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I've just been realizing lately that, 2 1/2 years after my stroke, I'm still in some sort of denial...or maybe I'm just a super optimist.  I'm not sure which, and I'm wondering if anyone else goes through this.

 

The day of my stroke, when the doc diagnosed me, I told him he couldn't be right because my symptoms didn't match what you always hear about (drooping mouth, weak limbs, slurred speech, etc.).  He said there were other symptoms as well, and I had those.  It took me at least a month to stop saying, "They SAID they THINK I had a stroke," instead of saying "I had a stroke."  Then I kept trying to do everything and excel at PT and OT so I could get back to full-time work.  I came up with a schedule to ease back into my job as Director of Music Ministries at the church where I worked.  The week after I finally took over all the job responsibilities, I ended up back in the hospital for a couple of days.  Eventually, the church had to let me go because they felt I was pushing myself too hard (I kept missing days because I was having other physical problems).  I resisted letting my homemaker do much more than laundry because I was able to do all the other things around my house, but if I used up all my energy on one chore, none of the rest got done, plus I needed the energy for things like doctor's appointments.  I've had to learn to let my homemaker do more, and now we're looking for someone to help with groceries and food prep on a weekly basis.  But my mind still resists because I can do those things - well, I might need a LITTLE help - oh, yeah, I guess having someone doing the bulk of it would be nice.  I have so many things that I still seem to be in denial about.  I haven't quite yet given up on the idea that I'm going to regain physical function (like smoother walking, less pain, better balance), and I'm starting to realize that maybe some of my thinking skills aren't quite where I used to be (and admit that's a problem, not just a temporary glitch).

 

Is it normal to have this kind of denial thinking for so long after the stroke?  Or am I just an optimist who's starting to lose confidence in recovery?  I don't know what to think about it, so I don't know if I should encourage myself to keep hanging on to the way I think or if I should let it go and "get real."  I'd love to hear from anyone else who's experienced anything like this.

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This hit home in many ways for me.  Strokes that have a different symptoms can cause confusion and yet when you think about it, all strokes are different as the brain neurons are obviously different all the years before creating them.  I still have hope I will improve and feel upset, at some hidden level, that the docs did not push for full recovery.  All they seemed to care about was wanting me to walk again.  I just wanted to get back to work and show it was not anything and I would be normal again. 

 

I still cannot run, ride a bike or play the piano and I have a MA as a piano pedagogue.  My stroke was on the road to reconnect my motor planning skills after being paralyzed for four months after.  I fell and broke the two leg bones on the same deficit side, never was the same again.  Because I could not face the issues of recovery, I broke a lot more bones.  This continued until now I can no longer face the truth.  I still fight the posssibility I will never run again or ride a bike, but I still refuse to short myself. 

 

This roller coaster ride can be so worrisome but try to do it with humor and love of repairing those brain connections.  I see it like a train track that is still being built and hope you find someone who believes in your desire to be whole again.  If not, why not.  After all we know the brain has so many remarkable abilities for repair.  Giving up to allow a helper do a little more work, as you heal is best for you then allow it as you continue to mend instead of giving up.  Rest and caution helps me move forward.  It is getting better and better, but slowly which is maddening. 

 

My fighting it makes it worse, so go with the flow of what your body needs.  I talk to mine, but find the main problem is I do not talk to it enough as I had spent a whole lifetime of ignoring what it told me.  I so admire the gym folks nowadays who are focused so much on their body.  I wonder how they so aware of it, when I had always been less and less aware of the body, as if my head/brain and body were two separate entities, which is what caused the stroke. 

 

As a youth my own family put me down from wanting to be active which I blame them for.  Listening to your body needs can be a challenge in itself and feels selffish and foreign but necessary.  No pain for me is leading to my death and I need to honor the pain but not push beyond endurance.  Budget you time and treat you body like a friend.  After all it is the closest friend we will ever have and I still ignor it often--such a bad habit.  There is science now to explain our ignoring our brain and we need to heed and honor the body.

