Richard, Yes I’m wearing it a bit tight. Thanks for that, Greg
1 Like
I have a habit of oversimplifying things…and surprisingly sometimes it works! I was always a mind your own business type, tired of people inserting themselves where they ought not be. Then it struck me, what others think of me is really none of my business. That is the way I view it now, and it helps. Probably an over simplification, but works for me. John
Hi Merl, First of all, checking up on you, the usual behaving and not having too bad a time lately?
Second, you lucky guy, you get to hear how messed up I am on a psychological level. (Or not, maybe my reflections are not that weird.)
Anyhow, due to bad AVM related seizures I kind of lost “me”. Who am I if my body is not functioning as it should, my memory fails, I can’t concentrate/work, and I’m unreliable (a friend was knocking at my door for half an hour I found out later.)
What’s left of “me” to hang my hat on? It’s kind of an existential crisis. But is it necessary to even go there? Most people don’t worry about the “me” they create and project to the world.
Maybe this is just a form of self-flagellation (something you’ve gone through and apparently enjoy.) (kiddiing) Be well, Greg
Ohh Greg… …I’m not sure where to start here 
other than to say ‘yes, yes and yes’.
Your reflections aren’t that weird at all (or if they are to the outside world, then welcome to my world). My physical symptoms were questioned and discredited for many years. For my own psychological safety, I compartmentalised it all, put it in a box and closed the lid and got on with life. I did some studies, got myself a qualification and was working in a role I loved. When a true diagnosis was made it was all put back on me ie ‘So why didn’t you speak up sooner…’ WTH, I did but no one was listening.
Then they operated, OMG. My world wasn’t just changed, my world had turned upside down and been put through a blender. Skills I’d spent years developing up and vanished like a fart in the wind, simple tasks turned into epic challenges and the frustration I had with self was HUGE. You call it ‘self-flagellation’, I call it ‘mea culpa’ (ie I’m guilty) and I’d (metaphorically) beat myself up, I put it all back on me, as if I have control of it all. The medicos were saying ‘It’s all fixed’ so if it’s all fixed then it must be ‘Me’.
You say
‘Most people’ aren’t confronted with losing the ‘me’ they’ve created
.
And I agree wholeheartedly. I had created my persona, I was ‘The Helper’ and now I was the one needing help. “WHAT?? ME?? Need help?..Nahh”. It was a complete role reversal and I hated it. I fought against it. I had a life and I wanted that life back NOW!!! and I pushed myself to try and get it all back. But no matter how hard I pushed, my body pushed back. The medicos were making out that I was the only one having these oddball symptoms “Well, that can’t be happening. It must just be YOU…” which only served to make me question ‘Me’ even further. I had to get to a point of acceptance and Ben’s Friends has assisted me in doing this. Just that simple thing of having others saying ‘Yea, me too…’ has been such a relief, "OHH, phew, so I’m not the only one at all…'. Prior I was in a bit of an echo chamber between my reality and the dr’s opinions. Their opinions were all ‘Rainbows and Sunshine’, my reality was not.
ABSOLUTELY!!! But only if we let it become a crisis. I’ve been down that ‘crisis’ rabbit hole before and it can be a nasty hole to get out of. I wasn’t going there again, I saw the signs, stopped and took stock.
I had to make a rather confronting self-analysis. What can I do? How can I do it? and identify/recognise my own new limitations. YUCK. Then I had to learn to operate/function within those limitations. Even more YUCK. The problem I had was, there was no level of normal. Every day was different. As I said “I was the ‘Helper’ not the one needing help…” I used to teach and support people with disabilities, so to now be the one with the disability OHH, HELL NO. I fought against it all. I wanted the old ‘Me’ back. But it was gone. It took me some time to come to terms with that and move forward.
Now please, don’t get me wrong here, I would much rather be back where I was, with the life I had, but none of us are here by choice. We just have to play the game with the cards we’ve been dealt. I still think the deck of cards has been rigged, but here we are, we have to learn to accept that.
Someone once said to me “If we keep looking backwards at the life we had, we’ll miss the opportunities that life presents right in front of us”, I’ve ‘missed’ enough already.
Ben’s Friends has assisted me in sharing the skills and knowledge I’ve built up, both in my former professional role and my neurological journey to assist others and that’s been a HUGE plus for me.
