Portrait: Jean
Ten years ago, I experienced weird symptoms where my hearing went funny; I could hear noise but couldn’t decipher the sound. My GP sent me for a scan and they diagnosed a cavernoma (a cluster of abnormal blood vessels) which had bled. My balance became very bad and I couldn’t stand if I closed my eyes...
Where Jean’s story begins
My name is Jean, I’m from Dublin and I’m 53 years old. Ten years ago, I experienced weird symptoms where my hearing went funny; I could hear noise but couldn’t decipher the sound. My GP sent me for a scan and they diagnosed a cavernoma (a cluster of abnormal blood vessels) which had bled. My balance became very bad and I couldn’t stand if I closed my eyes.
In October 2022, walking became difficult, so I went to A&E and was taken in with a much more severe hemorrhage. I initially felt okay and was shocked when the neurosurgeon spoke of an operation, but as the days passed it dawned on me how critical my situation was. After l was fasted for surgery, their plan changed, and they put me on strong steroids, before sending me home one week later.
Experiencing complications
They told me about brain fatigue but I’m not sure I understood at the time what that even meant. In my mind it didn’t sound too bad, but the reality was that it was terrible. After a day of being home from hospital, I began to understand. It felt like I only had 2% battery left; I slept so much on the sofa and everything took supreme effort, even small things like boiling the kettle. I also fell asleep mid conversation when friends and family called to see me.
After a week at home, I was re-admitted to hospital by ambulance - all my vital signs were bad. I started to get hallucinations from the steroids. One memorable one was when an eagle flew across the ceiling. The other horrible thing that happened was that after two weeks on steroids I was unrecognisable. Even my Face ID on my phone didn’t recognise me. They call this ‘moon face’. I stayed in the hospital for another week and when I came home, I spent two months on the sofa. Slowly, very slowly, my brain started returning to normal. It was decided that an operation would be too risky for me, as the cavernoma is in my thalamus region and close to my brain stem. The alternative treatment that was decided was radiation. I was very frightened of undergoing radiation, but I had the treatment in February 2023. My brain felt woolly and my perception was skewed; it was like my world view had tilted and everything was running down to the left. The scariest thing was at nighttime. I didn’t think I would wake up in the morning, so I wrote letters to my children and family.
Reflecting on my mental health
Ultimately, I found being sick with my brain a very isolating experience. I struggled to explain how I felt as it was all new to me. I didn’t want to tell my family how scared I was, and I tried very hard to put on a brave face. My daughter’s 21st birthday was during this time I was taking the steroids. We had been so excited for it-a party had been organised at a venue. I was so sick that I couldn’t attend. I cried my heart out as pictures came in on my phone of the evening.
I also experienced a loss in confidence. I was afraid I could fall easily, and I was worried that my right hand would shake or that I would look weird walking, so I found myself pulling away from people. Throughout it all, my children were amazing: I could talk openly and honestly with them, and I also had great friends who built up my confidence and listened to me.
Ongoing struggles
Since the radiation, my walking has only slightly improved. It’s mainly my right foot that won’t perform: I drag it a lot. Before all of this, I was very fit during COVID-19. Back then, I ran 5k a day, and now I struggle to walk my dog. I also loved fashion and shoes, but since my walking issues I can only wear running trainers. It’s frustrating and I get mad at myself a lot, but I’m told there’s still some swelling from radiation.
What has helped me move forward
I retained my sense of humour as I had to wear a mask during radiation. This was specifically made for my face and head to keep me still during radiation. Afterwards, I turned it into a plant holder, and it takes pride of place on my wall. I’ve been told by the doctors that I’m lucky to be alive and honestly this has changed my perspective on living. I love life and I’m truly delighted to be alive. I have the best family, such good girlfriends, and a wonderful boyfriend who I had only met just before all of this happened.
I am still me
My journey through this was frightening and sometimes lonely. I often felt I had lost who I was and would never be the same again. I realised that I am the same, but with a wealth of knowledge and an understanding of how strong I truly am. Your organisation gave me hope and courage to believe that things would get better and that I am the same me.