A few months after we got married in late 2003, I started feeling unwell. It was a very vague sense of “not right”. I started losing track of time, I hurt everywhere, I was falling over a lot, I was constantly tired, I would accidentally cut myself preparing meals and not feel it. MRIs, a lot of blood work and spinal taps and the doctors pronounced “demyelination”.
By 2006, I would wake up in the morning and call my husband on his mobile phone in the living room to let him know I was awake. He would come into the bedroom and carry me to the toilet. He carefully placed me on the seat, check that I was comfortable and leave. 30 minutes later he came back and checked on me to see if I needed more time.
Many days I did.
At this point my lower abdomen was covered in bruises as I attempted (very unsuccessfully) bladder voiding through the “punch down” method. One of the things I don’t remember them telling me when I was diagnosed with demyelinating lesions was that I would be unable to void my bladder, even though it was full to bursting.
Why am I telling you this?
When I speak in front of a group of movement specialists, trainers, investors or if I am just telling the story of what I do and how I got here, I get asked (almost 100% of the time), “What motivates you to do what do you do?” or “What motivates you to keep doing what you do?”. I always reply, “I want to have the dignity to pee by myself.”
There is usually a chuckle and then they realise I am being serious and uncomfortable silence falls.
Yes, I want to change how people view disabilities and the disabled.
Yes, I want to change neurological rehabilitation protocols.
Yes, I want to practically apply biohacking and the Quantified Self.
Yes, I want to change how people manage chronic condition & aging.
Yes, I want to champion new medical technologies.
But I am driven by something purely selfish. I want to be able to walk by myself, feed myself, go to the toilet by myself for as long as possible. For as long as possible, I want to be able to feel my husband’s hand in mine. I want him to look over at me and smile; not look over at me and worry.
It is only when activities we consider basic biological instinct and natural response is taken away, are we forced to re-evaluate life. What is truly important? What are our real priorities? When I am stripped down to my most vulnerable and there is nowhere to hide, who am I?
This is where I start with all of my clients. I always approach the first meeting as a patient, not a practitioner. They have already seen at least a dozen professionals before they got to me. They don’t need another person to ask about their medical history (I have already read the folder), they need someone who has been through it, who has walked the path and stumbled, who has come back with a better map of the trail. We start as a team.