Merl from the Modsupport Team
1 Like
Merl, I am really grateful to you. Even though I can’t imagine the frustration of having people/medicos imply you were somehow to blame for your symptoms, it makes me a bit sore with them.
You’ve definitely helped me begin to understand how the “me” can be lost, sometimes very very quickly. I’m not really religious but maybe stuff happens for a reason on some level. I realize I’m getting into dangerous territory. I’m not implying a higher power, just that maybe your suffering resulted in your decreasing the suffering of many many others. It doesn’t seem fair to me but the “faithful” might say, “yours is not to question why, yours is but to do or die.”
Unfortunately for me, I don’t have an altruistic dimension to my life. (I do but it’s small.) The bottom line is that you’ve got me thinking in a positive direction about the cards I’ve been dealt. Thanks so much, Greg
For many years, prior to my neuro journey, if there was a ‘right way’ and a ‘wrong way’ I did 99.9% the wrong way. Got myself into LOTS of trouble and made things a LOT harder than they needed to be. But thru it all I learnt what not to do (again). I’d been using my experiences as a negative. I’d carry all of these ‘negatives’ around with me, open up that bag and bash myself with those negatives. I tried to drink it away, drug it away, escape from it all anyway I could. Years ago there was a song line that said ‘Anywhere you go, you always take the weather with you’ and I did. I had a constant cloud hanging over me. I had to turn it around. I got a job running a youth accommodation program and I could see some of my clients doing some very similar ‘wrong way’ things as me. And I’d tell them ‘Ahhh, don’t do that, because I did and this is where it can lead…Here’s a better way’ they could see that my information came from personal experience and not just some textbook I’d read. I was turning me negative experiences into a positive learning for others and for me this was a massive plus.
Then my neurosurgical journey started, '96, and I knew I could easily fall into that hole of ‘Poor Me’, I’d been there before, but as before I decided to use negatives as a positive and got myself a role teaching people with disabilities. Although I was the teacher, I learnt so much from my clients about resilience and adaptation, in fact, I think they taught me much more than I ever taught them.
In 2013 my journey took a sharp U-turn, down. That year I required 3 neurosurgeries and try as much as I did, I couldn’t return to my former profession. The dr’s wouldn’t give me clearance and I again fell in a hole, I had to turn it around. It’s Ben’s Friends that has allowed me to do this by using me experiences to assist others. Altruistic? Nope, I get as much as I give.
We should ALL start small. Even a small step is still a step. Some go with the idea they’ll save the world, but overwhelm themselves with expectations they simply can’t meet. People who go ‘all-in’ from the start are often the ones who burn brightest but often burn out the quickest too. Initially, I started in a small volunteer role, then expanded a bit, did some studies and expanded again from there. For me, I think it was more serendipitous than altruistic.
I think you’re a long way from ‘Dangerous territory’, we’ve had some members delve much deeper into dangerous territory than yourself, so, you’re OK. We found that some people have some very STRONG opinions both for and against theological opinions, me included, and it was safer to avoid such topics than to open that can of worms. Some do still walk close to ‘Dangerous territory’ (again, me included), but we try to calm it down before others get offended. You’re OK.
Merl from the Modsupport Team
1 Like
Ok Merl, you win. I won’t call you altruistic ever again. (It was only meant as innocent praise. I know you’re already married. Wow. Sorry, sometimes I’m a naughty wiseguy.)
On a serious note, I really respect what you’re doing. I saw a non-Hollywood movie about a kid with autism that imitated Disney movies/emotions. A disabilities trainer taught him and his family, it was a joint effort, how he could become completely independent. The kid got a job at a movie theatre taking tickets and paid for an apartment. The keys had to be put in the same place so he wouldn’t lose them.
Let’s just say, I’m impressed what you guys can do. I’d like a bit of that added to doc’s med school curriculum so they can prep the patient/family of the possibilities and options. I have a number of friends with autistic kids and I don’t think they knew of the best case scenario so they got 3 jobs, quit socializing and started smoking.
So, my friend, you keep going with your non-altruistic work. And if one AVM survivor has a better quality life, it was worth all of your selfish sacrifices. (Sorry, I really am in a wiseguy mood.) Best wishes, Greg
2 Likes
Hey Greg,
I don’t mind a bit of ‘innocent praise’ 
Thanks.