 

So sorry I get so verbal but this hit home for me tonight.  I wish ou well in whatever you need to do for you body, not just the mind but the body, too.  Keep on healing and sorry you had to change your music endeavors.  Maybe if you just focused on the music and let you helper do the rest might be more fun for you.  I know how losing music feels.  Lately I am using music to heal myself and other folks I still work with and it has made me so much happier, even though I might never be good at performing ever again.  At least I can help others now lose their skills in their passion of life.  I like optimists--makes me smile.  Marcia

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Hi Cons2g, Sorry I've been off the board for a few weeks due to illness so I don't know your name.  Learning to manage energy after a stroke can be tricky and admitting to yourself that you don't have all the energy in the world like you used to is hard.  I so want to jump back into work after 2 weeks in hospital with a non stroke related problem, but I have to admit to myself that if I do that I'm going to pay for it in a whole heap of ways.

 

I do recommend that you become familiar with "Spoon Theory" https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

You don't need to give up on improving physical  and mental function you are only 2.5 years in. I'm still working on improving gait and working towards running again and I'm now 7.5 years post and in the last 2 years I've made huge gains in my gait goals.  The hard part  is accepting that no matter how hard you work you are very unlikely to get back to your pre stroke "normal". So instead I work on improving what I do have and living the best life I can.

 

Do set yourself goals and work on them but remember there is now only limited energy so you need to balance your goals against your reserves and remember that there's no harm in taking help where you have it. Just because you can do it doesn't mean you should do it. Stubborn has it's uses in post stroke life but you also need to work out when it is appropriate to use it.

-Heather

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Wow Heather that is a powerful article. I wish I had known about the spoon theory when I used to have to turn down an invitation because I knew either Ray would-be too tired or I would find the venue too awkward to take him to. Caregivers have to make those decisions too because with many tasks to do, often some of them once the tasks formerly done by the person we now care for, there are a lot of either/or decisions to be made. Thank you for drawing this to our attention.

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Cons, Your post hit home with me, too, as I  once used those exact same words to describe myself. I had been invited to attend a stroke support group while I was in in-pt. rehab. We were to go around the room, introduce ourselves, and provide info on our strokes. When it was my  turn, I gave my name, and said,"They said I had a stroke..." and then did as those before me had, and gave more specific info as to where, etc. My answer, "they said..." bothered me for a long time. Why had I said that?  It took me a couple of years to figure out that it sounded like I was saying that "they" might be wrong. Was I in denial back then? Probably. What about now? Now, I'm a self-proclaimed "optimistic realist" in that I accept the reality that I had a stroke, but I also "choose to" believe that improvement is possible 10 yrs. after a stroke. If I'm wrong, I'm sure I'll find out. The hard way, like I've always learned things.   Becky  

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This is an interesting topic. I'm also almost 2.5 years out.  For me at first I couldn't do anything...no chores, no cooking, no shopping, nothing longer than about 5 minutes at a time. I was afraid of the dark and couldn't see good at night which made me very dizzy and I had night lights everywhere. It was so in my face. I think one difference was that I was not diagnosed until about 2 months after and therefore didn't get any therapy until around 2.5 months. It was then that I felt that feeling that I was going to be all better. I finally had answers and the therapy was helping so much. I worked hard!! As long as I was in therapy I just knew I was going to kick this thing. In fact I was first dropped from OT and I cried I'm not even sure why. My PT had been really going very well but as of that time no one had addressed the night time issues. Then one day I came to PT and was made to work on things in the dark. In a windowless room with the door shut. I was supposed to balance on that half ball thingy. I couldn't for more than a few seconds. At that very moment I asked my therapist was I coming here to get all better or just to learn how to cope with what was left. She turned on the lights and said "Tracy you have improved so well but sometimes you are learning just how to cope. That was my first realization that maybe I wasn't going to be the old me. So I know I was in denial and those words killed me inside. 2 weeks later I was told that day would be my last day in PT. Again once I went to speech therapy I cried. Not being in denial has been the hardest thing for me. Figuring it out though has helped me to stay motivated to do better and better. I did have to learn to be realistic. That ha allowed me to be kind to myself and to set positive goals. Lol I don't know if this answers the question well. But it's what I experienced.

