How a few words gave me hope after I lost all four of my limbs
I’m a quadruple amputee. Four years ago, I wasn’t. Needless to say, there is quite a story that fills in the gap.
Group A streptococcus was the name of the bacterium that lead to my sepsis. As with most quadruple amputees, the way you get to sepsis is the difference, but once you’re there, the story is really all the same.
It has been an emotional roller-coaster as well as a giant social experiment. I have encountered an incredible range of healthcare professionals (across seven hospitals), their attitudes, and their technologies. I have seen the best and the worst of people; from strangers through to my nearest and dearest.
I have lost friends because watching this happen to me is beyond them. I now consider nurses and doctors as friends, and often have strangers stop me in the street to tell me of their loved ones going through something similar.
Fascinating, but not always easy to deal with.
Oddly enough, I enjoyed my coma. It was only the face of a young doctor telling me to “Wake up Mandy, WAKE UP!” that got in the way of the magnificent hallucinations. It was like living inside an elaborate sci-fi film – such complex visions too difficult to put into words.
After my coma, I was in ICU for six weeks. It’s a place where the sun never sets. Day and night blur and more often than not, patients are either unconscious or not there long enough for the continuous light to get to them. Over the 10 months before I made it home, those six weeks in ICU were the hardest.
During this time, my silence was my enemy. The staff were so incredibly busy and my tracheotomy meant my days there were silent. Besides visits from my husband, the only conversation I had was inside my head.
Giving up was the easy option – I could simply let Mother Nature do what She had planned. Life with no hands and feet? I couldn’t comprehend it. I couldn’t even move my head. Finally, I mouthed the words to a nurse that I needed to see a counsellor.
It was a Friday night and she arrived with her handbag on her shoulder, ready for the weekend. My tears were the only way I could communicate my anguish, but her words to me still help me today.
‘Just get through today’, she urged me. ‘Don’t worry about what tomorrow looks like. Just do today.’
Four years later I have robotic hands, high tech legs and I have recently learnt to run, drive, and ride a bike. I can cook and write, but I cannot scratch, do up my bra or get a wedgie out.
I miss holding my husband’s hand and the feeling of sand between my toes. To feel something soft, I must hold it to my lips. My life is the same and yet so much is different.
Now, I am a regular guest at my daughter’s Grade 2 ‘Show and Tell’. My hands get passed around, and are often left behind – once on the roof of a car, like you would a mobile phone. It was followed by complete panic as we realised half way home.
Mostly, life is good. I have my husband at home with me full time and thanks to a great psych, that’s okay. Together, we constantly joke about what’s happened. I have started a support group for other quadruple amputees and am establishing a program for people newly out of hospital, fresh to life with a disability.
But what I enjoy most is telling our story to school kids and audiences across Australia, and reminding them that you can survive anything.
It’s all about attitude. If I had not had that counsellor whisper those words, no amount of research and technology from medical professionals would have got me to where I am today. Yes, they saved my life. Yes, they rebuilt my arms and legs. And yes, they taught me to walk again. But I know I wouldn’t be here if I hadn’t heard those words.
‘Just get through today. Don’t worry about what tomorrow looks like. Just do today.’
The views and opinions expressed in this article are those of the author and do not necessarily represent those of the Doctus Project.