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Difficult situation


Eillyre
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Dear friends,

I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday. I guess it's sort of a hybrid of a musing, a venting, and a plea for advice. :rolleyes::)

I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents. While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though. She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't. I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store. :blink::( It was a moment that I had been dreading...the first time I ran into someone from my "former life."

I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do. As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real.

Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?" How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down? One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health." But, somehow that just didn't sit right with me. Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will. Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance. I still don't know.

I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings. I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway. Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life. I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation? Just wondered.

Thanks for listening -- sorry it's so long for tired eyes and foggy brains! :)

With love,

Angela

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Angela,

I have no great words of wisdom except that I don't think what you did was weird and I also don't think there is really a right or wrong way to deal with situations like that. I think we have to just do what ever feels right at the time. But I can appreciate how awkward it must have been for you.

I too, have gone out of my way to avoid people in situations where I just don't feel like talking about where I've been or how I've been feeling. I tend to do this avoidance with people who I haven't seen in a while and in situations where you can't really talk like in a bookstore etc.. Sometimes it's because I'm caught off guard and other times it's simply because I don't feel like talking about my situation.

Maybe in the future you'll run into this woman again and you can share with her what's going on. Or maybe not.

I guess my point after all this rambling is to not feel bad and to just do what ever you feel you need to do if the situation comes up again.

Finally, a lot of people who are not sick avoid others if they don't feel like talking. My husband and my friends do it all the time.

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Eillyre,

I don't blame you a bit or think it was odd to run away from that chance meeting. I used to be very outgoing and would go up to people all the time to chat for whatever reason. Since my illness took over full-time, I now run the other way when I see someone, and I don't even answer the phone anymore.

As far as telling people about your life, you will know when you feel comfortable with that. I know I'm coming at it from a different direction than you are, but I'm actually quite open about it. I didn't really realize how sick I'd been most of my life - I thought it was just normal, because until adulthood it only came in waves. But when I stumbled upon "dysautonomia" just a few years ago and realized that was why I had become nearly bedridden, I wanted to shout it from the rooftops. I finally had a REASON for acting so strangely, and for having been forced to give up my full- and part-time careers as a school teacher, as a conductor, as a workshop leader, as a singer and as a performer. It was a freedom for me to learn there was something truly wrong (as I'd always believed) and not just some "hysteria" or some such label that most of the medical world wanted to put on my situation.

Also, I very much understand your feelings about being on the road to success as a performer and then having it ripped away. My health has become strong enough that I can again perform, but in a limited fashion and only as a pianist. I have had to accept that I will never be a leader or singer again, and that music that used to be so easy for me now must be practiced over and over and over - and I still can't promise I won't screw it up. This has taken a huge toll on my confidence and self-esteem. But my life is what it is, and I refuse to give up. I just have to accept that it's different and go on from there.

Perhaps you will find another way to be involved with dancing. I know this may not sound at all enticing right now, but you may someday find yourself working behind the scenes for performances or maybe at an arts school. I never would have believed I'd be involved with computers - my whole life was about music. I barely knew how to turn on a computer 10 years ago, but now I am the head of technology at my workplace. And as I was leaving teaching, I started freelancing as a proofreader, which landed me 2 full-time positions after that. There is always a new avenue to pursue when the time is right. Keep yourself open to new possibilities!

Until then, don't feel bad about doing what you feel you need to do. There is a time and a place for everything. You'll know when you are ready to tell others about your situation, and you'll find another avenue to pursue, maybe related to dancing and maybe not, but it will be something that you may not realize you have an aptitude for right now. And that will be exciting for you.

Wishing you the very best!!!

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Hi Angela,

I can understand why you were hiding, as I did that myself. I can't speak for you, but when I did this that was just because I felt not strong enough to hear exciting stories and have to tell that I was sick and didn't do anything. Sometimes it's sooo difficult to have POTS that it hurts soo much to listen to people telling you all the things they are able to do and just know that you can't follow them (while that's all that you want). I also think that this time of year makes it extra difficult for us. Don't be mad at yourself for hiding, I think at that moment you did what you had to do (for yourself). Wish you a merry Christmas and lots of health in the new year,

Corina

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Angela,

This is so difficult for you to see people who remind you of the person you once were, and want to be again. I probably would have also wanted to hide.

But I am learning honesty is the only way to explain what's happening to you. Bad things happen to very good, healthy people. And almost everyone has a person in their family, or a friend, who's had something bad happen, whether it's POTS, or a car accident that's left them with paralysis, or an unusual medical problem that's caused some degree of change in a person's life. You'd be surprised.

