As the headline says, I'm not good at this kind of thing. To say I'm frustrated is an understatement.
Anyway, I'm as opposite from who I used to be as one could imagine. I'm a bit pissed off because of what has happened and while not my fault, it's still one never-ending beating.
I used to be an airline pilot. A captain and a pretty good one. Sure, some were better but by all accounts, I was pretty good. I made all the decisions to keep myself, my crew and passengers safe. Flying was my dream. I pursued it with a passion. Now I can't fly. While I am looking for work, I also collect what little unemployment is available. Another beating.
I'm not a fan of the other changes. Physical of course. Walking a straight line used to be something I did without thinking about it. Not anymore. I would love to walk a straight line. I used to scuba dive, cycling, even a bit of sailing. Now, walking. Hate it.
I guess I'm still working things out. As everyone here is familiar with. Fortunately I have a good support system with my family.
My name is Shaun and like you I totally understand where your coming from with your frustration. Not being able to work is something that I can going through also. Well you see I just graduated from University this year (March 2012) and have been looking for employment. I finally managed to find a geological company and was suppose to start on the 10th July 2012. I suddenly fell ill on the 8th of July and thats when my life changed. Since then I have been diagnosed with an Aneurysm (ruptured but hopefully fixed) and an AVM as well. Life as I know it has changed for me. I never even managed to work, given Geology is my passion. Also I am not sure if I will ever be able to.
On another note, I am also very interested in your medical circumstance. From reading your profile I noticed that our circumstance might be similar? This I am not sure. My case of AVM is in the Posterior Inferiof Cerebellar Artery with a nidus on AVM. I have only had 75% Glue Embolization done in a previous Angiogram. I have another diagnostic Angiogram coming soon.
I am only still relatively young 27, and all this at times do not make any sense to me. Any insight that you could give me would be helpful. Well hopefully anyway because some of stuff on here really scares me.
I have dated a couple of pilots and know that being a pilot is something that is the core of one's being. It's more than OK to rant where there are others who undertand what you're going through.
Welcome to the site. Sorry you are here. I can relate some, of course. I would say the best thing you have going for you is your age. Being younger, your brain will heal faster. I would also say that sadly, you will never be the same. One of the hardest things to wrap one's brain around is that fact.
Remembering who you were and the things you used to do. Everything I do now, I do for the first time and not as well as I used to. My biggest physical problem is double-vision. It is with me every moment my eyes are open and affects everything I do. Dr.s don't know much about it, when or if it will correct. Maybe it will, maybe not. I think that if it was going to self-correct, it would have done so months ago. Maybe eye-muscle surgery, which is no sure thing either.
As for the loss of your, not quite started career. I only took one geology class so all I can say is, try to stay in it. Sure, you won't be doing what you want but perhaps there is something you can do. While I cannot fly, I am trying to get a different job at American Airlines that will still use some of my knowledge. First I have to get through AA Medical. I have to get medically cleared to work. That is it's own special hell. What about support? You will need it. I have some family near, it's not a fix but it is something.
As for similarities? I am sure there are some. I was embolized with a substance called Onyx. It's a black, glue-like substance. I called it medical-grade fix-a-flat. Sadly, after performing what is called a Wada Procedure to plan the embolization, the actual embolization didn't quite work. Next was the resection. Good news, AVM is gone. Bad news is I am left with the 2x vision, balance and gait issues. There's more but I'll tap the brakes for now. It's going to be a long road but keep going.
Hi Greg - I can safely say that you're not alone. I personally think that these changes suck - I see each day how much I really liked my life before; however, I try to focus on what I can still do, my strengths, and try to stay positive and "feed" the physical part of it to keep it moving forward or at least status quo.
I think that it has a lot to do with starting all over - now, after a lot of mental outlook work - I see as fortunate for me, I've had a lot - A LOT - of "starting overs"- in which sometimes you have to re-program the "recording" in the garden of your mind / what you tell yourself, etc. and that "recording" has to be something positive to strive since what you tell yourself is what you believe about yourself and how you approach life. Even Mr. Rogers says so...and if he says so, you know it has to be true =)
Also, I grew up with a guy who's now a pilot for Delta - after his hoops of flying freight, etc. if that would help with your networking efforts.
I wish you the best on your journey, and I know that you will rock it!
I was a typist originally and later became a publisher. They both were in the same small office. I can assume what you meant when you said "I made a lot of decisions" becasue so did I. Starting from being nothing to having everything to going back to less or feeling as if you have nothing. ..Just know that i as well as others will be here to support you. Linda
yep, its true - and im sure every last member here who have had an AVM - it sux. Big time.
so for me, i just try to stay possitive, when i can. ie - im still here, today; i still have a great family; i can see, amd watch beautiful things everyday (well, most of my vision!); i can read, i can talk; and i can do things, not everything, but many things.
Yeah, thats really simplist - kinda makes me feel better tho...most of the time anyway. I just try not to think about the things i used to be able to do, because that just brings back painfully memories. Monty python, always look on the bright side of life, says it all! ;)
Greg...I think we all have days when we are so angry that we can't do all the things we used to be able to do before! There are alot of things I used to love, but scuba diving was my true love! Just know that thankfully we are all here to support each other! Hang in there!
Thanks again to everyone. Just Julie, Linda, Rich and Louisa. Every bit helps. I guess I'm going through a rough patch that everyone here knows about. It's good to that there are people who understand.
