“You are going to live in chronic pain the rest of your life,” the doctor told me.
In the doctor’s glasses I saw my reflection. I looked as I felt, crushed. “You’ll probably be on pain medicines the rest of your life…but at least it will help ease some of the chronic pain for you. We can also discuss you getting a spinal cord stimulator or pain pump to help ease the pain,” the doctor finished saying with an air of optimism. How could I even begin to fathom living with this horrendous pain, and for the rest of my life?
“What?!” I asked the doctor? “I had to “get by” by endless dosages of pain medicine?” My memory and concentration were already so impaired from all my medicinal cocktails. Tears swelled in my eyes as my heart began to drown in grief. Quietly and attentively I sat, but my mind raced in a tumultuous storm of devastation.
Already I had felt this indescribable, anguishing, chronic pain for too long. Previously, I had a low-back herniated disc from a work related injury as an occupational therapist. My L5 nerve was damaged after a forceful administration of an epidural was given to treat the herniation. Horror-struck, acid-like pain burned down my right lower leg and foot, which became paralyzed. My uncle, a neurologist, and another doctor intervened three weeks later and immediately a surgery was scheduled to remove the disc. The day of surgery, the neurosurgeon told me I had a 70-percent chance of never regaining any functional ability in my leg and foot. This number reverberated in my head as I prepped for my first of three back surgeries.
That surgery led to complications of a vertebral segment fracturing off, cutting through my dura, causing spinal fluid leakage, and two staph infections, one of which was osteomyelitis in my vertebra, eating it away and causing bone marrow inflammation and ceaseless, uncontrollable muscle spasms. This all went misdiagnosed for one month before I took a taxi to the emergency room and was admitted because I was in “too much pain to care for ‘myself’”. I received my second back surgery to take out the fragmented bone and repair the neural sheathe.
Vividly, I remember lying in my hospital bed in utter fear of moving. Even the slightest movement caused more spasms and pain to wrench through me. I was shamefully jealous of those patients I heard so easily walking outside my hospital door. Clutching my bedrail in agony, fighting my way through each convulsion from osteomyelitis, I clung to my belief that everything happens for a reason. My hope that I might discover an answer kept me going.
One day, my parents walked into my hospital room. “Your doctor is planning on sending you to a nursing home.”
I was devastated, but it also ignited a survival mode that motivated me to spend every ounce of physical, emotional, and spiritual strength for the following 1-½ weeks to work with my physical therapist to learn to walk with my walker down the hall, and to climb 10 stairs with a cane. I was relentless.
Triumph! Elated with utter relief, my doctor discharged me home. Along with me came my walker, my cane, a bath chair, a hospital bed, assistive dressing devices, and the PICC line in my arm. That night, finally again in my own bedroom, I slept better than I have ever had in my life. But the next day I awoke to voices outside my bedroom door. My roommates were embarrassed to have friends over because of how I looked and wanted me out.
Eleven months came and went with endless hard work learning to walk again and progress from a walker to a cane, trying to get out of bed 1 hr a day, and teaching myself how to cope with medically complex trauma and panic attacks from painful medical procedures, life threatening complications, and relentless pain. Once again sat in a pain specialist’s office to hear only despairing: "You will always have chronic pain and you need to accept this."
How could this stranger so calmly tell me to accept chronic pain; that I would never achieve my dream of living pain-free?
My dream was my talisman. I prayed and pleaded to it every day and night. I wanted my life back, myself back. The doctors’ words stabbed my heart, but it was also what I needed to hear. Suddenly I was forced to confront my biggest fear--living in pain forever. Fears transformed into proactive anger. He had no right to define my future, my fate. I became determined to prove this doctor and all my other doctors wrong. I decided then and there that I would live a “normal” life without pain and without pain medications.
But my goal was not to prove wrong all my doctors (though it was quite a pleasant thought), but to prove wrong my own fears. I yearned to prove that I could and would heal myself. Eventually, a year later, I received a third surgery to fuse my vertebrae because my spine had collapsed onto my sacrum. Unable to live independently, I stayed at my parents’ house for six months, bedridden from pain and in a body brace.
I received therapies three to five times per week for five plus years. I wore a soft back brace (actually a waist girdle I bought). I could only sit for 1 to 1½-hour intervals, stand for 15-minute intervals, drive for 30 minute intervals, and walk on a level surface (without a cane after 5 years!) about 1 to 1½ miles. Eventually, prolotherapy strengthened my sacrum's tendons and ligaments so I could stand for an hour.
