The greatest gifts are often oddly wrapped packages possessing no fancy wrapping paper, colourful ribbons or bows. I’ve been on a health journey for several years, each day, week, month and year unravelling a different adventure. There is something in having your abilities vanish then given back repeatedly that deeply embeds gratefulness in your soul. When you don’t know if your abilities are going to disappear overnight, or in a day or in an hour, you take advantage of being able to walk, dance, create, and live life passionately. Crying tears of gratitude becomes your new norm. You learn to look at your body with awe and wonder.
My world started to change with a diagnosis of autoimmune thyroid Hashimoto’s in 2011. I’ve got this I thought. I am a researcher. I lead a healthy life. I’m on my way to my first 5K race. And then more symptoms piled on top of more symptoms. My arms stopped working. My hair fell out. I had no energy. Getting healthy became a full-time job.
In 2013, my body literally started falling apart – in the middle of a body image awards ceremony. The irony. Soon after, I started stabbing myself in the face trying to get a fork to my mouth, had trouble chewing and swallowing, fell flat on my face trying to put on socks and walking became difficult. Almost overnight, my body forgot how to do everything and my brain was slipping into an abyss. I was trying to juggle a busy career running a diverse modelling agency, modelling and doing TV appearances using all of my energy trying to appear normal. I remember thinking, “I am going to be in a nursing home soon.” I felt my life completely slipping away. I was terrified.
I discovered I have a rare disease called Gluten Ataxia which, in a nutshell, means that gluten causes an autoimmune attack in the cerebellum, the brain’s centre for motor control. It has affected my nervous system including balance, walking, talking, eating, writing, thinking, strength, energy levels, reaction to sensory stimuli and a multitude of other issues. Healing hasn’t been as simple as being gluten-free, it has entailed lots of physiotherapy and completely changing my life to handle a multitude of health challenges.
When every moment of every day becomes a careful calculation of energy, it creates the ultimate lessons in patience, appreciation and body love. When your body stops working, it feels like the end of the world, but when your brain also stops functioning, you find yourself getting down to what is really important in your life, what makes your heart sing, what you need to feel complete, what you would be willing to give up to have something else put back in. You realize everyday “little things” are in fact enormous sources of pleasure and that being able to express yourself is vitally important to being human. You quickly learn what you want in a “perfect” day. Life gets simplified and you find sheer beauty in that simplicity.
The trauma of my hair falling out in clumps seems almost trivial to me now as I give thanks regularly for a brain that continues to function better, for legs that move and for the many times I staved off using a motorized wheelchair, for having the strength to clear the snow off my car, for being able to meditatively close my eyes in the shower without falling over, for being able to leave my home and be social without sounds and colours hurting and making me nauseous, for being able to spend more time with the people I love and admire.
I appreciate the multitude of gifts my body gives me every day that I used to take for granted. On February 1st, I was able to do one push-up again after six years of regularly trying. I bellowed with joy and then sobbed from sheer gratitude, joy and wonder. It was, by far, one of my life’s proudest moments.
The experience I once thought of as the greatest curse, has, in fact, been revealed as the most precious gift. My weight, size, what I look like in a bathing suit, lumps, bumps, scars… I don’t care. I can walk. I can use my words to tell the world who I am. I can simply go to a coffee shop. I have the strength to scoop my nieces up in big bear hugs. That’s all that really matters.