It would be very beneficial if they did cover some of it in med school, but they simply hand it all to social workers. Often their view (as was said to me) 'We operated, we fixed" and that was where their involvement finished. For stressed out family and stressed out patients, finding relevant services can be a real minefield as some focus solely on a specific group ie stroke sufferers. But even people who haven’t had a bleed can still need services. You needed to tick the right box to get the right service. My approach was more ‘fulfil the need, not the box’. I ‘tried’ to bend the box to meet the client’s needs rather than bend the client to fit the box, if that makes sense.
Merl from the Modsupport Team
1 Like
Hi Merl, I’m just checking up with you to see how you are doing and make sure you’re not attempting any sneaky under-cover altruism. My back is getting stronger with physical therapy and I haven’t had a seizure in about 3 mos. Emotionally it’s been a roller-coaster lately. But all in all things are good. Be well, Greg
1 Like
Who?? Me?? NEVER!! 
At times I think the emotional rollercoaster can be a HUGE part of the battle. I find I need to keep myself occupied because I can easily get on that rollercoaster, but getting off of it… is not easy. I ‘try’ to keep a balance in physical activity and physical ability and emotional needs, it’s a bit like trying to juggle bowling balls… You’re going to drop one at some point. OUCH 
Merl from the Modsupport Team
1 Like
Hi Merl, I’m just checking in to see if you’re doing as best as can be expected, or something close. My back is far from strong but it is improving and no pain to speak of. I’m applying for jobs that entail no lifting and very little brain power as mine has always been severely limited. (perhaps that’s an asset in today’s world) No seizures in over four months. How are you feeling? Hopefully you’re not trying anything altruistic as that would have to be reported to the highest authorities. Best wishes, Greg
Hey Greg
It’s too hot to be altruistic here We’re hitting the 100F today, first hot, hot we’ve had for a while, so I’m just hibernating under the a/c.
I must admit I do go a little stir crazy doing nothing. Even if it’s simple computer stuff, I’m doing something, using those few brain cells I have left. The medicos won’t let me return to my former role, which although VERY frustrating, it’s also understandable. I’m about 30km from a population centre, I go there to shop and I get out of there real quick. Too much of that and I get symptomatic, then add the heat and that just cancels any plans. So, I’ve become a sloth Thank the Google/Youtube gods for ‘Silly Dog’ videos (Well, maybe not that bad, I have a few other interests but certainly not venturing out.)
I can completely understand why You need to get into doing something I REALLY, REALLY do. But whatever you decide to do, go slow. Don’t be jumping in, up to your eyeballs. Low and slow, get back into a routine and go from there. There maybe setbacks, learn from them. Use it all as a learning, rather than seeing setbacks as a failing try to think 'How else can I ‘get it done’?. I found lots of lateral thinking is needed.
Let us know how you get on.
Merl from the Modsupport Team
1 Like
Hi Merl, I suppose I can empathize re the heat. In Phoenix we get 115 sometimes in the summer. Thank the gods for AC. I’ve been told by friends to slow down. It’s counter to my make-up but even I have been wrong once or twice in my life. A broken back (4 vertabrae) has a way of making a convincing argument. Wisdom has never been my strong point but I’m trying to give it a whirl. I can’t seem to get much right lately and it’s frustrating the hell out of me. Check that, I took up ceramics as the only thing I could do for a while and I’m really enjoying it and making friends. Also on the positive, I’ve done a good job of staying off the sauce and ciggies for the most part.
I’m not feeling comfortable driving on the highway since my accident. That is sort of limiting in itself but I’ll figure a way to work around it. Shopping has always made me “symptomatic”, never enjoyed spending money on knick-knacks or clothes. I’m not sure if it’s AVM/seizure related but I don’t like noise and crowds. Can’t stand it. That’s something else I’m trying to work around. My 88 yr old mother just got covid but my dad in the same condo didn’t.
You’re right, I really need to take it slow. But with the N.Y. Yankees and the U.S. Soccer club calling all the time to recruit me it’s tough. Oh well, they’ll have to wait till next year.
I’m going to heed your advice and take it slow, though it’s hard as heck. In the meantime I’m making some beautiful buddhas, vases and outdoor animals.
