“People don’t see young mothers using walkers and canes. So they look, you know?”
Oh I know.
I was listening to a nurse at the hospital. “You just have to go out. Who cares what they do. If they stare or look away or ask you what happened. It’s not their business. Just go out and feel good and who cares!” She was taking my blood pressure. This subject was yielding higher than usual results, but nothing seemed to alarm her. “Just don’t hide away. Don’t look at the ground or feel bad. Be proud. You got through this. You did it and you are getting stronger every day!”
‘This’ was what doctors were calling an atyipcal allergic reaction to a biologic class of medication I’d been taking for my Crohn’s and my Mixed Connective Tissue Disease (MCTD). Whether it was the drug itself my body didn’t like, or the way it reacted with existing neurological symptoms was unclear, but the episode landed me in hospital for 2 weeks with stroke-like symptoms, and in physio and neuro rehabilitation for another 2 weeks. It was the most terrifying experience of my life.
My nurse’s advice was hitting its mark. It was hard enough to rebuild the strength on the right side of my body, but the social vulnerability I felt seemed to engulf me on all fronts. I still couldn’t believe what I’d gone through, and recovery couldn’t happen fast enough – my new mobility aids were a constant reminder of that. It’s not so much that I was now walking with a cane or rollator, it was that I felt like an anomaly.
I knew I needed to connect with others in similar situations to help heal and ramp up my esteem, but I didn’t know where or how to find them. I mean, I have very good friends. I have friends with autoimmune diseases. I have friends who depend on mobility aids. I have friends who are moms. But it was exceptionally rare to meet the people at the centre-most overlap of the Venn Diagram. I knew, because I had been looking. I had definitely found some support on line – there were groups, great articles and resource sites for moms with autoimmune diseases and connective tissue conditions- but the online component was encouraging my recovery to be more insular than usual. I’d turn to my browser too quickly instead of stepping out into the sun. Still. I knew these unicorns must be out there in real life. I just didn’t know where.
Hiding in plain sight.
One day, exhausted and having already dodged 3 clucking seniors, 1 well-meaning”God Bless You”, and a mom shushing her 2 kids who asked why I was walking like that, I sank on my rollator seat and waited. I was at one of the many hospitals I frequent, early for yet another specialist appointment. As I settled in, a lady around my age walked by with a cane. She smiled at me, and I perked up as she passed by. I was even happier when she seemed to rethink her path and walked back to me.
“I hope you don’t mind me asking about your walker but it is so cool!” She said. Her eyes were bright and in an instant I felt whole.
“Isn’t it?” Instantly, every technical spec about my rollator poured out of me.
“I’m in the market for a new one, but I wanted one a little less, old, you know?”
“I SO KNOW.”
And within 3 minutes we had shared our complete stories with each other. I knew about her kids and her family life, her condition and symptoms, her treatments, and how she too related to the sad clucks and staring. After another 3 minutes we had exchanged phone numbers, tears, and hugs.
“It’s so great that I met you. I almost felt too shy to come over but I’m so glad I did.” She said, wiping her eyes and smiling. “It’s just so hard to find people like…us.”
“Unicorns.” I mumbled more to myself.
“Yes! Unicorns. Exactly.”
Every week I go to the Stroke and Neuro Clinic at another hospital for outpatient support. Regardless of the kind staff, I was daunted by the journey until one day a few weeks in I met a fresh-faced mom of 3 coming out of a physio class. We seemed to know this was a now or never moment, and we hurriedly exchanged poignant but easily abridged stories about what we’ve been through; peppering the conversation with questions while we exchanged numbers.
“I haven’t seen you before, where did you come from?!”
“Do your kids always want to ride the walker as well? How do you get them to stay off?”
“I want to do a modified yoga class but Parks and Rec only offers it to seniors. How do we change that?”
“I’m just so excited to see someone else- like me!”
We talked until my therapist tapped her foot, announcing it was time to go to the session. I apologized and she surprised me with. “Hey, this is therapy too. I’m glad you guys connected. It’s hard to find support groups in this age group.”
