• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gemma Climbs Her Mountain - please donate or share & help us go viral!

Messages
23
Hi everyone,

We created this original play 2 years ago after interviewing over 200 patients with ME. Their testimony is interweaved with my story of being an opera singer before I was struck down with this illness. We have a date to perform again at Oldham Library in June....

https://www.eventbrite.com/e/livethelibrary-gemma-climbs-her-mountain-tickets-24290084296

but we also want to take it on tour so that we can raise awareness of what it is really like to live with this disease and that takes money! Please, please help by either donating or sharing this link widely

https://www.gofundme.com/gemmachristie
 

Asa

Senior Member
Messages
179
I understand those diagnosed with ME are a heterogeneous population. And I understand that a general audience would not understand the significance of diagnostic definitions/criteria, but does the play mention the criteria by which Christie's character is diagnosed with ME?

Also and so I understand, it's Christie who's playing herself? And so I'm wondering about the level of severity of Christie's (actor/character) ME. Has it changed, improved over time?

This may be my own ignorance, but I don't really think of someone with ME as being able to perform in ongoing productions -- but again, I understand that those diagnosed with ME are a heterogeneous population, and so I'm trying to understand others' experiences. It's not my intention to be/sound callous.

It could be that many on PR are more severe than average, and PR then becomes a social sphere they might not otherwise have access to -- but maybe PR doesn't represent those who are more high-functioning? Again, just trying to understand how my impressions may be skewed and/or limited. (Thank you.)
 
Messages
23
Hi Asa,

Thanks for your questions and interest. Let me explain.

The show has been created around my limitations with a crew that understand the challenges I face and in fact out first programme came with the caveat that I might not be able to perform! Of course it is a huge push for me to do it and we never will perform 2 shows on subsequent nights as I need time to recover. Rehearsals are built around the energy I have with time given for plenty of rests. We work in short, sharp bursts and much of the show is interspersed with other things such as our film footage with Professor Carding, Dr Nigel Speight, Countess of Mar and Dr Charles Shepherd and audio/visual recordings from other sufferers.

The show is unique in the performing world as normally of course people wouldn't work around these limitations and that's why I never performed again for years after becoming ill, so I'm really lucky to have these people supporting me.

As for my own condition it has improved over the years as long as I follow a strict avoidance diet, (inc avoiding mold) and manage my energy levels but in the beginning I spent many years with days when I couldn't even leave the house so yes I do have ME along with other chronic conditions. But to get caught up in how severe my ME is now is to miss the point. The point is that this is a piece about bringing home to people the loss, the isolation, that chronic illness makes you face and my aim all along has been to remove some of the stigma that has become associated with this disease and help people see the sheer level of human suffering the illness inflicts. One ME sufferer who came to see the show said that 'everything I want to say about ME is in that play, I wish I could get all my family to watch it!'

So I'm putting myself out there to try and make something positive out of an illness that took so much from my life, but that doesn't mean I don't have the illness or that doing the show doesn't bring considerable personal challenges, it does. That's why it's called 'Gemma Climbs Her Mountain' because that's what performing now feels like and I know that everyone with ME understands that; we're all climbing mountains every day.
 

Asa

Senior Member
Messages
179
"We work in short, sharp bursts and much of the show is interspersed with other things such as our film footage..."

singinggem, thank you for your thoughtful response. The above use of time is clever and of course useful. Thank you for sharing, and best wishes in meeting your goals.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sounds interesting singinggem, best luck with your show.

Asa, there is many people out there with ME who are still working (only 25% of us are homebound or bedbound), one thing they all have in common is work is always a struggle for us.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
http://www.meassociation.org.uk/201...city-salford-7-30pm-on-wednesday-december-10/

A really great idea for a play, and fantastic to see ME being represented in the Arts and seeing a way for artists with ME to still take part. Is there any way you will be able to play it in other areas? My local arts cinema/theatre in remote West Wales would make a great venue - wish I could see it!

How have performances gone so far? Good luck with the upcoming dates.
 
Messages
23
Thanks for the good luck wishes, much appreciated!

We are hoping, if funds allow, to be able to stream the performance so that those who are bed bound or unable to access the theatre are still able to see it.
It's a bit frustrating at the moment because the people who have expressed an interest in supporting us further ,such as the British Council , want to first see a full performance before they commit any further but we can't do a full performance without the funds to do it so it's a bit of a catch 22!
We've only had one full performance so far (have performed extracts elsewhere) but that went extremely well and the general response was that it was a very powerful piece that should be more widely seen - so we've got to keep pushing on, please support!! Even just sharing the link is a big help as it gets the word out, thanks!