This winter sucked the big one for me. The children and I were continually sick. Little Luca, as some of you may know, was the sickest of all—he tends to surpass us all in that respect. He had such a high fever that I could have put some dough on him and baked a freaking loaf. I don’t feel like I handled this particular issue well; my pediatrician’s office can testify to the embarrassing number of times I called in sheer panic over the fact that he was just so hot! It freaked my freak! Eventually, I realized I needed to check myself (before I “wrecked myself”). For me though, any seemingly small symptom that I see in my kids tends to set me off because I know that a fever isn’t always just a fever.
One of my first memories, is of a hospital room. Or at least a very hospital-like room. Memory is a tricky thing, and mine is trickier than most. I remember everyone wearing surgical green. And that I was crying for my mother. I can see my mother leaning over me, trying to comfort me. It’s a difficult image, and when I think about it, the emotions of the moment flare up. I always thought it was a dream, not a memory, until one day I asked my mother about it, and she said, “Oh, honey. I can still hear you crying ‘MOM-MY!’”
(I’m sitting on the front porch of our house in Lockport, New York. I was adorable! And let’s face it, I still am. I mean, really. Have you seen me? Note the size of my right knee.)
I was two and a half years old. My mother was looking at some recently developed pictures when she noticed that one of my knees was much bigger than the other. In the baby book she meticulously kept for me, she notes that I had my first ear infection in 1976. A blood test and fluid draining followed in May and June of 1977. The results were confirmed in July of 1977. I had Juvenile Rheumatoid Arthritis (JRA).
(And just because I know you will all think this is adorable, I had my first cold when I was three weeks old. I know because she wrote it all down. She wrote everything down. I bought a baby book for the kids and haven’t been able to find it since 2006. Sigh.)
Many people are still surprised to hear this. Not the fact that I can’t for the life of me keep notes about the children and still manage to dress myself every day, but that kids can have arthritis. They can. 300,000 children in the United Sates have arthritis. From my own experience and observation, I know that it can range from tremendously to mildly painful and from quite livable to extremely debilitating. I feel almost silly writing about it. My own experience, now so far in the past, is faded and almost impossible to articulate. What I remember from that time are things like hospital visits—too many to count—to have the swelling checked and charted. And blood draws. So many that still, almost 20 years later, I instinctively lift the sleeve on my left arm and say, “this is the juicy one!” whenever I get my blood drawn.
So when Luca spikes a fever (symptom of JRA!) or complains that his knee hurts (could it be?) or gets more ear infections than Rowan (you see where this is going, right?) I can’t help but think: did I pass this on to my children? My father, when he read on Facebook that Luca had pain in his knee, sent me a private e-mail making sure that I had checked for swelling, redness, and heat. We were both thinking the exact same thing.
What stands out most about my arthritis experience are the other children with JRA I saw at the hospital each time I had an appointment. Well, that and the pills. I took a crapload of pills. At first, my parents would tried to hide them by crushing them and mixing them in with my food. Eventually though, I just swallowed the suckers—upwards of sixteen a day, as I recall. I was a tiny pill popper.
For about eleven years, I was a regular at Strong Memorial Hospital in Rochester, New York. That’s where I really began to notice the other kids. Some were in wheel chairs, others in casts. Some were unable to walk the length of a short hallway without pain and limping. Some were unable to walk at all. I saw crutches, and braces, and kids of all ages suffering in many different ways from this disease. I was always left feeling incredibly divided: both sorry for myself—because I felt actual and acute pain—and very lucky at the same time. I had it good, really. What I had was manageable. What I saw others dealing with looked simply unbearable.
Eventually what had begun in my knee became present in every joint. My fingers were very obviously swollen with arthritis, along with my wrists, toes, ankles, and, of course, both knees. Those were the visible areas, and it both hurt and embarrassed me. All the time. I felt deformed and incredibly insecure, acutely aware of the swollen, elderly look of my hands. I was in seemingly constant pain and only felt a little relief once I took my medicine.
It’s funny. I recently learned from my father that I never actually complained about being in pain. And I learned too, that I resisted any method of pain relief other than medicinal. For example, I took a class in a heated pool with eight elderly men and women that focused on stretching and exercise for sufferers of arthritis. This apparently was not my thing. To be honest, it’s entirely possible that I was both really freaking lazy and embarrassed to be seen in a pool with a bunch of senior citizens. I was a teenager by then. As I grew older, things improved, and I began to see the, um, usefulness of my disease. Let’s just say I didn’t overexert myself in gym class. At all.
Now, as a grown woman with my arthritis firmly in remission, I marvel at the strength and dedication I see in parents with children with difficult illnesses. And I’m humbled by what my own parents, especially my father, did for me when I was a child. I find myself realizing just how overwhelming it must have been for them to be genuinely compassionate all the time. Especially at night. Nothing is more challenging to me than being needed at night. Usually I end up frightening the children, not comforting them. I’m a freaking psycho at night. A total. Freaking. Psycho.
Well, not anymore, now that I’m medicated. But the psycho lives in me.
A year ago I tried to contact the doctor that I regularly saw for my arthritis as a child. Dr. John Baum, a man always in a bow tie, with a balding head, and a disposition that made him a memorable and totally appropriate child’s doctor. He was always smiling and goofy. Always. I never once dreaded my hospital visits. Not one single time. After all these years, I wanted him to know what became of me: that I became motivated by my history with pain to become a reliever of it. That the compassion shown to me was not wasted on me but became the foundation for my career choice—a model for me, one that makes me better at my job. It taught me how to be in the world, and that no one—not one single person—should live a life without relief (however occasional or fleeting) from pain.
Two weeks before I found his address online, Dr. Baum passed away. I had wanted to say thank you for being one of the people in my life who was a champion for me, but I missed my opportunity. A lesson learned. Never wait to share your appreciation. Never wait to thank someone for teaching you one of life’s most valuable lessons:
Compassion is medicinal.
Tucsonans: Please consider walking with me at this year’s Arthritis Walk. Save the date: May 7th, at Brandi Fenton Park, from 8 am to 12 pm. Message me if you want to meet up.