The Tell Tale Sign
"Illness is definitely not elegant, and certainly not venerable." — Ludivico Settembrini in The Magic Mountain
As I walked through the lobby of the University hospital, I stood tall, like a man of confidence. Step by step, I recalled in my mind how different it felt to make my way to clinic 2, rheumatology and internal medicine, without the slow limp that often sets my otherwise healthy appearance apart. When I signed the receipt for my copay at the reception counter, I could easily grip the pen, and signed my name without difficulty. It was a different sensation entirely. Sitting down in the small examination room, the nurse began taking my blood pressure while going through my list of medications, inquiring as to which ones I was still on. When she read off prednisone, I had the deep satisfaction of saying; “I tapered myself off of it about four weeks ago."
A few minutes later and after the nurse had checked me in, my rheumatologist knocked on the door and roused me from reading the story of Hans Castrop, a character who falls ill in the first decade of the 1900's. The book is by the Nobel Laureate Thomas Mann, called The Magic Mountain. To my surprise when I first began the novel, I had actually been to the sanatorium that is the scene of the story: the Berghotel in Davos Switzerland.
The Berghotel is no longer a health sanatorium, but an extraordinary art nouveau mountain lodge with breathtaking views of the Alps and the quaint Swiss village below. When I was twenty-three years old, I visited Davos as part of a team of acrobatic performers. After the culmination of our high-flying show, we had a swanky press party at what a century ago was an institution for those with chronic illnesses.
On this particular rheumatology visit, I was recounting to the doctor my youthful adventure in Switzerland and its intersection with the book while she was inspecting my joints. As her fingers pushed into the sides of each of my knuckles and she began squeezing the small bones of my feet, she asked me to rate my pain. In answer, I uttered words I didn't know I would ever speak again: "I don't feel any pain right now." She seemed almost as startled as I was. "This is good," she said, "it looks like we might have the disease better controlled. Get your blood taken and schedule an appointment for a follow up."
As I sat on a bench waiting my turn to get prodded with more needles and have my blood drawn, I had a foreboding feeling. Though the past few weeks had passed without pain, I had been in the midst of one of the most mind-numbing fatigues I have ever known. Though I had no swelling, it seemed to me that the disease was very active. When I received my blood results a few days later, I still had markers of disease activity and some more bad news: I had a very low white blood cell count. The lab results confirmed what had been lingering in the back of my mind: The lack of pain and swelling were intermission, not a sign of potential remission.
Two weeks after my appointment I awoke in the middle of the night to the tell tale sign that things were about to turn in a nasty direction. As I lay in bed, drowsy, exhausted, and lost in the land between sleep and alertness, I felt that familiar twinge in the ring finger of my right hand. My heart sunk in despair. Six weeks without that apparition of inflammation haunting me, and now it had returned. Somehow I fell back asleep, though it was with sadness, worry, and anxiety of what the morning would bring.
When I awoke, two of my fingers were huge, stiff, and painful. As I put my feet on the ground, the familiar sting came shooting up my legs. Without hesitation I reached for the bottle of prednisone and thought, "Hello old friend. I love you but I hate you all the same," and swallowed a large dose while dragging my body into another day with RA. The week that followed brought swelling to my jaw as well, making it painful to laugh, eat and smile. The flare quickly ended my wishful thinking, and the crushing reality brought my wife and I a great deal of sadness. We had really hoped things were headed in a good direction.
The mental battles of rheumatoid arthritis can be just as invisible as the fatigue and pain. It is hard to explain to someone who hasn't experienced the psychological difficulty that comes with the disease.
I am not an apprehensive or anxious man. I lived for a large portion of my life as an acrobat and stunt performer. The ability to take risks and overcome fear is probably my greatest asset and what I am most proud of. RA is a progressive disease. I cannot simply overcome the fear of what the future holds as I might overcome the fear of walking a tight rope across a chasm. RA as I know it is a matter of learning to live with a constant sense of foreboding and the knowledge that such worry is well founded.
"It’s true! Yes, I have been ill, very ill. But why do you say that I have lost control of my mind, why do you say that I am mad?" — Unnamed Narrator of The Tell Tale Heart.
Have you managed RA fatigue better than you used to?