They say you should love your body, but mine keeps returning my love with hate. I have been good to my body: a lifetime of exercise, healthy food, no addictive habits—I’ve never smoked a cigarette in my life. But she shows no appreciation by giving me constant pain. Chronic pain is menacing and omnipresent. No one else can see it; others are unsure they believe your complaints. You look the same, but you don’t do the same things you used to do, the activities you used to enjoy. You seem lazy and uninvolved in social events. Exercise is difficult, and you gain weight.
I object to “pain management.” I don’t want to manage this new condition that occurred without apparent reason; I want it fixed! This impulse almost two years ago was correct—medications and injections are meant to cover up the problem, not cure it. They are meant to be repeated for an undetermined amount of time. They create a three-ringed circus of prescriptions, appointments, injections…rinse and repeat. No one looks at the problem long enough to determine how it might improve or heal.
One day out of desperation I messaged the neurologist, “I am housebound and desperate. I am in so much pain today. The injections brought no relief. Can you do anything to help me?” The reply (the next day) was from someone (not the doctor) saying I should make an appointment with a “provider.” Did this person read the overwrought message? Did the doctor even see it? It’s disturbing to know you really cannot reach your doctor when needed. At least not one you think understands your issue. I waited two months to see her the last time. I pondered going to the ER that day, but I am sure no one there would have heard of my condition. What would they do that hasn’t been done? The ER is unlike the show “ER,” where all the beautiful stars rush simultaneously to the person in crisis. It’s hours of waiting, seeing a doctor, and then more hours of waiting for tests, test results, or yet another doctor. When I was twelve years old, I was at a party with many other girls and no adults. I began to get extreme stomach cramps and struggled to breathe. I had no idea what was happening to me. One girl finally called my parents, and my dad picked me up. He asked me questions, but I didn’t have enough breath to answer him. At home, I lay on my bed, frightened and weak. I looked up to see the family doctor at my bedside. He diagnosed me with a severe asthma attack. By then, I had broken out in hives. He opened his black bag and gave me an injection, and I quickly recovered. That night, I learned I was violently allergic to the wool sweater I had worn. What would my parents have done otherwise? The alternative is frightening. Flash forward to the present when I cannot even call a doctor’s office directly or send a message online and reach my physician, let alone have one show up at my front door.
That same family doctor would be the one to show up every day if someone was hospitalized. He directed the care plan for all of us. Recently, my husband was in the hospital for a few days, and I cannot even count how many different physicians he saw. Each one had a different purpose. They all asked the same questions because they did not know him. I comfort myself by being grateful for medical care, but am I? Not so much since I’ve realized how it often drags out and intensifies one’s pain and discomfort. Patients’ suffering is prolonged because each doctor and specialist has a small and finite toolbox of treatments. They are well-intentioned but hope you fit into their toolbox instead of the treatment fitting your needs. When the box is empty, it’s time to move on to the next specialist. I have seen the bewilderment on physician’s faces when I tell them one of their tools was ineffective. Several therapists (PT, chiropractors, acupuncturists) have dismissed me with: “Well, I guess this won’t work for you. Goodbye and good luck.” The massive medical system in my area has epically failed me.
“Why is this so difficult?” I finally asked one doctor. “We know the nerve that is causing the pain. We know the muscles that are pressing on it. Why is it so hard to fix?” She looked at me incredulously.
A Spiritual Crisis
This has been a spiritual crisis for me as well. The Biblical St. Paul had an unknown “thorn in the flesh.” I believe it was physical pain. It prevents you from being a faithful servant to everyone but yourself. I used to do more volunteering, which was a goal of mine in retirement because getting out of your head is the best road to happiness. But pain is selfish. All I think about is myself. I spend inordinate amounts of time on the internet searching for answers. Well-meaning friends see my discomfort and try to give me helpful suggestions. None of this is fair to my patient, loving husband. I try not to take up all of our time together talking about me—but now, with a less active lifestyle I have little else to talk about, so I need to shut up altogether.
