Come Out and Play
Part three of my mobility aid journey - the one with the round of golf and an 'aha' moment.
“I suppose it’s a bit like a round of golf?” my brother pondered as I noted my growing collection of mobility aids.* I liked this.
Applying my limited knowledge of the game, with a little help from Google:
⛳️ My Alinker walking bike for covering distance, is comparable to using the driver to get that long shot.
⛳️ My rollator, for shorter distances, a 9-iron. Also good for tricky situations, for example, navigating the step at the hairdressers. Akin to the sand wedge for getting out of a bunker.
⛳️ The collection of walking sticks I use largely at home or the occasional social event, is like the contained and relative safety of the putter on the green. But, can really catch you out if you get complacent.
⛳️ Occasionally, the lift is broken or there are stairs with no handrail. The water hazard.
Are you impressed, Rich?
It would be in bad taste to ask what my handicap is, but we all know MS has the power to spoil a good walk, and some think that “golf is a good walk spoiled”.
And here was an acknowledgment that with MS the journey often isn’t linear. You don’t always advance from walking stick, to rollator, to walking bike, to mobility scooter or wheelchair, even with disease progression. Depending on what you’re doing or how you feel on any given day, a different aid might be required. Just like selecting the right club from the golf bag.
The golf analogy didn’t apply when I was still getting used to the idea that I needed mobility aids. I had taken the big step of ordering sticks and a rollator, but in reality my Alinker was getting most of the positive attention. I hadn’t fully ‘come out’!
The trekking poles arrived, and I had a few brief outings with them. This was my introduction to a walking stick type mobility aid. It was a big deal, but the arena was safe: a writing course, in an artsy environment.
“Surely they’ll be open-minded, friendly and supportive?” I thought to myself, and Write like a Grrrl ** you were all those things. Thank you. You had no idea you were helping me far beyond kickstarting my writing.
Using the trekking poles also concentrated my mind. If I was going to fully embrace a walking stick, I would not only need something that provided greater stability, but was a little more me. So I donated them to the charity shop.
Instead, I found Neowalk sticks. Like the Alinker, these were a game changer. Because I’d already tried and tested being out and about in public with trekking poles in clearly not a mountaineering situation, the transition to much more ‘me-Jane’ sticks was easy-ish. Plus these gorgeous creations were something to be delighted about. Beautiful acrylic sticks with funky designs in any shade of the rainbow.
I now have three, and a wish-list for more. Does that count as an addiction? My first one, in “rubber ducky” yellow is the “putter” featured upside-down in my golf stance image above. My other two are clear sticks, one with a white DNA helix design, and the other with inset champagne bubbles that light up at the touch of a button. What I love most about Neowalk is how they subvert the idea that we shouldn’t stare at the disabled person, but we must look and marvel at the cool design of their mobility aid.
The trickiest mobility aid for me to start using was the one I probably needed the most. My Carbon Ultralight rollator in subtle Oyster White is made by Danish company byACRE. Their design process is interesting:
“Let’s see if we can do something to reverse the perception of what a rollator is.” their website says.
Rather than trying to improve on existing rollator designs, as a starting point for their prototype they filled a wall with pictures of active looking things, sports cars, eagles, sharks and fighter jets.
And you can tell. This rollator is sleek and looks like it’s gliding when it moves. When I clicked confirm on my order, I felt visceral excitement. It gave me a picture of freedom. I could see myself sitting in coffee shops with it.
But, when DPD knocked at the door with a large rollator shaped box with matching design, it was a different story. We had friends here, and it dawned on me the only person who knew about the rollator purchase was Jase.
⭐️ Flooded with a cocktail of embarrassment, shame, and sadness as the main ingredients, I shunted the cardboard boxed elephant-in-the-room into the corner under hushed whispers.
I sat back down and my friends and I carried on talking about the kids, music, interest rates and the like. I wasn’t ready to share my secret yet. I realised what a slow, advancing, and regressing process dealing with these changes was.
I carried on hiding my rollator (still boxed) when visitors came. The carefully considered design had helped me to cope with the uncomfortable reality that I needed it.
But where was the giddy anticipation I felt when I ordered it? ⭐️
It was clear that it wasn’t simply about having the beautiful aid. With the rollator there was another layer to add to the general stigma around disability. The association these devices have with ageing, the elderly and infirm, was another tricky obstacle and why would I be immune? I like this quote:
“I would challenge anyone, … who says that they do not hold ageist attitudes. The negative associations with older age and ageing are so pervasive that it's impossible to completely avoid internalising these views. This then influences how we think about ourselves, now and in the future, and about older people.” Carole Easten, Centre for Ageing Better.
I am not young. I am not pre-, I am not peri-, but post-menopausal. In the world of form-filling, I now have fewer age tick boxes ahead of me than behind. So I have done some work ascending these categories. Maybe I’d just done enough for now, but having bought into the ageist narrative, I also wasn’t ready to be bumped up again “before my time”. And my ego wouldn’t let me shake off this extra coat of meaning.
Until about a week after its delivery, rollator still in its box, we went to the park, on the Alinker. Out of the corner of my eye I spotted her, a tall woman, dressed in classic outdoorsy wear. She was using the biggest and most clunky contraption of a rollator, grey, with a monkey bar thick frame. She was with what looked like her husband, son, and baby grandchild. She looked confident, calm, happy, and I can’t speak for her, but it seemed to me that the rollator was the last thing on her mind. And if she had ever cared about the stigma it carried, it was a long distant memory.
I could do this. This was the ‘aha’ moment. Getting out of my own head and being able to see the bigger picture.
And now, the byACRE goes with me to restaurants, the hairdressers, the cinema and anywhere else I need it. I am happy I have such a beautiful rollator. And I still get the stares. They could be looking at the rollator, at me, who knows? Every now and again I flip out about it. But the seismic shift in my attitude towards mobility aids means that these days I come out and play.
I’ve also been thinking that it would be good to weigh up the options for a golf buggy to help me get beyond the perimeter of the course.
And finally…
Thank you for reading
Jane 💛
Footnotes
* Thank you to my brother Richard Harrison for the golf analogy. No longer a golfer, he has progressed to more bendy activities as a yoga teacher.
** Write like a Grrrl is a collective of writers and a supportive feminist community running writing courses across the UK and worldwide.
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Yes, indeed a very appropriate analogy - use of a range of appliances for mobility and exploration in mind and body. It reminded me of one aspect of the American philosopher John Dewey's theory of how we use various items in education, such as books, writing materials, tech devices, pictures, films, as AMPLIFIERS of our individual capabilities to explore further avenues of perceptions/thoughts via both mental and physical activities, thus enhancing our own experience. Your description of the the woman in the park with her family, using the 'clunky' rollator for that family outing illustrates the impact of such an amplifier on an individual's ( yours in particular , as well as that woman and her family ) living experience in visual, physical, emotional and intellectual terms. A good time to remark on it too, as May has ushered in summer - a quote from Emily Bronte I have just seen is apt for this '' May is the month of expectations, month of wishes, month of hope ''.
This is brilliant Jane! The golf analogy is perfect. Get the golf buggy and the world is your oyster again 😁💪