Running with my arms: Lifelong arthritis and the strength of parenthood
I was diagnosed with juvenile rheumatoid arthritis when I was 18 months old. I grew up with a variety of treatments and having to sleep with a leg brace. My left knee was for years the only joint actively affected, and though I was restricted in what activities I could participate in at times, I was acutely aware that there were children who were affected much more severely than me. My parents instilled in me a feeling of gratitude, that even with the difficulties I faced, I was one of the lucky ones.
I didn’t outgrow the disease, however, as some children with the diagnosis do. In my twenties, the disease progressed, and more and more joints were affected. This was difficult, but I always tried to remain positive. I learned to focus on and be thankful for the ways that it made me more aware of my body, the way it forced me to try new activities that I could do and learn about health and food in a way that I might not have otherwise. Dealing with my arthritis was still something I could handle. It was a fact of my life – I didn’t know my life any other way. Then I became a mother, and the disease implicated more than just me.
The flare ups after the birth of each of my daughters (Rose and Hazel, who are now seven and four) were severe and long, and brought my challenges to a new level. During various steroid treatments, I had to pump to keep up my milk supply because I was not able to breastfeed Rose while on the medication. This was an extremely challenging task, especially with the other difficulties I was facing. After Hazel was born, it got to the point that my husband had to help me get dressed in the morning. Some days I could barely walk. The emotional and physical demands of caring for a baby and a toddler are difficult enough without severe pain and disability. I could get out of the house with the girls some days, but I felt so much guilt for not having the energy that they wanted from me. Rose was four at this time, and she would often ask me to chase her in a game of tag. “I can’t run because of my knees,” I’d tell her, apologetically. She wouldn’t miss a beat and would respond, “Then run with your arms, Mom!” And so, I’d walk after her, pumping my arms fiercely at my sides as if I was in a sprint (yet with no hope of actually catching her) and she would shriek in delight and run away from me anyways.
I knew, though, that running with my arms wouldn’t help me if, for example, one of my girls ran towards a busy road. I was also so exhausted (physically and mentally) from living with so much pain. My rheumatologist encouraged me to begin a different medication, a disease modifying anti-rheumatic drug (DMARD) that would suppress my immune system and thus slow down the effects of the disease; but these injections meant I would have to stop breastfeeding Hazel much earlier than I had intended. I loved breastfeeding and I knew she would be my last baby, and so this was very heartbreaking for me. In the end, ceasing to breastfeed was a sacrifice that both Hazel and I had to make so I could continue providing for her and Rose in other ways.
The guilt and sadness I felt during that time likely would have been lessened had I known how this treatment would change my quality of life. After a few months, I was able to lightly jog! And so, one day when Rose asked me to chase her, I did. It was the first time she had seen me run in her life. She stopped, held out her arms to me, and yelled with so much pride, “Mom! You’re doing it! You’re running!”
This medication increased my mobility to a level I hadn’t had in years. This was a revelation – I hadn’t realized how restricted I had been in my body and my mind until I felt relief from it. This DMARD hasn’t eliminated my symptoms, of course. I still have pain-filled days, daily stiffness and decreased mobility in my joints, but if I maintain my diet, exercise and physiotherapy routines, I can go weeks feeling good. The girls still get excited when I am able to jog along beside them. It brings me to tears that, just as much as they share in my joy, they also share my pain. Sometimes the pain is too great, and I can’t help but cry. And though I try to hide my tears, Rose has cried along with me, not knowing that in that moment my tears are also shed because of the guilt I feel that she too carries this burden.
It's not fair to them, but nothing about this disease is fair. The only thing I can do is adapt to the challenges that I face. I read a quote by Marcel Proust once that encouraged me: “Infirmity alone makes us take notice and learn, and enables us to analyze processes which we would otherwise know nothing about.” I am thankful for the way that living with this disease has forced me to think differently and positively in challenges, more creatively within constraints, and to persevere through pain. When I can’t run, I run with my arms.