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.
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.
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