If you have to explain what you've been doing, try to do so in a positive way. I think sometimes is hard for the person on the other end to know what to say. I mean, what would YOU say if SHE had POTS and was incapacitated? Maybe you could offer ways she might be able to help you. Maybe come and visit or something.

It is, without a doubt, very, very unfortunate for any of us to have POTS. And it's even worse when it causes us to have to give up or put on hold our dreams, careers, etc. But stay positive, as hard as it is.

Happy holidays,

Amy

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Greetings from a fellow column hugger! I have also avoided people from my "past life". And unfortunately, a lot of people from this life still don't understand either. I have found that if I am really confronted by the issue I tend to hide behind the "mysterious disease" story, since I'm pretty much homebound these days I don't run into people very often.

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There is no perfect answer to that question. Health information is a very personal thing and it is up to you to decide to whom you want to tell, what information you want to give out, and when. So what you say is going to change from person to person...day to day. Hmmmm....that sounds just like POTS.

In the meantime....if you are able and your doctor agrees it is okay......

Confide in your dance teachers and get some advice. They may know of dance therapists who can help you to begin to dance again. There are also dance companies who work with all types of dancers...such as Liz Lehrman....See http://www.danceexchange.org/

Teaching dance can be fulfilling. There are teachers out there in their 80's. Maybe you know of one or two. Go and see how they teach.

And still go and see the performances of those that you know (and don't know too) in the dance world. It will surely bring you joy to watch....and smiles can be good for your health....and I am sure that your friends will very much appreciate you being there to see them dance.

Etoly

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Angela

I'm sorry for your dreadful experience. Of course it's natural to go through the mourning for our old life. I'm not a professional dancer but I think since I was once an athlete I have a good idea of your disappointment, the unknown and the desire to be.

I think if you experience the situation again you should either decline to say what you're doing now or be forthcoming. She might have been very supportive or if she wasn't then you would know what kind of person she was.

As for dance, I'm not sure about your current symptoms right off but have you thought about participating in another way just so you can stay close to what you love. Maybe you could teach sitting down on a bar stool or consult. You might get better one day and it would be nice to stay connected to what you love, one foot in the door.

Ok, take it for what it's worth and hang in there. I think we've all experienced awkward moments so don't feel bad. You just weren't prepared.

Steph

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Hi Angela:

Wow, your post really hit home with me. Not only can I totally relate to the "avoidance of people I know" thing, but I am also an "artist". I am a professional musician. I went to Juilliard and lived in NYC for many years. I was actually diagnosed with dysautonomia while I was in school there. Actually, I almost didn't get my degree because I was so sick. I was in and out of the hospital for most of my last year of school. (By the way, I was born with POTS. I can't imagine having a sudden onset of it! I feel lucky that at least I am familiar with it....really it is all I know in terms of my health and well (or not-so-well) being. I often wonder what it would feel like to be a "normal" healthy person.

Now I am in a place where my career is barely existent. I went from being in the middle of "it all" in NYC with a great aspiring career to someone who had to completely change my life because of my illness. I can't tell you how many times I have passed out and/or gotten sick on stage in performance. Employers aren't very keen on that. Quickly the word got out about me....that I was sick...or in my own words...."damaged goods".

In any case, enough about me....one thing that I can really read into your post which I understand too well is the struggle with letting go of your art...your personae as an artist whether it be musician, dancer, painter, etc. For me, I am a musician whether I am able to get up and play or not....but somehow it's hard to believe that my colleagues and peers (especially the successful ones) don't look at me differently because I don't do it anymore or at most, play very little.

I have two very close friends that I went all through Juilliard with. We are all viola players. They are both extremely successful in their musical lives. Of course, I am thrilled for them, but I guess I'm also pretty envious and jealous of that. I feel like I've really been cheated out of something that has meant so much to me for so long....almost my whole life.

I really think it is different for artist types...musicians and dancers especially...because the field is SO competitive....those of us who decide to go for it do it because we can't live without it...we certainly don't do it for the money!!! And then when you are suddenly faced with not having a choice whether to do it or not it is utterly heartbreaking.

I don't know if I have relayed my message to you very well....but I DO understand how bad it feels to run into someone who is very successful at something that you can't do anymore...something that has always been your life...and has now been taken away by illness.

I haven't completely left music (yet.) The reason I haven't let it go completely is because it is such a big part of me and my personae as a human being. I just can't let it die...although sometimes I think I really should. Either way it is painful for sure.

