Saturday, 11 January 2020

How Others Stories Heal

Over the Christmas holidays I read a few things that really made me appreciate how others who have been in the same place you are, or were, are possibly the only people who really understand your experience.

How they can often explain in a way that you have not yet been able to voice, or even consciously accept - much less release.

Their words just holding your soul.

Both of these posts were the turning point on my decision to continue writing this blog again... (after being told I was prolonging acceptance in doing so!)

So two posts I want to share with you, - with the writers full permission. 

One was on helping someone else struggling with anxiety, after their brain tumour, and the daily struggle that ensues. Something that the 'pull yourself together' or 'just take a drug' brigade don't understand, in fact I don't think many can understand unless they have either been there themselves or watched a loved one struggle.

"I used to have really severe social anxiety to the point I didn't leave the house. I made a list of the things that scared me and then starting with the most easy I would try one by one. Going the shop was scary as I'd have a panic attacks and I would cry and have to ask my Mum to use my card and pay for me, or getting the bus would make me cry and run away. But the fact I was still trying it, made me take it as a win. 
Then over the years everything got that bit easier and easier. It has taken about 6 years for me to finally be 'normal' again but it is do-able 😊. As for the seizures I found mine was triggered by stress. But I also learnt that while having a seizure my heart rate with shoot up soooo fast, so I would learn how to try keep calm and breath and as my heart rate came down the seizure would be less severe and would end quicker. Obviously you will have times you just can't do this but it's definitely something to keep in mind 😊
Also with the depression I've learnt either writing down how I feel or speaking to a counselor or just someone who you don't really know is a massive help just being able to offload. I still have my days with my personality disorder, but it's okay to have bad days where you just sit and cry and sleep. It's picking yourself back up again what is important." - Beth Parker

How explaining and others listening, supporting, guiding with kindness and love really can help, but that often we just have to love ourselves more too. Not judge our bad days, or think that we are weak, stupid or wrong. Treat ourselves as kindly as we would a good friend.

One of the hardest feelings in the world is feeling alone -
 even when you are in a room full of people 😔


The other post was of someone who had just returned home after his (elective) surgery to remove his cerebellar Hemangioblastoma (which was thankfully caught early and still quite small - before too many symptoms appeared) and had been seeking advice on my support group.

"First memory was coming too and in recovery. Lots of simple questions: Do you know who you are, where you are, what day it is, etc. So happy I did and felt my brain working but I had no voice as hard I tried. They said it was the anesthesia still in me. Finally could whisper and use hand signals. Dr. Patel came in and said I did great and it only took 3 hours. CT looks like everything is out. It most definitely was a Hemangioblastoma and profiles benign. Couldn’t sleep all night but relieved and did simple moves and stretches in bed. Good to be alive and recovery is going great. So appreciate the small things and focused on not overdoing it. I realize everyone is in different spots with this challenge. I appreciate you all and draw from your stories and strength!
Speech is great. A little sticky for first 48 hours and my mind was actually going faster than my ability to get words out. I think it was the drugs but I could not help cracking jokes to almost everyone. Also my sense of relief that my brain was in tact. Tired so fast though and my flashes of energy quickly overcome by fatigue.
I didn’t realize how much stress and dread I was carrying until I finally was brought back and knew my brain was working. It was looking at a clock in recovery and figuring out how long I’d been out, then moving my feet, feeling my brain waves fire up to know simple questions even though I couldn’t get my voice out for a few. It’s quite a surrender, courage and act of trust/faith to do this. I know I had a choice of delay and so far feel blessed by my decision and your support. Thanks Jo and all!" - Brian Gilmore

I just cried when I read this, yes some were tears of recollecting almost the exact same thoughts:

'Did my brain still work? Could I move my body? 
Did it all go OK during surgery and was the tumour all out?'

So yes neuropsychologist woman, you are right it 'brings it back'...

... but what it also brings back is a memory of the sense of gratitude, relief, strength and that overwhelming knowledge I'd survived, the belief that even a few deficits would be an acceptable trade for being alive. The reminder that small things we worry about daily, just don't really matter in the scheme of things. Where I could see the beauty in even run down old buildings as I went home...

The 'surrender, courage and act of trust/faith to do this' and how those emotions and feelings never truly leave you. How they give you strength forever.

Plus some added acceptance, understanding and knowing of just how far I have come since then. The knowing that others have faced the same, will continue to face the same and being part of a tribe that understands you.

Tinged with a huge happiness that the support I (and others) had given, the words I had written, had impacted someone else's life for the better. Made a really tough time for them just that little bit easier in having the support I never had. 

So yes. 
No one does really understands it unless they have been though it themselves. 


No comments:

Post a comment