How ridiculous. Really. Where on your “Life Journey” would you factor in that they would chop off all your limbs?
After 10 months in hospital, a Strep A infection, Septicaemia and all that jazz, this was a regular thought going through my head. My husband Rod’s too. What a ridiculous situation to find ourselves in; a quad amputee. BUT, on the other hand I was still here.
Newly out of my coma, tracheotomy still in place, literally too weak to move, I had a day that was my turning point; we all have them. I knew I had the choice to live or die. I was still incredibly ill thinking how the hell do I recover from this? How does one stay sane enough to keep going?
I decided to laugh my way through. I named each thing that I had attached to me. My tracheotomy was Trevor, my bed, Harley because it had wheels and down the track I named my arms Alana and Alan after my prosthetists. My new legs are Stan Ding and Neil Ling.
This attitude was the only way we knew; just poke fun at it. On our first family holiday after getting sick, my sister asked us to send her photos. It was 9.30 pm so the only photos we could take at the time was of our hotel room. So, Rod pulled off my plastic arm and put it in the fridge, holding a beer. Thus, began the adventures of Alana, Alan, Stan and Neil.
This attitude was the only way we knew; just poke fun at it. On our first family holiday after getting sick, my sister asked us to send her photos. It was 9.30 pm so the only photos we could take at the time was of our hotel room. So, Rod pulled off my plastic arm and put it in the fridge, holding a beer. Thus, began the adventures of Alana, Alan, Stan and Neil. This frame of mind has been an incredible strength to my entire family. We did show and tell at Kinder where the kids asked us all sorts of questions. Had hilarious nights on Facebook having conversations with total strangers. One-night Rod was out, kids all in bed and I posted that I couldn’t get wine out of a cask. I had so many offers from people to come and help. The next morning everywhere I turned people kept asking me if I did get that glass of wine in the end.
I have found that there is no point hiding my disability. It is not something I should be ashamed of. People stare at me constantly and frankly I am fascinating to look at. I have two robot arms and two pretend legs. Just like a pirate I told the kinder kids. But I am finding it hard to keep strong on the inside. I live in a small country town and everyone knows me. Everyone. But, I don’t want to be the town freak.
A positive attitude is vital but little things that were once so easy are now a source of frustration. It’s when I do things like putting the washing in the machine but can’t because my robot hand is playing up. It’s then I do scream with tears rolling down my face and I kick and throw my arms across the room.
"Sometimes there is no laughter to fix the day’s problems.”
One thing I find incredibly hard to see are the success stories. Gorgeous blond Para Olympians gliding across the beach in wiz bang blades. Wow. How fantastic that they can rise above and conquer the world. I on the other hand have been off legs for over 6 weeks; doctor’s orders. I would love to run along the beach, but honestly, I never ran before. I’d look terrible in a black bikini and my husband is yet to perfect the bikini line. I’m a redhead and I’d just get burnt. So, it won’t be me at the Paralympics. I just hope that one day I could walk the distance of a shopping centre without my stumps swelling.
It turns out I make a good news article as well. I don’t mind. I love telling people my story. It is fascinating. The word “Inspirational” is a catch cry of this new world I find myself in, but it’s a word that has been banned in our house. We are just trying to move forward and enjoy life.
Life is different. I am trying desperately to find my new groove. I used to be a stay at home parent; incredibly busy running a house, a few committees and mostly around in circles. Now my husband runs in circles, mainly around me. I am afraid that it would be so easy to just slow to a resting heartbeat. But I don’t want that. To my amazement I am finding it very hard to get information on what’s out there and to find others in the same situation. Privacy laws just seem to be in the way. So as my case manager said, if it’s not there, then I will need to create it. I’m not sure how, but I am finding a lot of other amputees on Facebook. Maybe we should all get together for a coffee one day?
So far, the other amputees always have a great story. It seems to be the great stories that make this “journey” such fun. My husband and I are really enjoying telling ours to anyone that will listen. So, we are doing quite a bit of public speaking. It’s our way of paying back all of the support we have received. We are also finding ourselves as the voice of the patient, helping hospitals reevaluated their processes.
Overall the last twenty months have been an extraordinary social experiment. How do you survive a trauma, a complete change of life? How does a town get used to a newly disabled member of their community? What do you place your focus on now and how do you not give up? One day I will write a book. Even if it’s just for my own sanity. I have so many mad stories I have to tell someone. Until then be in touch. Find me at “Friends of Mandy” on Facebook.