Knowing My MonSter

Over the decades with this MonSter I have learned how to keep it at bay for the most part. I go completely blind and lose the use of my body if I get too warm, cold, stressed, or have any sort of bug/cold, so I am always prepared for the elements with carrying an insulated cooler bag full of cooling products ie a vest, headbands, wristbands, a misting fan, cold packs, frozen bottles of water that I will eventually drink throughout my day to keep my core temperature at a safe level etc. I make sure my family or friends I'm going to be spending time with have at least one room of their home with air conditioning on high and/or a pool that I can cool down in if my bevy of cooling products just aren't enough or I am not able to safely stay for more than a few minutes.

Learning to accept it all has been key

In the cooler months, I will wear many layers and carry hot hands in extreme cold, but thankfully the cold only puts me into slow motion rather than shut me down entirely, so it's not as dangerous for me and much more easily dealt with. Learning to accept any and all help offered is a huge help with this disease. I kept putting off applying for my handicapped placard as I kept saying oh, I'm too young, or not as bad as others till I was walking from my air-conditioned car into the grocery store and couldn't make it safely to the AC of the store where traffic had to stop for me "unplugged" while one of the baggers helped me safely inside where I became plugged back in and seemingly fine. My Dr sent in the forms the next day and I had my placard in less than a week in my 20's.

Assistive devices have been a huge help too

I also own almost every type of walking aid out there as at some point over the decades. I've required them all, and I am not too shy to use them, my rollator is one of my personal favorites as I know I always have a seat lol. Most importantly I have done everything I wanted to in spite of this disease no matter how much work it took for me to do so including relearning how to walk, talk and everything else numerous times since the 90's to where you wouldn't know I have anything wrong with me at all and even pushing myself to be able to perform in musical theater once again after still trying to get my range of motion and vocal abilities back to what I consider performance quality. It took a lot more work in my 40's, I'll tell you that much lol!

It's all about adapting

In my most recent production I wired a costume that I could wear my cooling vest under it and wore a cooling scarf wrapped in a sheer blue wrap with blue sequence around my neck to remain cool enough while dancing, singing and performing in the show. Luckily I worked with this disease for years so I have a huge resume and have worked with many directors and production companies since I was a kid that they are happy to accommodate my needs to have me as part of their show as even though I may look like I'm ready to die off stage, they know I will only bring a fabulous performance to the stage. Half of those in attendance were there to see how I went from a lump in my wheelchair to executing difficult choreography once again and to be honest up until a few days before we opened I wasn't sure myself lol Bottom line is even with this stupid MonSter we can still find ways to do what we love.