One of the things I’ve struggled with since my health issues reached the point where it became obvious that I could no longer work the number of hours most people can manage (and for a handful of months, not at all) is how to answer questions about what I do.
There have been a couple of other periods in my life during which, due to circumstances beyond my control, I lost my ability to be the type of provider I wanted to be, and few things have hit me in the gut harder.
My working life started at twelve with babysitting, and progressed to a call center doing phone surveys when I was fifteen. Since then, I’ve worked retail, in restaurants, in a group home for pregnant and mothering teen girls in the foster care and refuge system, as a reiki master, childbirth educator, doula, licensed midwife, nanny, freelance writer/ghostwriter, a creativity consultant, an artist, an online shop owner, and perhaps most importantly (time will tell), novelist.
I care about working well, giving my heart and best effort to a job well done, and being a good provider. My identity is pretty wrapped up in those things. Jena and I always had a very clear intention around work. I loved it and she didn’t. She wanted to be taken care of, and I wanted to do the taking care. Our hope was that as I hustled and grew my freelance writing business (which was picking up steam), I would also haul ass to get my other side business off the ground, and finish my novel. I was working insane hours to do all three of those things. I was exhausted, but happy.
And then I got sick. I cut my hours back. And then I got sicker. I cut my hours back more. Once, while working during an inpatient hospital stay, my nurse kindly chastised me. I kindly ignored her advice. When she came back in the room, she placed my laptop out of reach and handed me the TV remote. I wasn’t allowed to walk without help because I was so weak and frail. I turned on the damn TV. Shortly thereafter, I realized that I wasn’t going to be able to make deadlines and produce work of a decent quality. I stopped working.
Unable to bear not working at all, I opened a little Etsy shop, The Playful Planner, knowing that although I probably wouldn’t make that much money with inconsistent making and advertising, it would at least allow me a creative outlet whenever I was feeling up to it, and I might make a little money in the process. This of course, only made me want to do even more, so I got my wholesale license, started a fashion blog and store called The Traveling Magpie Boutique, and took the same approach. I’ve also continued to work on my novel in fits and starts, whenever my health has allowed.
My wife did not end up quitting her job because I was now the sole provider. She ended up quitting her job to take care of me, which meant that now she was the sole provider and entirely self-employed. This may be the only good thing that came out of me getting so sick. Not the part about me not being the sole provider. The part about her quitting her job to take care of me and having to figure out how to be entirely self-employed. She’s so much happier, and she’s doing some really incredible things.
Right now, taking care of my health is sort of my full-time job. I require more sleep than perfectly healthy people. Bodies do their best healing during sleep (even if the worst illness you’ve ever experience is a bad cold, you know this is true). During the twelve or thirteen hours that I’m awake most days, I’m moving a lot more often, but I’m still moving slowly.
My appointments alone are a big chunk of my self-care “job.” My once a week appointments include physical therapy, my pain coach, and my acupuncturist/all around healer. Standing appointments with my family doctor (monthly), and immunologist (every few months) if I’m healthy become more frequent when there are more worrisome things happening. Thankfully, I haven’t required inpatient hospitalization in Boston since last summer, nor have I had to return to the MCAD specializing gastroenterologist, ENT, cardiologist, nephrologist, or neurologist in a nice, satisfying chunk of time. Still, that’s a lot of time spent in appointments.
On top of the appointments, at home I have strengthening exercises, a desensitization protocol, a neurological rewiring (hooray for brain plasticity!) visualization/meditation protocol, and a medication and food trial schedule that I’m entirely responsible for making and keeping.
I’m getting better, but I’m still a spoonie, which means I have to plan my daily activities very carefully. Right now I can handle about 1/5th the number of activities as most healthy, active adults. If I overdo it, I pay for it. And by pay for it, I mean, depending on the degree of overdoing it, plus how my mast cells are acting that day, plus conditions that seem entirely mysterious, I might be out of commission for the rest of the day, or the rest of the day plus the next day, and maybe the day after that.
I get so tired of people asking what I do, and having to explain everything that I just wrote above, that I typically just say, “I’m a novelist,” and leave it at that. It is completely, 100% true, if not the whole of my truth, and just as importantly, with the type of people I don’t typically care to spend much time talking with, it usually ends the conversation.
It was painful to lose so much of my identity almost overnight, and it has been painful to realize that reclaiming/re-envisioning myself would be as slow of a process as the losing was fast, but I’m getting there.
Who and what am I now?
I’m a Jew. I’m a mother/stepmother. I’m a wife. A homebody. An explorer. Insatiably curious. Joy laced with grit. I’m a writer and an artist. I’m a shop owner. Rock ‘n’ roll-cell0-rap. I am fierce. I’m queer. I’m an equal rights activist. I’m someone who has seen it all and very little, all at the same time. I’m a lover AND a fighter. I’m a twin spirit. I’m a really good friend. I’m a champion color-er. I’m sex positive. I’m a novelist. I love my body. I’m a baby person. And a toddler person. And a teenager person. I’m an introvert. I’m a people person. I’m a foodie who can’t eat much. I’m a yogi(ni). I meditate. I’m still learning when to shut up. I’m easy to know and hard to get close to. I laugh easy and cry hard. I am what I am, and I no longer apologize for that.
I wouldn’t say that I’m at peace with the limitations on my ability to work. But it does mean that I’ve been spending more time with the rest of myself. Once I started getting over hating myself for not being able to provide and take care of my wife and kids the way I want to (still a work in progress) and assumed I would, this started feeling pretty cool sometimes. I remembered that there are a lots of other parts of me, and I actually really like some of them.
Silver linings and all that jazz.
When we are no longer able to change a situation, we are challenged to change ourselves. – Viktor L. Franki