Living 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, has been published over two editions. Last month we published part one, below we share part two.
makes way for new life.
I surrendered. Totally and completely. I lay down at the foot of the cross and gave the only thing I had left, my soul. Jesus was the only one who could take my shame, my loss, my pain, and pin it to the cross. He loved me and only He could take my brokenness and make it whole. I had been describing myself to my friends as a broken statue that had shattered into a million pieces. I could potentially be put back together but I would never be beautiful and flawless again. I was tainted. But that’s why I needed Jesus. It would be years late, here at St Peter’s, when I heard of the Japanese art form of ‘Kintsugi’- fixing broken pottery with gold paste-making the whole all the more unique and priceless. At the point of falling at Jesus’ feet, I didn’t feel beautiful, but I knew I needed him. I had the realisation that I wasn’t enough in my own right and only Jesus could take my weaknesses and make me strong.
I held fast to the verse in 2 Corinthians 12:9-11, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” I placed a card with this verse on at the foot of my bed so every day I could try and convince myself that my weaknesses may one day be strength.
So there I was, broken and ill, getting new unexplainable symptoms every day but knowing that I needed new plans fixed in Jesus. Having given up on the medicine dream, I transferred to study cognitive science and started at Sussex university in 2011. I was determined that I could make this work and I would do it for the glory of God.
I put all my trust in God to make it work this time. It wasn’t easy, I was getting progressively weaker and many physical problems in all my major body systems would come up and weaken me further. My weekly trips to see specialists in London were exhausting and left me no time to study. More than that, my physical health meant socialising was becoming increasingly difficult. When I was able to attend church I felt surrounded by God’s love and felt him present in my life more than ever before.
I was diagnosed with Ehlers-Danlos syndrome and associated conditions in the Spring term of my first year and that meant a battery of new tests and treatments. I became unable to participate in anything and realised that God’s love and goodness was so much easier to access in community. I was faced with the problem of how I could be in community when my body was physically too weak to join in. I also came face to face with the realisation that my illnesses weren’t going away. This was for life. Although I was a unique child of the Father, I would always be broken and flawed. The realisation only came later that this is the case for everyone, regardless of whether their bodies worked or not.
After I successfully made it into the 2nd year I fell broken at the foot of the cross again. After losing all blood flow to my hands, turning them black, I had my most severe and life-changing seizure. In the frenzy of the resuscitation area of A&E, after hours of seizing, I stopped breathing and I had to be resuscitated. I was intubated, put on a ventilator and into an induced coma. I had had a respiratory arrest and a whole new battle lay in wait.
I was in intensive care for a very long time, having seizure after seizure, before I was moved to the National neurology hospital in London. The seizures were unbelievably painful as I would dislocate my joints as I writhed, contort into unbelievable yoga like positions with the soles of my feet meeting my head, and I was in a constant state of confusion due to the drugs. But this time, despite the seriousness of my situation, I coped better. I had Jesus. I had surrendered. Whatever happened, my hope was pinned on Him. I was put into an isolation room on the ward as I had contracted an infectious virus and so I had very little contact with anyone else. I was alone again. But when I was able, I would put on worship music on my phone and lie in the presence of God’s love. I must have listened to the Oceans album by Hillsong at least every day of my stay. And I experienced joy, yes, joy from revelling in his presence. I still had not lost hope. Psalm 67 verse 7-8 says; Because you are my help, I sing in the shadow of your wings. I cling to you; your right hand upholds me. And that’s what I did, I clung on. I clung on to him and I clung onto life. That’s what I continued to do after I was discharged. Once again, I had to learnt to sit up. Once again, I had to learn how to eat a meal without seizing. 5 years later I haven’t cracked learning to walk. My life had changed dramatically again. I was largely confined to a bed and then a wheelchair and I continued to have violent seizures. I also continued to have respiratory arrests. I have been in intensive care just under 10 times, yet each time I have pulled through and started breathing again after coming out of the coma. And I breathe in more than oxygen. I breathe in His life-giving spirit. My new situation of having carers with me 24/7 and risking respiratory arrest at any point was made easier by taking solace in the Bible. I took reading it as seriously as I did my physio exercises. I still do. He is where my help comes from.
And still questions plagued my mind: Could I return to society? Would life ever again contain the normal things that I desired? Would I ever be able to stop fighting this battle for life?