Recently a friend and I were discussing job interviews and the ridiculous questions asked during such interviews, such as being asked to list your weaknesses. Just once, I’d love to hear someone answer honestly, like “I’m a dirty motherfucker”, or “I don’t work well with others because I’m mean and I smell funny.” However, the common strategy is to present weaknesses that can be turned into strengths, such as “I’m too dedicated to my work”. This conversation sparked thoughts about weakness on a more personal level.
In the job of life, I don’t doubt that my greatest weakness is postural orthostatic tachycardia syndrome (“POTS”). Sometimes I feel it holds me back from greatness, from climbing mountains, both literally and figuratively. Certainly I don’t mean to suggest that POTS is my only weakness, just my greatest. However, I have never been able to switch lenses and view it as a strength. How does kryptonite become an asset? I supposed I could argue that being tired all the time has turned me into an excellent napper. Or, that brain fog makes me rather entertaining with my nonsensical ramblings. But that’s not strength. I crave that unwavering strength buried deep in your core that you have to reach down and sink your claws in to pull it out. The kind of iron pillar upon which your identity is anchored.
You know what I’m talking about.
And although I have searched, I can’t find how to turn this weakness into a strength.
My mom was in town to visit last week for testing. As you may remember, I have previously mentioned that 2015 was a particularly difficult year for me, for many reasons, some of which I haven’t shared. I hope you don’t mind if I share one now.
A few months ago, my mom was diagnosed with a very rare illness called progressive supranuclear palsy (PSP). It’s a degenerative brain disease like Parkinson’s Disease, but if given the choice, you’d choose Parkinson’s 10 times out of 10. It’s like Parkinson’s evil cousin.
I haven’t shared my mom’s diagnosis with many people because I’m still struggling to make sense of it. I’m already prone to existential crises, and this one’s throwing me for a fucking loop. My mom has always been the healthiest person I know, so her diagnosis serves as a harsh reminder that I don’t understand how the world works.
This blog was never intended as a means to discuss my personal life outside of illness, but instead was started to provide a glimpse into a life changed by illness, philosophize about the meaning behind both, and to connect with others in similar situations. I don’t intend to change that, but I hope you will bear with me as I discuss my mom’s PSP in the occasional post as it effects my illness.
We’re trying to get my mom accepted into a clinical trial for a new drug to treat PSP. Luckily, the center conducting the trial is located here in southern California, so last week I took her to a handful of prescreening tests to determine her eligibility for the study and am happy to report she was invited to participate. Over the next 7 months, she will come here regularly as part of the study. It was wonderful having her stay with me for a week, but it created an entirely new role for me: that of caregiver.
As my mom’s physical control and cognition declines, I’m humbled by the opportunity to help her. Taking care of another human being has to be one of the most difficult jobs in the world (shoutout to all you moms out there!), but also one of the most rewarding. I admit to being ignorant of the purpose of life, but suspect it must lie buried somewhere in the threads that weave a community together. After all, none of us is an island.
However, I have serious reservations about how good of a caregiver I can be when I, too, occasionally require caregiving. How am I supposed to get a wheelchair for my mom at the airport when I require a wheelchair to roam the airport, too? How do I have her sit down and wait while I stand in line at the testing center or pharmacy when I can’t stand for long? Being a caregiver requires mountains of energy that I don’t have.
I have serious reservations about whether I can do this, and what I can possibly offer her. But over the past week, I have come to the realization that through my experience with POTS, I might have something to offer that other friends and family cannot.
POTS and PSP aren’t the same thing, and I don’t mean to trivialize PSP by suggesting they are. They’re not. PSP is a million times worse and my experience will never compare to the gravity of hers. I will never be able to guide her through what it’s like to have PSP.
But I am in a unique position to be able to advise my mom about what a punch biopsy is, how to prepare for an MRI, how to navigate the medical and insurance industries, or what to expect from an infusion, or where the heartache over a changed life is rooted. My weakness has allowed me to be transparent, to talk openly and honestly about how fucked up and beautiful and harrowing life is; to commiserate over what it’s like to be a prisoner in your body; to share how illness doesn’t give a fuck who you are or what you wanted to do with your life or where you thought you’d be in 10 years; to discuss how to traverse the stages of grief and come out on the other side, broken and steadfast and beautiful, and more your true self than you have ever been.
And, yes, how to find the strength in weakness.
I still don’t know that POTS is a strength in my new role as caregiver, but I think I might be the right person for the job.
“You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.” – Cheryl Strayed
Smell ya later.