Wellbeing from the wheelchair
How would your wellbeing be affected if you lived in a wheelchair and were reliant on others for absolutely everything – even down to scratching your nose when it’s itchy?
Hard to imagine, isn’t it? It’s hard to consider having ‘wellbeing’ with this level of physical disability.
For this week’s blog, I decided to interview my close friend Megan.
Megan has multiple sclerosis (MS). She can no longer move her feet, legs, trunk, arms, hands or fingers. She spends all day in her electric wheelchair and has care staff who come to her home to get her up, wash, dress and feed her.
Yet, despite these immense challenges, Megan continues to inspire me and others with her positivity, engagement with life and passion for helping others.
How does she do it? What sustains her wellbeing and gives her this capacity for enduring her physical challenges? What can we able-bodied people learn from the experiences of a person so physically limited?
When I first met Megan 12 years ago, we walked into school together to collect our eldest kids from their year two class. By then, she had been living with an MS diagnosis for 11 years, and in that time had created her family of three children, been working as hospital scientist, volunteered in her local surf club and on school committees, and taken part in any and all sporting and physical activities that came her way.
She was, in every way, an involved and committed mother and community member.
Over time, her mobility lessened. She used a stick, then two sticks. Sometimes I’d see her pushing herself along in a wheelchair when she was fatigued. Then, she was always in a wheelchair and was unable to continue working. She got a car that was adapted for her to drive and carried on with her volunteering activities. We attended the same yoga class and a posse of people would help me heave Megan from her wheelchair to her mat and back again – often with hoots of laughter.
Then the day came when she was unable to lift herself in and out of her car seat and she had to stop driving. This was a major blow and one of the few times I have ever seen her really unhappy – she had lost her independence.
Around this time, Megan decided she wanted to do something significant to raise awareness and funds for MS research. This became ‘Megan’s Mowdown’ – her crazy, crackpot idea to ride a mower from Melbourne to Sydney (M to S, get it?). It’s a testament to her community involvement and relationships that everyone got behind her. The local Men’s Shed converted the mower to suit her needs, there were fundraising events and 10 people took time out from their lives to travel with her for the 16 days it took to complete. She raised $52,000 and was featured on national news several times throughout her journey.
Following this, Megan’s physical capabilities faded significantly. Now she needed an electric wheelchair and carers to help her with daily needs. Her arms were going, then her fingers. She couldn’t come to the yoga class any longer, so we took the yoga to her, with a roster of 8-10 volunteers to visit Megan twice a week and help her move and stretch anything that would.
Not content with giving up on her goals and ambitions, Megan created a ‘bucket list’ of activities she wanted to undertake and created this as another fundraiser for MS. Over a period of 18 months, she went on a jetski, tried deep sea fishing, sailing, a trip on an ultralight aircraft and a helicopter, snorkelling on the Great Barrier Reef, entered the City to Surf fun run in Sydney, took part in a charity swim, held high teas and took a car trip across the Nullabor (a long way, for those outside Australia).
I reckon a lot of able-bodied people wouldn’t be game to do some of those!
These days, Megan is more limited in what she can undertake for fundraising but she remains active and committed to slowing her physical decline. She attends a number of therapies every week to help her with this, including something new – ScubaGym – which involves her scuba diving in a pool with therapists who help her to move underwater. Amazingly, this has helped her regain some movement in her left arm. She tells me she is aiming to reach her nose!
Wellbeing from the wheelchair
I chatted to Megan about her wellbeing, drawing on a few questions from our GLWS survey to prompt her.
Generally, how do you maintain your wellbeing despite your physical disability?
I get out as much as possible as it’s extremely depressing being stuck at home all the time. And I have as much technology as possible so I can do things for myself.
Things like my voice activated phone, Google Home so I can turn the TV and aircon on and off, a mouth-activated mouse so I can use a computer a little and my head array for my wheelchair – so I can move around independently by tilting my head in the right way.
What about work? How much of a factor is/was work for sustaining your wellbeing?
It depends on the job and if you like it! I liked what I did and feeling like you are contributing is huge for wellbeing. Which is why I still get involved in advocacy for my friends with MS to help them get the right funding for their needs. I self-manage my own funding from the NDIS, and this is a bit like having a job. It gives me a sense of purpose and meaning. Same with fundraising. And I still do the book-keeping for my husband’s business and pay all the household bills. Anything that makes me feel I am contributing is a good thing.
Are you happy with how you have turned out?
I am happy with who I am emotionally (if not physically). My disease has shaped me and brought out the best in me. I don’t feel it’s brought out anything negative and has created opportunities that I would never have had (such as the Mowdown and Bucket List). I’ve been able to be a positive influence on others and a good example for people with disabilities –what can be done and how to have a positive attitude.
How is your wellbeing impacted by volunteering and community activities?
I don’t get to do voluntary work as much as I would like or as I used to. I miss this and feel guilty about it. I can’t be on committees and do working bees and other active things.
It was a big part of my identity to do things for others and this is limited now. This is a loss of identity for me, although I still try and do as much as I can.