Hi Greg. The key is to never give up. I recently met a man who had 4 strokes 20 years ago. He spent 17 years in a wheelchair. 3 years ago he just started to walk again! You know that I am sending positive healing thoughts your way!
I know how you feel.I get angry all time and theres alway questions of why it had to be me why couldnt be the crackhead,murderer drug delaer etc.But its not I get angry alot I cry alot.Tjeres alot of things that i cant do like i used to like working i used to work i loved working.Run jump around be funny and silly and do more with my children.I still dont because im always frustrated with everything.I have right weakness,siezures everytjing I want my life back is what I tell myself all the time.I feel sometimes I have givin up because people have on me its a long story.I hope you get to feeling better.
I know exactly how you feel. I wasn't working when I had my bursting life-altering discovery. I had quit my job like 9 months before and started taking online courses. I was a stay at home college student, mom and wife. I had finally decided to take the time to pick a path and try my best to follow through with it to gain a somewhat respectable career (it was only medical coding/billing specialist but better than a regular minimum wage job). I woke up on the floor, 13 weeks pregnant, with my 3 year old asking me if I was OK. I have had to learn to walk 2 times since, had to quit school though I feel I gave it a fair try before finally quitting. I haven't been able to use my left hand since that day over a year ago. But my baby survived the stroke with no signs of it affecting him. Except maybe the steroids I took after the crani....he'll be a year old in 2 weeks and hes in a 2T already. Super long/tall so he doesn't look fat, completely solid. I'm always frustrated. I think, like you, of how I took for granted my ability to walk a straight line; to walk up a set of stairs; to enter a room without people staring at my cane; to not need to carry migraine pills with me "just in case."
You know what I hate the most? I'm 29 years old, I've suffered a stroke.....and I'm more mad that I can't play Black Ops II when it comes out than the fact that I have to use a cane to walk:/ Shows how much the stroke made me grow up. Ugh, I was good too:( I compare my gaming skills to your passion to fly (totally not the same, I know). Gaming made me a slacker but Lord I loved it. I wasn't the best but my KDR was low, best on my "team." I'm suffering from a sort of detox that will never end. But my husband put up his controller in support of my inability to play...I was better than him anyway LOL.
It's all about adaptation and acceptance...both are hard to conquer.
Frustrated is the nice word.....I was a Registered Trauma Nurse and Director of Emergency Services and went down in my own ER with a very large Bleed. I have been through alot and lost a career I LOVED. I have to believe I am still here because I am not finished yet, somehow I am affecting a life somewhere in a positive way so I stay until I am done.
We all hurt for what we lost and what we will not be but we can share the joy of who and what we are. I am glad to meet you and will be here for the rants good or bad when you need me.
Hi Kristi, thanks for the reply. Every little bit helps. I think, in my mind, that you've had a harder time than I. I often think that I am lucky in that I don't have anyone else relying on me and you have children. All I take care of is a cat. I went from an airline captain, to a 43 year-old doorman for a cat.
On the other hand, while I miss my old life, I don't believe I took it for granted. I don't believe you, or anyone took their old lives for granted. We lived our lives as we did then something happened to us and here we are. That's the tough part. Picking up the pieces and moving on. I know a job will help, even though it would bring with it, it's own challenges.
thats the best idea greg, look for a possible new career. Myself, i was an electrical engineer to start with, 2 years done in apprenticeship. My speech was shot to peices, so there was no point even trying it. I took a year out, and went back to college, really basic stuff IT. As i went on, i decided to go for graphic/web design - basically u dont have to speak too that many people ;) U never know what u can do yet greg. Maybe my job as electrical enginner could have been fun, but i do enjoy my current one, despite my aphasia etc....
Greg, rant & get it off your chest because it is of benefit to you to release that built up stress. Pissed... can't do what we use to do... 'relearning' = I agree that everyone here can empathize on those things... I know I certainly can! While I still get pissed over not being able to do some things (things that were effortlessly done previously) as well as the 'disruptions'& losses that my AVM 'event' has caused, I try to use that pissed offed-ness as 'motivation' for me to keep on doing those mundane, boring, time-consuming things that will help make me get better/rebound. You will have 'good days and bad days'... expect them & give in to those bad days and try to think about something good (yes, there IS something 'good' to be found in EVERYTHING) and, before you realize it, the day WILL end & the next day will be better.
I wouldn't say I've had it more difficult than you or anybody else. I think we are all forced to face these new challenges and for each case, each person, the challenges are the hardest, harder than anyone else's no matter the scale or closely related comparisons.
Greg, I truly feel for you. I had an AVM successfully treated in 2006 and am fortunate to say I do not have any major life impairments. I am blind in my upper left quadrant, but I was never a pilot or a skeet shooter. I'm 5'6, so I couldn't rebound anyway.
Yada yada. Just posting to say I feel for you and you'll be in my thoughts. I guess the only best thing to do is stay positive. We're all lucky to still be here. Plenty of people are diagnosed with this type of thing when they unexpectedly fall over dead. Time gives the setting, fate writes the script, but only you can decide on the character. Be well.
Thanks for the reply. I am looking into other career possibilities. Tough to get into something new at my age. I may get a degree in occupational health/safety as I minored in aviation safety when I was in college. Again, with no prior experience, it's going to be difficult but a degree will help.