As I write this, it is 5:45 AM. I am up early with a pulsing backache. I did not sleep long, and I already sense a nap will be in the offing this morning. But right now, what I sense mostly is the silence that fills our house. It reminds me of the silence I experienced as a child when my mother would be far away in the hospital battling the ravages of diabetes. During these times, my father would leave the house for work around 5:00 AM filling his day with factory work and then drive 60 miles to Indianapolis to spend the evening with my mother. There he would catch up on her medical status and then return home around 11 PM, and the cycle would repeat day after day after day…
What was left for me was silence.
I would walk over and talk to my grandmother, but mostly I would go home and experience silence, and since I was an only child, that silence could be deafening at times.
Invariably I would fill it with the sounds that young men use to feel less alone, music, television, and radio were my constant companions in the evenings and as I was getting ready for school. But what I will never forget was the overwhelming silence I would feel when I got out of bed each morning.
This morning as I woke I started my morning ritual of system self-checks:
Hands – stiff and they hurt, - check normal;
Left foot- no pain. - check normal;
Right foot - very painful, - check under review;
Knees - no pain, - check normal;
Right hip- sore and painful, - check normal;
Back – stiff, painful popping, – check normal;
Neck - stiff, painful, - check normal
I feel like a flight crew on a 747 preparing for takeoff as I lay in silence running my morning checklist. I recall being on an airplane and hearing the flight attendant announce cross check. That is what I am doing, I am cross checking my joints and when all systems seem accounted for I rise out of bed and take the overall system check, my blood sugar can tell me more in a five-second test than even the most complete blood test.
Still, it is the silence that I contemplate this morning.
It is so calm it is nearly oppressive. Then I realize that I never had to run this kind of checklist to get out of bed before Rheumatoid Arthritis entered my life. I used to just get out of bed, no checklist, no self-report, get out of bed and start my day. It was a three-step operation; I woke up, I moved, and I proceeded. I need not run the pain and joint inventory.
My joints used to be silent. I could count on them to work out minor aches and pain as I went about my day. Not so with Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS). Today each day is a ritual of starting. Nothing moves until I finish my checklist. I am not contemplating trouble, but this check helps me identify things that seem different.
What will my joints be today? Will I ache worse as I go through my day or will I be pain-free? Will, I be fortunate and find that my two morning NSAID’s will suffice? Will, I be able to do all the things I want, write, and get parts and repair for my RC Car*; or will I have to call a late afternoon time out for a nap?
Silence gives me time to contemplate joints, in the same way, I used to think about my mother’s health. In both cases, I begin not knowing the outcome of each day, but trusting that it will be OK, no matter what. Silence also lets me contemplate all that could go wrong and all that is right in my life. Silence, after all, is the great equalizer, it makes everything possible and scary at the same time.
* There was a big crash caused by the driver who for legal reasons can only be identified by the initials RP
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?