But What Do You Do? (And Other Questions of Identity and Self-Worth)

buddhaOne 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

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Time Out of Mind

Angel

Time out of mind. Mindlessness makes time go by in a blink, like you never even get a chance to think, head in the clouds, clouds in your head.

Run, run, as fast as you can. Time had been going by so quickly, I felt like I was losing days, like weeks and months were just blurring one into the next, no rest, no reprieve, nothing much accomplished. But so much was happening.

The whole time, my life was happening, but I wasn’t living here. I was living in the past, missing my daughters, missing the desert, missing life in a real city, where there are things to do after 9 pm, where you can grocery shop in the middle of the night, or grab a coffee or some food at 1 in the morning. Missing my friends, my body free of pain and capable of eating whatever I wanted. The longing. The pain of remembering. The yearning for what once was and what isn’t.

I was living in the future. An imaginary place where my daughters will come to visit, when I can hold them in my arms again, when I can be their mother again. I was living in a recovered body, one that didn’t feel pain or go into deadly anaphylaxis from eating or taking time to stop and smell the flowers. One that didn’t worry every time a guest entered our home that they might be wearing a perfume or shampoo might send me to the hospital, but just smiles in welcome and holds out its arms for a hug. A future body that might take walks, and bike rides, one that will swim in pools and oceans and lakes and ponds. A body that can ride a bike, garden, clean the house, drive a car, grocery shop. A system that would bless me with the danger-free ability to ingest ice cream, candy, a glass of wine, cake, steak, sushi, spaghetti, and so many other things. Yes, a beautiful life in San Diego, with my successful business and booming book sales, the gorgeous home on the beach to prove it. Such an amazing, amazing life. A life not now.

Yesterday I finally realized, after many months of this, that this was what I was doing. It felt self-punishing and gross, selfish and depleting.

I didn’t like it, so I watched a mindfulness movie with the desire to re-center with what I know to be true. While there were parts, big parts, that were so cheesy and laughable that I thought maybe I should just turn it off and stop wasting a perfectly good hour on a Friday afternoon watching it, I stuck it out. There, in the midst of some really lame writing/directing/acting, there were also some gems, the exact reminders I needed about what mindfulness means, what it is to practice, to be alive, present in the here and now.

I got back in my body, the present-tense one that still experiences some seriously excruciating pain, but now with reprieves, unlike several months ago when it was a constant. This body can’t go for long walks, or swimming, or bike riding. It can’t do the grocery shopping or drive the car to run errands, or clean the house when I come back home. There are a lot of things this body can’t do in the here and now, but it doesn’t stay curled up in a ball in bed all day, shuddering and writhing in pain.

No, this body, the real one, the right now one, has feet that usually hurt at a 3-5 on the pain scale, and sometimes drop to 0, 1, or 2 for a few seconds/minutes with meditation and visualizations, and sometimes shoots up to a 6, 7, 8, when I’ve overdone it, or it is almost time for my medications, or because G-d only knows why, but rarely in the 8-10 range anymore. This body goes to physical therapy. It wears socks for several hours a day to desensitize them. It can walk my ass not just to the bathroom, but the living room, and for the first ten to fifteen minutes we’re out somewhere like Target or Joann Fabric before it has to make use of my wheelchair, and it’s grateful for the handicap parking placard my doctor applied for on my behalf through the RMV.

And right now there’s no ice cream, wine, or pizza, but I’m also no longer on a rice only diet. Now I’ve got chicken, rice, broccoli, potatoes, butter, milk, salt, and Ensure.

It’s a good body. It is not my betrayer. It wants to heal and repair. Like all living organisms, it is constantly doing its best to return to a state of equilibrium.

My life, present-tense, is such a good life. It isn’t the life I used to have, and it’s not the future I daydream about, but it’s real. That may be the best thing anyone could ever hope for.

IMG_20160217_155331It feels like it has been a million years since I’ve written anything at all, and even longer than that since I’ve written anything about myself that wasn’t just about my health issues. I haven’t even been journaling privately.

I’ve had every intention of coming back to blogging. I put this blog together and created the about page months ago. Hell, I started writing this post eight days ago and never got any further than the words you just read. I haven’t kept up with a memoir-style blog (unlike the half a dozen or so business and cause-related blogs I’ve had) for about two years now. This was the first long break I’d taken from public writing since I first started blogging fifteen or so years ago.

A lot can happen in two and a half years. It’s cliche, I know, to say that it feels like it was another lifetime ago, but in a lot of ways, it doesn’t just feel like it was another lifetime… it actually is.

Back then, I was living in Phoenix with my three daughters, in a long distance relationship with my soon to be wife. I was the picture of good health. Things were far from perfect. There were some major issues. But I had my health and still believed that love conquers all, and I was happy.

There’s no point in going over all of the in-between. It won’t change a thing. Trust me, I’ve done enough of it in my own head to know.

I’m starting here, with today. I am 38 years old. I live in Amherst, MA with my wife and two step kids (13 yrs old and 9 yrs old). I am slowly easing back into work after nine months off due to health issues. Over the past two years I developed Mast Cell Activation Disorder, acute neuropathic pain, and Complex Regional Pain Syndrome. The combination flattened me for awhile, but I’m fighting back. I refuse to believe that I won’t win.

My three daughters (21 yrs old, 18 yrs old, and 16 yrs old) live on the other side of the country. I miss them terribly. All day, every day. I miss them on a cellular level. They are of my body. Parts of my body are missing. It’s no wonder I developed peripheral neuropathy, the kind that’s numb at first, and then leads to horrendous pain.

Today is my baby’s birthday. I am missing her sweet 16, just like I missed her 14th birthday and her 15th birthday. If you’re a parent and you’re thinking you can’t imagine, you’re right. Imagine a longing that sticks in the back of your throat, grief that fills your belly and chest and steals your breath every time something reminds you… and everything in your life is seeded with reminders… well, you’d be closer to how it feels, but not very.

Miraculously, somehow the sun keeps coming up every morning. It feels impossible, but it isn’t.

I send text messages to my daughters every single day and talk to them on the phone whenever they’ve got the time and desire. My oldest daughter responds every day, and our conversations are bright spots that help me keep it all in perspective. We are all still alive, and as long as that is true, there is hope.

I see my family doctor once a month, my physical therapist once a week, and a web of specialists and holistic practitioners as needed. They support me in the work that only I can do, the work of reclaiming my life. This involves doing trials for every single thing I put in my mouth, on my body, or even in my home. It involves desensitization protocols so I can wear socks without searing pain, and can walk to the living room and sit on the couch, instead of spending my days in bed. It means strength training and learning to walk with a normal gait again.

More than all of that, more than anything, the work is in my head. It’s a mindset. It’s determination. Grit laced with joy.

It’s hard work, and it’s worth it. I want to live. I want to live big. Like it means something. Like it matters.

I want to live like I mean something. Like I matter.

That kind of living doesn’t occur accidentally. It takes effort. And it can only happen now, working with life exactly as it is.

This is why I’m here. This is why I write.