My only advice is to hold your head up high and call yourself a dancer whether you are able to do it right now or not. This nasty illness may keep you from the stage, but it really can't take dance (or anything!) from your heart and soul.

I'm 38 now and I have worked for many years to try to get rid of my "damaged goods" perception of myself. I think I'm doing pretty well with it by now, even though my illness continues to get worse.

Don't give up! I wish you all the best!

Kristen

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angela!

i HAVE to hit the hay...but i have read your post and the responses...and i just wanted to send you a little affirmation and validation...b/c what you did? that could have been me! that has been me! i have done and thought the exact same things as you did...i hope that makes you feel a little better and a little less alone...k? :)

sending you hugs...i will try to write a better response another day, but i wanted to at least let you know you are not alone in this feeling.

hope you had a good holiday.

emily

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Angela, As you can read from other posts your actions are very common. I have hidden behind many pillars myself. As Kristian put it, you are in a grieving process. You have soo much to grieve about. It is a process and we all go through it differently. I would say more but I need to get ready for church,

Dawn

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I think you were very brave to hide behind a pillar. At 9 months of diagnosis, I still hid inside my home. At 2 years, I hadn't progressed much further. Then, I participated in an 11-week group for terminal and chronic illness. At the first meeting, we each had to explain a little about our situation to the group. That was the first time I ever said out loud what was wrong with me to others. The group setting along with making other new friends--who only know me in my current state and therefore like me as I am-- help me to accept the challenges POTS/NMH presents daily. Another thing that helped was developing new interests or finding ways to participate, to the extent possible (when possible) in old activities.

So, that having been said . . . here are my sort of standard answers (I'm not suggesting that these answers are right for you, just after a few years of practice, here's the approach I take now) when running into someone I haven't seen in a while:

Q from acquaintance: How are you doing?

A: Great. And you? (I find many people just really want to tell me how they are doing anyway, so, if they don't get back to asking me any questions, I just let them go on. And, I keep my medical situation to myself.)

Q: I haven't seen you in a while. Are you working somewhere?

A: No. Now, I am a lady of leisure. Really, I've had some health issues come up that are taking a front seat, but, on the plus side, it's really helped to put things into focus for me/prioritize the really important things in my life.

Q: What is your illness?

A: It has a lot of consonants. Would you like to buy a vowel? Just kidding, the good news is that it's not contagious or anything. (Then, if they really want to know, I give them the full diagnosis. But, by then, I usually can't stand or sit any longer, so, I'm sure to explain to them that my condition affects my circulation and I need to walk around a bit--then, I ask them if they would like to walk with me.)

Then, I turn the conversation back to finding out more about what's going on in their life, just as I would have done before my illness. If they really care to follow up with me more about it later, they will. And, if they seem genuinely interested, I'll propose that we get together sometime (explaining that I don't always know if I'll be able to make it until the time arrives--but, I might also say "but, look at me today, here I am shopping & I'm so thrilled we've had a chance to catch up today.") Alternatively, I share something else (non-medical-related) that is going on in my life--like a good book I've read, movie, etc. (if I run into someone when I've been too sick to read a good book, see a movie, etc., then I ask them about something I've wanted to see or read. But, that's just me--I find it interesting to hear other people's perspectives on things that I might not be able to directly participate in.)

The most important thing for me when socializing is to remember that my diagnosis is just one part pf me, it does not define who I am. The more naturally I correspond with people, I've found the more likely they are to include me (with my many limitations) in the fun things they do.

The awkward situation of addressing my illness also comes up in dating. Boy, do I have more than my fair share of embarrasing dating stories. But, that's for another day--I also suffer from Raynaud's & so typing isn't good for me--I guess I'll work on being more succint next time!

Hold your head high. You sound like a very accomplished and talented person. I am very sorry that you are having to deal with this illness.

--Wendi

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Wendi,

I think those are some great suggestions. Obviously you've put a lot of thought into this. We all have our own ways of interacting with people, but I think we could all definitely use some of those ideas for fielding questions from others in the future. Thanks for your post!

