The Upside to Illness

I’m going to focus on the present for this post. That last post was extremely emotional and I need some affirmations, to slither away from the darkness of when this started. I’m going to admit that I’m having a rough patch. It feels like I’m always having a rough patch but some times are rougher than others. I was very ill every morning over Christmas break and the semester started two weeks ago and it has been tough. All the signs of when things are at the worst are there: too nauseous to eat so I’m losing weight, when I can eat I don’t put on any weight, terrible GI issues, wake up in the morning hurting all over and feeling like my 20 lb cat has been sleeping on my chest all night, fighting an all-out war with my frenemy gravity, moments where I wonder if I should head to the ER. I started taking Florinef in April last year, and I don’t like it. I avoided that drug for a long time but I was desperate last April and on medical leave. I tried to cut back on it and it didn’t go well. Florinef, you dirty whore. I am back on it and already doing better. But as my husband says, “this is your lot.” Taking pills and dealing with the side effects is my lot. Moving on.

The “Good Enough” Lifestyle:

I have seen others with chronic illness/spoonies talk about the upside to illness, what it can teach you, what you gain. In some ways, dysautonomia/POTS has been a blessing. Number one, it saved me from grad school. I would’ve kept pushing myself and suffering through something that made me incredibly miserable if I hadn’t gotten ill. Thank you POTS for kicking my academic habit for a bit. I’ve always had this blind ambition, deadly perfectionism, and a hyper competitiveness. These personality traits have gotten me far in life but I abused them. One of my doctors in Reno told me about the “good enough lifestyle”—do the best you can, try your hardest, and accept that it’s “good enough.” I’ve had to reevaluate how I measure success. I look at the bar I set of all the things I know I could do with a functional body and all the things I want to do and then I look a little lower at the bar of what I am capable of. Only recently have I started accepting success at this second, lower bar. Not long ago, I was still measuring success far above what I was actually capable of. I was trapped in unrealistic expectations and mind-numbing frustration. That second bar is good enough. Some days, just the fact that I drove myself to work and was a warm body standing in front of my students is success. 

Value:

Part of that drive was never ever taking time off and I neglected my friends, family, hobbies, myself. I could never just slow down and enjoy life. I’m still learning this lesson but I’m getting there. I’ve had to reevaluate my values also. My value doesn’t reside only in work and achievement. I look at my husband napping on our couch spooning our cat and that fills me with bliss. I watch crappy tv with my parents and know that time is valuable. I play board games with friends and destroy them (with love and tenderness). We taunt each other and ridicule each other’s mothers, and it’s brilliant. When I make hard choices to protect my health, I see value. It’s cliché, but I learned a good, difficult lesson the last two years that was invaluable: focusing just on a career is a zero-sum game. I am already surrounded by what fulfills me. 

Everyone Struggles:

I’ve always been really resistant to tell people about my illness or the full extent of it. I try to “pass” as a normal functioning human. Dysautonomia/POTS is an invisible illness. There are some benefits to this because I don’t want people to look at me and just see illness, but now that I use the cane it’s no longer invisible. I have gotten a taste of what it’s like to have a disability and a new appreciation for the struggles of the disabled.  I’ve gotten better at talking to people about my condition and explaining what I need. I use the cane almost all of the time so now people ask me about it. I put off getting that cane for far too long because I didn’t want to “come out.” Once I got the cane, that was over, and I was shocked to see that it wasn’t as difficult to talk about it with people as I expected. Something amazing happened even. As I tell people about my condition and what is happening, they reveal their own health or personal struggles, struggles they would normally never reveal. Even strangers do this. I’ve been given a window into the struggles of those around me and it’s been eye-opening to say the least. I know that I am not alone in the struggle of life. It’s been a blessing. 

The Good Fight:

I look at people who have overcome so much: cancer, a major accident, death of a loved one. I have heard some amazing stories of struggle from students over the years. My struggle pales in comparison. I look at them and wonder “how were you able to fight? What keeps you going?” I guess you have to decide what to fight for. I know if they can do it, I can. I fight for the life I know I could have, I fight for my husband, I fight for my friends and family, I fight for all the things I still want to do in life. When I started having the issue with walking and my doctors said they think it’s unrelated to my condition and is something else, I wanted to give up. I wanted to just scream at the absurdity of it all and quit. I went back to my default setting of fear, negativity, and denial. What a waste. I can keep up the good fight, whatever it takes. Acceptance is half the battle, and the fight lives on. I know I can keep going because that’s what I’ve been doing all this time. The fight has become second nature and, for that, I am grateful. 

Here’s a great TED Talk about the concept of the “closet.” Everyone has a closet to come out of. Thanks for helping me come out of mine: http://www.youtube.com/watch?v=kSR4xuU07sc

The Beginning

I have been contemplating a blog for quite some time. I read the blogs of people with dysautonomia/POTS and it helps my feelings of isolation dissipate. This isn’t a space for whining: it’s a space to interpret, fit pieces together, and make sense of how drastically my life changed over the last few years

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Have you ever been just minding your own business and then one day woke up in a different reality? I read Kafka’s “Metamorphosis” in high school and it left a powerful impression on me. Kafka wrote it because of his own insecurities about being a burden on his family. I think about this story often because one day I woke up with a different body. It was actually a more gradual process than that but when I look back on what happened, it feels like one morning I slid out of bed in a grotesque body with a broken nervous system, never to return to my former skin.

