Life is Not a Rehearsal

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My brain goes nonstop. I don’t know how to just not think or worry about things. When I’m sitting in traffic or waiting on the elevator I’m worrying. When I’m suds-ing up my hair in the shower or waiting for my toast to toast I’m worrying. Worrying about things I have to do or maybe didn’t do as well as I should have. I worry about things yet to come and decisions I need to make. I worry about my friends and my family and my aging parents. I worry about my job and society and the environment. It never stops. It’s been this way for as long as I can remember. It’s not uncommon for chronic illness to cause anxiety as a result of the unpredictability of the disease course or symptoms. For those of us who experienced anxiety prior to diagnosis, it’s a double whammy.

At its most basic level, anxiety is a response to stress. Everyone has anxiety sometimes. It’s healthy. However, in some individuals (me!), it becomes excessive and starts showing up in everyday situations, even ones that are not stressful. It often repeats in a vicious cycle. You are anxious. You know you’re anxious so you try to stop. You can’t. That causes more anxiety. The cycle repeats and intensifies.

I’ve experienced anxiety for as long as I can remember – even as a kid. I was nauseated on an almost daily basis as a result. It wasn’t until later in life that I realized that people who didn’t fear and stress everything actually existed. I had always thought sanity and levelheadedness were a facade people used to seem normal. Once I recognized that anxiety was the cause of the tightness in my chest, the dizziness, the nausea, and the intense acid reflux, I began the long and arduous journey of attempting to overcome it. Not far into my journey,  I experienced what doctors call clinically isolated syndrome and was diagnosed with a rare autoimmune disease called Transverse Myelitis. It totally changed my world. My anxiety kicked into overdrive. I was in constant fear that it would happen again or that I would wake up one day and not be able to walk. I was hospitalized and recovered well (physically) except for continued numbness and weakness in my right hand and a sensitivity to heat.

I was reminded of life’s unpredictability on a daily basis.

Over the weeks, months, then year that followed, I read everything I could find about the disease as I recovered. I joined support groups and befriended others in the same boat. As I was forced to slow down, I began to see the diagnosis as a sign that maybe I needed to readjust my view of the world and the people in it. I started taking time to really see and experience things instead of constantly “doing”. I had a new appreciation for life. I started watching the sunset every evening and relished in the beauty of the sunrise on my way to work. I slowed down and started enjoying life. I started eating better and getting fit. I was thankful for the second chance and I wasn’t going to screw it up.

After the initial shock of my diagnosis wore off, I got a second opinion. Then a third and a fourth. I had test after test performed and all of the doctors told me the same thing: “you will likely be diagnosed with MS within the next few years but right now you don’t meet the criteria.” Wait. WHAT? I’m just supposed to wait until I have another flare up and hope that I finally meet the criteria so you can prescribe treatment, all while risking more permanent disability? That was exactly what the doctors said. All of them. The waiting game started.

My anxiety returned with a vengeance and intensified with every new day. The chest pain, the reflux, and the nausea came back. I started having trouble sleeping. I drank more. I ate more. I cleaned more. I worked more. I did as much as I could in an attempt to satisfy the indescribable need for something that I felt like I needed. A little over a year later I had that second flare-up and temporarily lost the use of my right leg. I relied on a cane for the better part of a week and received at-home steroid infusions. My diagnosis changed to MS and I started disease modifying drugs. My recovery this second time around was much slower and I was left with weakness in my right leg and slight foot drop. However, the worst of the side effects involved cognitive deficits. My brain stopped working so well. I lost the ability to multitask. I couldn’t focus. I forgot how to spell words. I used the wrong form of a word or the wrong word altogether. I was a mess and this only added to the anxiety.

Today, almost 6 months after my last relapse and almost 20 months after my initial relapse, I’m doing better than I thought I’d be at this point. My brain is slowly figuring out how to work around the fried portions and I’m beginning to feel more like my old self again. My thoughts still frequently get jumbled. I still forget words or the spelling of words. My short term memory is unreliable, but I’m doing it. Probably most importantly, I’m working on the anxiety. I am constantly working on ways to recognize and reduce stress and anxiety. I still flush at the thought of being the center of attention and get clammy when waiting for the doctor to come into the room but I’m getting better.

The single most valuable piece of information I’ve come to know over these last 6 months is that anxiety isn’t just about worrying about the future. It’s about your desire to control what you fear. For me, that’s the unknown. As I learn to let go of my need to control certain aspects of my life, a whole new world opens itself up to me. Worry pretends to be necessary but serves no real purpose. I can’t control how many more relapses I have or what disabilities I’m left with but I CAN control how I live my life in between and around those relapses and disabilities and I’m getting better at it one step at a time. In the meantime, if life knocks me down, I can always roll over and look up at the stars. 🌠

Life is not a rehearsal. Don’t be afraid to live it.

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