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Angela, I avoid people simply because I get sick and tired of hearing, well you LOOK great! Amazing what losing weight because you can't eat will do to the way people look at you. I am in the correct weight range and have both arms and legs, therefore I can not possibly be sick. I was a nurse for 29 years and it's such a part of my life, it was like a part of me died when I had to stop. I didn't get my license renewed this year for the first time. And people don't understand that either. But it was such a big part of my identity and it's just been ripped away. On top of that I will be 50 tomorrow and even if I do ever get better, what will I do? Nursing was all I knew, all my friends are still nurses. It's not like I can even stand at Walmart and be a greeter for cripe's sake! So I know exactly how you feel. It's very difficult to see people doing the things you want to do, and not being able to explain why you can't do it. I don't mean for this to be a downer note, just an I really understand type of note. But then I am rambling. Just want to send hugs your way, say I understand and pray you will dance again and very soon! Morgan

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Dear friends,

I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

With love,

Angela

Angela-

I have been in your situation. Life is turned upside down with illnesses such as ours. To be fair to yourself I would be honest with your situation to your friend. It is nothing to be ashamed about and in the long run you would feel better about yourself.

Diane

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Dear friends,

I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

With love,

Angela

Angela-

I have been in your situation. Life is turned upside down with illnesses such as ours. To be fair to yourself I would be honest with your situation to your friend. It is nothing to be ashamed about and in the long run you would feel better about yourself.

Diane

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Dear friends,

I hate to post this right before the holidays -- I just felt like I needed to talk out a situation that I ran into the day before yesterday.  I guess it's sort of a hybrid of a musing, a venting, and a plea for advice.  :ph34r:  :) 

I was not feeling very well at all, but wanted to make an effort at some short shopping for Christmas presents.  While I was at one store, I almost bumped into a girl I used to dance with -- she didn't see me, though.  She's very sweet and I wanted so much to go up to her and say hi and catch up on what she's been up to, but, I'm rather ashamed to say, I didn't.  I know it sounds pathetic, but I actually HID behind a column in the store as she walked past and then skulked around behind store displays until she left the store.  :blink:  :(  It was a moment that I had been dreading...the first time I ran into someone from my "former life."

I'm absolutely mortified by my behaviour, but at the same time, I just didn't know what else to do.  As soon as I saw her standing there looking so very tall and thin and like the very successful dancer she is, everything that I've struggled with these last nine months engulfed me...not getting to laugh through mishaps with friends at rehearsals, no pre-performance excitement while applying make-up and donning exquisitely beautiful tutus and tiaras, the aching muscles from not being able to take class, missing the exhilaration of flying through the air as the music swells and crescendos, having difficulty walking around let alone dreamily walzing and foxtrotting around the floor at midnight, never running to catch the subway to get to my next class, having to pack away the size 4 pants until I can excercise to get myself back into shape (yes, I know it's vanity :)).... I could see it all for a moment, could feel it all again as if it were real. 

Everything inside me rebelled at the idea of asking Emily what was going on in her life, knowing that the dreaded question would soon arise..."And so what are you doing these days?"  How could I explain to her in the middle of the bustle and shoving of a crowded Barnes & Noble that a great deal of my life has been turned upside down?  One does not simply shout over the surrounding noise that all one's dreams have been shattered...that life these days is regrouping from that sorrow and forging a new path, embracing the simple triumphs of the day such as doing dishes or getting a bowl out of the cupboard for breakfast without fainting.

Sure, I could have used that standard line, "Well, I got sick in April and eventually had to completely stop dancing in July; right now we're still trying to find someone who can find a treatment that will get me back to more normal health."  But, somehow that just didn't sit right with me.  Maybe it was an issue of ego, not wanting to admit to this girl, who's been "groomed" from the age of three to be a successful dancer and now performs with NYC Ballet, that she's going to achieve a life of success in a field that I love, while I, at this point, probably never will.  Maybe it was a matter of feeling like we really had very little in common now, beyond a love for dance.  I still don't know. 

I'm not wanting to ramble and I know that most of you were not dancers, but you've all suffered your own particular losses and still work on adjustments to life that dysautonomia brings.  I'm not even sure what sort of response I'm looking for in posting this, but I felt like I needed to let it out anyway.  Please don't think that I'm in a pit of despair over the turn my life has taken -- I know God's has this all worked out into the most beautiful plan imaginable and I take joy & hope in life.  I think it'll be easier to handle this sort of situation as time goes on, but do you have any words of wisdom on this sort of situation?  Just wondered. 

Thanks for listening -- sorry it's so long for tired eyes and foggy brains!  :)

With love,

Angela

I can't seem to post without getting the quote passage-sorry.