In 2010, I made the dumbest decision a smart person could ever make: I decided to get a PhD in literature. My idealism was not proportional to my privilege or means, but that’s besides that point. My husband and I moved from California to Nevada to start a new life. We had never left home before, and it was a new challenging adventure for us. Moving to Reno wasn’t a smooth ride. My husband was in a serious motorcycle accident, and we both struggled to adapt to the new environment. Once I started coursework and the indoctrination into the academic industrial complex, I knew I made a mistake. I knew it on day two of classes. I love teaching and I loved my previous job teaching at a community college. The academic glory of spending an entire life dedicated to research only 7 people in the world are interested in wasn’t for me. As the stress of working 14 hour days seven days a week for months straight and the cognitive dissonance of pushing myself to “want” this dream, my health started deteriorating quickly. The timeline gets a little murky for me here. Ever since I was seriously injured in gymnastics and later a car accident, I haven’t been in good health. I got out of PE in high school because I was a broken, old gymnast at 13. I would later be diagnosed with fibromyalgia in college and battled some health issues and constant pain. But I still had a full life. I look at pictures of this former self—hiking, swimming, standing and talking, breathing without struggle, singing, traveling—in disbelief. In early 2011, I made some changes with my medications, had severe insomnia, and experienced more anxiety than a human can manage, but we’ll never know what exactly the catalyst was. The stress from getting a PhD won’t give you dysautonomia. They would need to put that in the brochures and provide hazard pay if that were the case. Dysautonomia was waiting for me at age 30 no matter what I would have been doing. By April 2011 something was very wrong. I was very dizzy constantly, shaky, suffering severe GI problems, losing handfuls of hair, weak, I lost 15 pounds. The details aren’t pretty and I’ll spare you. A low point at that time was crying uncontrollably in the library bathroom, but I doubt I was the first or last PhD student to do that.

In May that year, I went to the hospital one night because my heart rate went up to 170. My husband said it was probably higher than that actually. I had my first universal dysautonomia experience that night: the ER doctors told me I was having a panic attack, gave me an Ativan and some fluids, and sent me home. Almost every dysautonomiac experiences this. It’s a rite of passage. Even with a diagnosis now, if I had to go to the ER tonight, the same thing would probably happen. Going to the ER with dysautonomia is a precarious situation because they won’t know what it is and they’ll struggle to interpret your symptoms, often invalidating the patient by calling it a panic attack.  I put off getting doctors in Reno so by the time I was ill, I didn’t have any there I could go to. I set up an appointment with a primary doctor immediately; we’ll call him Dr. Z. I will discuss my adventures with that doctor at length later. He told me it was just stress. He offered me more pills and told me to just relax. 

The health issues continued that summer but I pressed on, determined to make it all work. I was teaching a summer class with a holter monitor attached under my clothes monitoring my heart rate. I was desperately trying to pretend nothing was happening. Once the fall semester started in 2011, things started to go downhill very quickly. The GI issues became so severe that I was unable to eat or leave the house comfortably, I was having trouble standing while I was teaching, and I felt extremely nauseous, tired, and ill all of the time. I couldn’t put my toothbrush in my mouth without feeling like I was going to vomit. Despite this, I was still struggling to get to my classes every day and teach two sections of freshman English. No one had any clue what was happening except that I looked emaciated. I remember very clearly the day I knew I could no longer live in denial. I was supposed to go to campus late one night to see a Geography professor to ask her to be on my committee. Before I left, I was home thinking “I’m not going. This is over. I’m done” I went to see her anyway, asked her to be on my committee, but I knew I would never see her again. I went home that night knowing my world had completely caved in on itself. 

A few weeks past and I was no longer able to move and I had lost 20 pounds over two months (I weigh 130). My psychiatrist, who I owe my life to even to this day, put me on medical leave, the day of my parents' 20^th anniversary. That day was the lowest point in my life. I had no idea what was happening, but I knew the path I was on wasn’t sustainable. I emailed the graduate director in the department and all of my instructors. They were incredibly kind and allowed me to take incompletes. The college, however, promptly sent me a bill to immediately pay back all of my funding. 

I started believing that doctor, telling myself it was just stress and I would recover and get back to my life. But in my heart I knew the issue was much more profound than this. I was determined to get my life back. I made a promise to myself that one year later I would find a way to be happy and healthy again. I eventually finished my incompletes while completely infirm but left the program, I left my friends there, and I convinced my husband to move back to California. I couldn’t leave the house in Reno without being reminded of my former life, of feeling like a failure (a trait essential to academics), of trauma. I had started to make some progress with doctors there but not much. Right before we moved, I saw a second cardiologist who was the first one to really figure it out and not tell me I just was just a hysterical woman. I sat in that office on a very snowy, icy day with a blood pressure reading of 75/52 and resting pulse at 135. A few doctors had put me on medications that were making my symptoms worse. I’m still not sure how I drove myself to that appointment. The cardiologist said the words “autonomic dysfunction.”  I had some possible answers, and I had to make a new life. I packed my bags, my cats, my books and went home.

 

The adventure continued, which I’ll discuss later. I would go on to not work for a year and go to many many many many doctor appointments, submit myself to many many tests, and struggle to find an answer. Anyone who suddenly gets a chronic illness must look back constantly wondering “when did it start? how did this happen?” I look back on when this began with intense sadness. I try not to think about that time much, but recently new symptoms and issues are presenting themselves and I keep hearing “I don’t know” from doctors, so I feel a little lost on that ocean of illness again, rudderless and without a compass, as I did at that time. I feel desperately sorry for that girl that I was in 2011. I also look back at this time and feel triumphant. I honed an important skill during that battle that I still rely on every day: motherhumping, hardcore perseverance. When all hope is lost, persevere. Shine on another day.