Hi everyone - sorry I’m late to join,
I can relate to the issues with peers and the fear of mortality.
My AVM only started to present issues from the age of 18 or so. From then my energy levels+ability to concentrate become more and more unmanageable and I wasn’t aware there was anything wrong. I struggled to complete my degree but managed to do well. I’ve never had good energy levels and always thought being lazy, slow and inconsistent was a part of my identity. Finally got diagnosed at 23 (24 now) on May 17 after a year of fast decline. Found out I had a highly aggressive, high flow, large AVM in my left occipital lobe that was causing gradual brain damage over the years. If it had been left any longer it would have bled and I’d have died.
I had a stroke during my emboliation causing me to become permanently partially sighted (so will never be able to drive), poor memory, energy problems, orientation and visual processing problems. I have partial seizures (occipital so only affects my vision) both pre and post embo.
My neuro team has recently decided I am not a candidate for GK or another embolisation. I’ve been told it has recruited more feeders so now the flow is higher than post embo but not as high as pre embo. It is likely to grow larger with time but they want to leave and monitor it because craniotomy will leave me with 100% chance total right side vision loss in both eyes.
It is difficult being aware of the risk of a bleed. Im scared of accepting a life with this thing still there. It is difficult thinking about the past and what I would have done differently and how I took things for granted. Also at this age, friends don’t really know how to relate to this and they are busy working or traveling or with their relationships to give support. My boyfriend of 2.5 years wasn’t understanding to the point we broke up a month before my embolisation and he didn’t turn up on my surgery day.
There is a disconnect with most people our age because their idea of a big deal is minimal compared to our idea of a big deal. It’s a challenge trying to relate to them and their issues and for them to try to relate to ours. I think most can’t handle it because it triggers their sense of comfort wanting to stay ignorant to the reality of how vulnerable we all are as humans and living until 80+ is not a garuntee.
The thing is though - I think in some ways we are better off than alot of people. We have been exposed to recognising our mortality. To having a reference point to life’s stresses. We wont take the little things for granted or waste time in the situations that we can control. Some people spend their whole lives not appreciating the little things, wasting time on pointlessly worrying about people who will mean nothing to them in 5 years time, not taking initiative for their own happiness and being miserable over things they can change because of complacency.
We don’t have the comfort of being able to be ignorant enough to waste our opportunities. We realise our real needs from relationships - not the superficial stuff but wanting someone who is loyal and supportive and makes you feel good around them. We know the power of the now and not later. If you told me 2 years ago that I would lose a good chunk of my vision or have half of my long head of hair fall out - I would go into panic thinking I’d not cope and my world would fall apart.
Living at home still was the last thing I had planned for having always been a highly motivated and independant person. But I know it is a matter of patience. It’ll happen, it’s just about trying to enjoy the journey in the mean time
We realise we are strong and alot doesn’t phase us. This humbles us and makes us appreciate the few who really do care and makes us alot more empathetic as people. Im done with worrying about the things I can’t control. I’m done wasting time on relationships and situations that don’t make me happy. I’m done with not having self love or confidence issues because heck - we have alot to love ourselves and be proud of getting through all this. We have many achievements to feel good about.
I have lost out on 2/3 years of academic+career progress to this condition but ive gained significant emotional progress and life experience+awareness. It’s easy to compare our lives to our peers but as I said - they may be ahead of us in some ways but in others we are ahead so it balances out so no one is “more accomplished” and no one is a failure.
I think I’ll make a little group chat for us so we all have someone to talk to and relate to.
Sorry for the essay lol