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5 hours ago, tmciriani said:

This is an interesting topic. I'm also almost 2.5 years out.  For me at first I couldn't do anything...no chores, no cooking, no shopping, nothing longer than about 5 minutes at a time. I was afraid of the dark and couldn't see good at night which made me very dizzy and I had night lights everywhere. It was so in my face. I think one difference was that I was not diagnosed until about 2 months after and therefore didn't get any therapy until around 2.5 months. It was then that I felt that feeling that I was going to be all better. I finally had answers and the therapy was helping so much. I worked hard!! As long as I was in therapy I just knew I was going to kick this thing. In fact I was first dropped from OT and I cried I'm not even sure why. My PT had been really going very well but as of that time no one had addressed the night time issues. Then one day I came to PT and was made to work on things in the dark. In a windowless room with the door shut. I was supposed to balance on that half ball thingy. I couldn't for more than a few seconds. At that very moment I asked my therapist was I coming here to get all better or just to learn how to cope with what was left. She turned on the lights and said "Tracy you have improved so well but sometimes you are learning just how to cope. That was my first realization that maybe I wasn't going to be the old me. So I know I was in denial and those words killed me inside. 2 weeks later I was told that day would be my last day in PT. Again once I went to speech therapy I cried. Not being in denial has been the hardest thing for me. Figuring it out though has helped me to stay motivated to do better and better. I did have to learn to be realistic. That ha allowed me to be kind to myself and to set positive goals. Lol I don't know if this answers the question well. But it's what I experienced.

 

I freeze if it's dark, and have to have nightlights.  I always have a flashlight near me in case the power goes out too.  I had a bad fall one night in the dark, and banged my cheek on an edge of a coffee table.  (Thankfully nothing was broken, but it swelled like crazy!  I don't have external pain sensation on that side, so it didn't hurt either.)  Ever since ---> nightlights! :cool:

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Wow!  So many responses in 24 hours!  Thanks so much, you guys - I guess I'm not alone in trying to wrap my head around how dramatically life changed in a few hours.

 

I am ever so grateful for the things I DIDN'T lose to the stroke - things like 95% of my cognitive skills, my speech, and my ability to play piano.  These things are central to who I am as a person, and I don't know what I'd do without them.  That said, I miss the pre-stroke things like balance, a clear head, energy, regular sleep patterns, normal pain-free sensation on my left side, walking briskly down the street (without a cane or walker), even just looking over my shoulder or pivoting quickly without falling over.  My mind keeps thinking I'm going to get those back if I'm patient and allow time to heal, but I'm starting to think that may not be completely true.  My life as I knew it for 52 years may have ended forever that one day with a tiny blood clot they could barely even see on my CT scan.  No warning.  No chance to prepare or prevent it.  Just, "Good morning, oh, what's wrong with me?  Guess I'm going to miss work today."  I honestly thought I'd be back to work within a month or so.  Two and half years later, the only work I'm able to do is accompanying a 90-minute weekly choir rehearsal.  I love the choir, but I was kind of expecting a little more than this.

 

I've been resistant to doctors and PT's when they tried to tell me that I wouldn't recover much more than wherever I was when they talked to me.  I have improved beyond what they said, but change comes slower and slower, and I'm starting to think there's only so much I can squeeze out of my body at this point.  I won't give up looking for improvement, but I'm beginning to play with the idea that I may have to accept this as who I am for the rest of my life (because God forbid anything else traumatic happens to take away what I have now).  I'm having a hard time coming to terms with being "disabled" and "retired" at age 54.  What do I do with myself?  How can I be useful for decades to come?  How do I support myself?  This is a weird situation in which to find oneself, and my mind is only just now starting to seriously consider it as potentially permanent.  I guess that's the part that feels so odd - picturing my life 10, 20, 30 years from now, and imagining how I reach that point, instead of simply concentrating on what I need to do today to be a little better tomorrow.  It's moving out of that "I'm ill and need to concentrate on healing" mindset into the "I'm a regular person with a life to live" way of thinking; it's the long view instead of the close-up, moment-by-moment crisis mode.

