Recovery and volunteering

[Spridget]

Hello all!

A short(ish) introduction to my story...

One early morning in October last year my life took a sharp turn when I was overcome with extreme pain behind my eyes and the horror of realising I was losing my eyesight second by second.

I normally live alone, but as luck would have it my sister was staying with me at the time and so she was around to dial 999. What started as a perfectly ordinary morning eventually became a ten-day stay in hospital- a strange, almost detached interlude in my life where the forseeable future was measured in hours rather than months and years. I underwent two angiograms, multiple MRI and CT scans, and a seven hour craniotomy followed by the longest two days of my life in a neuro ICU whiling away the long night hours with nothing but my own scattered thoughts.

I learned that I'd suffered a ruptured AVM, and the resulting bleed on my brain had affected the area tasked with processing my vision. I'd only just turned 30.

I couldn't read, I couldn't feed myself, and when I was eventually discharged I couldn't walk in a straight line or even recognise my own car when my Mum came to take me home in it. My field of vision was drastically reduced, and what remained was severely distorted. The fear and gravity of the situation began to hit home as I realised my life had been permanently altered.

Recovery was slow at first. My family and friends supported me every step of the way, but it hurt to have lost my ability to live independently and look after myself. However, every stumbling step, every brief glance at a book, every slightly off-target mouthful of food taught my brain to adjust and recalibrate to its new reduced view of the world. Four long months on, and day-to-day life feels mostly back to normal...

Except for one thing. I realised that I didn't really want things to return to the 'old' normal. Instead, I wanted this to be a turning point in my life towards finding a greater sense of purpose.

While I was in hospital I was struck by the astonishing kindness, humanity and competence of everyone I met. Nurses, surgeons, porters, consultants- every single person seemed to go out of their way to make my stay as tolerable as they could, and I did my best to stay thankful and positive towards them despite the pain. I resolved to do what I could to pass on this kindness once I'd recovered. I still consider myself to have been incredibly fortunate in life so far, but now I want to start giving back.

So, I would be really keen to hear any experiences any of you may have had starting out in volunteering with brain injury charities. I've already got some fundraising plans for this year but I'd be especially interested in finding out ways I could contribute my time in person to take an active role in the running of charities and events behind the scenes. How did you get started? Are there any courses or training qualifications that might help along the way? What sort of roles have you had, and what did you think of them? Any thoughts or suggestions welcome!

[TaIaV]

I have no experience on the question you ask, but could not let the opportunity pass to congratulate you on your attitude in the face of such a major disruption in your capabilities. Thank you for sharing your inspiring story in such a frank and concise manner. Reading it will give people much hope. I am sure that you will continue to make a major difference in the lives of many other people with brain injuries.

[Spridget in reply to TaIaV]

Thank you! I found it quite cathartic to try and distill my thoughts down into one coherent story- I feel like I'm still in the process of accepting and making peace with what has happened, but it's great to find a place to express it to an understanding audience!

[Leaf100]

Hi Spridget.

That sounds like a good goal.

And, I don't want to rain on your parade, and ... here I go.

Can you work your regular job? Do you need to apply for income assistance of some kind?

I ask because often those places feel if you can volunteer, you can work.

It's also possible you feel up to it - and find you aren't when you give it a go.

However it works, make sure you have your income in place and know how life is going to unfold before you try things that could potentially damage your ability to access an income.

(Some places don't punish you for volunteering, but you need to find out from other than the agency - yes, they are that bizzare.)

I wish you the best in your health journey.

Keep us posted,

Leaf

[Spridget in reply to Leaf100]

Thank you for your thoughts! I've started a phased return to work, with reduced days and hours gradually building up over this month and next. So far it's been OK, although my role (mechanical engineering) has shifted from being a mix of office, lab and factory time to being purely desk-based at home. The technical stuff is proving a bit fatiguing, but hopefully things will continue to improve with time. I'm very fortunate to have a supportive employer and a level of income protection, so I am in a stable position financially. I'm hoping that as I return to a normal routine I'll find I have time and energy to spare for volunteering, but I guess it'll be a case of being honest with myself about how ready I am for additional workload in these first few months.

[Leaf100 in reply to Spridget]

It's wonderful you are able to do this.Your situation may be different, though I do know where * worked, once you were stable on half time hours, that was it as far as the insurers was concerned. Meaning if you could work half rime a d couldn't get past that point, then half time work was what youndid amd what you got paid for, and they no longer topped you up wage wise.

That was years ago now and in Canada. I would ask someone away from work in confidence.

Hopefully you will be ok though return to work schedules are often done too rapidly.

Lost of us tend to overestimate what we can do.

Fingers crossed for you.

Leaf

[James1984]

I would definitely advocate for this place so that more people with a Brain Injury know that we're here for them. It can be very isolating, so to be able to talk to others with a similar experience is very comforting.

Have you tried asking Headway yet?