and offers perspectives that bring hope and encouragement to anyone on the receiving end. I am the luckiest man alive.

We laugh a lot when we are with each other. When I hear her laugh, it comes from such a deep and genuine place. Her sense of humor is wonderfully sharp and her quips can come faster than anyone I have known.

Charlene also brings depth of thought to anything we face. I tend to be more reactionary and in her, I have someone who thinks things through thoroughly. She is not one to rush to judgement unless it comes to the welfare of another person. Then she is quick to come to their aide. She does so because she knows what it is like to suffer and she cannot allow herself to let another person suffer if there is something she can do to ease it. This is why I know we need to move her mother in with us. No one, not even a mother who more or less was never there for Charlene as a child, should have to suffer.

I have no idea how all of this will play out. There will be a huge change around here, but I know we can do this because we are a team. We found a way to blend our lives when I moved out here in 2016. Most of our challenges have been centered around my struggles with the return of my pain and depression coupled with a new struggle with fatigue. It is my turn to step up, just as my mother would for others and Charlene does every day.

Lighthouses. They bring us clarity and guide us in the right direction when we need it most. It is time I become one. Afterall, I would not have all I have if it were not for the lighthouses in my life.

Friday: January 8, 2021

One of the first benefits of receiving an epidural that has worked is normal sleep. Last night, I slept a full eight hours and woke up feeling refreshed. The stiffness I felt was nothing more than the normal stiffness anyone feels after a sound night of slumber. There is no need for me to wait and see when certain parts of the body will stop hurting and begin feeling like they should. The heaviness, sharp tearing sensations, and throbbing joints were nowhere to be found. The only question I have of my body today is wondering how it will feel after an eight hour shift at work.

People who have a loved one or close friend who suffers from an unseen chronic illness can grow tired of the “change” they see in that person. I know, I have seen plenty of people in my life respond, first in silence and then openly about not liking what they see. Some, out of concern, do more harm by telling the person they need to change. The remarks are only heard as an ultimatum by someone who is most likely unaware of just how tired they are from fighting their own body’s attack on itself.

Fatigue is an ugly beast. Like pain, it becomes a weight that slowly increases until it breaks us. It robs us of all our strength. Physically and mentally it silently eats at us and makes us a shadow of who we once were and who we want to be. Eight hours of rest becomes six which means a little more coffee to stay fresh. Six becomes four and we steal a nap or just nod off when we normally would be awake. Four becomes two and we just give up trying to sleep. We think we have adjusted to less sleep and are doing just fine but we aren’t. We have lost our patience with others, can’t concentrate, fail at tasks we normally succeed at, and become less reliable.

Photo by Tim Forkes

There becomes both a physical and emotional toll with long term fatigue which is why people who suffer from it understand why it is an effective technique used to break down prisoners to extract information.

Fatigue increases pain and pain increases fatigue. Combined over a long enough period of time, they trigger depression. The three feed on one another and as they do, their hold on a person becomes harder to break. Eventually, the person who suffers from all three loses friends. The sufferer retreats instead of seeking help because all too often they are unaware just how much help they need. By the time they realize the severity of their battle, it seems overwhelming and instead of help, they simply seek ways of escaping their hell.

Drug and alcohol addiction becomes common which results in adding more fuel to a burning fire. Jobs and marriages are lost. Homelessness, crime, and eventually suicide can result, all because someone suffers from a problem that hides inside our bodies.

People tend to be more reactionary than sympathetic to someone they encounter who is suffering from what can’t be seen because it ends up affecting how that person behaves. With me, it was anger and frustration shown in the form of outbursts, all because I was struggling to cope with a pain or pains that subtly took over who I was.

It is easy to be patient with someone who just broke their arm, had surgery to remove their appendix, or who visually comes across as frail and in need of help. This is what we call compassion. However, when someone suffers from depression, we often misdiagnosis their behavior as it being nothing more than someone acting like the asshole we see them to be. We avoid them at all cost, feel on edge when we have to be in their presence, and are relieved when we are no longer around them.

I know all this because this was how I normally felt in the presence of my father. There was never a time in my life I remember ever feeling comfortable around him and it had nothing to do with anything specific he did to me. It was what was happening inside him that resulted in his own short temper, pointed barbs, and aloofness that told me he just didn’t want to be around me or others. He was absent from my life because in part he struggled with his own and the pressures that came with it. However, he was also absent because for me, I was more comfortable not having to be around what I never knew what to expect.

Unfortunately, he succeeded in modeling to me how not to deal with my own circumstances. What I see so clearly in him today I was unaware of when I was busy being a husband, father, and teacher. It was easier for me to escape my battles by burying myself into my work, seeking peace by isolating myself from my family, and creating the impression I preferred being a loaner when in fact, I was struggling with what I did not understand.

Photo by Marilyn Moore (in the middle)

On the other hand, my mother remained a staunch supporter of me all my life. I was always comfortable around her. I understand now she saw things in me that I did not know I possessed at a time when I just felt there was nothing I could do to make my father see the best in me. The disappointment I felt from him far outweighed the belief in me my mom felt, that is, until I got better.

