Sharing My Truth

Jacqueline originally shared her public speaking experience at a noncompetitive StorySlam with the theme ‘Misunderstood’ in a fb group, and very graciously accepted my invitation to share her story here with you.

 

Guest Post by Jacqueline Rice

Photo of me sharing my truth @ Ex Fabula (from stories), the MKE storytelling organization.   Photo from Ex Fabula

 

Here’s the excerpt from the blog entry from their website:

Invisible Stories

“Not all stories have a resolve, but instead bring a call to action. Like Teller Jacqueline, who shared her invisible disability with the crowd. Due to carbon monoxide poisoning Jacqueline was forced to alter her lifestyle in dramatic ways. Her exposure to carbon monoxide caused her to be intolerant to chemicals such as perfumes and sprays. Because of this, Jacqueline can’t be in many public spaces. Thank you, Jacqueline, for using your voice and story to advocate for many others with invisible disabilities.”

How it felt for me at the mic in front of 200+ people:

Having 3 women in the front row nodding their heads throughout most of my 5-minute talk made me feel heard and accepted.

I generally speak extemporaneously and this was no exception.

Things I know I mentioned:

How I got MCS, the course and recent worsening of my condition and the fact that I’m angry lately because I’ve been dealing with MCS for 15 years (on Oct 25) and change is so slow and all the while my world continues to shrink.

I said that I represented millions of others, some who wouldn’t be able to be in a room like this, a drinking establishment  due to the severity of their symptoms.

Though my friends & family have been great, I talked about how little support I’d received from the outside world and gave examples of being pooh-poohed and marginalized and ignored.

I mentioned a local hospital and food co-op as places that I thought would be willing to consider accommodation or even help create awareness of MCS but had refused.

I told the crowd that I knew that some of them are in love with their fragrances and dryer sheets but there’s a price to pay for that love affair.

My voice got loud saying something like, “You can hide your head in the sand as long as you want but those products are toxic. And I’ve got the literature to prove it!”

Afterwards 6-8 people stopped me to say, ‘thank you,’ and that they had reactions to hairspray, perfumes, etc. Others said, “Good job.”

No doubt some were left with food for thought. I can’t ever know how much of an impact I made but like to think that those who were open to what I said will think twice before spritzing or smelling or pouring toxicants!  And I felt honored to be able to create awareness on behalf of all those with invisible disabilities/illnesses who cannot.

#invisibledisabilitiesweek

I was glad to see that I was smiling during at least part of my story. 😊

 

Thank you Jacqueline! I hope your story inspires others to share theirs too!

6 responses to “Sharing My Truth

  1. btown5136@aol.com

    Thank you for sharing this with me.  And thank you to Jacqueline Rice for getting her, and ‘our’, message out there! Donna   

  2. Thank you Jacqueline. Knowing I’m not alone in being shrugged off and “pooh-poohed” by the outside world was encouraging and comforting. Thumbs up to you coming forward about it in your speech.

  3. Thank you Jacqueline.

  4. Thank-you. I’ve shared the link to my story before but will again in case any of it can help anyone new.

    • Hi Lisa.
      Thanks for your comment.
      I removed the link as it involves some specific health and medical advice for your fibromialgia, and because our medical situations are so variable and can be unique, I won’t share them here.
      Medical recommendations require a whole different area of expertise to be able to discuss contexts and cautions.
      It’s better to discuss that in a larger group, with people who have expertise and have done extensive research, and who have the energy to ask and answer questions relative to context. Unfortunately I don’t have that ability here. Hope you understand.

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