I am diagnosed with neuropathy, myofascial pain syndrome of neck and back, and adhesive arachnoiditis, in which my nerves from L3 down are adhered inside my spinal cord with scar tissue. I do not define myself by these diagnoses. I have a chronic, invisible illness, and you would not know the amount of pain I feel when looking at me. And this is what I prefer. For I am not my illness, I am the person you see who can be a kid at heart, who has fierce determination, and who tries to live every day to the fullest.
Through the years, I redefined healing. I realized I did not need to accept chronic pain as much as I needed to accept my Self.
For me, healing means healing the way in which I relate to pain and dis-ease, and transforming these into something positive, not feared. I began to realize that I must find ease and inner peace within myself, despite what my fate holds. Healing must start on the inside before it can start on the outside. Pain is overwhelmingly powerful. It is physically debilitating, and it produces fear, which is mentally debilitating. But I have learned that pain and physical limitations do not define the essence of whom I truly am inside.
Loss and change gave me the opportunity to begin anew. I have come to realize that I can lose everything (my job, my apartment, my friends, a body I once understood), but never my Self. We each have the ability to consciously shape our experiences and our realities, and to evolve. I believe that when we undergo any type of traumatic experience, we must seize the opportunity to discover strength and wisdom within ourself that we otherwise could not or would not have known. Physical and/or emotional pain is a powerful gift--a tool--for self-discovery and self-knowledge. Pain is the paintbrush, experiences are the colors, and we are the artists. When we dispense of judgments of ourselves for what we can and cannot do, we learn to trust, to believe in, and to appreciate ourselves more fully. This is the foundation for creating the fine art of our life.
Yes, I miss running, skiing, and being as physically active as before. Of course I still struggle some days to find inner peace and happiness, but pain continues to lessen. Life is a university, and I am only a freshman. But, I no longer regret my journey. I am proud of my resilience and of the life I have created and continue to create despite chronic pain, and I probably feel more grateful for my body, my abilities, and my life than I would have if I had not been injured.
I know and love what is most important in my life: my family, my friends, and myself. I lost many friends when I first became “disabled.” I am greatly thankful to all my family and those friends who love me for who I am. We are each so special as individuals despite physical, mental, and/or emotional limitations. We all have gifts; why deprive ourselves and others of these?
Update: 2024
Little did I know 5 months after I wrote the above post that I would contact Covid and thus would begin my Long Covid journey of 3.5 years and going. I don't know if I would be able to cope with Long Covid as well as I think I have if I had not experienced my back injuries. That experience helped me to build a resilience, a trust, and a belief in myself that perseveres me through lung and heart damage, dysautonomia, and reactivated Epstein Barr Virus (EBV) . It also has given me the fortitude to say that I deserve better and to not listen to the non-answers or non-attempts to try something new in the conventional medical world and seek my own answers.
For some reason my adult journey has been learning how to cope and heal from chronic illnesses, which a huge population of the world endures. I hope my journey can offer a beacon of hope to others. There is no one thing that has worked for Long Covid; it's been a multitude of trials and errors, research, and soul searching for treatments and answers. Besides a positive attitude, self-advocacy, and perseverance, I had to work through a lot of anger at getting it despite all the precautions I took. Anger is a strong emotion that can fester inside if not released. I had to process that anger over and over and over. Emotions are never separate from having a physical illness. They can't be ignored.
The medical treatments that have had a substantial impact on healing are stem cells (umbilical cords MSC), IVs for POTS (which insurance does cover), 10-pass ozone therapy, pacing with light, creating my own exercise program in supine to siting to eventually standing, and some medicines (Mestinon for breathing and prescribed Methylene Blue) are a few of the plethora of treatments. Soon I will try S.O.T. for EBV. I never knew of these treatments and others I've tried before Long Covid. Thank goodness for facebook groups where people share their experiences and treatment attempts! Hopefully, more treatments will become available to us as research begins to discover more.
So here's to another journey of healing and recovering, and hopefully my last. And once again I must reiterate, despite what may ail us, whether it be physical, mental, emotional, or spiritual, that does not ever take away the gift of who we are. Perhaps, just perhaps, it brings us closer to who we truly are and what matters in our life.
Let us find compassion in and for ourselves so that we may fully embrace our life and feel a passion for all that is around us.
A kite is held down at one end, yet it still soars in the wind.
I wish you joy, love, laughter, and so many blessings!
Deborah A Rogers
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