Rethinking Disability and Faith

Through the roof logoLiving Life to the Fullest Co-Researcher Sally Whitney has had an article published in Roofbreaker, an online magazine from Christian disability charity, Through the Roof. The article, in which Sally makes sense of her disability and illness experiences through her faith, will be published over three editions.

Editors Ros Bayes said, “We received this moving testimony from Sally, one of our Roofbreakers. After reading it, I was so moved that I decided, rather than write a thought for the month, I would allow her testimony to speak to us all and challenge us about the depth of our relationship with God.”

We are grateful to re-post Sally’s article below – you can also access it here, in Roofbreaker.

“My Parents Were Told to Say Goodbye to me as it was the Last Time They Would See me Alive…my Only Refuge was the Presence of God.”

My childhood was idyllic. I grew up in a very loving family, went to excellent schools and never wanted for anything. I knew what it was to feel loved and I knew what it was to work hard but I had no idea what it was to suffer. I grew up believing in and loving God. I went to Mass most Sundays and catechism on a Saturday. I knew Bible stories, I was sorry when I did something wrong and I prayed to God every night. I didn’t however have the intimacy of relationship that kindles trust. I didn’t know what it was to trust God fully in all things, I had no reason to put all my faith in him. I had not surrendered and I thought that I had to earn His love.

I studied 4 A-levels and decided to study medicine as I wanted to make a meaningful difference to the world and to serve God. I received a place at several medical schools and was planning to embark on my journey into medicine in September 2005.

However, in the Spring of 2005 I came down with a virus. Initially I thought I had really bad flu. I was in a lot of pain and couldn’t get out of bed. I was extremely tired and developed a goitre – a large lump in my throat which turned out to be my inflamed thyroid. It later was diagnosed that I was suffering from thyroiditis.

I had always achieved my goals by pushing hard and working at things until I got to the place I wanted to be. I adopted the same methodology to overcoming my illness. I refused to stay in bed but went to join my family on a skiing holiday that they had already flown to the Alps for. I arrived at the chalet feeling exhausted, beyond any tiredness that I had felt before and in a lot of pain. I had to go straight to bed. I could only ski for a very short period of time before coming home and going back to bed. Finally I had to admit defeat that the skiing holiday was not meant to be. I returned to the UK and focused my energies towards taking and passing my A-levels that would take place in the summer.

I was still constantly tired, plagued by pain and unsure what was happening to my body. I would drag myself into school only to be sent home or to be told to go and lie down in the common room as I was visibly flagging in lessons. I started spending more and more time in bed and was not able to revise for my examinations I pushed myself hard to go into each A-level exam. However special arrangements had to be made after I collapsed in one of the exams. In another one I passed out and had to crawl out of the room before being rescued – found stranded on the stairs. It was eventually deemed unsafe for me to continue and I missed my final few examinations.

Despite everything, I received my A-level results in the August and got four A’s. I arrived at school to collect my results in a wheelchair. It was explained to me that I was now suffering from post-viral fatigue. I had to decide how I was going to get to Edinburgh to study medicine in September. It became increasingly clear that with only a few months left I wasn’t going to be fit enough. Despite my strong beliefs in God and despite my real fear and awe of him, I don’t remember praying to him to take away my illness or to help me get medical school on time. I think I still thought that I could push through and do things on my own, through hard work, as I’d always done.

I was diagnosed with M.E./chronic fatigue syndrome. That Autumn I started to have seizures, violent spasms that would cause my whole body to contort, sometimes for hours at a time. Nobody knew what was going on, not the doctors, not my parents and not me. The seizures became more frequent, set off by increasingly minor triggers; sitting up for too long, eating a large meal, a change in temperature.

This changed things. Suddenly, things seemed more out of my control and I was less and less in command of my own mind. I was wracked by guilt. The guilt that I was worrying my parents so much, that I was burdening them with endless care needs. I was disturbing my younger brother’s life as he carefully carried me to bed after starting seizures at meal times and lay with me while I writhed. I was letting everyone down; I wasn’t at university, I wasn’t training to be a doctor and I wasn’t following the star-studded path that I had set out. My guilt and severity of illness led me to cling to God. I would beg Daddy to take me to Mass where I would sit slumped, trying to hold my head up. If I made it through the service without seizing, I would then beg to go to confession. I would profusely apologise to God over and over about letting Him down, not being strong enough for Him, not being the girl I thought He expected me to be, and mostly for being a burden; for causing so much pain to my family that I was taking up all their time and energy – causing them to suffer immensely. The priest wouldn’t accept my confession. He pointed out that I wasn’t sinning, I was ill and it wasn’t my fault. I didn’t believe him.