 

Thanks for letting me ramble on; it helps me to clarify things for myself when I try to explain to someone else what I'm feeling.  Just writing the things above has given me some insight into what's going through my head that I didn't have before I started writing, so again - thanks for letting me throw it all out here, and thanks for all the reflections back.  It really helps to hear that others can relate to what I'm going through.  You guys are awesome! 

 

Lisa

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I am a caregiver for my stroke survivor of 3 years.  As a caregiver I was of the mindset that my husband would complete his rehab and return home as normal.  Somehow this misconception was egged on by the social worker and/or therapist it seemed.  Maybe it was the time frame of stay that insurance approved but at the time everything seemed to lead to a road of what once was.  I mean my stroke survivor did everything he was suppose to do and with the encouragement everyone gave I thought it was just a hop, skip, and a jump.  So, imagine my dismay when my husband wasn't up and about like before.  Just a months shy of three years now and a second stroke later I just praise God for today.  He also did not have normal signs of stroke. Originally, we thought he he had food poisoning. For me, I had to learn to rest when my husband did.  I had to rewrite my daily routine all the while maintaining a positive outlook for my stroke survivor.  I am not trying to step in here and take glory but I want you to know that denial is an OK response.  I think it is OK to hope for things like before.  However, we try to look at what he can do now and how do we accommodate or adjust to what he can do now.  So, life just feels normal in our new way of living it.

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18 hours ago, heathber said:

 

I do recommend that you become familiar with "Spoon Theory" https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

 

This is suck a powerful understanding of energy levels. I mean, I'm living wild if I stay up past 9pm on a Friday night. I had energy that was amazing. Not as talented as some of those who shared their stories but energy still the same. I understand your emotions now. I just had a conversation with another survivor of 20 years and she is feeling the same as you.  When you are "let go" of a job you love, it feels like your purpose on this planet is taken away and you now feel not independent anymore.  Well just because you may not be able to work now.. maybe after you slow down and find your new flow ... try again or even Volunteer for a bit to get your footing back.

 I have not been able to work for 9 years and I must say at first I was devastated .. I mean I was 34 but I now can understand why my doctors have never given me the OK. I mean lie an issues ...:crazy: Basically, it isn't the end.. just take slower steps.. I can't lie and not say that I am not feeling these feelings for I am... a lot. but I understand why I can't but hopeful that you can go back ( part-time)  :) 

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If we all stayed unaware of what we can do, no one would be given permission to lead the purposeful life we are entitled to after years of all that knowledge and skill.  the man who put this site together can speak for that.  He was at the top of his game but never gave up despite the extent of his stroke so...please do what you can and do not let anyone tell you cannot benefit society with or without pay, if you choose to be a volunteer.    If you love your work, then proceed with kindness to yourself.  I hope everyone here felt a sense of purpose before their stroke and after.  If you have poor balance does not mean your thinking brain is not working.  If you have a speech problem, we have a computer or even our own hand that can speak for us. If you cannot use your hands there are voice driven computer... and so on.  I want a team who says let us proceed with your limits and use your skills wisely, instead of money driving us out to pasture.  Makes me sad.  Now, if you are due and want retirement, then great, go for it and enjoy that instead.  Life is too short which we all know all too well, more than the average person with not stroke under their belt and we know how to live well if that is what we choose and it sounds like you do, so keep up the choir directing.  It is wonderful and I hope the music, alone, helps you heal.  It does, you know!

