Hi Hannah,
Sorry for a very late response to this post. We seem to have a fair few things in common!
I was diagnosed at the age 22 after deteriorating over the few years preceding diagnosis. I had a large AVM deeply nestled in my left occipital lobe, it was highly aggressive causing brain damage (and vision loss in my lower right side in both eyes). This explained my deterioration and the visual episodes which turned out to be occipital seizures.
I couldn’t complete my fourth year of university and during my fourth year I felt more and more depressed and alone not knowing what was wrong with me. Whilst my friends were all getting on well with their studies, going for nights out and work outs - all I wanted to do was sleep and I struggled to concentrate feeling like a failure.
Once I dropped out of uni in April 2017 I was then diagnosed in May 2017 and returned back home to London from uni in the North of England. Returning home was difficult after enjoying my independence, seeing photos of all my friends graduating also was tough. I began to feel more and more alone and depressed having very few friends in my home town. Migraines were daily which also didn’t help me cope.
In late Jan 2018 I had a complex embolisation to treat my AVM. I had a stroke during the operation causing it to take 7.5 hours. The stroke has resulted in me having lost the majority of my right had side visual field in both eyes. I also have other deficits: short term memory problems, poor energy levels needing more sleep and naps, slower processing time, poor co-ordinaion and concentration is difficult. A result of the operation lasting longer caused me to have over-radiation which resulted in me losing half of my long thick hair; literally half bald.
During this process my relationship with my boyfriend fell apart, he wasn’t understanding or compassionate and I had to break up with him a month before my operation. Many friends also let me down.
7 months since my operation things have changed alot for me. I had already completed both a course of CBT sessions to help me cope with my condition and now finished counselling sessions to help me with my personal issues. I have learnt how to manage my energy levels better making an effort to go out and see friends regularly and rest when I need to. My vision is still not easy but I’ve adapted well and learnt to be alot more cautious.
I have learnt not to feel shame about my deficits, the delay in my education/career caused by my AVM and to be open whilst being light hearted about my condition. I prioritise my health and happiness and distance myself from people or situations that aren’t healthy for me. It may sound awful and heartless but I’ve learnt almost everyone in life is replicable, if they damage you then they gotta go and you will find new people who treat you right. It has been difficult being patient and loving to myself but I finally do really love myself.
I have new friends with AVM’s and have reconnected with old friends and made new ones too over this period of time. You are right at this age it is difficult relating to our peers. After going through a major life event your perceptions change and you mature beyond your age. Friends struggle to understand our challenges and their worries/challenges seem relatively trivial compared to ours so it causes a disconnect.
I believe although there has been delay that there are many routes to the same destination. Sometimes life throws you some curveballs causing your route to be longer and more difficult but if you keep going you will still reach the goal you started moving towards. I can still get everything I wanted out of life before the brain damage and becoming a changed “me”.
CBT has also helped me follow the motto I live by “don’t worry until there is something that happens to worry about”. I always think first “is this worry 100% going to happen or just a maybe scenario? Do I have any control over this thing I’m worried about?”.
I will soon receive my degree certification and have a graduate job waiting for me with a company who knows all about my AVM and deficits. I still have more treatment to go for my AVM to be fully obliterated but for now I just focus on the present!
Happy to PM and exchange contact details if you would like to talk further. You are definently defiantly not alone!
Lots of love,
Corrine