Editor’s note: You may remember Stevie’s reflective story “Disempowering Support” from the previous Luke’s Journal “Disabling Disability”. Today she writes another reflection on her surprising change in circumstances and reminds us that changes in health are significant stressors and challenges – even when for the apparent better. )
I’m a woman in my 30s who has cerebral palsy. I work for CBM Australia as a Community Education Officer. CBM works to break the vicious cycle of poverty and disability. I advocate for the empowerment and inclusion of people with disabilities. I have a Diploma in Christian Counselling. In November 2016, I had an operation which dramatically improved my physicality. This turned out to be an upheaval in my life, identity and theology.
In November 2016 I had an intrathecal baclofen pump inserted into me. The pump releases baclofen, a medication which treats spasticity, into my spinal fluid. The operation was successful. To treat a secondary issue, I had a catheter inserted for six weeks. The catheter caused intimate pain and leaked frequently. The pain had a profound negative impact on my sense of womanhood. Nevertheless, I could feel little changes happening in my body. One day, my physio told me to stand from a sitting position, without using my arms to assist me. That, I thought, was ridiculous. Then I did just as she had instructed! I was stunned.
I showed my housemate later that day. I didn’t know her mouth could open that wide! I told my parents to drop in later that day so I could show them my new party trick.
The catheter came out on Christmas Eve. On Christmas Day I showed my brother my party trick and whilst standing, he took my walker away and beckoned me forward. The little twerp! I took seven steps on my own. I hadn’t noticed how much my body had changed whilst the catheter was in. I was elated, but I felt pain in my heart too. I decided to put that down to the intensity of the past few weeks.
Over the next few weeks, I noticed something different every day, whether it was being able to do something new or a subtle change in movement or balance.
It was exciting, but the pain in my heart persisted. My emotions went from joy to grief and quickly back again. I was confused. I didn’t know how to feel. I flittered with intensity from one idea to another to another. I had more energy and less physical pain. More energy than I knew what to do with. I had trouble getting to sleep at night. At one point I had strong desires to self-harm.
As the months went on, I explored preparing food and drinks for myself. My housemate and I came up with creative ideas, such as using spreads for sandwiches which came in squeezable bottles. I was so excited when I could make coffees, hot chocolates and smoothies for myself. My independence increased and fluctuated, which my housemates had to adjust to. They taught me things about cooking, and how to open cans of drink!
The emotional turmoil continued and my housemates suggested I see a counsellor. But I thought I could work it out myself. Eventually I realised I needed some guidance. During my first session with my counsellor, she asked me what I needed to let go of. I reflected on that over the next fortnight. I needed to let go of the ‘static Stevie’. My abilities, movements and ways of thinking were changing constantly. I kept looking for the time when my physical improvements would plateau – when I could get to know my boundaries and my current self. I realised I may not stop changing, especially as I continued to invest in my body through my exercises.
The second thing I needed to let go of was having a natural body shape. I had been struggling with the bulge in my tummy where the pump is situated. I felt unattractive, unnatural. I often rubbed it to try to get used to it. Eventually I realised it was never going to feel like part of myself.
I realised I hadn’t felt close to God for months, though I had continued to pray and read Scripture. Over the years I’d developed a strong theology of weakness and suffering – that I draw closer to God through suffering and God uses me through my weakness. I knew how to draw close to God through suffering and my need for comfort. Suddenly my life was getting easier. Where was God in all of this? Did my new strength decrease how much God could use me? My disability had been integral to my self-concept. Who was I if I had less of a disability?
I told my counsellor that I didn’t know who I was anymore. She asked me questions about the colour, musical instrument, etc. of my heart. My heart would be neon purple and red. It would be an acoustic and electric guitar and it would play for the people I love, and for justice. She said ‘See, you know who you are.’ I treasured that expression of me.
Further on in my journey, I shifted from asking myself ‘Who am I?’ to ‘Who do I want to be?’
With so much floating in the air, perhaps I had a chance to recreate myself. I decided I wanted to continue to love deeply, think deeply and to be passionate about justice.
I was experiencing God in new ways and opening up to new possibilities in my knowledge of Him. I was learning that God was in strength, healing and independence, as well as weakness, illness and fatigue. My faith was becoming less black and white. I began holding matters of faith lightly. I grew increasingly uncomfortable at church. The church had been home for many years, but it just didn’t feel like home anymore. Though I was well loved and had loved deeply, I just couldn’t stay there. I had changed and needed to continue my growth and exploration of faith elsewhere. I was deeply grieved. During my second visit to another local church, the pastor told the congregation that following God isn’t binary. I knew then that this church would be my new home. I continued to grieve the home I left. The changes in me required me to make more changes, which meant more adjustments. It will take time to know a church family like I knew the one that I left.
I’d always believed that God created me to have cerebral palsy. My counsellor challenged this belief a few times, but I was adamant. During the months of therapy with her, we worked with my attachment issues, which stemmed from being separated from Mum as a newborn in hospital. I also talked to her about issues that cerebral palsy brings to sexuality. Eventually I came to the conclusion that God couldn’t have created my cerebral palsy. My cerebral palsy was caused by a baby being strangled to very near death. That’s not an act of a loving God. And I know that human beings were created to enjoy sexuality. It doesn’t work to say I’m created sexual, and I’m created with cerebral palsy.
Realising God didn’t create me with cerebral palsy changed everything. It was a paradigm shift.
The biggest head-spinner of all: I can’t do many things because something unfortunate happened to me, not because God gave me cerebral palsy for a good purpose.
A few weeks later I realised that I wasn’t in the emotional pain that I’d been in. And I wasn’t feeling the need for people that I’d always felt. Unconsciously my self-concept had separated from my disability. My disability, hence my needs, were no longer fundamental to my identity. I now feel relaxed and confident in my relationships. My housemate tells me she sees a huge difference in me – that I’m relaxed and joyful. I’m free from constant emotional pain.
My journey following my operation was complex, accompanied by joy and grief. The improvement in my physicality called for deconstruction, reflection and recreation of my identity and theology. I’m enjoying exploring my new freedom.
BIO: Stevie Wills is a performance poet, public speaker and writer. She works as a Community Education Officer at CBM Australia. Stevie advocates for the empowerment and inclusion of people with disabilities, including those who live in developing countries. She has a diploma in Christian Counselling
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