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I have mixed feelings about the whole "usefulness" concept.  Part of me thinks that if I could never take a shower, get dressed, and leave the house again, that would be lovely, but part of me wants to summon up the energy to "do" something with myself and stop "wasting" my days away in just getting by.  I love that I have 3-4 days each weekend with nothing on my calendar so I can just chill and not do anything terribly important, maybe read a book, look at things online, fix a couple of meals, do a few jigsaw puzzles online, that kind of thing.  That's about how energetic I feel most of the time.  The other part of me is embarrassed that I don't have more self discipline to make myself get up and do something productive, like clean something, or cook something I can freeze for later, or run an errand, or just take a shower and fix my hair even if no one else will see me that day.  I don't enjoy boredom, just really, really low stress.  So after a while, I realize I've accomplished absolutely nothing worthwhile for the day/week/month, and I start to feel guilty, because I'm not working full time, I have all this time on my hands, so what am I doing with it?  It was one thing when I was in the nursing home for rehab right after my stroke, but now I'm home I should be doing something, shouldn't I?  Especially if this is how I'm going to feel for the rest of my life.  I can't just check out, but I don't know what else to do to make it different.  When I do panic and push myself, I just end up needing more downtime to recover, so that doesn't work (duh!).  I know better in my head, but my feelings are just starting to wake up to this, and it's going to take a while for them to catch up.  So I try to not drive myself too crazy over it, but every once in a while, I do catch myself acting a little nuts about it all.  It's like a parent and their toddler walking along.  The toddler (my emotions) gets distracted by something and stops to look at it.  After a while, he looks up and realizes his parent (my mind) has continued walking on.  He flips out and runs screaming to catch up, while the parent calmly waits.  They both know it will be fine in the end, but the toddler freaks until he catches up.  I feel divided over this whole useful-vs.-low-energy conundrum, but I know that eventually the toddler/emotions will catch up and I'll be back in one piece again.  At that point, I should be better able to accept where I'm at and have a clearer idea of where I'm going (that's my mind planning now, definitely not my emotions!).  :crazy:

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I just wanted to let you know that you are not alone...I know I have felt the same way as I'm sure many others have. Here's my example for today. I spent quite a bit of time trying out a new grocery app. I have to have a list with me. I still forgot the cat food. It took probably an hour to get about 20-25 things. I was brain dead at the end. Just done! Remember that spoon example that Sue gave above? Well I gave away all my spoons to the grocery store. :thumbs-down: This is somehing I did on a regular never ending basis befor the stroke and it didn't affect me. It sucks. I still believe in achieving better results and working for it. These are times when I am real with myself...I did too much. I know why and I know what that means...it may even affect me tomorrow. Again that just plain sucks. My recourse is to hopefully make a better decision next time to not give away all my spoons. I have had to learn to be good to myself, so I can be and feel useful to myself and others. It's hard sometimes to give yourself a break and not be so hard on yourself. Reward yourself, pamper yourself sometimes, allow yourself to just be not because you did something to deserve a reward just because you are you and you deserve it. :wink:

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P.S.   You probably already know or feel the things I said above. But you might not know that many others have or do felt\feel the same way. When you feel something it doesn't always feel good...you can't always turn your frown upside down (at the moment). I bet it will turn upside down! You just wait and see. We are here for you!! :2thumbs:

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All so true.  I find I have to crash for three days after working three very long and exhausting days.  But I love a long weekend as I never had that my whole career.  Was jealous of those who had their weekends clear to do fun things.  It was a habit, learned by that mother you were talking about.  We got this work ethic from our parents mostly, but life can be more open to change.   I find I love to do the things you mentioned on my long weekend and plan for the joy and.  If tired, I just norb in front ot the television or computer or my favorite read.  So wonderful as it was a luxury I never had until now, even after the stroke.   

 

I seriously miss skiing and biking, so I know how those great activites are no more.  I resent it and my body for failing me. 

 

I love the last entry to "Dance in the Rain."   

 

We all seem to see grocery shopping as a pain and I have to agree, especially carring the groceries.  I have a three story house.  I get all my exercise lifting them up the first two flights and wonder as I go up what wil I do when I cannot do this anymore.  Fortunately, I did learn that some groceries stores deliver and that was wondrous after I had hip sugery. 

