Two 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.