Is This Courage?
It’s been a tough week. After getting my hopes up that the third rheumatoid arthritis drug added to my regimen might be heading me towards remission, I’ve had a bad flare. It hurts to walk, it hurts to stand, it hurts to sit, and it hurts to lie down. At night I’ve needed a muscle relaxer and painkiller in order to fall asleep, and a couple of nights I’ve had to add a sleeping pill to boot before I was able to finally fall asleep. In the mornings the drugs and the rest have brought my pain level down from a seven to around a four on that ever-popular 10-point pain scale, yet my head has felt full of cobwebs from the hangover of the prescription drugs. My rheumatologist put me on a round of prednisone, and now on top of feeling groggy I feel like a jar of fireflies has been emptied into my cobweb-laden brain, flitting and buzzing from place to place inside my head. My skin feels like it has little electric currents running under it, making me feel jumpy and on edge. All the drugs help the pain and inflammation, but the side effects add on another layer of discomfort and unease. I feel like I can’t win with them, and I can’t win without them.
When I have a hard week like this, my life doesn’t stop. I have a three-year old son and five-year old daughter to care for, and recently my part-time job disappeared and the only option I had in order to continue working in my school district was to go full-time. I am a behavior specialist who works with high school students with problematic behaviors. It’s a hard job. My days are very busy, with few breaks. I eat lunch at my desk, and sometimes I don’t get a chance to eat it until 3:00 in the afternoon. At the end of the day I go straight from work to pick up my kids from their afterschool program. By the time we get home, it’s already time to start dinner. It’s exhausting.
Since I went full time a few weeks ago, I’ve felt like I’m running on fumes by the end of every day. Once my flare happened, I couldn’t keep up. I’ve been able to make it through each work day, but by the evening I’m in so much pain I’ve been unable to do any cooking or cleaning, and I’ve not been able to do half of the things for my kids that I’m used to doing. My husband has been doing the majority of the evening work: fixing dinner, cleaning the kitchen, bathing the kids, getting them ready for bed, and reading their bedtime stories. He does this without complaint, but I can tell how tired he is. He wakes up at 4:00am every morning to return work emails before getting the kids ready in the morning, taking them to school, and then putting in a nine or ten hour day running the business he owns. Watching him take up all of my slack, while praying that my body will return to its non-flare state so that I can once again do the things I typically can do, I have felt defeated.
This flare has left me feeling at the mercy of my confused immune system. I feel powerless, vulnerable, and like I have very little control. The other day, after a slow morning of getting ready for work while experiencing the pain of standing on the tile floor of my shower and of getting dressed, I was finally ready to go out the door. Pouring my to-go cup of coffee, I told my husband how much I appreciate all he’s doing. He then said to me, “I admire your courage.”
I was stunned. Courage?
I replied to him, with tears welling up in my eyes, “Is this courage?”
I usually associate courage with heroic deeds involving people putting their lives on the line to help others or to stand up for their rights. I hardly felt heroic. The night before the pain had gotten so intense that I cried in front of my children while I waited for the heating pad and painkiller to kick in. The last word I would have used to describe myself is “brave.” Yet, when my husband said that he admired my courage, it shook me to the core, and has given me pause to reflect.
Maybe it is courageous to be in a lot of physical pain, yet get out of bed anyway to get ready for a long day of work I’m dreading. Perhaps it is brave to do whatever it takes to get through a workday, and then another, and then another, so that my family can have health insurance and so that all of our bills are paid. When I’m in a flare, I’m unable to do all that I want to do for them, but I’ve always done whatever it takes to make sure that not only are all their basic needs met, but that they get plenty of hugs and kisses and “I love yous” and “I’m proud of yous” too. Once I arrive at my job, I do whatever it takes to make sure that those struggling students get all the support we can provide, even on the days when I feel terrible. As I reflect on all of this, I realize that it is possible that just making through a day feeling the way I’m feeling may in fact be courageous.
RA is a powerful opponent. Insidious, it resides inside my very body, turning my own immune system traitor against me. I could stop fighting. I could give up. But I’m not, and I won’t. I will keep striving for health, doing all the things I can to support my body’s needs. I will not throw my hands in the air or the covers over my head. Rather, I wake up and face each day and get through it the best I am able. When I take a step back and look at that, it does indeed seem brave. This flare has caused me to look at some of my deficits. Yet, underneath all the disappointment and frustration, I now see that there indeed lies courage.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?