Alice Salisbury

Alice Salisbury

It came on suddenly. It was Christmas Eve, so I was surrounded by my family. My dad is a doctor, mum a nurse, and brother a neuro-scientist, so we are well versed in medicine. The consensus was that it was likely spasms. However, after seeing my foot drop, my dad became concerned. It is a sign that something is wrong with your Central Nervous System.

Within 24-hours I had lost the use of my left side, bladder, and bowels. I think if I knew then what lay ahead, I would have been scared. But as a sportswear designer, with an keen interest in the body and no knowledge of what was to come, I was fascinated. I was lifting my arm and just watching it fall.

It is a neurological condition called Transverse Myelitis. Effectively your immune system attacking the body. It is extremely rare, and with little research. They still don’t understand how you contract it. Emma, who is also a part of M2M, is the first person I have met who has it.

It is eight years now, and while it has steadily improved, it hasn’t been linear. Each year, there is a complication, and each month, with my hormone cycle, or any other stress on my body, I am set back. This can lead to months of fatigue. It makes doing my work, and building my life, extremely difficult.

The loss of independence was incredibly frustrating. Suddenly, aged 30, my parents were my carers. At first your friends are with you, but as time passes, realising this is a long road, they drop away. The same was true of my relationship at the time. What this does do however is create space for new, stronger connections.

My Mum would create a bed in the garden for me. It was the only place I felt safe. I have learnt to tune into nature’s frequency, and into my body. Reading the Tibetan Book of Living and Dying, it helped me accept it. For so long I was fighting. Trying to conform, to keep up, to get back to normal.

In confronting my own mortality – and there have been many touch and go moments – I also witnessed the death of my identity, and my former life. There is great freedom in this surrender. Trusting where your life is headed, and not struggling against it. I think it has made me a nicer and better person.

I have major imposter syndrome about being here. I feel that others are more deserving. But through this experience, I am realising quite how badly I have needed this community. To support and expand me. It came, shortly after a complicated operation, when I had lost a little of my spark for life. I love the emphasis on creating new narratives, which is what I am all about. Realising that there are so many other narratives for me.

Back to Beneficiary Stories
© M2M Foundation 2024.