3 women together, in the middle is a woman smiling in a pink top, shes seated in a wheelchair, on either side is another woman, wearing a surgical mask

Hello, my name is Carolyn Campbell-McLean. Before COVID I worked two days out of home and two days from my home office near Parramatta in Sydney. This is my story.

I self-manage my NDIS package and a team of support workers who provide me with care four times a day. I live with SMA (Spinal muscular atrophy) which affects my muscles and breathing, and use a power wheelchair to buzz around. I have lots of Assistive Technology, supportive family and friends. Some people call me a social butterfly.

How has COVID affected you?

When COVID-19 hit Australia in March I decided fairly quickly to stay home. My last day out was to my sleep study at Westmead Hospital on March 3 - it was the first time I had worn a mask. From then it was home isolation for me, and hubby who also has a disability. We did 44 days straight at home, and I’ve been out only five times since. I have actually surprised myself at how well I have adjusted to home life, and now I kind of enjoy it most of the time. Although there are many things I miss – hugs and concerts the most!

Those first few weeks were horrible. We were super anxious about how to keep safe while relying on support workers. I stopped eating and sleeping from worry, and the relentless news was feeding that anxiety. However, we wanted to stay up to date. Things were moving quickly. Each day I took in the advice from all my online sources and we worked out our plan to stay safe.

What strategies have you used to keep well? 

* Reduced our team from eight to five and asked a support worker who was a part-time hairdresser to choose us or the salon; we paid each support worker to complete infection control training and paid sick leave; purchased masks, gloves, handwash, paper towel and hand sanitiser using my consumables funding

* Daily disinfecting of high touch areas and all products coming in such as packages and groceries

* Shopping is mostly online; support workers pick up items or run errands such as items from the Post Office or Pharmacy

* Telehealth appointments with GP, Respiratory clinic, Neurologist but need to get to Skin Check!

* Our regular taxi driver sanitises his accessible cab on a Friday afternoon so each month we booked him on a Saturday to take us out on a day trip drive somewhere – he invoices with his ABN and I use my social and community access NDIS funding – this has kept us sane!!

* Keep socially connected via Zoom, phone calls, messages online and texts

* Find things to keep us busy and happy – scrapbooking and making cards, watching Netflix and music, catching up on tidying, sorting, filing and new projects like joining Audible

* Supporting others – I made a box of groceries we didn’t want and found a friend who met an older man who was in need

* Find hope and humour – I spend time watching Some Good News and following The Kindness Pandemic Facebook page 

photo collage, woman in wheelchair in back of a bus with a surgical mask on, a to do list on a fridge, 2 people heading off in a van words say day tripping

Have any positives come of the past 6 months?

There were lots of silver linings shining through during the darkest days.

I have connected with my 10-year-old niece online for the first-time doing games, activities, treasure hunts and trivia. I have realised who my really supportive friends were and appreciated the kindness of strangers.

Working remotely from home and connection with networks was a lifesaver. It's awesome to see society embracing flexible ways of working and connecting, hopefully, this continues in the future.

You take stock of what is important, I mean really important – health, home, relationships.

screen shot of a woman in a wheelchair in front of a computer, underneath her is a young girl, with cat ears on.

How are you moving forward with life?

The balancing act is between getting on with life and at the same time feeling and staying safe. Staff are still wearing masks, but we are having some socially distanced visits and making plans to see friends in outdoor locations. We don’t go to shops or anywhere if we don’t have to, however, we have started wheeling about our community as the weather warms up.

Overall, I am incredibly lucky to be okay financially (thanks JobKeeper) and have plenty to do at home. Each day I wake up hoping the numbers will drop and for a vaccine. I yearn for the day we can go to a concert again, train a room full of people and even go for a meal at a restaurant. Until then, we adapt, and we find new ways to enjoy life.

Every day is a gift.

Stay safe my friends. 

As told to IDEAS by Carolyn Campbell-McLean

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