“We sometimes worry more about younger women and mothers falling into depression after neuro or physical rehab – really, after any hospital stay. Reintegration can be harder when you go from being a patient straight to being a caregiver.” Says one of my intake assessment nurses at a midway point through my outpatient program. “Younger patients often don’t have the same established support programs as seniors, or have much higher expectations of themselves. In a lot of cases they have more daily responsibilities – as you know.” She smiles and I replay the daily frustration of wanting to ‘get back to the way things were’, picking up the kids, making dinners, making plans with my husband – realizing instead that I can only move forward one day at a time without any guarantees.
I tweeted recently that -although it sounded strange- I actually missed the hospital. I missed that I could focus on recovery and push myself so that when I saw my kids and my family, they could recognize ‘mom’, and not see the struggle. It was easier with nurses and doctors keeping your recovery on a narrow path from A to B – your discharge date glowing like a beacon, just one more step away. When I was finally discharged and the homecoming honeymoon wore off, I had never felt more alone. I was trying to remember and implement strategies and tools from Occupational Therapy, I was still physically weak, but I was also trying to educate my children and family to new routines which still felt foreign even to me. I felt frustrated that I couldn’t do the simple things that made me ‘Mom’ just 4 weeks earlier. They felt frustrated too. That’s when I started to slip. When we went out, the curious looks and the sheer overwhelming logistics of getting around with a rollator and 2 kids started to chip my confidence. I felt like less of a person. Pushing myself forward became very difficult, but I kept telling myself, ‘Even if today falls apart, I have to at least try to find more unicorns.’
One of those ‘forward’ days took me to my daughter’s sports meet, where another mom seemed to make note of my cane. Over the course of the morning, she gradually floated to my side.
“Are you ok?” She asked. But by now I knew that look. I recognized the fleck of a shared story in her eyes.
“Yes I’m ok. I have an autoimmune disease-”
“ME TOO! I left my cane at home today!” The sheer joy and excitement over her condition made us both burst into gales of laughter.
And again there we were, offering comfort and swapping ‘spoonie hacks’ in the hot sun; shielding our misted eyes as we tapped in phone numbers and names.
Fighting the Red Bull
One of my favourite movies is the 1982, Rankin Bass production of The Last Unicorn. In it, the evil and selfish King Haggard plots to drive all the unicorns in the world into the sea – together with the terrifying, flame-covered creature The Red Bull – just to preserve his own happiness. Of course The Last Unicorn, with the help of her friends, frees the rest of her kind and (spoiler alert) all is made right again.
I know pretty much all the words to that movie but I’ve never looked at it as an allegory for overcoming health obstacles and connecting with others – no matter how rare you think your situation is. Until now, that is.
So to those moms who are fighting their own Red Bulls – to those that have just recently gone through something and are trying to find new footholds, those that have been going through it for years, and those that feel like they might be the only one.
Please know that we are out there – all of us looking for each other. Even now, magnetic steps are tugging us towards intersecting paths.
So look up. Look a little more closely at the world around you and I promise you’ll see us.
We’re the women in the woodwork. We’re your neighbours, we’re at appointments and grocery stores. We’re in line at the movies. We’re helping at your kid’s school. We’re friends of friends. We’re absolutely everywhere you are. We are a sisterhood and we are just one introduction away.
“…You can find the others if you are brave…Listen! Listen, listen QUICKLY!”
When the days are hard, and you feel the most alone.
Remember that unicorns are in the world again.
And together we are all going to be just fine.
To read more Tales of the Autoimmutant, check out: What Is The Right Track, Anyways?
For my diehard The Last Unicorn fans, the full quote is: “Listen. Don’t listen to ME, listen. You can find the others if you are brave. They passed down all the roads long ago, and the Red Bull ran close behind them and covered their footprints. Listen! Listen, listen QUICKLY!” – The Butterfly.