Once I found an antidepressant that cleared my mind from the fog it carried all my life, I saw my past with a clarity that never existed before. I was finally able to shed myself of the weight of negativity my relationship with my father brought me and fully grasp how fortunate I was to have had the mother I had. Freeing myself of that weight has allowed me to become more compassionate toward others. My patience is greater than ever and my self-talk is filled with far more positive things than negative. I only wish I freed myself from this weight earlier in life because if I have one regret it is knowing I repeated some of the behaviors of my father I did not like while being a father to my three children. My greatest hope is that this cycle ends with me.

So much of what people who suffer from what visibly can’t be seen by others is the end result of not knowing how to express what we feel. Because it can’t be seen, it is easily dismissed by people who might otherwise be considered compassionate because they come to the aid of others when they can see their pain. If it can’t be seen, it can’t be real. This is one reason why people with a mental illness never get help. It is too often dismissed as their fault and they just need to improve their behavior. Life is not that simple.

It is normal to want to retreat when you are in constant pain, whether it be physical or emotional. No one likes to have someone around them when they are home ill suffering from a flu bug. Why would someone in the midst of a depressive episode or internal pain that makes the slightest movement horrific want to be around others? One illness can be seen while the other drifts aimlessly like a boat at sea in need of a lighthouse.

Do you know what it is like to have doctors tell you there is nothing wrong with you because they couldn’t see any visible signs of a problem? I do, one of which was my father, and each time they said this, the anger, frustration, and humiliation just adds to our weight.

We all need lighthouses in our lives. They come in many forms and when their light greets us, we are filled with hope instead of despair. Lying on a rehab table, my torso wrapped in ice while I received electrical jolts of stimulation making me flop around like a freshly caught fish left in a boat, I thought about what the hell I was doing. I was at a low point in my rehabilitation from my bicycle accident and wondered why bother continuing it because I was just heading home to a house where I felt alone. At that moment, my physical therapist, Diane, walked over and gently patted me on my leg. Her compassion and understanding of what I was dealing with was the light I needed. Someone knew what I was feeling and it was a simple act of compassion that allowed me to continue.

It is people like Mrs. Baum, the first of my two second grade teachers, who saw in me a quiet boy, overwhelmed with school and simply needing nothing more than an option no one had presented. When she pulled me out of class on a rainy spring afternoon and asked me if I would prefer to repeat second grade the following year or move on to third grade, she changed my life forever. I never knew I had such an option and for the first time I remember, I arrived home from school that day and felt better about myself. I informed my mom I was going to repeat second grade, something I now know she was in on. A lighthouse gave me hope and made me look forward to what was ahead rather than continue to fear struggling to keep up with my peers.

There was Mr. Ferguson, my first soccer coach and the only person in my life I never minded calling me Jimmy. He recognized my talent and did not dismiss it as a kid just wasting his time running around in shorts while chasing after a ball. As a sixth grader, he opened my eyes to the possibilities that were in front of me, provided constant encouragement, and went so far as to write a letter to my father telling him what a wonderful person I was, something I did not feel from my dad.

There is my friend Don, the man who selected me over other candidates for my first teaching job. In him, I had more than just a mentor to help me become a better teacher, I had a man who showed me the importance of giving back to the world by helping the generation coming up while respecting the generation that came before me. Instead of living in debt to someone who has helped you, simply pay off that debt by helping others whenever possible.

Sailboat on the Pacific Ocean
(Tim Forkes)

Today, I am the luckiest man alive. I was that child who could have slipped through the cracks of life. Someone who struggled in school, lacked self-confidence, and struggled with a mental illness few understood, let alone would talk about at the time. I could have easily missed out on the life I have enjoyed if it were not for some key people coming along at points in life when I needed them most. You never know when an act you do goes onto to provide light for a person adrift.

In my life, I now have the most wonderful lighthouse imaginable in my wife. Like all the people before her who have provided me with a path forward during difficult times, she does so with her actions and not her words. The year ahead for us will be a challenging one as we put into motion the steps necessary to open our home to her aging and frail mother, a woman who was never there when Charlene needed her. It doesn’t matter because all Charlene knows is this is a person who is old, frail, and alone at a time when their life reaches a conclusion. Her mother is afraid, like a child uncertain of what lies ahead and depending on the goodwill of others to provide assurance all is alright. The past does not matter. What matters is what is in front of us and what we control.

We can turn our backs on her and live the life we enjoy and are comfortable with or we can help someone in need while serving as an example to others who might someday do the same for others. It’s our choice.

For me, it’s always easier, safer, and more enjoyable following a path well lit. That path is lit by the people before us and the good we learned from them. At a time when our nation is ripped apart by the darkness of hate spread by a leader who has no regard for others, we need more light in this world. As I write this, I can’t help but be reminded how today, I go to work at a motel where many residents struggle to get by in life and the motto of our company is, “We’ll leave a light on.” Always leave a light on. You never know who you will help.