On Being Diagnosed with an Incurable Autoimmune Disease

I’ve been holding onto a $45 bottle of wine for 8 months. It was gifted to me and I accepted it lovingly. It sat beside our fridge (where the wine goes, in a perfect little corner) while I bought $14 bottles to drink instead of this gifted $45. I wondered when I would open the bottle, and what for, and if I’d ever have a good enough reason, but I never stopped long enough to answer my queries.

I opened it tonight: Tuesday, February 27th, 2018.

I try to make all of my decisions in life in the honour that I embrace it. Life, I mean. We use my grandma’s good china every day because I don’t think we need good china. I buy special edition stamps and I use them. I move to new cities halfway across the continent/world because I can. I play and hold and toss signed baseballs (until my partner puts them in a box). I never stopped to ask myself what I was saving this $45 bottle of wine for. I was just… saving it. Simple. Today, I asked, for what?

Was it the sentimentality behind the gift? Did I think it might taste better with age? Was it the price, and its representation of the hard year I had financially, and how I thought it was a lavish item for my meager budget? Was it that I felt a milestone coming on and I should keep it “just in case?” That my life was about to shift in a way I wasn’t aware of? I wasn’t sure, nor did I care to be, but last week these questions fell to the wayside making room for this one: do I want to drink the wine now, or do I want to save it for when I feel I can drink again? The latter, an unknown amount of time.

Here’s a tangent: a couple months ago I was forwarded an email with the medical term for a cancer diagnosis in my family: myeloproliferative neoplasms. I tried my best to understand it (and to pronounce it; memorize it) by searching for PDFs and brochures and researching ways to support a family member with incurable cancer. It’s a type of blood cancer, by the way, where the body produces too many red or white blood cells. I tried to think about how terrible it might feel to have an incurable disease, a time limit put on your life, but I couldn’t. I just didn’t know what that felt like, to have an incurable anything. “How does that affect one’s life?” I wondered. I couldn’t answer.

I heard through the grapevine that my family member didn’t want anyone to worry; that they might have given up (interpretations, I understood).

“But it’s just a diagnosis!” I thought loudly. “There’s so much more to do!”

I held back my panic, I suppressed it, and reached out civilly to them and their family. I planned to leave it at that – “I love you. I’m here for you.” I wanted to respect their choice, their life, their body, but I had to say more. I didn’t want them to go another day oblivious to the fact that I didn’t want them to give up. One night after a glass of wine I texted: “Hey I love you and I want you to live as long as you want… Not as long as this disease dictates. I love you more than I’ve let you know in a long time.” I let myself cry, thinking about all the words I had left to say, and all I have yet to learn, and I checked my phone incessantly for a reply until I fell asleep.

Everyone dies. Why, all of a sudden, do I feel rushed to say “I love you?”

But no one is dying yet. We’re all still here. We’re all still okay, right?

We’re all still the same, technically.

The next day I got a response: “I love you lots, too,” and “I will be here as long as I can,” and “The miserable grouch in me won’t let me go anywhere, lol. Gotta be here to be grumpy,” and “Who knows… Could get hit by car walking down the sidewalk next week!” and “Say hi to Brian for me, too.” I laughed.

No one is dying yet. We’re all still here. We’re all still okay.

Last week my life changed again. Not dramatically, but it shifted, as it does.

(Unsurprisingly) I was diagnosed with ankylosing spondylitis. Ankylosing spondylitis, or AS, is a form of arthritis in the spine where the spinal pockets harden and the spine fuses together. It is also an autoimmune disease, meaning it can affect other tissue and joints in the body. It sounds terrible, doesn’t it? Between 0.8% and just over 1% of people are diagnosed with it, except that I’ve read this isn’t a solid stat since AS is so hard to diagnose. Knowing that, it’s safe to say that I may have it, in my very humble and doctoral opinion.

While there’s no cure of AS, it is a manageable disease. I am going on anti-inflammatories to start, most of which recommend limiting alcohol intake lest risk stomach bleeding, hence the question about the $45 wine. (In truth, modern medicine fascinates me. Putting it in my body, on the other hand, terrifies me.) I had my spinal mobility measured at my doctor’s appointment and my doctor said, “Wow. Literally, excellent,” in a Chris Traeger sort of way.

“It’s all that yoga I do!” I joked, nudging the air with my elbow like a chorus kid from Oliver Twist.

“Never stop doing yoga,” she said passively, but I knew the depth of her medical humour. As an unbearably stubborn person, I am both appalled and not at all surprised that my gut instinct after hearing her say this was to quit yoga forever.

“I’ll show you!” I thought. The bright side of me just went:

Facepalm GIF

I love yoga.

“I thought my life was great,” I blurted out. “But I didn’t realize it was just good.” I tried to sound light-hearted. My life is great — I am privileged and able, my basic needs are met, I have people around me who love me, and I have a safe space to be myself. I am grateful, but in this moment, relatively speaking, it felt like the backbone of my life just hunched over and began to weep. The trick now is that I have to make sure the backbone of my life doesn’t fuse together and stay that way forever.

I’ve always thought my lower back pain was normal, because I can’t remember a time I didn’t feel it almost always. I’ve likely had AS for a while, my doctor said, but because I stretch and cycle and eat kale, my AS is not as debilitating. Dammit kale! You know, the day before my seeing this rheumatologist, I didn’t even know what a rheumatologist was (they deal with the insides of your body, like joints and tissues, by the way).

“You’re life is still great,” she said. “We’re just going to make it greater.”

It is changes like this diagnosis and that diagnosis that we will experience more of, and more profoundly as we get older. I am thirty now. I was diagnosed with psoriasis just after my birthday. I’m getting married in August. We’re trying to get the ball rolling on a potential Toronto adoption. If we can, we may have a child in the coming years. Life, and my body in it, is going to be changing and shifting and moving more and more, and I want to keep my spine from fusing together so I can keep up.

It’s laughable to me that a month ago I couldn’t fathom a life with an incurable disease. I felt, and I still feel, wholly grateful for my ableism. Many moments, when I’m on the verge of tears especially, I remind myself that my diagnosis is more a piece of the puzzle that was handed to me, rather than a traumatic unveiling. It’s an opportunity to live life the way I am meant to.

My body has always been important to me, and the power I wield in neglecting it is everything. But I want to live my life in the embodiment of embracement. I want to do yoga. I want to connect. I want to research and change and grow and adapt. I want to drink the wine, because no one is dying yet. We’re all still here, we’re all still okay, and there’s so much more to do.

“It’s not how old you are. It’s how you are old.” – Jules Renard


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