Brain Waves: For better or for worse

Brain Waves: For better or for worse

Nina Riffaud, Contributing Columnist

I never was a morning person. As a child I was called ‘cranky’ because, like many adults, I refused to speak to anyone before I had at least one cup of hot chocolate. I never knew how to put it into words as a kid, but I was always aware something with my body was a bit off. I never seemed to have the ability to just roll out of bed and go. I always had body aches; my mom called them growing pains well into my teens when the only thing that was growing was my hatred for mornings and rainy days. That all changed during my senior year of high school when I woke up one morning and could not walk. Then, I was truly afraid.

For six months I remained largely confined to my home and bed as my parents and doctors tried to figure out what was wrong with me. MRIs, painkillers, muscle relaxants, antidepressants, anticonvulsants, epidural steroidal blocks and countless vials of blood. So many doctors ran so many tests — and I could do nothing more than hope for an answer. I was certain that something was happening; it just lacked any visible evidence. I wanted a diagnosis. Then teachers would stop looking at me like I was lying when I told them I missed class because I couldn’t get out of bed. Friends would finally understand that what I felt was real and not just in my head. I could be cured.

I finally got my diagnosis: Rheumatoid Arthritis, Ehlers-Danlos Syndrome, Raynaud’s Phenomenon. My first thought was, “was that even English?” I felt disoriented and confused. As my rheumatologist explained my options for treatment, he repeatedly used the word ‘chronic.’ I had no idea what he meant, but the cure I was expecting didn’t exist. Autoimmune issues cannot be cured; medication simply masks the symptoms.

“We can’t make you healthy, but we can try to make you feel better.”

It is said that no one can remember physical pain. I can personally attest to that. But the utter dread I felt when I learned that this battle was going to be forever is something that I still struggle with. Like some nightmare monster, the dread rises not only when I dwell on it but also of its own accord. All I have to do is replay those words in my head.

Forever is a lifetime and I am not ready for it. In some ways, my RA feels a bit like an arranged marriage: I don’t know my partner, someone else picked him for me, I am certain that I hate him, and I have to stay with him ‘until death do us part.’ It’s already time for a divorce.

It is now almost two years since the diagnosis, and I still have daily pain and challenges. My doctor tells me that the hallmark of RA is the ebb and flow of symptoms. While these issues can at times keep me in bed for a day or feel insurmountable, I have been learning to manage them.

At first glance, managing life with a chronic illness seems not that much different than managing life without one. It requires a delicate balancing act of diet, exercise, rest, stress control and, of course, medication. The difference with RA, or any other chronic affliction for that matter, is that the condition is itself evolving and any deviation from the discipline can cause immediate and often significant consequences. There is no such thing as a carefree existence anymore. The New Me, the owner of my diagnosis, puts on a smile and works to move forward.

While my RA changed the way I had led my life for seventeen years, changing my priorities and my day-to-day activities, it also forced me to slow down. In doing so, RA has allowed me to become more reflective. I now take a further view of things. I know that I am far luckier than many and that there are far worse conditions that I could have been ‘married’ to.  I have a strong support system of friends and family and I am constantly working on my mental attitude. Every day I am learning how to live with RA, my lifelong companion. I am doing the best I can with the hand I’ve been dealt. I know that as the years go by, my relationship with RA will become more familiar, hopefully more predictable and ideally more comfortable. I guess I’ll learn as I go. After all, I am just married.

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