Invited to give a Conference

[Ernie]

Hi,

Someone forgot that I am disabled and invited me to give a 2 hour conference. I accepted. I can teach the topic I want in the manner I want. I am my own boss. It will be on September 17th, from 10:00 to 12:00.

I am so excited because I enjoy teaching.

This is the first time I will be giving a conference and I really want to do it. I will wait until 5 minutes before the conference starts to tell one person what to do in case of emergency.

My topic is: Mind, body and your health.

Should I go with my electric wheelchair or use a regular chair to sit the whole time? I don't want people to perceive me as inadequate or scare the **** out of them because I am in a wheelchair. On the other hand, I don't know if I can manage 2 hours without reclining once in a while.

Do you have any advice or word of wisdom to give me to help me not to collapse in front of the group.

Thanks

Ernie

[steph37822]

ERNIE!!!

That is truly wonderful news! And I think a GREAT IDEA!! I am so happy that you will have the opportunity to do this! That really makes my day to hear this for you!

I often think about giving longer speeches/presentations myself with POTS, and there's no doubt I'd have to sit. So in my situation I think I'd ask for a stool to sit on (or at the very least a chair). On the other hand, do you think you'd want to move around the room at all, perhaps your wheelchair would give you the mobility to do so? (and I know you have the reclining feature) Especially at the end if you want to be near the door or front of room in case people want to talk to you?

As for what people think, HOGWASH! we know you better than that (I think I do?! ), look how much you get out and about with your chair now, you seem to be brave enough to use it when you need to, and to be "proud" about it. You have a very valid reason for using it, and if it helps you get through your presentation than I think, so be it.

Since your topic is mind, body and health would you be talking about your own self and the need for your chair? That way all questions would be answered without any funny looks, unless you keep your own health out of it, which would make sense as well.

You also know by now all the salt, fluid, normal POTS suggestions.

I just REALLY wanted to say CONGRATULATIONS! I am so proud of you that you will take on this task, and cannot wait to hear all about it!!

Take Care friend

-Steph

[Roselover]

Ernie,

There is a woman named Joni Eareckson Tada who is severly disabled by an accident she had as a teenager. She speaks to thousands of people each year and she speaks from her wheelchair. If she needs to clear her throat, her husband walks up on stage and squeezes her stomach so she can cough. I have seen her speak and she as a great inspiration!!!! DON"T be afraid of your wheelchair if you need it. It will only make your message more powerful!!!!

WOW - I am so excited for you!!!!!

~Roselover

[MightyMouse]

Ernie, that's so great! I usually sit while I present, or rest my bottom on a table. As for the wheelchair, I'd have it with you as you're going to be very tired at the end. I'm usually so wiped out that I pray no one stays to chat after class; I just want to get seated in my car and get home to sleep.

GOOD LUCK!! Let us know how it goes.

Nina

[corina]

Ernieeeee!

What I GREAT opportunity!!! Boy, I'm sooo proud of you!

In my case: I would use my wheelchair. That is because I need to have my feet up. Using your wheelchair also might depend on how comfortable you are in/with your wheelchair. If you feel selfassured (not sure if this is the right word) enough, you could use your electric. That's because in that case you don't have to worry about fainting or anything else going wrong so that you can keep your concentration on your conference. At the same time it gives people a look at your life and how you can HAVE a life with a disability.

So using a wheelchair depends on how you FEEL about it (does this fit into your topic?).

You really made progress Ernie, I wish I could fly over and come listen to you!!!

Love,

Corina

[morgan617]

Congrats Ernie! Use the chair, it's your safest bet and actually I think people listen better when they see the person talking must know what they are talking about from personal experience. If not, then at least have it handy. I am very proud of you! morgan

[Ernie]

Thanks Steph, Nina, Corina and Morgan.

You convinced me to take my wheelchair. I better be safe than sorry. You also made me realise that I could encourage them in another way by using my wheelchair.

I called my sister who is a massage therapist to give her the good news and she offered to accompany me. So I will use my manual wheelchair (my sister will push me) and I won't have to tell anyone there that I have a syncope problem because my sister will take care of me in case of emergency.

I will also ask my sister to help me with the workshop, ie distributing documents, etc..

I will need to be extra careful the days preceeding the conference to save my energy.

I will keep you posted.

Ernie

[DancingLight]

Yippee Ernie!

Well, you made your decision before I got to post...but, what I was going to say was that I would vote for you to use your wheelchair. But, you have a GREAT plan in place using your manual wheelchair and having your sister to help.

Although people may be uncomfortable at first with the wheelchair, you can quickly put them at ease with a little humor or whatever...and I agree with morgan and the others that it is a wonderful opportunity to educate others on LIVING with this illness. Your life has changed dramatically b/c of this illness...and also, like steph said, b/c of the wheelchair. For you, the wheelchair has given you so much back...

Anyway, I totally vote for the wheelchair. I do not think that you should try to 'hide' or 'be invisible' by sitting in a 'regular chair' b/c then we just lose an opportunity to educate people. Does that make sense. Although it is easier to try to 'fit in'...believe me, I have a lot to learn from you and Corina and Sunfish and other wheelchair users. I have been having the 'wheelchair discussion' a lot lately with my mom...

Will you please let us know how the talk goes when you are up to it and have recuperated afterwards?????? I will really be wanting to hear! Thank you!

Hugs to you Ernie!

Emily

P.S. You seem to be a fairly private person, but I was wondering if you would be willing to send a picture of you in your wheelchair to Faces of DINET sometime? Hearing about your adventures in your wheelchair brings me such smiles and also such joy and also reminds me of your incredible spirit and courage...I would love to see a picture of you riding in your 'machine'!

[Guest Julia59]

Congratulations Ernie!

I won't say to much right now because i'm so sore from the new implant.

I just wanted to chime in and tell you how proud of you I am for your perseverance. You have succceed in so much dispite your challanges.

You be be an inspiration for the group you give the presentation to.

I'm glad your going with the wheel chair as this would make things much easier for you.

Julie :0)

[Eillyre]

I'm so happy you have this opportunity, Ernie!!!

I'm glad you decided to take the wheelchair and that your sister is able to accompany you. It sounds like a very good amount of time to really be able to help others understand how and why people with chronic illnesses live the way do!

If you have a spare moment, would you mind sharing some more particulars on your presentation: who the audience is made up of, what are the main points of your presentation, what are you going to try to send them away with, etc.? I've been thinking of what I would present about living with dysautonomia if asked, so I'd love to see what you might have thought of that I might have missed. On second thoughts, you just might become our resident lecturer!

Once again, I'm thrilled that you have this chance! Keep us posted on how things go!

Angela