Not sure what lateral thinking is. Is that what I do on the toilet? Be well, Greg
Hey Greg,
Slow down? Yea, I have this noise in my ear that tells me the exact same thing, that noise is also known as a wife She keeps an eagle eye on me and she keeps telling me, repeatedly. I had a self expectation “You start a task. You finish the task.” I’ve needed to adjust that a break tasks down into steps rather than the whole task. And be (semi) satisfied with the steps I had gotten done.
I too have been wrong a couple of times (but it’s never been my fault )
As for driving, you should only do so when you feel comfortable, being anxious behind the wheel can be a recipe for disaster. Initially, they wanted to take my license away from me. I begged them not to and the reluctantly agreed on condition I had a co-driver to takeover if needed. For my employment at the time driving was a must, 200-300km/day was not unusual. Losing my license meant losing my job. As it turned out I couldn’t return to work anyway, but a loss of license would have stranded me.
By ‘shopping’ I was meaning ‘grocery shopping’. I can’t be going through ‘Just browsing’ Ohh no.
If I need item ‘X’,
I go direct to the item ‘X’ store,
I purchase item ‘X’
then I get out of there.
If I need to investigate I try to do it all at home, online, rather than browsing. I find sometimes (and I can never tell when) there can be just too much stimuli and this time of year is just awful. Every store is having a SALE!! bright lights, loud speakers, screaming kids and a man with a great big hammer trying to bash his way out through my eyeballs. Ahh, the joys of Christmas. NOT.
Even in just travelling to the stores, with the sunlight flashing through the trees, I can get there, then need to just turn around and go home.
And, ‘Lateral Thinking’ is solving a problem another way, a less conventional way ie I need to get to things up high. Me and ladders are a recipe for disaster, I’ve ended up on the floor in a pile before, so how else can I get it done? Answer: A couple of long reach hooks I jigged up.
“Is that what I do on the toilet?” Ahh, sorry, I’m not getting into toilet habits You’re on your own with that one
Merl from the Modsupport Team
1 Like
Hi Merl, If I ever succeed on becoming “normal” it’s you that’s to blame. My faith in the Aussies has been confirmed. I truly believe you guys have the right attitude: a grand combination of laissez faire and deep caring.
I’m trying not to push myself too hard. Thanks for that info on lateral thinking. It’s worth thinking about and is probably useful a lot. I hope you’re holding up okay and no setbacks. Best wishes, Greg
This is what we call “man shopping” in this house. 
Some women do it, too, but principally, it’s a male thing.
1 Like
Hi Merl, It’s been awhile so I just wanted to check to see if you’re behaving and Santa gave you more than coal. My holiday was peaceful and good to spend time with loved ones.
The recovery from my broken back has been slow and frustrating. It’s non-linear. I felt I was making good steady progress but the last two weeks have been backward.
I’m in a pretty good place emotionally/mentally. I got a life coach-- it’s kind of a hybrid of therapist, wife and someone to keep me on track/accountable. It’s been very positive even if a bit pricey.
My neurologist is retiring so I need to find a new one.
Wishing you a happy and healthy new year. And for everyone here.
Best wishes, Greg
2 Likes
Hey Greg,
Santa didn’t even bring me coal this year (just goes to show how naughty I’ve been ). When I was working, we use to put on a day for our clients who had nowhere to go, so for me it was a workday. It’s supposed to be a time for family and joy and all of that. The last thing people need is to be alone, so we put on a full Christmas spread, with santa claus (not me) and all. We’d go to local businesses and get them to donate gifts (they’d claim it as a tax deduction).
The family here were all going interstate, so we had an early get together prior to xmas, so all very quiet here on the day.
That’s at least 1/2 the battle. I had to go and seek a therapist/psych. I tried to do it all myself, I had before and thought I’d just do the same, only my headspace was not good and I couldn’t get past it. I needed to talk to someone. Only wish I’d done so earlier. Would have saved a LOT of stress.
That ‘going backwards’ can be a real slap in the face. My view was that recovery is that ‘straight line’, but when it comes to neuro-recovery that line is more like a zigzag and some of those down strokes can be WAY down. My acceptance of that was an awful trip, but I learnt my limits and my signs. I now ‘try’ to manage within those limits. It’s exhausting just trying to manage it all.
Hope you have a great 2023
Merl from the Modsupport Team
1 Like