Jamie's Not-Important Rant on People Who are completely clueless about Health Issues.

[CardioClay]

This popped into my head the other day.

.................................................. ....

I play a huge saxophone in marching band. It's called the Baritone Saxophone. It's big and heavy and because of HCM I wasn't allowed to march with it (of course). And I wanted to march, but my mom gets extremely worried I would have a heart attack (go figure.) So, I didn't march. I was mad that I was the only woodwind instrument NOT marching. But I began to live with it. I got asked many times why I didn't march and I told them, and life moved on.

One day, a few months after the season started, me and some other members were in the instrument closet. One guy who plays a tenor sax (who know will referred to as GWPTS) said as I put my sax away,
"I'm going to play the Bari next year."
Shocked, I said back, "And what makes you think I'm not gonna play it."
"Well, I'll actually march with it." (that made me really angry.)
"I'm not allowed to march!!"
(in a somewhat stupid sounding way...)"Why?"
"I have a heart problem!"
"Oh." (not nice way of saying 'oh')

And he walked away. I just despise GWPTS now.

Then resently in Concert Band he's been mentioning the Bari more and more. I feel like tearing his head off everytime he says something like,
"[teacher's name], I'll need a harness for the Bari next year," or "Big Instruments need taller seats," or whatever.

It's just soo annoying that no one understands what I've been though. Since HCM is rare with people. I've had that saxophone for SIX months! I've been using alot of my own air just to play that huge thing! SIX months of working really hard of mastering a big saxophone and the director doesn't really care too. (sexist jerk.)

And all I get for it, is questions on why I don't march.

.................................................. ....

-Jamie

[Pam Alexson]

Jamie,

Sorry to hear of these obstacles. Alas it is true , some people will never get it or care very much . They really are the unfortunate ones to be pittied. They may never find themselves enlightened. Don't despair, there are many who do care like us and many in your future who will be worth having in your life. These people will really want to know how best to support you and care about you sincerely.

Pam

[Reenie]

Hang in there and let your parents help you educate the teachers if need be. Good luck.

Reenie

[Toogoofy317]

I know how you feel. As you know I work in security at Disney and sometimes I just want to scream. One morning I was working at Epcot I wasn't feeling too particularly well to begin with. Well, I found out that part of the position was to put out seventy metal stantions not to mention is was eighty degrees with a nighty-eight percent humidity level. I looked at the coordinator and said there is no way I could do it and not end up in the hospital. I mean for a normal person it is an ardous task. She looked at me and said "fine I'll tell the manager that you can't do your job and see if he will let someone help you or send you to health services and see why you can't do it." I said fine say what you want but I will still need help. Well, six o'clock rolled around and another security officer came out and said with a tone of disgust " they sent me out here to help you do your job since you're too lazy to do it. I'll start at the other end and meet you tward the middle but remember it's your responsibility not mine" Fine I said and went to the other end. I started placing the stantions and eyed the other guy sitting on the guard rail watching me. I was so disgusted that I didn't say anything. I got to sixty-eight of the seventy stantions when the manager came out he looked at the other guy and said " good job, it was so nice for you to go out of your way to help her." The guy took the accolades smirked at me and walked away. I got back to the office and was drenched in sweat and felt so bad I had to request to go home early. I was told I should go to health services for a fit for duty evaluation being that I could not even survive a shift without help. The other guy even got a fanatic card for helping fellow employees. I told my manager in my regular work area what had happened and that I would never work at epcot on that shift again. She was quite upset with the other manager and called him told him what a jerk he had been to me and that he should have been a little more considerate being that I was helping them out and didn't even have to come over there in the first place.

I guess the moral of the story is even those that are supposed to be professionals just always are not. But, you have to be able to stand up for yourself or it will have bad effects on you and others. I hope this gives you some comfort and knowing you are not the only one having to deal with inconsiderate jerks.

Mary S.

[Chuck]

yeah, if you're not deeply lined, wrinkled, and grey...aren't using some sort of stabilizing device like a cane or a wheelchair, sporting some sort of obvious prosthetic, or attached to an external oxygen supply, people have a very difficult time acknowledging a disability.

OTOH...the band needs a marching bari player. what are they supposed to do?
and I can really sympathize with this one. I have a degree in music performance...saxophone was my major, and really, the bari was my specialty. But regardless of our particular disability, we've all got limits. You have to be tall to be a basketball player. Or a Bass player. You've got to be strong to carry a Sousaphone...or a bari sax.
I lost my career to HCM, the instant it was diagnosed. I lost my job, right there on the spot. Lost all the time and effort and money I put into gaining the credentials...the time and "gifts" of youth:opportunities for education and vocational training...the time when one is supposed to "find" themselves and their path....~poof~ all gone in an instant. The opportunities I had were all spent on something I couldn't have. couldn't get them back. there I was, as an adult, with responsibilities (rent!!), and no job, no career, no future, and no freedom to explore. took me a long time to find another path. But the path I eventually found was one where HCM is irrelevant.
Maybe thats a silver lining, knowing what you know at your young age. You have an opportunity to pick a path that suits your physique. Cop and Fireman probably shouldn't be on the list...or NBA star. or "Pilot". forget that one, too.