“So to keep me from being conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep from becoming conceited. Three times, I pleaded with the Lord that it should leave me. But he said to me, “My grace is sufficient for you… For when I am weak, then I am strong.” 2 Corinthians 12
If humility is the spiritual goal here, I think I’ve covered that. I find every incident of being poked, prodded, and treated like a guinea pig demeaning. I canceled appointments because I couldn’t stand succumbing to a physician’s small toolbox again. One chiropractor had me lie face-down and, without any warning or permission, began to shoot very painful needles into my back. I got up, crying, and told him he should have asked me first. He said nothing. Was I just a body to do with whatever he wanted? I would have never submitted to more needles. I never felt so insignificant in a provider’s care.
I have prayed. I have pled with God to make it stop much more than three times. To give me my life back. To guide me to the right person to help me. Is this what he wants for me—-to be useless and sedentary when there is so much left to do in this life? Although I am a lifelong Christian, I do not pray for miracles. This may sound faithless, but my faith is grounded in a free will, random and often unexplainable world. If there are miracles, why are they only for a few? Being realistic does not mean I do not have faith.
Even if you do not subscribe to a particular religion, much can be learned from its teachings. Christians believe that Jesus’ suffering was preordained. He knew what was coming, and he accepted the sacrifice. But even with that example, and even with a Book of Psalms chock full of suffering and pleas for help from God, we still yearn for a life without sacrifice, without suffering. I argue with God daily.
Years ago, I had pain in the left side of my lower back. It took seven years for someone to tell me that my sacroiliac was twisted. By then, it did not respond to being put back in place. Seven years. The osteopath who finally diagnosed it correctly told me that doctors aren’t trained to understand the body’s workings. That sounds unbelievable, but it’s true. During those seven years, I endured two nerve ablations and several rounds of painful injections, even though they had nothing to do with the real problem.
I struggled with severe shoulder pain for two years. Of course, I was sent to PT and had meds and injections. In the end, an MRI showed that the muscle of the rotator cuff was torn completely off of the bone. Nothing but surgery would have fixed it. However, I endured two years of pain before the root cause was determined.
Strangely, my father had the same condition I now have. It’s called Occipital Neuralgia. We wondered why he would panic and show addictive behavior when his painkiller ran low. He would say, “No one understands what this feels like. It’s like a lightning bolt shooting up the back of your head.” He was dependent on pain meds, but he was 90 and in the last years of his life. Why should he suffer? Of course, opioids did not resolve the problem.
Medications are costly, not just monetarily, but in time. It is a time when you are still suffering and not moving toward a solution. In the past year, I have been prescribed seven different medications—all came with a torrent of side effects. All of them made me even more miserable. The dizziness, drowsiness, and double vision left me unable to function. Physicians want you to “give it a chance” and take it for a few weeks. None of the meds were even remotely effective. One, an antidepressant, began to make me depressed when I hadn’t been before. Independently, I took a DNA test for the effectiveness of pharmaceuticals. My results showed a dangerous level of poor metabolization with that particular medication. It robbed me of days of my life, as did so many of the other meds.
I agonize over every lost day. I protect my loved ones by putting on a happy face. I save my tears for my pillow. I am a poet. I have three poetry books and numerous poems published. But now, all of my poems are about pain; nothing else exists.
God, hold this breathing body
you resurrected with the morning star,
settle into my shoulder, unclench my neck
while my head breaks like glass.
The same anchor of neurons
that deplete and diminish also
propel my lungs, my arteries
pulsing like mountain streams,
sinews linked and vital
in a brilliant mystery.
What did Jesus do in agony of body
but acquiesce like a guileless lamb,
forgive the thieves, abandon the world,
arise again with the morning star.
I believe that, in many cases, acceptance of a problem lessens its severity in our minds. It’s a process you work through over time. St. Augustine said the greatest evil is physical pain, but I published an essay about comparing emotional pain with physical pain. Which pain is worse? In a circumstance of a heartbreaking emotional crisis I went through, a certain level of acceptance helped. My present physical challenge, this kind of pain, is impossible to ignore. How can you accept what you cannot ignore, even for a day? Or an hour? Sleep is the only escape. This is the beginning of the downward spiral of poor aging. You stop doing things you love because something hurts. I spent decades doing yoga before it was cool and popular. It felt good, and I liked being flexible. That ended with my back problem years ago. Now I feel less balanced and weak—-like an old lady.
