The Useless Hands
It was about 3 a.m., that silent hour when most of the world sleeps quiet and deep. I’m not sure of the time, exactly, because I’d been awake most of the night so far and I’d stopped looking at the clock. It only made me more upset, more desperate. The howling gusts of wind, roaring in off the North Sea, whipped sleet against the bedroom window like fistfuls of dry sand, and although the old, pre-WW2 radiator clanked furiously, the air in the room was damp and chilly.
Next to me, my husband snored lightly, the thick goose-down comforter pulled up nearly to his ears. He and that comforter were so warm and cozy I didn’t want to move, but I didn’t have a choice. I’d had one cup of coffee too many after dinner. My bladder was signaling urgently. I couldn’t lie still anymore--but then, I hadn’t been doing a good job of that, anyway, had I.
It felt like every joint in both of my hands were twisting apart, held in place only by viciously stretched tendons and my tight, hot, swollen skin.
When this particular arthritic flare caused by my rheumatoid disease had struck my hands, it had been late in the afternoon. The pain wasn’t bad, yet. I finished out my last hour at work, stopped at the commissary for groceries, and drove home, grateful that I could still grip the steering wheel on my cranky old Renault and shift gears without too much pain. At least, I thought with a grim sort of triumph, the flare hadn’t settled into my left foot. Pressing the clutch down when that happened was agonizing.
Once home, I took four aspirins, changed into comfy clothes, and made dinner. As I was washing the dishes up afterward, my hands, which had been aching dully, started twinging as if something knifelike was stabbing between the knuckle-joints and, for good measure, zapping them with sudden jolts of electricity. At the same time, the ache became heavier and more insistent. It followed my pulse. I gritted my teeth.
It was nearly 8 p.m. Time to tuck my 8-year-old daughter into bed and read her a story, something we both treasured even though she was getting a little too old for it. Once she settled in for the night, I’d take a long, hot bath. I’d use my special bath oil, the one with eucalyptus and menthol in it, and soak my hands (along with the rest of me) for as long as I could. Then I’d wind them up in compression bandages, take more aspirin and my nightly dose of Naprosyn--the only drug I took for my RD at that point--and go to bed. Maybe by morning the flare would be gone. It had happened before, after all.
By midnight, I knew I was in real trouble. The aspirin and Naprosyn were having no effect whatsoever on this flare, which was now much, much worse. I just stayed in bed, trying to ignore the twin stumps of agony on the ends of my arms. I tried to force myself to sleep. Exhausted, I’d doze off for a little while, but my painful hands woke me again, over and over.
And now it was 3 a.m. I couldn’t ignore my bladder anymore. But first, I needed to get the comforter off me--and my hands hurt so badly, I couldn’t grasp it without moaning aloud. I didn’t want to wake my husband, you see. He had to work in the morning. Well, so did I, but that was my problem, not his …
I finally used my whole arm to sort of toss and shrug the comforter off, and rolled to a sitting position on the side of the bed. For a time I just sat there, biting back gasps of pain, feeling the cold air penetrate my nightgown and start forming ice-slippers around my feet on the bare hardwood floor. My hands … my hands felt like they were about to explode. Finally, I stood up and went to the bedroom door.
This was in the north of Germany, in the 1980s. The door had a lever-type handle, and we’d closed it in an attempt to keep the warm air in. I reached down with my right hand and, gritting my teeth, grasped the handle and pushed it down.
The explosion of pain was so stunningly brutal that I let go of the door handle and just stood there, right both hands held at heart level in the middle of my chest, gasping for my lost breath. They throbbed heavily, with each buh-bump pushing all those twisted-apart joints, every single one in every single finger, further apart, back together, further apart. In my mind I was screaming like a small, injured, terrified animal, but oh, I was trying so hard to be quiet! The only sounds that escaped my lips were soft, breathless moans. I stood there in my freezing bare feet in the dark in front of that solidly closed door, trembling with fear now at the very thought of trying to open it again.
But I had to. I had to get to the bathroom or I’d soil myself. This time, breath held, I clamped my jaw against the pain until I got the lever pushed down all the way, but when I tried to pull the unlatched, solid-wood door open, the pain ballooned so huge, so excruciating, I had to stop again, once again swallowing cries of agony.
By the third failure, I was sobbing silently, a 34-year-old professional journalist, wife, and mother who couldn’t get her unlocked bedroom door open so she could visit the toilet in the middle of the night. And now, not only did I not want to interrupt my husband’s slumber, I was embarrassed to. How could I explain this? How could I tell him, all grumpy and tousled with sleep, that my hands hurt so horribly I couldn’t open the bedroom door by myself? I felt like a helpless child--and worse, like a stupid one.
In the end, I got the bedroom door open by pushing the lever down with my left elbow, then pulling it open by shoving my right wrist between the lever-handle and the wood of the door, and stepping backwards. Tears of pain--and shame--streaming down my face, I made it down the short hall to the bathroom (the door was open, thank goodness). I went in--and realized I’d need to skin my underwear down--with my hands!--so I could sit on the john.
That, my friends, is another story. I probably don’t really need to tell it.
There’s a part of me, all these many years later that wants this to be a funny story. You know, the night my arthritis almost made me wet my pants. Ha-ha. But it isn’t funny. This is reality. This is how bad--and horribly mundane--rheumatoid disease can be, and this is how profoundly it can affect someone who’s never had to cope with this kind of pain before. It happened nearly 25 years ago, but I remember that awful night as clearly as yesterday, right down to the gusting, North Sea winter wind and the sleety rain outside the windows.
I spent the rest of that night on the sofa in the living room. I couldn’t sleep. And the next morning, I had to call in sick to work. My husband was late to his job after all, too, because he had to get our daughter off to school by himself, brush my hair, dress me, and take me to my doctor. I didn’t have an appointment. I just stood there and begged until they squeezed me in. The doctor gave me a prescription for 10 Percocet tablets and sent me home. They helped push the pain back some, but this event stands out in my memory as one of the most painful flares--and most helpless moments--of my life to date.
It ended about 36 hours later, just as suddenly as it had begun. My flares were always like that in the early years, but with this one I’d learned a valuable lesson: I never shut the door to my bedroom again.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?