What is the best thing you can do for your wellbeing?
Socialising – getting out and seeing people, going to the movies, having lunch. You really find out who your friends are when you are in a situation like this! It’s these relationships that mean a lot to me and make a difference to my wellbeing.
Sitting in the sunshine on my deck – but I can’t do that right now in this current home until it is renovated, so I miss that.
Unlike a lot of working people these days, I’d actually love a faster pace and less tranquillity in my life!
What are the major detractors from your wellbeing? Aside from the obvious…
Having too much time by myself. Isolation is a horrible feeling and since I had to move from where I had been living for a long time, this has been hard. I’ve lost my close community.
A bad day for me is when I get the feeling that I don’t exist to my local friends. It seems sometimes that people think if they have told Facebook what they have been doing, then that’s ‘job done’, no need to actually connect with anyone. If I happen to look at Facebook, I can get depressed about what other people are doing together and feel forgotten about.
Some friends who haven’t seen me for a while forget about my limitations. I have one friend who asks me to meet her at some location, without any recognition of how difficult that can be.
Parenting. On the one hand, I’m incredibly proud of how my kids have turned out and feel that I have a positive influence on them. On the other, it’s incredibly difficult to parent in the way I would like to when my kids have the option to go to their rooms and shut the door and I can’t follow. This means I sometimes have to tolerate behaviour and compromise on my values and principles in a way I wouldn’t have to if I was able-bodied. I do sometimes wish I could do something fun that is more active with my kids, I have some regret about that. And I feel I’m not able to teach them life skills in the same way.
My physical appearance. I was never vain, but I liked the way I looked before. Now someone else does my hair and puts on my make-up. And I’ve gained weight. I don’t look like myself anymore and I don’t like how I look. My carers put time into it and will tell me I look nice and I’m thinking ‘that’s not how I do my hair!’. I have little control over this.
Overall, I really don’t dwell much on the negatives in my life – I’m too much of a pragmatist, there is no point. I didn’t get here by something that was self-inflicted and I never say, “Why me?”. I’ve had a long time with this disease and my physical decline has been gradual. I’ve had time to get used to it at every step. That’s very different from being in an accident and suddenly having your mobility taken away.
Is there was anything within your control that you feel you could do to enhance your wellbeing further?
I think I’m doing about the best job I can.
And if you had one tip for everyone else, able-bodied people, on how to enhance their wellbeing, what would that be?
Don’t stress about the little things and don’t stress about the things that are out of your control.
And, remember that as you age, you can’t do all the same physical things as you once could, but don’t dwell on this. Just find something you can do! I have adapted to each stage of my physical decline – when I couldn’t play tennis anymore, I started swimming. When I couldn’t swim safely anymore, I did my bucket list. Now, I’m doing ScubaGym. The important thing is to keep finding something to enjoy that keeps you active.
Wellbeing – so much more than physical health
Audrey and I have always agreed with the concept that wellbeing is multi-dimensional, and this is strongly emphasised in how Megan views her wellbeing:
- Her relationships and social contact are key – these can be a huge positive for Megan but also a detractor when she experiences loneliness and isolation.
- She derives a great sense of meaning and purpose from being responsible for her own accounting and making a contribution to others. She also has this immense optimism and positivity about life and how to live it. Megan considers that her disability has ‘brought out the best in her’ and she takes pleasure from being a role model for others.
- Her resilience and equanimity (in the face of significant physical challenges) is admirable – she simply accepts what she can’t control and focuses on what she can still do, without dwelling on or regretting what might have been.
- Megan’s physical vitality and energy is most impacted by her MS, yet she is still endeavouring to keep as active as possible and sets goals for moving as much as she can.
- Although she didn’t raise this, I observe Megan being intellectually engaged in discussions of current affairs and figuring out the best way to win her arguments with the NDIS and other agencies – she has made an art form out of identifying the flaws in the system and challenging these for the greater good.
- Only in the area of balance and boundaries is there is a sense of something missing for Megan – she would like more she can do, more happening around her, more load, more pace (unlike most of us who seek the opposite).
For those of us reading this who are able-bodied, I hope this article can give you pause for thought for a moment and encourage you to relish all the physical things you are able to do.
Are you making enough of these? Are you prioritising some of the small but significant actions you can take to enhance your wellbeing (a walk at the beach, a hug with a friend, a scratch of your nose)?
Megan is my ‘go-to’ person when I find myself having a whinge, being grumpy or feeling sorry for myself… not that I inflict myself on her, but I bring her to mind and regain perspective by thinking about her positivity about life.
Maybe you need a ‘Megan’ too?
If you have been inspired by Megan’s story, maybe you’d like to contribute to something she feels passionate about – supporting the lives of people with MS and funding research to find a cure.
On November 3rd, I am taking part in the Sydney to Wollongong bicycle ride to raise awareness and funds for the MS Society. Megan would do it if she could, but she can’t so I will! It’s a distance of 82kms and follows a hilly route through beautiful NSW in Australia.
You can donate here: https://www.msgongride.org.au/participant/Karen-Gillespie
Wish me luck and be well!
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