You Matter – Speech to Residential College Students Oct 2017

I was asked to do a motivational speech at a University Residential College before exams. This was my speech:

‘YOU MATTER’ – SPEECH TO RESIDENTIAL COLLEGE STUDENTS, OCTOBER 2017

My name’s Shiloh Moore. I’d like to talk to you about some of my life experience from living with Fibromyalgia Syndrome and ME/CFS. This stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

I have been severely ill now for 27 years since childhood. Diagnosis took 4 years and I was told I had growing pains. I thought everyone must have growing pains and nobody else complained about it, so I thought it was a ‘taboo’ subject. I learnt to block out my constant pain that was always changing from moment to moment, and I tried hard not to complain. My parents believed my pain was real and continued to look for help from many different doctors. At 14 I even had to cut off my long hair as it caused too much pain. At 15 I had to leave school and by 16 I was completely bedridden, unable to bathe or feed myself. For a few years I needed to be pushed in a wheelchair to leave the house. Often I was not well enough to even sit up in a wheelchair.

Since then I have had times of significant improvement, but two decades later I am still in constant pain and am still very ill.

As a teenager, I had to give up everything. I lost my identity – my abilities and passions and my definition of who I was. I was devastated and grieved every loss enormously. But gradually I realised I am beyond these things. Even in constant pain, with limited abilities, I am still here. And I matter.

Even as a teenager I never asked ‘why me?’ I figured if millions around the world had to have ME/CFS, or live with some sort of injustice, then why not me? My life had been pretty privileged up until then.

Over the years I sometimes struggled with pressure from some church people who wanted me to pray to be ‘healed.’ Personally, I came to be at peace with the fact that I was ill, and that perhaps I may be for the rest of my life. I knew it was not my fault. I was not being punished by God, nor did I ‘not believe enough.’ In my 20’s I spoke to a Theologian friend who explained to me that the translation from Hebrew of the word ‘healed’ in the bible does not mean ‘cured.’ ‘Healed’ translates as ‘made whole.’ This I loved. This freed me, as I already felt whole. I felt loved. I felt supported. I felt locked in an aching body, but felt free within my soul, even while I lay bedridden and in extraordinary pain. In many moments I transcended the pain and I felt truly ‘made whole.’ With this definition, I already was ‘healed’ spiritually.

Up until a year ago, I spent most of the past 7 years housebound mostly in bed again. In all that time when bedridden I didn’t feel stuck in bed in a small room. A lot of the time, I felt incredibly alive. It was hard being bedridden at first all those years ago, but in time I learned to escape in my mind. I immersed myself in thought and pondered the meaning of life. Then I worked hard at learning to imagine and visualise. While in intense pain, I would go within and imagine conversations with friends, or imagine being in beautiful places within nature, with animals and music and scents and sensations to feel a part of it all. I escaped my body and I felt connected to the universe, like I belonged. I felt loved beyond measure. I truly believed my life was worthwhile, no matter how I was forced to live.

In 2015 I wrote this poem:

“Within Me, In This Moment”

In my body
I lie, captured.

In my mind
I feel anxiety…

oh, but
In my spirit
I dance free…

and

In my soul
I am whole.

In the last 7 years while housebound, with every moment that I was upright, I spent time using art to bring to life images that came to me. I used art to both express and escape from my pain. In 2011 I started a blog for my artwork. In the leaflet I have given you, there are artworks and a poem expressing life with ME. And my ‘Love & Light’ calendar displays escapist artwork celebrating life with joy and gratitude.

My advice to you if you are experiencing odd symptoms is to trust your instincts. You know your body. If you feel something is wrong, get it checked out. And if they don’t take you seriously, feel free to keep looking until you find someone who does. You may have a serious illness that can be treated or supported. Many illnesses are best treated early. Don’t suffer in silence.

And if you come across hard times, whether that be with illness or from some other circumstance, know life can and will go on and will still be good.

If you lose your abilities, or your job, you still matter. If you have a mental breakdown, ‘you’ are still there. If you are stressed by exams, know they will be over soon and life will go on whatever marks you achieve. If you are overwhelmed with grief, know it won’t always be that way. If you put on 25kg, you are still beautiful. If you are single long term or you can’t have children, you are whole on your own. If you are isolated and lonely, you are worthy of love. No matter your circumstances, your life will still have value. Life will still be worthwhile.

A friend of mine in the US who has been bedridden with ME for 30 years, Douglas once said to me: ‘where there is life there is hope.’ I sincerely believe this. I also add: You matter. You are loved. You are a worthwhile human being in whatever state you are forced to live. Your life has purpose.

So be grateful for what you have in life. But don’t be terrified of losing it. No matter how life turns out for you, you matter, and life will still be worth living. Have faith that you too may find inner strength to cope through hard times.