28 today. Ten years ago I was diagnosed with Neurofibromatosis Type 2 (NF2), a rare progressive genetic condition which causes non-cancerous tumors to grow on nerves in the brain and spinal cord. I’ve been through years of intravenous chemotherapy to slow their growth, MRI scans to monitor them, regular hospital appointments and tests, a 14 hour neurosurgery in 2019, and struggle with nerve damage and balance issues. But the most challenging and devastating aspect of NF2 for me has been gradually losing my hearing in my 20’s. I’m now completely deaf in my right ear, with impaired hearing on my left side and rely heavily on lip reading.
I’ve never spoken very openly about my health or hearing loss, mostly because it’s just been easier for me to stay positive by not dwelling on something I have no control over. Also because I don’t want to be defined by my NF2 and because I know I’m actually very lucky as the severity of the disease is so variable. Many have it much worse. Not to mention that lots of people live and struggle everyday with different long term health conditions and illnesses.
But lately it’s become clear that by not being open about it, by being embarrassed by it, I’m actually making things more difficult for myself because many won’t understand why I’m not speaking to them, or not replying to their questions. The pandemic and mask requirements have made things that much harder for the hearing impaired to communicate with others when out and about. I’m not being rude honest, I’m actually really happy to see you!
I’m so blessed to have my amazing family, partner and friends, who’s love and support are 100% the reason I’ve made it this far without losing my mind or myself along the way. I love my life, I’m very happy and am just the same Bobbie I’ve always been, but today I’m older and infinitely wiser. Thanks for reading.
‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’
– Bobbie Paton
This blog has been created following an NF2 BioSolutions UK coffee morning chat as a way to share stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at grace@nf2biosolutions.org and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!