InFocus: Queer and Disabled Story by PWDA member Mandy
InFocus: Queer & Disabled is a digital storytelling campaign led by PWDA, centring the voices and lived experiences of LGBTQIA+ people with disability.
I'm Mandy, I live in Victoria and have an Acquired Brain Injury.
I had a Spontaneous Coronary Artery Dissection (SCAD heart attack) leading to cardiac arrest for over 20 minutes in 2022. I know I am extremely lucky to be alive.
Being from the UK originally many of my friends and family members have said that I would not be here if it happened in the UK, as the ambulance would have taken twice as long to arrive. I know our health system is not perfect but compared to other countries it is amazing.
The support I received at the start of my recovery was great and again, people in the UK can wait months for the support I received.
It has taken me a long time to fully acknowledge my disability. I have recovered very well but my biggest goal was returning to work. Throughout that whole process I had to fight to even get in the building, after months of setbacks and delays my employer terminated me without even giving me a chance.
This was a really difficult time for me, all my care team and health professionals had said constantly that getting back to work would be a huge help in my recovery and that was the aim, get better and recover, be 'normal' again.
My mind set, and that of my then wife was always 'get better, push through, get back to work just try harder, 'stop being lazy'.
Now I know that my life will not be the same again, that fighting to get there instead of accepting things just brought hurt and disappointment. I know that I can still do some things. I just need to figure out what I want and can do next.
If anything, I know life is too short to not move forward and be incredibly proud of where I am now. I have never been fired before and work was always a big part of my life. I gave it all (which ironically is why I had my heart attack due to stress) so there was (and still is) a period of grief for me.
I think grieving the life we had and the future we thought we were going to have is normal though for someone with a brain injury.
That's why it's so important to find support groups with people who actually understand your situation.
I think my proudest moment has been attending the Women's Brain Injury Matters support group in the city (Melbourne). I live almost an hour away and drive there myself which is great feeling that I can finally do that again (after my second test with lessons this time 😊).
Meeting with people who truly understand and know how you feel really has changed my life. We have all gotten to the same path in different ways, but just not having to 'put on a show' to mask or hide the fatigue or being overwhelmed in public is a huge relief. We share experiences, ideas and most of all support. I look forward to our meetings every month.
I can't always make them if I'm having a bad day and don't feel up to the drive, but when I do I'm so proud of myself, just to have gotten there and to be with people who understand what it takes to show up and plan around my fatigue. Some of my friends and family still don't fully understand, but this group of women completely understand and I'm so grateful.
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