BONUS VIDEO: ALS Challenge

BONUS VIDEO: ALS Challenge


I was nominated by my friend Rhonda to have
ice water dumped on me, known as the ALS Challenge, so you know what’s coming. While the 30 gallon bucket is being filled
with river and ice, I’m going to let you know what ALS stands for: Amyotrophic Lateral Sclerosis.
A: without; Myo: muscles; Trophic: nourishment. So “without muscle nourishment.” Basically
the cells called neurons that sends messages from your brain to the muscles and back start
to [makes “malfunctioning” noise]. It’s like if I were to chuck my phone into
the river, not only would the phone die, the cells die, but then the messages don’t get
to me. I can’t receive them, I cant send them, and those relationships that I have with all
of you via tweets don’t exist. They start to wear down and weaken. The neurons weaken, but then they are also
unable to send messages to the muscles, so the muscles weaken as well. The muscles used
to pick up buckets of water or tip them over like these guys are now smaller; weaker; sometimes
paralyzed. Like being frozen! See the ice in this big ol’ bucket? It’s meant
to be freezing, but no matter how jammed up my body feels with icy river dumped on it,
it will not be the whole experience of ALS. I’ll dry off, I’ll walk home, I’ll take a
shower, and pee, and have sex. People with ALS won’t – at least not on their terms. With ALS, breathing can be difficult. Any
physical activity can be a strain. Sucking, cupping, licking, bending, grabbing, thrusting!
It is an ALS challenge to control muscles, like the pelvic flooring, vagina, labia, perineum,
anus. That voluntary ability to lift your penis
up and down – tricky! Not to mention the changes to one’s self-image
and sexual expression! A study published in the Journal of Neurology found that people
with ALS experience 43% more sexual problems with the onset of the disease. Their partners
struggled even more, reporting a 55% increase in sexual problems after the onset. I think we all know sexuality is vulnerable.
Our bodies change; our minds – our sexualities – change! Human beings are human beings. We may not all have ALS, but we all have challenges
related to sex. Defining and redefining what intimacy is, setting boundaries and limits,
understanding how to be creative in certain situations, it’s a challenge. We are challenged. [Lindsey screams, then she and bystanders
laugh.] Thanks!

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