I was in hospital in Essex for almost 8 months, where I was neglected, abused and punished for not responding to treatment and not being a typical ME patient. I would later find out that this was because I did not have ME but several other rare conditions. I was totally alone. Initially I was allowed no visitors, and then weeks after, I was only allowed short, timed visits from family at weekends – just like in prison. The hospital didn’t feed me and my weight plummeted (eventually, after much pleading, I was fitted with a feeding tube), my seizures ratcheted up a notch and I became more and more incapacitated. Soon, I was totally bed bound, paralysed by weakness to the extent I could only move my right hand. I couldn’t speak. I was like an infant in my physical needs, but also an infant in my spiritual relationship with God. I needed Him like a baby needs its parent – I didn’t have a clear understanding of this relationship but the need and helplessness was there.

My parents were told on multiple occasions to say goodbye to me as it was the last time they would see me alive. Amidst the constant bombardment of punishment and pain, my only refuge was the presence of God that I found in the visits from hospital ministers and lay people.
The Bible is God’s life support to us as we encounter a world of difficulty. It literally was that – life support. My meetings with God in this world of pain kept me going, sustained me. I still couldn’t physically eat and was severely malnourished. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73). God gave me the strength to keep on living – I lived off Him. Slowly, I regained my strength, learned to sit up, and my seizures slowly decreased in frequency.

I have no doubt in my mind that without God, I wouldn’t have survived. BUT I knew joy. He planted hope in my soul, wonder in my mind and joy in my heart. I felt immense joy at the feeling of the breeze on my skin or a bumble bee buzzing near my head. I saw God’s beautiful creation in a whole new light. It was as if I had died and entered a whole new world. I wanted to do everything. Talk to everyone. Really LIVE! Such dark times led to me seeing everything in wonderful, vibrant HD! Each new experience, for example the simple task of ordering a coffee, had to be relearned as if it were brand new! I had been set free from the prison of hospital and entered a world of lightness.

Soon after being discharged, I was correctly diagnosed with some of the conditions I suffer from, the main one being an autoimmune condition called Lupus. It is a disease where your immune system acts over-zealously and attacks the body’s own tissues. Although there is no cure, there is medication that can help symptoms and the simple feeling of being understood and cared for was a treatment in itself. In truth, I thought I had been healed. I really believed that God had given me a second chance to pursue my dream. I was so grateful to this God, this Father that had saved me that I wanted to find out everything I could about who He was. Things that were once central in my life were mundane – all I wanted to do was talk about and worship this God who had saved me.

By now, I had lost my place at Edinburgh medical school and had to reapply all over again. I threw myself into preparation for examinations and interviews with the same ferocity that I had pre-illness. I was accepted into 3 medical schools, despite still being unwell. It seemed miraculous that my brain still functioned well enough to study medicine, that I had persuaded the medical schools to give a sick girl a chance. I chose Brighton to be the place where I would try again.

Psalm 37 v.4 says, Take delight in the Lord, and he will give you the desires of your heart’. Rather than pursuing the things you desire, if you delight in God he will give you the desires of your heart. I thought that was what I was doing, ALL my joy did come from the Lord, but somehow I was wrong.

I started medical school in 2009 and loved it. I did well on the wards and in the work. Yet my illness still taunted me. There was misunderstanding over the cause of my symptoms. Once again there was lack of belief over the validity of my illnesses and whether I even had the correct diagnosis. Soon I found myself fighting again.

Another miracle, my prayers were answered; I could continue at Medical school, my stubborn desire to follow my own plans was rekindled. But it wasn’t to be. Soon, my health deteriorated and I was back in hospital. All of the fighting to be believed, the wrestling with God for answers, was in vain.

I was treated more aggressively for my lupus but my symptoms continued inexplicably. I was told by my lupus doctor that I would never be a doctor, I would never finish my medicine course.

This was the most crashing blow to me. It far outweighed the frequent dances with death I had experienced in Romford and the terrifying medical emergencies to come.

Sally Whitney, Living Life to the Fullest Co-Researcher

To be continued next month.

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