MY WEEKEND STORY:LIVING LIFE
Now in his late twenties, Toby was born with Spinal Muscular Atrophy (SMA) a neuromuscular condition that affects his overall body strength and prevents him from walking. He needs around the clock care. However, despite spending his whole life in a wheelchair it hasn't stopped him from leading an active and fulfilling life. But he almost didn't live to fulfill many of his life's ambitions as he was struck by critical illness and spent three months in a coma and on life support. Here's his personal story.
As Project Manager for the BBC I work on Future Media projects and Chair BBC Ability (disabled staff forum). I am a Personal Performance Coach to media executives and have published a self-help book. I've enjoyed successful careers as Engagement Leader for Cerner in the world’s largest healthcare IT program and Consultant at Accenture for global Communications and High Tech clients. I also worked for British Airways as an Account Executive and LloydsTSB as young as 15.
I went to University of Derby and achieved a 2:1 in a Marketing Management degree and got Distinction in an Advanced GNVQ in Business after school. I moved to London to pursue my career aspirations, own my own apartment and have a team of live in Personal Care Assistants (PA) 24/7.
I've always strived to be a high achiever and leave a legacy. March 2010 was no exception - focused on my BBC career, building my coaching portfolio, chairing a national disability charity (JTSMA), producing a pilot for a new business entertainment TV show and more. Christmas 2009 was 'planning time', to decide what I wanted to achieve in 2010. So I produced a Mind Map outlining my goals. I lived by Stephen Covey's principal of Begin with the End in Mind.
Whilst proceeding with vigor I developed a chest infection. After my second course of antibiotics I became dehydrated. I go to A&E, had X-Rays and blood tests and the doctor admits me with a severe chest infection. One morning I'm found having a seizure and fighting for air. The doctors and nurses rushed to my bed and brought me around again.
My chest infection got worse and I was suffocating and couldn't breathe. I went into a coma and was put on life support to keep me alive - I lay in intensive care unconscious for two months. I developed multiple organ failure - my kidneys, liver and stomach stopped working and I was on dialysis. An MRI scan revealed a bleed on my brain. A nasal gastric (NG) tube fed me nutrients and I had a tracheotomy in my neck. I had thirty tubes, bags and bottles connected to my body in all.
My Mum who had practically moved to London to be at my bedside went away a weekend break, however, soon after, the doctor summoned her, as they didn't think I'd make it through the night. They turned off my life support. In spite of this, I stabilized and two months passed before I woke from my coma.
As I opened my eyes I was really confused. I thought I was 100 years old, that the BBC had fired me and the physios were out to kill me. At first I couldn't talk. I used my eyebrows to say “Yes” (raising them) or “No” (a frown). I asked the doctor whether I almost died and he honestly replied "yes, you almost did and you're lucky to be alive".
My whole world had shattered. Not a lot made sense. I didn't care that my hair was falling out from the medication. When I first sat in my wheelchair my arms were so weak I just drove in circles. My first time outside ICU was to the tropical fish tank with a tranche of nurses, tubes and equipment. I stared mesmerized at the fish.
I realized at this moment that what I appreciated in life had shifted if fish spellbound me. An OT visited daily to exercise my arms and hands to get them working again. I couldn't hold a pen or operate my iPhone. To this day I still can't feed myself or drive my adapted vehicle.
As soon as I had a Fluoroscopy to see whether I had the strength to swallow food my Speech Therapist and Dietician put me onto a puree diet. The first food I eat in over two months was pureed salmon and broccoli and mashed potato. I chuckled that the chef had shaped the pureed salmon into the shape of a fish.
No matter how much physio and suctioning I had I just couldn't clear my chest. I was exhausted, depressed and desperate to go home. I wanted to get back to 'normal' rather too quickly and so I arranged a phased return to work. I installed speech recognition software on my laptop and Access to Work funding for transport. Returning to work gave me structure and some purpose again. However, I struggled physically and emotionally. But I stuck at it.
Although I'm missing three months of 2010, this whole experience has had a profound impact on my life. It was a turning point in how I live life.
ABOUT THE AUTHOR
Toby Mildon works for the BBC in London but also help media professionals through his practice (MildonMedia.com) to make life work for them rather than against them. He uses his corporate and media background as well as his experience of facing challenges due to disability. You can reach Toby at firstname.lastname@example.org