[Lisa Salberg]

Jamie,

I have a few thoughts on this one. First of all Chuck is right - in the big picture this may all be leading you in a new direction that will ultimately be better for you...however right at this moment I would venture to bet you could care less about what happens in 5 years because it hurts NOW.

So how do you deal with the now - - a few suggestions.
1. Discuss with your teacher how much music means to you and how much you wish you could do all that you want and how it hurts to have this ^&)(%$ person rub your nose in the fact that you have a disability.
2. Tell the $%^&* brat that while you may not be able to march at least you play better then he does (OK that was my mean side coming out...but come on this guy is asking for it isnt he?) ;-)


I know that you want to march, but it really is not the safest thing you can do, I am very sorry about that and if there was anything we could do to change it we would. The one thing I think we can all say we are happy about is that we have you and you have a wonderful future ahead of you and while it may not include marching - it will include great things!

Take care,
Lisa

[Burton Borrok]

Hey Jamie,
I know I don’t belong in this section, having passed my teens over fifty years ago, but you really got to me on a number of issues. First, ranting is good for the soul. It helps release all the pent up emotions and gets you back on an even keel. You go rant any time you wish for as long as you wish. Personally I am enjoying all my rants.

Next, as Lisa says, this little (*&^# really deserves to be pulled up short, and I have the perfect solution. I don’t know if you’ve ever seen a Mummers parade with those tiny cars that go scooting all over the place, but if you were to get one of them and set it up to hold the Bari, then drive in the parade and every time loud mouth starts yapping you just run right into him - - Oops, look like I did it again. You can still walk can’t you – or would you rather try the triangle?
Burt

[pblead]

This is really weird. There are at least 3 of us with bari sax experience!:cool:
I went to a very small highschool--44 in the senior class. The school had 7-12 grades and there were 19 in the marching band. My junior year, I was pulled out of French class to be drum major. I had no previous band experience--I sang and played piano and organ. However, I evidently was the only one in the school that could keep time while marching. So for 2 years, I was drum major. The director handed me the bari and said "learn it during marching season." So, until I got to college, I had never marched and played the bari at the same time. Played 3 years in college. We won best band in the 1969 and 1970 Rex parade in New Orleans. However, I either marched and faked it or stood still and played. Haven't touched an instrument since 1970.

[purple_ness1]

so u didnt get to march thats suxes
i know how it feels i mean i 19 and half the time i feel liek people around me treat me like im 90 its so unfair and its worst when you know there right and you cant do anythink about it

hope things go well for you ,as they say for every window that closer thers another door that opens

take care
*margi*

[PureTcrazy]

I can only imagine how you feel. I too am a sax player. Tenor is my personal fave, but I also played and marched with a bari 2 years. My band director always said he knew when it was time to take a break because my face would turn beat red, I didn't even have a clue that I had a problem 30 years ago. I taught at our local high school for 10 years and was actually the band "master" (I love that) for 2 years on top of being special ed teacher when our band man quit. It's amazing how it comes back to you. I still love to make music! I used to tell my kids when we were having marching practice "I'm fat, forty and I smoke, if I can do it so can yall!" It almost killed me.

I know we get attached to our instruments, but have you thought about changing to an alto or soprano? Did your doctor say "no marching" or "no marching with that big huge bari" ? Maybe your director might consider letting you be part of the drum pit, if yall have one? Talk to your director and let them know how you feel. Many music people are a tad eccentric about their musical groups, let him/her know that you feel hurt because of how much you love music and hate losing the opportunity to be a part of the marching group.

Maybe you can concentrate on concert performances, jazz band, solo and ensemble??? Please try to focus on the joy of playing! I know that when I am stressed, playing can take me somewhere else!

[CardioClay]

I started with alto. I wanted to try something different. So I got to play the bari. I got soo attached to it I felt like I couldn't let go. I was with the pit when playing.

I play alto sax for the whole year currently...I'm in concert band and I play every single day. I'm getting sick of my alto (which is really weird), and I want to go back to bari. And it doesn't help that my band director said that the person I hate gets to play it.

[ecdalton]

Jamie,
I am sorry that you have to deal with a mean kid. I know people say that kids can be cruel. I am a teacher and I know how cruel they can be to others. On the other hand, kids can be wonderfully kind to one another. Try to surround yourself with people that understand HCM and the devastating affect it can have on loved ones, friends, and students.

My son's class watched him have a cardiac arrest. They are only 2nd graders but they understand the severity of the disease. Tough lesson in life for them. Maybe none of the students in his class will be a meanie like the guy in your class. I am a true believer in "what comes around goes around." That bullies day will come when he realizes that life can be tough all over. I hope you are there to see it and are kind to him and help him to realize his faults.

I am glad you are on this board with us all. I know I will depend on young adults like you to help me with my son. Thank you for being such a strong person.

[Chuck]

ya know, I think your best revenge is to "become awesome" on that alto. If that isn't already the case, practice practice practice. Let there be no question who the better player is. you'll earn the respect of your peers, but more importantly, the respect of yourself.
this may already be the case, anyway. Its not at all uncommon for band directors to bury weaker players "down low", where they don't stand out as much...keep the stronger players in the mid and high ranges, which are typically much more difficult technically to play.

;)