Principles for the Struggle

My shoulder throbbed, the nerves frantic and frayed. I had never felt so worn out, fatigued, and exhausted. My wife was sound asleep in the hospital bed next to me, our brand new baby boy curled up on her chest. As I stared at the ceiling, wide awake after the ordeal of delivery, the flashing lights of computers and monitors tapping out strange visions interrupted only by well intended nurses and staff, I wondered what I was going to do. I looked at my hands, the joints swollen, red, and so stiff I could not make a fist. I had been limping around the hospital for the last twenty hours, the metatarsals on my feet screaming in agony, yet there was so much to do. My first child had just arrived along with years of expectations, hopes, dreams, anxieties and fears, and now a new mystery: what was wrong with my body?

I thought that first night was a fluke, two months before my son was born, or some strange strain or sprain. I had awoken, my left wrist swollen more than double its size, sending a pain that left me tossing and turning for a few hours as I tried to discover a comfortable position to sleep. The phantom swelling lasted only a few days, and life resumed. A few weeks later I awoke, in almost identical fashion, to my right wrist swollen up like a balloon, and just like before, it was agonizing. It soon disappeared only for my shoulder to become so stiff that I could not lift my arm to eye level. Then came my feet, swollen up like bloated fish, and my fingers resembling giant sausages. Over time some of the swelling went away, but some of it set up permanent residence as an unwanted intruder intent on hostile vagrancy.  I was to be the host of my unwelcome new acquaintance, and I knew the relationship was never going to be a friendly one.

I kept going, trying to be a new dad, trying to support my wife as we loved and despaired over our 24 hours a day constant bundle of joy, screams, laughs, and tears, waiting for my appointment with a Rheumatologist. The last year of my Masters degree had begun, and I could barely walk from the parking garage to class. My feet were so swollen they would not fit in shoes, my hands so inflamed I could barely type. At home I tried to change diapers, hold the little man while my wife caught a short nap, manage the house, buy groceries, cook meals, and run my stepson to school and all his activities. The inflammation and pain permeated every second, every minute, and every hour.

By the time I saw a Rheumatologist, some six months after the first episode of inexplicable swelling, I was nearly certain I had RA. I was relieved when the doctor confirmed this. I appreciated the precision with which she explained my treatment options. There was a sense that the war was ending, like some expected and unpleasant thing had finally happened, and it was time to rebuild.

After a week of treatment with methylprednisolone and methotrexate, the swelling in my feet and hands was virtually gone. I was astonished, and in celebration hopped on my mountain bike and went pedaling to my local trail, grinning ear to ear. I have been riding bikes, starting with BMX, and then taking up road and mountain bike racing, for more than twenty years. It is one of my deepest passions, and I had worried so desperately that I would not be able to ride anymore. I can recall only a few times in my life when being on my bicycle felt like absolute transcendence, and this day, with all of the swelling temporarily gone, was a day unmatched by any other. Yet it was not to be so for long. While descending a narrow and tree-lined section of the trail, my front tire slipped on a pile of bright orange and yellow leaves just as I tilted the bike into a corner. I found myself being hurtled straight towards a tree, and before I could even sense the ground, I was lying on my back, dirt and blood on my face, my bike in a heap some ten feet away, and my shoulder howling, just as I would, in absolute agony.

I screamed for help, my voice trembling. My fingers were torn up, I had huge bruises appearing on my legs, and my shoulder felt like it had been ripped away from my body. But no one was near enough to hear me. After the initial shock and pain subsided, I dusted myself off, and with one hand lifted my bicycle, pulled out a wrench from my pack, straightened the bars, checked the brakes, and climbed on. With one arm steering and braking and the other hanging limply at my side, I descended back to my house. As I walked into the bedroom my wife looked up at me, concern written all over her face, the little man suckling away at her breast, and I fell to the floor. Despair overtook me as I sobbed and heaved in total desperation. Six months of endless pain, then one week of feeling good, and now I had broken my shoulder. I could feel the bones grinding against each other, moving when I pushed in certain places, and I knew it was a clean break like I had done to my forearm a few years previously.

As I slowly healed up from my crash amidst the chaos of an already hectic life, I was confronted with another problem. The drugs were ineffective at the maximal dosage, and the doctor had added a TNF inhibitor to see if we could get a better reduction in inflammation. I soon broke out in hives on my leg, which then quickly spread, and I was getting migraines so severe that I would have to skip class and work, and spend the entire afternoon in a dark room with a cold cloth on my face. Something deep inside my brain felt like it was dying, and that my skull was rotting from the inside out. The blood work came back that my liver was not functioning properly. We tapered off almost all of the drugs, and the swelling returned full force. Thankfully my liver function returned to normal, and we proceeded with trying new treatments.

It was during these horrific few months of my life and first year living with RA, that I felt I needed something bigger than me to strive for, to keep me going. I wrote the following “Principles for the Struggle,” as something to aspire towards as I struggle with rheumatoid disease. I return to it often, finding something I need to keep me afloat when I feel the ocean of life submerging me in darkness.

  1. We will be educated about our disease, about treatments, about lifestyle choices that make a difference.
  2. We will not blame others, our environments, or ourselves. Time spent asking “How did this happen?” is time that could be spent asking, “How can I better manage today?”
  3. We will never ask the questions “why me?” or “why now?” The answers are not worth dwelling on. To the first, no one is exempt from illness in this world. To the second, there is no such thing as a convenient time to have life altering diseases. If we are asking “why now?” under our current circumstances, we would ask the same thing under different circumstances.
  4. We expect that others will not know, cannot know, or do not want to know the depth of our struggles. In this way we expect misunderstanding, and are surprised and appreciative when greeted with kindness, sensitivity, and goodwill.
  5. We are responsible for our health. The doctors and the treatments they prescribe are means of fighting the illness, not the arbiters of our lives.
  6. There are no magic bullets, nor certain answers. We recognize these limitations.
  7. We will show our humanity and concern to others who also suffer.
  8. We will, daily, seek to do something more than we think we are capable of.
  9. We will, daily, find something inspirational, meaningful, or beautiful to appreciate.
  10. We will express our sincere gratitude to those who help us. We will not be ashamed to ask for their help. We will not ask for more than they can give.
  11. “This too shall pass,” refers both to the days when we are stricken with the difficulties of our illness, and the days when we hardly have any indication that something is amiss. Neither will last indefinitely. We accept as transitory both the good and the bad of all things.
  12. We will learn from our mistakes, and find ways to not repeat the same mistakes in the future.
  13. Above all else, we will struggle with dignity and self-respect.

This is what it means to me to live at my best with rheumatoid disease, and what I strive for. I would love to know what others would add to the principles, so please share!

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