It’s my birthday!
While I am having a shockingly lovely day, I keep finding myself lost in thought, reflecting on this last year.
Oof.
Almost exactly a year ago, my mom was diagnosed with cancer. It’s still so sharp, the memory of sitting on the couch, waiting for her to tell me why I drove 30 minutes to talk (something we do daily on the phone). The silence. The pain and terror on her face. And then… “I have breast cancer.” My heart stopped, my ears rang, everything seemed stuck on repeat.
That Passover was spent with family, desperately trying to distract from the knowledge that her biopsy results could arrive at any minute. And then they did. HER2 positive. Aggressive, but treatable.
For my mom, it’s been a year of fear, grief, pain, chemo, impossible decisions, hair loss, weight loss, job loss…
Being the only one of my siblings in the same state as my parents, yet being sick and overwhelmed myself, was an odd dance. My sisters were so upset that they couldn’t be there for my parents. I desperately wanted to pour everything I had into them, but both they and I knew that the last thing any of us wanted was for me to burn out.
And I was also just starting to work again. In January of last year, I lost my job. I had to figure out unemployment and reevaluate my self-worth. But mostly, I was so grateful to not be working anymore. My health had hit a wall and I was terrified of doing myself permanent damage because I was unwilling to slow down. I still remember, when my bosses called me in to break the news, I laughed. I was so relieved to have a reason to rest.
And boy did I rest! I ramped up my exercise regimen, I made art, I nurtured a social life that I was proud of for the first time in my life. I cooked and cleaned and looked for jobs that would be a good fit. I volunteered as a tutor and substituted for teachers. Ok, it wasn’t exactly a vacation, but it was the healing that I needed so badly.
My brain cleared of fog and my body cleansed of fatigue, I could be the person I hadn’t been in so long. I was creative, smart, energetic… I began to dream. Thoughts of “I wish there were an app that could help me in my specific health journey” became “I wonder what it would take to develop an app.” I found myself wanting to write all the time. ME, who was terrified of writing in high school and literally dropped classes in college if there was a lengthy required paper at the end. Somehow, with the brain fog lifted, writing no longer felt like torture. It became an outlet for the complicated ideas and feelings that had been brewing, trapped and churning, for years. My journals turned into blog posts, and my blog grew until I was receiving amazing feedback! I was able to dream and write and paint and tutor uninhibited because I had no one to answer to but myself. I was acting not out of obligation, but because I felt compelled in my soul to do what felt right.
Months later, right before my 28th birthday and my mom’s diagnosis, I knew I was ready to work. I advocated to turn my volunteering into a part time job. A friend of mine who had been following my blog suggested I use that skill for income, and helped me land an amazing blog-writing job for a company serving chronic illness patients. A college pal noticed my art and asked if I would collaborate on a book he was publishing. The Social Impact Practicum at Dartmouth offered to make my app a reality. I continued teaching art part-time. I went from working two hours a week to thirty.
And then shit hit the fan.
The week before my mom’s diagnosis, my sister got a job. With two toddlers and a husband who works more than full time, working had not been particularly feasible. But this was her dream job, and she really missed working. So she took it and I was so excited for her!
But then the diagnosis came, and with it the stress and traveling. All of that combined with the new job was a lot on my sister’s autonomic nervous system and she began exhibiting symptoms of Postural Orthostatic Tachycardia Syndrome.
In theory, this was nothing new. My sister has had mild POTS symptoms for as long as I have. But it never got in the way much. This was different. She couldn’t make it through the day at work, some days couldn’t get off the couch. As the weather got hotter, her condition worsened, as mine always does in the summer. Then new symptoms started popping up -- migraines, double vision, vertigo, crushing fatigue and malaise. Added to the sudden increase in joint subluxations, it became clear that my sister had developed the full trifecta that I’d been living with -- EDS/POTS/MCAS.
I was heartbroken. She was clearly suffering. I knew the pain she was experiencing and couldn’t fix it. I couldn’t even help her with the children or the job she loved so much. She took a leave of absence, and eventually quit. She gradually spiraled into the type of rock bottom that chronic illness can bring.
