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Hello Colleen (and family!)
You feel so much like family to me because I watch your vlog every night before I fall asleep.
How I found you – I looked up Miranda after seeing her on Comedians in Cars in Oct. 2019 and have been hooked ever since. While waiting for your next Miranda video, I used to watch your vlog in the hopes of getting a glimpse of Miranda. Now I watch all your channels simply because I enjoy them!
The main reasons I’m writing –
- To thank you. A job that involves vlogs, zooms, and youtubin’ can easily get trivialized, but as someone in the comm industry, I know the effort it takes to do what you do. You definitely have a knack so it may come easier to you, but it’s still an incredible feat you (& Kory!) pull off every single day and the world is so much better for it. You move mountains every day AND open yourself to the world (SO HARD!!!), so be sure to give yourself enormous credit for that and take “me time” to avoid the burn out. Your amazing prioritization is what makes it all happen!
- To make up for all the comments I never got to post. I’m unable to leave comments on your posts in a timely fashion because I’m in a crazy fight for life that demands EVERY SECOND OF MY TIME (see next bullet).
- To make you aware of an absurd fight that thousands of Americans are in, some children. (see below)
First, the comments I wasn’t able to post in a timely way
Your boba, your night cookies, etc. (mine is boba and gummy bears) – To bribe myself to stay at the computer to get work done, I nibble. It used to be gummy bears until I had to watch my sugar (I turned 51 a day before Flynn turned 2!) So I turned to boba until I overdosed on it and nearly had to go to the ER. Now my family chops up a ton of veggies at the beginning of the week and makes (or buys) hummus. Together they make a delicious motivation to stay at the computer. Any dip will do! The chopping takes about 7 minutes every Sunday and the veggies last all week. I eat the cukes first. Hummus with extra garlic and lemon with olive oil drizzled on top—YUMS!
Taking credit – Like you, I gloss over the positive stuff I do and focus on the negative. I didn’t realize how bad it was until one day I was playing ping pong with a group of co-workers (the dotcom days!) and realized that my brain was logging only the points I lost and none of the points I won. (!!) If the other
person couldn’t describe the particular way I scored, I literally could not remember scoring! That’s when I really started to watch out for this “blanking out of the positive” and discovered that it was happening often with me. It’s hard to recognize it because our brains are trying to trick us for some reason! If left unchecked, I imagine it could do some real damage.
That bad dream you had – When I was in college, I had such a similar intense nightmare to the one you described. I had drunk many spice coffees (with nutmeg) just before bed (up studying) and later found out nutmeg is a hallucinogen. But still – it was so real, there’s no way it all could’ve been from nutmeg.
So many guys are creepy.. I relate to encountering creepy guys that don’t pick up the “I’M NOT INTO YOU AT ALL” signal. It happens so often. Luckily I was always in safe groups each time it happened. I can easily imagine a scenario where it wouldn’t be safe.
The absurd fight I’m in – ALS (Lou Gehrig’s)
It’s actually my husband’s fight. You can read his story at https://uafuel.files.wordpress.com/2020/06/pats-story.pdf or see a glimpse of our life at https://www.pbs.org/american-portrait/story/9240/patrick-d-redlands-ca-what-gets-me-out-of-bed-in-the-morning-is (this was filmed pre-Sept 2020—he’s not been out of bed since Sept 2020).
The bottom line is that there are several treatments that work on 80% or more of the ALS patients they have been tried on (NurOwn, CuATSM, AMX0035, T-regs). Yet, there is no way for ALS patients to access them—an absurd reality, especially given the extreme cruelty of ALS.
You can help my husband connect with one of these treatments by supporting The Act for ALS.
NurOwn, the most promising, has been stuck in the pipeline since 2016 for no valid reason. Had my husband received NurOwn in 2016, he would likely still be breathing on his own today and probably still be able to move his limbs and facial muscles.
The main organization speaking for ALS patients (and supposedly trying to connect them with treatments) is the ALS Association (ALSA). However, ALSA refused to give a penny to any of these treatments or try to speed them along in any way until strongly criticized, then gave a token small amount to NurOwn. Before this, ALSA in fact tried to sabotage NurOwn. It is hard not to think that ALSA does this to keep patients sick so they can continue to make money off of them. I’m happy to chat with you more about this, but you can also watch videos from ALS News Now/No More Excuses (https://www.youtube.com/c/ALSNewsNow/videos) or a host of other organizations that have cropped up to close down ALSA.
ALS does strike children, but the numbers are skewed towards adults. A terrifying combination is that 1) this disease is horrific–it eats you alive then traps you in a coffin of your own body—and 2) we have no idea what causes it 150 years after it surfaced. Anyone can get it. Your chances of getting it are 2-6 times higher if you’ve served in the military. Non-military incidence is 1 in 5 adults, but because patients die so quickly, prevalence is low, plus people die before it gets reported. So there’s not much awareness of it (ALSA is no help). The disease so spectacularly burns out the family that no one has time to speak up for it or fight battles when they’re fighting the disease. The only fighters are really the family after losing a loved one, but even then the devastation left behind is so brutal the family can’t fight. Not to mention, today’s news is built on “the moment,” and not “moments in the past” (ie, after your loved one dies). The disease is harder than nearly all others because every few weeks there is another huge loss (swallowing or talking or breathing or walking) and you have to figure out how to adjust, and do it in a monolithically slow health care system. When the swallowing goes you have a 24/7 battle against saliva—you must suction every 20 minutes, on average, or your loved one dies. The family doesn’t want to talk about it because it sounds like they’re complaining about caring for their loved one. The patient doesn’t want to talk about it because they are overwhelmed and want to hold on to their normal plus not complain. There’re just so many reasons this disease is hidden while a huge threat.
Anyway, the speed of the COVID vaccine made clear what the ALS community already knew—that our nation could put an end to ALS if it wanted to. And it would want to if it knew the facts about ALS. Since my husband and I are “in the moment,” I try to squeeze out free minutes here and there to help get the word out. Once people know how horrific it is (and that it can hit any loved one at any moment), they might help get these treatments out to the people who need them. The Act for ALS bill will help turn the corner—it has 200+ cosponsors but needs citizen support to get the bill onto the floor. Here’s now people can help: https://iamals.org/action/call-your-representative-about-als-and-als-legislation/ . You have such a kind heart and are so family oriented I thought you might help get the word out.
I hate to end on a negative note too!
But I’ve already crammed a lot into this letter so I’m going to close anyway! 😊 I simply can’t wait for your New Year’s Eve show—counting down the days!
Sending lots of love to your wonderful family & Kory (who is family, I know! 😊) today… well and pretty much every night around 10 pm!
ps I just adore Kory, most recently his tap dancing moment
Please feel free to read all or part of this on the air, just not my phone number or last name.