I too get tired of people coming up to me and saying, 'You look good" when I actually feel absolutely horrible. That is why it is nice to have posts like this so discussion isn't so difficult. lso, my partner of 9 years is very healthy and it is hard to be around her sometimes. I really hate to say that, but I am jealous that she can get up and go to work every day and live a "normal" healthy life. I have been disabled since 1998, and had to leave a job I enjoyed and worked 12+ hours daily!! My life is changed and somehow I have to learn to live with it. Sometimes I just try to find the smallest glimmer of hope even for just one moment to get me through the day. My symptoms are in full force right now and it is hard. I can't even get out to see a movie. I am grateful to have today and people like you to get me through.

Keep posting and take care.

Diane

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Guest Mary from OH

{{{{{{{{Angela}}}}}}}}}-

I know that no words can take away the pain and disappointment that you are feeling. And because of my own POTSie mood, I have little way in words of wisdom.... I can hear the pain and hurt in your voice. My heart aches for you. My ballet dreams were crushed at a much younger age. I was unable to progress to toe shoes because of "lax ligaments". I was devastated and never danced again. (Unfortunately, I continued gymnastics on/off and ended up tearing all the ligaments in my R knee in college!)

However, I can relate to your experience as (obviously by the response) many have... It IS very difficult to "run into" people from your "former life". Sometimes, it's downright depressing and even maddening... But, you do have a choice in how you want to handle it. And, the nice thing is there's no RIGHT answer!! And each time, your answer may be different. The way you handled it this time was avoidance. It is very appropriate and understandable. Another way was, as someone here (sorry my POTS brain forgot even though I tried really hard to remember!!) so nicely pointed out, to say hello and address your medical situation and leave it at being hopeful that you will be able to return to dancing as soon as your body will allow you to. As a fellow dancer, she/he should be able to commiserate in your situation and support you!!

I think that during all of our lives, we have had experiences which caused us to modify our dreams. I think that it is up to you to view this part of your life as a temporary setback. I agree with someone else about looking into the possibilities of getting involved with dance in another way. Perhaps at a local studio. They would JUMP at the chance of a prima ballerina from NYC in their midst. You could do choreography. You could work with the older, more elite ballerinas who know the steps and if you're having a "bad" day, YOU don't need to demonstrate, you use them and critique what they've done... I'm sure you could find a studio willing to work with you. I think finding a way to stay involved in the dance world until you're strong enough to get back to NYC is a good thing.... What do YOU think??

Take care of yourself and don't be so critical!! I know, it's been drummed into your head for a long time!!

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Dear friends,

I'm so sorry it's taken so long to get back to you all, but THANK YOU THANK YOU THANK YOU for your responses. I wrote a lengthy and heartfelt post to you all a few days ago, but hit a wrong button and erased it all! :huh::):blink::( I hadn't the energy or brainpower to redo it then, so I'm trying again today. Take 2! :)

I am feeling much better after a very lovely, though waring, holiday. I felt absolutely wretched when I posted (a perfect time to celebrate the birth of the one who made the lame walk and the blind see again, eh! :) ) and was so emotionally wrung out, compounded by more doctor appointment frustrations, that I just had to let everything out. I'm still pretty exhausted (I've had my 2 1/2 and 1 year old nieces here for a week -- precious little chicklets, but with unquenchable energy stores!!! :) ), but feel much more on top of things.

I've studied your suggestions and thought things out a bit, so I feel more prepared for my future run-ins. I invited two of my best friends who had been away at college over (had a great evening of fun!) and was able to explain my whole situation to them, which helped me feel like I had a little better handle on communicating POTS to others without boring or confusing them to death.

I'm trying to get back to my academic studies (brain issues had really become a huge problem during December) and get myself into better health. Once I'm able to function a bit better, I am going to look into what I might be able to do in the dance world for the present. I've never been really wild about coming up with original choreography, but I'm very good at crafting roles (making a character really come alive) and polishing choreography. I've considered coaching and know a number of local teachers, so that might be a possibility. I also love the costuming aspect of performances and I'm thinking about how I might get invoved in that as well.

Kristen & Mary, I'm so sorry to hear about your own artistic heartaches -- thanks for sharing with me and your words of encouragement.

Heading back to the couch for now. Hope you're able to look back on a year full of joys, and look forward to one even more so!

With love,

Angela

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  • 2 weeks later...

Angela,

A QUESTION?????? Would you feel the same if you had diabetis. I too was a dancer and a fitness expert, I started to gain weight. you know how the story goes finally I was diagnosed. GOOD FOR YOU that you were able to go out shopping. Perhaps your friend would really have appreciated the ability to catch up and what a better place than barnes and noble, where you can sit!!!!!!!!!!!! :P

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