Portrait: Holly
I experienced an ABI in October 2021. Following a successful donor stem cell transplant to cure Hodgkins Lymphoma, I developed an extraordinarily rare form of post-transplant lymphoproliferative disorder (PTLD) resulting in multiple brain lesions.
A little bit about Holly
My name is Holly McGivern. I am a wife, sister, auntie, local government officer and ABI survivor. This is my story.
I experienced an ABI in October 2021. Following a successful donor stem cell transplant to cure Hodgkins Lymphoma, I developed an extraordinarily rare form of post-transplant lymphoproliferative disorder (PTLD) resulting in multiple brain lesions. I’m only 1 of 3 people globally to experience this. My initial diagnosis was bad, my husband, James was told that he should plan for residential palliative care as I was so poorly.
Beating the odds
Phenomenally I was able to return home just before Christmas. My consultant said there were 3 reasons I’m alive, beyond the care of a medical team who refused to let me die: my legendary stubbornness and questioning mind; the love of James, family, and friends; and relentless optimism.
I was lucky enough to return home with a referral to the local neurological team and an open line to my hospital team. I was supported with physiotherapy, occupational therapy, a psychologist and dietitian.
Additionally, both my and James’s employers have been brilliant throughout. My job kept me employed and paid my sick leave throughout this process. James had paid time off to attend my doctors' appointments and provide extra care when I needed him.
Current challenges
Coming home was magical of course, but I’ve had to relearn everything: all aspects of life, including walking, talking, concentrating on anything. It has been very tiring to think about the minute details involved in ‘simple’ things such as brushing my teeth. But when my head is aching with the effort of thinking, I remind myself exercising any muscle aches and my brain is working hard to rewire new pathways and get stronger. I’ve always been an optimist, seeing life’s hurdles as problems to be solved and learnt from rather than insurmountable barriers. My ABI galvanised this in me.
Having always been very self-assured, the hardest thing was my lack of confidence and trust in myself, which led to mega anxiety and a constant state of fear. My sympathetic nervous system was in overdrive. This caused an emotional numbness which has continued to decrease bit by bit the more I do. The first time I cried to the song, “Time after Time,” was the groundbreaking moment where I realised that ‘I can still feel’.
The small, daily wins
I enjoy walking, gardening, birds, meditation, Pilates, cooking, fashion, music, books (especially dystopian ones) movies and the pub. As the numbness and fear subside and my energy increases, I take great pleasure in doing these again, laughing at films and with friends is no longer a challenge or an assault on my senses. The more I do, the more I can and want to do now things like cleaning my teeth take up less space in my brain, the world is a bit less scary again.
Bit by bit I’m home in my skin again and feel like I’m no longer a stranger in it.
Focusing on things I love that soothe and calm me has brought me back from the grip of fight or flight into the zone of my parasympathetic nervous system to a state of rest and digest. Daily meditation and walks help me to climb back out of my head into my body.
Back to work
Returning to work on a phased return in 2022 was hard, more relearning, but also a return to a thing that brings me joy. My work has always been a large building block and a constant in the messy jigsaw of life. Seeing people I’ve worked with and helped over the years remind me of who I am each day. What helped me was their kindness, patience and provision of coaching to reassure me that I still add value.
My advice
Take time for you to do things that you love, On the days when joy seems in short supply, don’t try to seek it taking up precious headspace, look up and out and relish tangible things you can see, smell, hear, taste and touch. Be patient, trust yourself and stay present. Life is too filled with joy to focus on what has passed, assigning fault and blame to should have's or might have been's. The process is akin to grief. You have lost your former life, but a form of peace, slowly and always irregularly will descend. Be kind and honest with yourself and the ones you love, a brain injury is a physical and mental trauma akin to being in a combat zone with no rules.
Quotes that helped me during recovery
I’d love to be able to pick a single quote but I’m greedy and a curious magpie, so you have two that have helped me through the tough days and stay on target:
“The world breaks everyone and afterward many are strong at the broken places.” Earnest Hemingway, A Farewell to Arms
“Tell me, what is it you plan to do with your one wild and precious life?” Mary Oliver, The Summer Day.
Follow Holly on Instagram: @takepictureswithyourmind