And still my mom had cancer.
That summer, I noticed an email with a job opening in Burlington. On paper, it was my dream job -- art teacher in an alternative school, close enough to bike to. But I had three jobs already that I loved, there was no way I’d take on a fourth! Just for the hell of it, I applied and got an interview. I went in confident, knowing that I really didn’t have to worry, since I probably didn’t want the job anyway. By the end of the interview, it was clear that they wanted me, that I was excited by the job, and also that I was not interested in working that many hours. So, with nothing to lose, I told them I loved the idea but that I really couldn’t take it. On the off chance they wanted to pare it down to a few hours a week, well then I’d think about it…
I didn’t honestly think they’d bite, but a day or two later, the director called to offer me just that -- the dream job, but cut down to ten hours a week!
So, by August, I found myself with four jobs, an Etsy shop, a commissioned book cover, an app-in-progress, a mother in chemo, and a sister heading down a path I’d finally clawed myself out of. I was ten pounds heavier, struggling to accept my new body, and failing to keep my weight from increasing; on an SSRI, but no longer needing weekly therapy. I was biking to work, taking barre classes, and feeling stronger than I’d been in years.
Sometimes when I think about this past year I can’t wrap my head around the fact that it was just one year. My life now is so decidedly different than a year ago. And in the last few months, my mom finished her chemo (although her other treatments continue), recovered from remaining surgery, and retired officially. My sister’s health has begun to improve, thanks to the diagnosis and treatment of MCAS. She was even able to start back up part-time at her job. The inherent stress of my new jobs finally tapered and I hit a pretty great flow -- feeling confident, influential, but also not too relied upon in any one job (a comforting feeling when illness looms over you).
And then, of course, came COVID.
The foods and medications my sister and I rely on became scarce and tougher to get. My mom being immunocompromised took on new weight. My three teaching jobs were turned on their heads. My writing job -- which had just turned into a more time-consuming manager position -- suddenly became more complicated. The gym class that had been keeping my joints the most pain-free they’d been in years was canceled. We celebrated Passover from my couch, connected to family via Zoom, unable to get the matzah meal and organic chicken that I could eat without getting sick.
So here I am, 29, but feeling several years older than 28. I have a much clearer picture of where my life is headed, and yet have no idea what my next week or months will look like. I am no longer terrified for my mom or sister or my own health, but feel the weight of all three in the back of my consciousness. I am working and earning more than I ever have before (although still not much :-P) while my husband is unemployed in the service industry.
I like to reflect each year on how I’ve grown and what I’ve learned. This year feels a bit overwhelming. But I also feel incredibly proud of how I’ve come out the other side. I do want to note the tremendous privileges that supported me this year -- I was able to receive unemployment checks to keep me afloat. I have a husband who made enough to pay the bills when unemployment couldn’t. I had the education and experience to be able to confidently move back into the workforce once jobs opened up. I am able to afford the $600/month treatment that I take for MCAS. I live in an area where duck eggs are easy to come by (a staple for my health) and where quarantine can look quite beautiful. I have a number of safety nets and a decent amount of luck.
That said, I can’t stop thinking about how different my outlook on jobs is than a year ago. I have been rejected enough times to know it’s not always easy. But this year, I did something different. I created and taught and wrote when it felt right. I played to my strengths. I did what I felt I was meant to be doing, even though it didn’t bring in income or the type of societal “worth” I’d always felt pressure to obtain. My uncle always told me to follow my joy. And I did! Not only that, but I listened to my body’s wisdom. I had no one to answer to, so I became much more assertive and simply did what I knew my body needed, when it needed it. I learned to not fight my daily urge to nap. I gained so much confidence, and as a result gained the respect of people around me. I have the amazing jobs I have today because I didn’t do what I thought I should do. People saw me at my best, using my strengths, exuding my passions. I found jobs to fit me, rather than trying to fit myself into abled capitalist boxes.
I dunno. It’s been a really fucking weird year, and I’m both terrified and stoked for this next year. Hopefully it’ll be a smoother ride, but I feel so grateful to have come out the other side of this one a better, happier person.