The World Will F*** You Up If You Let It (Don’t Let It)

CreativeHolinessTwo years ago in June, I experienced anaphylaxis for the first (and not the last) time. While it took several months to get an appropriate diagnosis of Mast Cell Activation Disorder, it was already beginning to change my life in ways I never could have imagined until this point. Last year in June, I was also given a secondary diagnosis of idiopathic peripheral neuropathy, after I started having excruciating pain in my feet in April, which grew steadily worse until I was hospitalized for a week at Brigham Women and Children’s Hospital in Boston, where I was treated by a team of incredible doctors of several disciplines, and ultimately put on heavy-duty opiate painkillers. After being sent home, I was mostly bedridden.

During the worst of it, when I could only eat rice and my weight had dropped dangerously low, I looked like a Holocaust victim. I avoided mirrors. Seeing myself naked would sometimes make me burst into tears. I was afraid that I might die. My wife was afraid that I might die. The day we drove to Boston so I could be admitted to the hospital, I had visited my mast cell specialist. He’s a pretty laid-back guy. While he didn’t mention death, he took one look at me and said that he was afraid for me and that I needed to be in the hospital. He told me I should go home and pack. That was a scary day.

I had seen my eldest daughter just a few months prior, but I hadn’t seen my other two girls in quite a long time. I wouldn’t allow myself to worry that maybe I’d never see them again, because it was too much to bear. Instead, I put all of that fear and emotional anguish into fighting for my life.

Ever since I was released from the hospital from that visit last June, I’ve been fighting for my own life. I remind myself daily, sometimes many times a day, that I may be at war with my disease, and I may be battling chronic pain, but I am NEVER fighting myself.

It can be a hard thing to separate out a disease or severe pain from your Self. It resides in your body. It may be within you, but it isn’t you. The thing you are fighting is something other, and it is absolutely crucial to remember that. I am always on my own side.

I feel certain that a large part of what has kept me going is coming back to this self-love over and over and over again. How ever many times I have forgotten, I have also remembered.

At the worst, the ways I fought for myself were oftentimes so subtle that they wouldn’t have even been detectable to an outsider. When I first came home from that hospital stay, it meant following the plan my team of physicians helped me come up with. I took my medications religiously, keeping a log and setting timers. I forced down enough Ensure to gain at least 1/2 a pound a week. I kept all of my many, many appointments with my primary doctor and a slew of specialists. It meant doing what I could to stay positive and present, whether that meant talking on the phone with one of my daughters, coloring in coloring books to bring down my stress levels, and meditating on my body and its healing.

Thankfully, I’ve had a meditation practice since discovering one of my mother’s Swami Satchinanda records when I was 13. So what came after getting sick came naturally. I meditated for large chunks of every day. During the months when the pain was the worst, I spent more waking hours in meditation than not. I still meditate several times a day, just for shorter periods. I believe this has played a very significant role in my healing and quality of life improving so greatly.

I read as much as I was able about neuroplasticity, and employed whichever techniques I was capable of doing on my own. I asked a ton of questions without worrying about being annoying or taking up too much time with doctors, because no one is ever going to care about my health as much as I do. Even now, every single day, I read up on this subject, and am currently in the process of seeking out a few alternative forms of treatment to add to my repertoire.

I kept going. Day after day, week after week, month after month. I kept going as the sticky heat of summer turned into the cool and blazing leaves of fall, which gave way to winter boots and layers of scarves, and giving thanks that this year’s winter was pretty mild by New England standards.

I was in so much pain, I was still spending almost all of my time in bed. I slept off and on all day long. I had a home healthcare aid who came to the house twice a week to help me bathe from a bowl, sitting on the edge of the bed. I also had a physical therapist and an occupational therapist, which had been recommended while I was in the hospital. But after a couple of months, they both said that I was in too much pain for them to continue working with me, and I told them I was ready to be done with it, so that was the end of that.

Once or twice a month I’d get so tired of being cooped up that my wife would help me get dressed and we’d go to the bookstore or a craft supply store, maybe Target if we were feeling particularly ambitious. She’d push me in my newly acquired rental wheelchair, and I’d wear a face mask in order to avoid having mast cell reactions to perfumes and other scents.

I can’t remember much about the first eight months or so of the past year. The pain medications I needed were so strong that it took my body several months to get used to them, and my short-term memory was a sieve. Also, even without the meds causing this side effect, my pain was still constant and unrelenting. The drugs only brought it down from excruciating-and-unbearable to still-pretty-damn-awful-but-I-can-get-through-this-without-sobbing-all-day. That kind of pain will wipe your memory clean of everything but the sensation of pain. On top of that, I slept more hours than I was awake for much of that time.

While sometimes I lament the fact that in some ways it feels like I  completely lost a couple of years of my life, in hindsight, I can see that this may be a blessing.

In any case, things have been changing for the better. I’m out of bed most days (although after a particularly busy and active week last week, I opted to spend Saturday and Sunday in bed to recoup my energy stores). I go places. I do my p.t. exercises five to six days a week without fail. I’ve been pushing myself to walk, even outside, in our little downtown. Last week, for the first time in well over a year, I went to two kid-related things with my wife (a medical appointment and a play).

I’m going to be brutally honest. Sometimes, it would’ve been much easier to give up than it was to keep going. Fighting for your life, day in and day out over a long period of time, is exhausting. It can be a challenge to keep counting your blessings when you’re in so much pain that it even invades your dreams, and you dream in sensation, your skin on fire, the nonstop buzzing and tingling, the flinch and the shudder. For over a year, my whole life was pain, and learning to love my life as it now was.

It was so fucking hard sometimes. So hard. I’m not saying that to wallow in self-pity. I’m saying it because it is true, and sometimes truth isn’t pretty. I am reading Brene Brown’s book, “Rising Strong,” in which she talks about how in our culture we all love stories of falling down, failure, and perseverance–but we love the sanitized versions, the ones that remove human emotion, glossing over the ass kickings and tears and pain. I’m striving not to do that, because it isn’t fair. It isn’t fair to myself, because it’s indulging in delusion, a rewriting of history, and it isn’t fair to my readers, all of whom surely face hard times. I’d hate for anyone to ever read a sanitized account of my struggles and wonder what was wrong with themselves for not being as strong.

Yesterday, when I woke up and heard about the Pulse massacre, for a moment I felt like I was dying again. My throat started to close. I felt like I couldn’t breathe. Thinking of so many innocents, gunned down for no fucking reason, for being who and what they are, which happens to be who and what I am.

But of course, I could breathe. I must. I have an obligation to keep breathing. Plus, I want to.

How many tragedies, both small and large, personal and global, will you confront over a lifetime? Too many to count, I’m sure. There will be days when it all seems to be falling in on you, when you can’t catch your breath. You may even face things that make it feel as if it’s too hard to keep going, that it would be better if it didn’t.

But if you keep going, if you devote yourself to the cause of finding the beauty in being alive, it will happen. We don’t need perfectly enlightened beings. We don’t need more gurus or prophets. We need you. You in all of your imperfect, human perfection. We need people who’ve known all manner of struggle. We need more people who have endured. We need more people who can sit with discomfort. We need people who are willing to keep seeking beauty. We need more people who know that love is an action word, and love the world with all their might.

We need your whole heart.

We need you as you are.

We need you.

We need you.

We need you.

The world will fuck you up if you let it.

Don’t let it.

 

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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

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.