 

Back in the day, I used to run an organization with volunterrs who would visit people in the home and they enjoyed playing games with the client or delivering meals on wheels.   I hope that program is started again in some cities.  Nice to have a friend visit on those long weekend days when you do not want to be alone.  the increase in population has lowered some of those marvelous services we once had.

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I'm glad I'm not the only one who's "lazy" on occasion.  Being surrounded in my life by non-stroke people, it's embarrassing to explain why I can't schedule early morning appointments or why I can't work for four hours at the middle school (or anywhere else, for that matter).  I've used the "spoon" analogy a few times, but it takes so long to explain, and mostly I get the all-knowing, "Oh, yes, of course," which makes me think they still don't realize how few spoons I actually have.  I guess, on the bright side, I live alone, so it's not like someone is hovering over my shoulder, keeping score!  And I'm not responsible for anyone else, like kids or a husband.  Would be nice to have the help of family, but it's probably just as nice to be alone when I'm fatigued.  

 

I think I'm already starting to get used to the idea of thinking of myself as not the person I used to be.  I'm not quite as freaked out as I was even a few days ago; guess thinking that way is beginning to become a little bit familiar.  I'll take that as progress!  As I just wrote on another thread, my life before the stroke wasn't perfect; it was filled with challenges.  Now, I just have different challenges.  The stroke didn't create stress in my life; it was already there.  The focus has just shifted.  So my old problem-solving skills may or may not apply to the new issues I'm working through.  If they do, hooray!  If they don't, then I'll just have to keep looking for new ways to work through things.  Goodness knows, I certainly have the time to spend on it!  And if I'm too tired to deal with something, well, I have a good excuse:  I've used up all my spoons for the time being :-)  So I guess this is my way of telling myself, don't stress out about getting rid of stress!!  It's a spoon waster!

 

Yep, here I go, dancing in the rain :-)

 

Lisa

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11 minutes ago, cons2g said:

 I've used the "spoon" analogy a few times, but it takes so long to explain, and mostly I get the all-knowing, "Oh, yes, of course," which makes me think they still don't realize how few spoons I actually have.   And if I'm too tired to deal with something, well, I have a good excuse:  I've used up all my spoons for the time being :-)  So I guess this is my way of telling myself, don't stress out about getting rid of stress!!  It's a spoon waster!

 

Yep, here I go, dancing in the rain :-)

 

Lisa

 

Hi Lisa,

 

What helps me a lot when I'm trying to have somebody understand, (Or even begin to understand) is being able to give them a written copy of whatever.  I've done it with the 'Spoon Theory' and other things.  (I use my printer a lot!)  That way I don't tire myself out trying to explain something. 

 

Dance away!

 

:smile:

 

 

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:happy-dance:          :biggrin:

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 Great insights, Lisa!!  Love the dancer!  You go, Girl!

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Hi Lisa, It's so good to see that you are getting the hang of this post stroke life and the mindset it needs. !! :cheers:

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Yes, I'm working on it.  Long way to go yet for perfection, but who knows?  Probably won't make it there anyway, so might as enjoy where I'm at!

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Perfect people are so boring and just not fun!

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Absolutely enjoy where you are at! :sneaking:You can do that as well as work on getting better. Life is for living there's no point in burying yourself in the nasty stuff, get out there and have FUN!

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My friends and I took a personality test one time, it said that I am a person who likes to have fun and who likes people around me to have fun too, even if it means telling completely humiliating stories about myself to make them laugh.  That's so true!!  Like the time I fell off the stage in the middle of a play...I've gotten a lot of mileage out of that one :-)

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OH MY Golly.. you fell off? Did you get hurt? I was always to nervous to go on stage. I stuttered as a kid ,frankly I still do with Aphasia, but when I did go on stage, I had to bring a copy of my lines and always started them of with a "h" sound,, no matter what the word.. so "haaaastop please' 

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