Pain equals loss. Not only do you lose activities you once loved, but you also lose friends’ interest because you are dull and minimized by your preoccupation with your condition and its many treatments. You lose affection because it hurts to hug or cuddle or do more than that. You must accept that you are alone in your affliction. It’s isolating.
The American Medical System
It’s easy to blame doctors. However, doctors did not create the skewed medical system in America. It’s profits over people now. Years ago, when confronted with something he wasn’t certain about, my primary care doctor would look at me and say, “Well, let’s figure this out together.” And he’d bring up the newly created WebMD. It seems he had more time to delve into the problem and look for options. He also had a quality of humility—admitting that doctors don’t know everything. We must confront this concept as adults; they only know so much.
In America, the emphasis is on relative value units (R.V.U.). A recent (6-18-23) New York Times article described this as “a metric used to measure physician reimbursement for doing tests and procedures and discourages them from spending too much time on less remunerative functions, like listening and talking to patients.” This has led to an alarming attrition in medical professionals due to their discouragement at their chosen vocation becoming so much less about their patients. The article quoted doctors as saying they spent most of their time filling out electronic forms and arguing with insurance companies about pre-approvals for their patient’s care. My medical system recently began charging for email messages if the doctor had to spend significant time answering them. So that takes care of the less remunerative function, I guess. Have you ever been to an appointment when the doctor hardly looked at you, instead typing away at the computer? One time, I took my elderly mother to an appointment. The doctor never looked up at her. During the appointment, she became ill and started to vomit. I exclaimed, “She’s sick!” He still didn’t turn around but calmly said, “Call a nurse.” It was absurd to me that we were sitting a few feet from a physician, and he would not turn from the computer to help her or even show concern.
My mother was very healthy until her 80s, and this is when I began to question her about her health. At first, she was unwilling to tell me even the names of her doctors. She had kept diagnoses to herself. She never complained or attempted to enlist my help until there was no choice. I often think about her stoicism because I am not stoic. I talk too much. I want people around me to understand why I am different and that I would do much more if possible. I tell my children about my issues so they will know why I don’t do as much with my grandkids as I’d like. But is that pathetic? It’s a natural desire to want to be understood, I suppose. But it’s unnatural to deal with a parent’s health—until you have no choice. I’m trying to do less babbling about what I’m going through.
An Alternative Approach
I am turning towards an alternative approach since conventional medicine has failed me. Holistic healers will listen and spend time with you. They will look at the whole body and how it’s working, not just a little specialty section. My first two sessions with a massotherapist took one and half hours each. The therapist talked with me the whole time. It was about me and my entire body, not just one small part. There are no pills or injections involved, just a hope for healing.
She connected the distortion of my sacrum to my neck, both on the left side of my body. It made sense. She asked me about stress, and I said I had none except this pain. But when she dug deeper, I realized that this physical pain had occurred shortly after my emotional crisis ended. Had it ended, though, she asked? The problem was never truly resolved; it just improved, and I took the gift. Could that lack of resolution be stored in my neck? It had always been a problem area as far as muscles—then it suddenly flared—for no reason I could imagine. At this point, I am willing to entertain this curious idea.
Many years ago, I experienced clinical depression for a very specific reason. It occurred quickly, and at the time, I had no idea what it was or why it was happening. I was very young, and I recall being surprised at how my whole body ached. I learned then that our emotional and physical well-being is intertwined. I had forgotten that notion. The human body works as a whole. Each system depends on the others to keep functioning. We are fearfully and wonderfully made. The muscular and skeletal systems work together to give us movement. The cardiovascular, lymphatic, and urinary systems maintain water balance in our bodies. What if one is out of whack, as is the case with my sacroiliac? Wouldn’t that affect the other areas surrounding the spine?
“Not only so, but we glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” Romans 5:3-5
We all have choices in how we face difficulties. In 2 Corinthians, Paul states that he will boast of his weaknesses, whether they be insults, hardships, persecutions, calamities, or bodily frailty, and that God will give him the grace to endure. He saw his weakness as not an obstacle but a gateway to God’s grace. I’m not quite there yet.
Diane Vogel Ferri’s most recent books are No Life But This: A Novel of Emily Warren Roebling and Everything is Rising, a poetry collection.
Her essays and poems are found in numerous journals.
She is a lifelong northeast Ohio resident and maintains an Author Page on Facebook.