A support worker’s experience of Progressive MS
Over my seven years of working as a support worker, I had the privilege of sharing my time with several amazing individuals who lived with Progressive MS.
Reflecting upon this period in my life, I am flooded with emotions and memories of the fantastic people that I spent time with on a weekly basis.
People will often quote time as the most valuable thing you can give someone, but it was perhaps something I found hard to quantify or wrap my head around, until spending time with people one-on-one actually became my job. Sure, you could argue that as it was a paid role, then my time was not so much given as exchanged, but any support worker will tell you that this payment does not negate how much it means to give someone your undivided care and attention.
The role of support worker was initially described to me as “professional friend”, and then of course refined as I gained more experience and training, but I would argue that this definition still holds. Whilst a support worker is facilitating a participant’s involvement in community life, the approach that you cannot help but take on is wanting the best for the person as someone you care for more and more. And believe me, it doesn’t take long. I could fondly quote things said by people whom I only saw for one shift, eight years ago. Never underestimate the impact you can have on someone.
I began working with two different programs, one for people with intellectual disabilities, and the other for people with neurological conditions. Most often than not, these were people with primary progressive multiple sclerosis. Whilst both involved encouraging the participant to live their best life in the community, the key difference between the two programs for me was, that when working with a participant with a neurological condition, my policy was always, “We do exactly what you want to do today.” I would never think that I possibly knew any better about how to approach tasks, or the value of one objective over another; I was a vessel and there to facilitate and enact their wishes. These chosen activities could vary anywhere between the excitement of riding on a Harley, to helping someone do their banking.
I know that people with disabilities in general don’t appreciate having their everyday activities considered inspirational, as per Stella Young’s coined term, “inspiration porn”, but when you witness and indeed help people with disabilities to go about their day, it is impossible not to be impressed and affected.
As shown in the second episode of Tim Ferguson’s “Tick F^&kin Tock” documentary, completing what able-bodied people might consider basic tasks such as pulling up one’s own pants can take immeasurable determination. The kind of mental toughness, positivity and resilience I witnessed would put Anthony Robbins to shame. Harrowing experiences shrugged off, injuries ignored, pain endured, not in the name of winning an AFL Grand Final or climbing a mountain, but to just get done what they wanted in the precious 3.75 hours of support that week.
This patience was also something in high supply in the way some people planned their sessions. A vibrant woman in her 40s had a goal to make a mosaic for her backyard, and due to her mobility issues, creating it took military planning and Buddha-like patience on her behalf. We worked on it for about 30 minutes each week, which was all her MS fatigue would allow; designing the mosaic, choosing colours, breaking tiles, meticulously placing and gluing down the fragments, and lastly, making up the grout and finishing it off. Half a year later, this beautiful expression of her determination and creativity took pride of place on the outside wall in her glorious backyard garden.
A male client I began working with when he was in his mid-20s, expressed to me on our first shift together how there was so much he wanted to do before his MS progressed any further. After toying with a few different variations on names: Bucket list, wish list, etc. he settled on “Mini-adventures.” This list would have looked daunting for some extreme sportspeople! Gliding, skydiving, Harley riding, along with UFC fights, concerts, comedians, the list went on. It also included something that was sometimes a taboo topic for some support workers and carers, visiting the strippers, and eventually, visiting a brothel. To be able to help this young man, who lived with his mother, used a walking frame and was mostly only able to maintain friendships online, to explore this part of his life was so unbelievably rewarding.
During my time I witnessed my participants/clients experience many of the common MS-related symptoms like swallowing issues over lunch, spasms caused by having to push their wheelchair over cobble-stone paths, and obviously, mobility issues.
I also saw pure ingenuity. These same clients planned their lives and time so efficiently, and came up with some amazing “life-hacks” to get around their symptoms and minimise the effects of MS; perfectly timed pre-cinema toilet breaks, sticks with rubber thimbles on the end to control i-pads, even optic neuritis that was mysteriously and hilariously abated temporarily by consuming two beers.
The role of support worker provides a unique window into the difficulties, prejudices, agency inefficiencies, and issues of accessibility that people with MS can experience, especially where disabilities become more prominent. One lovely male client in his 50s meticulously planned an expensive overseas cruise through New Caledonia for his family of three, sparing no expense. He asked all the right questions and was at every turn reassured that his special needs, including access for his electric wheelchair, could be catered for. My first shift with him after the trip, I walked into his study, excited to know, “How good was your trip?” He frowned and explained that the cruise ship was wheelchair-accessible, the bus on the islands was wheel-chair accessible, but the smaller ferry boat used to disembark and get on to the islands was not. So every day he had to insist that his wife and son go exploring islands while he stayed alone on the cruise ship.
As my time continued in the role, I also found myself supporting people as they approached palliative care. There was one particular woman in her 50s whose spirit and glint in her eye I will never forget. Unfortunately her illness had progressed to the point her she could barely talk or move. During one of our early support sessions, I learnt from her husband who was her at-home carer that she loved Robbie Williams’ song “Angels.” So at her request, I used to bring my guitar sometimes and play her songs. She had a way of smiling with her eyes that completely erased any awkwardness or embarrassment I may have otherwise felt playing love songs one-on-one to someone.
For every hard time I witnessed, and every difficulty I supported someone through, there were hundreds more beautiful memories like this one that I still carry with me.