Becoming 'MS Normal’
How Daniel Andrews and COVID taught me a new way of living with my disability
When Melbourne eases out of hard lockdown this month, I'm going to be walking particularly slow. It won't be because I am being diligent with newly-acquired 'COVID-Normal' behaviours.
It will be because every step I take is aided by a walking stick.
At other times — on worse days — I won't walk at all. I may stay under the doona instead, unable to walk because of chronic pain, fatigue, spasms and more. Or I might stand in my garage to unfold a wheelchair in the hope I'll have enough energy to reach my letterbox.
Those bad days, and good ones, I am already engaged in a non-COVID health battle. I have MS — Multiple Sclerosis.
It's a chronic illness that was already playing havoc with my body and mind way before COVID turned up under a microscope.
So, for me, 2020 is a double bummer! Triple even!
But there is good news in all the doom and gloom. And it comes in the form of a key message our Victorian Premier likes to use more often than he grabs a North Face jacket from his chauffeured car each morning.
Specifically, my hope rises when he says just two words: ‘COVID-Normal’. The Premier thinks he's talking about the coronavirus and how we should all adjust our living to stop the disease from spreading.
Instead, Dan has inspired me — and hopefully others with chronic illnesses — to borrow and adapt the simple mindset shift to tackle bigger health battles that we have been waging already, for years.
2 diseases, 1 set of footprints
Ever since my doctor called in 2016 to say I now have letters after my name that I didn’t study for, life has been rough:
- I’ve lost the ability to move about with freedom
- My future path as a professional, writer, husband and father has been forever impacted by an unwelcome attack on my health
- I’ve found myself staring at ceilings late into the night, worried about tomorrow, next week, next year
- I've lost liberties I once took for granted: Walking the dog became a chore, visiting shops took longer, and planning for coming months and years was like rolling dice
Sound familiar? Mobility limits, confusion, worry, frustration?
It's so similar that I've been able to divide my seasons since MS diagnosis into five distinct stages of living. And in the process, the strange similarities with the COVID-19 pandemic have prompted me to realise and use some personal management strategies for what comes next.
Rather than being a source of sadness, my self-titled theory of '5 Stages of Becoming MS Normal' helps me think less about today's pain. Naming the stages, and recognising how to manage symptoms a little more creatively, is nothing close to a vaccine for this wretched Multiple Sclerosis that has scarred my brain and spine without permission. But it does give me hope I can manage MS a little easier some days.
The 5 Stages of becoming 'MS-Normal'
Stage 1, Impact
When doctors found MS in my brain and spine, they first prescribed information: Fact sheets, meetings, consultations, websites. The words weren’t a cure, but carried a lot of sometimes daunting details about what doctors knew now, and what they thought tomorrow could look like.
They told me the best offence against the MS enemy would be defence: ‘Stop it from getting worse, from spreading further. Drugs could help’, they hoped, but ‘no promises in this game’.
COVID news broke in similar ways: Lots of experts with frightening truths and dire predictions if we didn’t roll up our collective sleeves to keep the virus from spreading deeper.
Stage 2, Lockdown
After the flurry of MS diagnosis, I found myself retreating initially to home and family. I even found myself working from home more as I gave myself the best possible chance of staying well during a difficult period of time.
COVID was the same: We took a collective timeout, away from the busyness of social and work gatherings, hoping we could minimise the spread.
Stage 3, Progress
For many people with MS, this third stage is as far as they get. They see progress or at least a series of pauses when the disease goes into remission. It doesn't mean a cure but any pause for an MS sufferer (often prompted by new immune suppressant drugs as I receive) keep the condition out of the driver's seat.
For Melbourne heading into winter, COVID looked like it was pausing too; a success story, relatively.
We had done what we were told. It looked like the curve was flattening towards a healthy, minimal impact.
Stage 4, Surprise!
Then, like a sink quickly emptying, good news spiralled down until only stains remained.
In 2018, MS seemed to have passed my defences.
My walking pace and gait deteriorated. My left foot 'dropped' as I shuffled. Pain became daily torture. Fatigue forced days off work. Then Long Service Leave; ultimately heading back home again into another MS-induced lockdown.
COVID seemed the same. In Melbourne, we thought we’d done well, until we hadn’t. Shocked, we found ourselves back at home with less hope than ever.
Stage 5, Resolve
Through it all, there was one constant... the words of my closest friend in the world — my wife Karen — telling me we would get through this, together. She had told me 33 years ago she would walk with me, for better or worse. Every stage.
In 2020, with MS and COVID matching pace, I resolved to look at life differently. Rather than merely accepting the circumstance like it was something I could overcome or take control of, I got real. I admitted that I couldn't alter the situation beyond a few tweaks of exercise and treatment.
What I decided was to intend on having a tomorrow despite the challenges, and that I would get there, somehow.
I may not look pretty reaching the next morning, and it may mean a lot of tears and frustration, but I would be intentional about whatever I could. Most important of all, I would lower the bars of success to something more manageable. This new resolve of living with MS rather than under it would mean cutting my 'to do' lists and being happy with whatever I could manage.
I would be compassionate with myself rather than setting and missing unrealistic standards.
And I would find a new way of 'normal' life for me... my 'MS Normal'.
Living two ‘Normals’
As I write this over several sittings, tying together comparisons with a rough year, I'm reminding myself afresh one truth: There will be a tomorrow.
Not all of us get to enjoy life the way we want, but there's often a different horizon to discover when we try leaving the limits of our verandahs.
There's hope in me being able to move forward every time I sit in my wheelchair.
There's confidence in a new type of normal living that necessary additions to living — like daily catheters for me or face masks for everyone — have a purpose that helps in the long run.
With the thought of my wife's vow, and Premier Daniel Andrews repeating key messages in a press conference, I stay alert for a miracle.
God willing, that will be tomorrow. Today, it's okay to be 'MS (and COVID)-Normal' while I wait.