Missive's co-founder, Emma, shares her experience of being newly disabled following a cancer diagnosis and how it impacts her at work.
Having lived with the privilege of being able bodied for 35 years of my life (never imagining I’d be anything but), I became moderately disabled on 10th September 2019.
A month previously, after weeks of unexplained pain, I had an MRI that unearthed a rare and high-grade tumour in my left humerus, which needed urgent removal. My official diagnosis was high-grade dedifferentiated parosteal osteosarcoma or, in layman’s terms, bone cancer. The tumour was fracturing my bone apart and had breached the bone canal, meaning I was at high-risk of it spreading. Metastasis would be virtually impossible to cure. My prognosis was uncertain.
I was told that amputation would give me the greatest chance but that, given my age (and the fact I had a ten-month-old baby), they would opt to replace my shoulder and humerus with an internal prothesis instead.
Further tests showed that my tumour lay dangerously close to one of the most important nerves in the shoulder. To leave it in place would risk recurrence and a worse prognosis; to remove it would leave me permanently paralysed in my left shoulder. For me, it was an easy decision to make.
And so, I ended up with a Bayley-Walker prosthesis which runs from my shoulder blade to just above my elbow. My surgical team removed part of my shoulder, the majority of my humerus, a lot of tissue, and that key nerve. As promised, I was left with no voluntary movement in my shoulder. I can move elbow-down and still have full use of my hand.
This means I can’t reach up, out, or in front. My upper arm is almost permanently clamped to my side. In many cases, I can live my life as I did before, but there are ways in which I can’t. There’s a limit to what I can carry, there’s nothing I can lift above my head that requires two hands, and I need to sit extremely close to the desk to type and take regular breaks to prevent strain.
I’m vulnerable when I’m in public. Doors slam in my face when people expect me to reach out, I lose my balance on the underground when I’m holding a bag with my able arm, and I can’t reach out to take something someone is handing me.
I can’t cycle, plank, burpee, climb, row, scramble, hang, stretch, downward dog, or ski. Some of these I’m not devastated by (!), but the point is, I have a new and unnatural limitation. My brain still thinks I can, and my body reminds it that I can’t.
It has definitely impacted my life at work. As a founder it’s exacerbated my vulnerability (if that was possible!). As a leader it’s helped me understand privilege. As a consultant it’s made me prioritise. As an activist it’s made me purposeful.
Whilst my specific impairment is unique to me, I am far from in a disability minority. 15% of the world’s working age population lives with a disability or long-term health condition, so I’m in good company. I’m still in the early stages of figuring out my limits, and how I can help to improve the working world for others with a physical impairment. This year, Missive became a Disability Committed Employer and we are actively working for level two status.
There’s more to do, I know, and I’m on it. For this, I can and will reach.
