My survival through this part of life has been a roller coaster ride, physically, mentally, and emotionally. Daily, during the first two years of my descent into chronic pain, I wished I would fall and die. I had little energy and found simple day-to-day living quite a strain.
From experience, I knew I needed professional mental health help. A friend of mine was a counselor, and she agreed to see me even though I could not afford to pay her much. She had lots of experience with people living with chronic pain. I remember spending many sessions crying and cursing, punctuated with screams from stabbing pains. But she knew how to get to people, find a level of acceptance and willingness, and teach them better-coping mechanisms. I saw her one-on-one for almost two years.
My counselor also ran a weekly men's group meeting and convinced me to join. I am shy and introverted, but I was willing to try just about anything and started attending the meetings. I also did that for about two years. It was here that I began to believe I was not alone in this nightmarish journey. I made good, meaningful friendships with some of the guys in the group. They taught me that it was all right to ask for help. This concept was unknown to me (and most men, it seems) because I learned early on in life not to complain, not talk about my feelings, and never be vulnerable. These guys also taught me to be a man of my word. If I said I would help someone, I had to show up and be available. Whenever I could help someone else, it helped me escape my misery. That is a powerful life lesson for me, whether the pain is physical, mental, or emotional.
When the group ended, my counselor asked if I would like to be a listening friend to a fellow who was slowly dying and was spending all his time alone. I said I would because I sensed it could help me somehow. I spent the next year meeting with him every Wednesday for two hours. He was very distrustful of why I was there, and it took him weeks to open up and talk about himself. I looked forward to seeing him every week as it would give me a break from thinking about myself and my situation. I showed up, as usual, one week just past the year anniversary of the day we had met, but he did not answer the door or the telephone. I went home and made a few phone calls to find out he had died the day before. I went to his funeral, and his sister approached me to ask if I was the guy who had been visiting her brother. She said he often told her how much he enjoyed my visits. I cried.
I lost most of my income when I left my full-time job as a nurse and went on disability. My counselor knew I faced financial hardship and told me about someone she knew who needed a housekeeper. I jumped at the chance to earn more money to pay my bills.
I worked two days a week. My pain worsened over the years, but I could manage the physical labor of cleaning, mostly. Still, there were many days I doubted I could complete the job. Sometimes, the pain was so bad I would clean for fifteen minutes, sit and massage my legs for five minutes, and then clean for another fifteen minutes. It was hellish and could take a long time to finish, but I had wonderful customers who treated me kindly. The mental toll of pushing through blinding pain and exhaustion could be as severe as physical pain. I survived like this for many years but eventually had to quit.
Chronic pain has affected my mobility. I am cautious driving because a sudden sharp pain in my legs could cause me to suddenly hit the accelerator or brake if I am not mindful. I avoid driving at night because the chronic pain has dulled my reaction times. The neuropathy has taken away feeling in my feet, so I must also be careful walking and working out on any exercise equipment for fear of falling. I fell several times at night when I got up to use the bathroom and sustained many cuts, bruises, and knocks on the head. I use a cane when I walk now.
I enjoy getting together with friends over dinner at a local restaurant. I used to join the weekly gatherings, but now I am lucky if I make it once a month. I have pain episodes that are more intense now and last longer, sometimes days. Going out for dinner is not an option then.
Over the years, I isolated myself more and more with my chronic pain, not leaving home. Still, I have found ways to compensate for it, often unknowingly, always fortuitously. When I went on disability and lost so much income-earning potential in my middle years, I had to downsize. I gave up owning my home to now renting a small studio apartment in an older complex. Moving into a rental community put me in close and direct contact with more people, whether the management office, the neighbors upstairs, or the people I meet at the laundry facilities or exercise room. I did not plan this, but it worked out well. Even a small connection with another person, face-to-face, is beneficial for my well-being.
I have always loved animals and have had dogs and cats most of my life. I have a small dog now that requires outside time for exercise and bodily functions. That requires me to walk (good for physical health), and I encounter other people along the way. I have made a few casual friends through these interactions. My dog is a good companion, and I have daily rituals that benefit him and me. I have been in many a dark place mentally and emotionally, and only my dog could pull me out.
I agonized over using morphine for my pain management. I delayed getting vital help that could have saved me much pain and suffering. I did not want to use morphine because I would become a drug addict. My pain hurt so much that I reconsidered at the behest of my sister. I put myself under a doctor's care, one I had developed a relationship with over the years, who understood my condition and would not over-prescribe medication. My doctor is very measured in his approach to drug therapy, and I appreciate his stewardship. Morphine is not a panacea; however, it does allow me some limited relief, particularly in the most intense situations.
My most brutal battle with my disease and chronic pain has been finding acceptance. Through every stage of this progressive illness, I found myself in places I would never choose to be but could not change: accepting I had a disease, I could no longer work in my profession, I had little income, the countless pain management therapies that did not work, the increasing isolation, the consequent depression, the discrimination, and chronic, debilitating pain.
In times of so many crises, I look inwards to find strength and guidance. I am not a religious man, but I do use a portion of the Serenity Prayer to find centeredness and direction:
God, grant me the serenity,
To accept the things I cannot change,
To change the things I can, and
The wisdom to know the difference.
I do not work in my profession any longer; however, I do have a full-time job of sorts. My job is to manage my disease and my pain. A career offers a personal sense of fulfillment and purpose in life. I would not say that managing my disease offers me personal fulfillment, but it gives me a purpose. That mental shift helped me to move away from despair.
Anyone who has experienced intense pain, whether chronic or temporal, will say that it brings you right into the present moment. Most of us do not live our lives in the present moment, and we are either too focused on the future or too absorbed in the past. We wake up one day, realize that we are much older, and wonder what happened.
Few things will ground you into the right here, the present moment, then pain. Then a moment seems like an eternity. I cannot focus on the future because I do not know what I can reasonably expect. The unique benefit (if you can call it that) of chronic pain is that I live life in the present moment. Sure, that does not help when I am experiencing pain, but in moments when I do not, the present moment is golden. I live life one day at a time.
And so, I came up with an approach, life's simple pleasures. My dog snuggles up to me, a little warm bundle of energy. The sound of the wind blowing through the trees is infinitely varied. A bright sunny, vividly blue sky day can make me smile. A call from a friend or family member who has never given up on me fills me with love. The intensity and depth in which I feel those simple pleasures are quite profound.
And then that led me to gratitude. Given what life has dealt me, that is an odd concept. It is real. I am thankful that I can experience life with depth, simplicity, and thankfulness. Would I trade all of this away for a pain-free existence? A resounding yes, would be my answer; however, I accept my life situation as it is, and there is no self-pity. Life would be genuinely bleak without acceptance. Acceptance has extended outwards to people, places, and things in my life, and I now experience moments of deep inner peace. I cannot remember having that before I got sick. When I am successful at all of this, life still seems worthwhile.
Everyone's journey through chronic, debilitating pain is individual. I empathize if you are experiencing this yourself. Do know that even in the darkest despair, there is still hope. You will find it in the unlikeliest places and will not find it if you do not search. To all of you, my fellow sufferers, I wish you peace.
Replace judgment, scorn, and discrimination with empathy, tolerance, and compassion, not just for someone with chronic pain but for all of humanity.
This story was originally published on October 27, 2022.
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