1 Hour
My intention with these posts is to write the blog I would have wanted to read when I got my diagnosis. That’s a tough target to hit. I still don’t want to read any blogs about MS. Not even this one.
Writing this has been hugely cathartic to me, and I plan to continue. I’ve connected with some inspiring folks with MS. The writing has helped me process quite a bit emotionally. I’ve received quite the outpouring of love and support. What is interesting is that the majority of the feedback is from folks adjacent to MS, but not diagnosed with it. If it helps other people understand what this is like, that’s awesome, and I’m glad to do it.
But. I’d really like to reach people with MS.
My ultimate goal is to recruit others with MS into studies that I think are effective. There are strength in numbers … our best shot at solving this disease is with more peoples’ help.
In fact if there’s only one thing you ever take away from my blog, I need it to be this. This is my thesis statement:
It’s no coincidence that this is one of the unsolved diseases of the 21st century. The system we have today cannot and will not track the volume and quality of data needed to figure this out.
I cannot stress how true this is, and I’m still trying to figure out how to communicate how much I believe this without scaring people. I get very worked up about this. And my work to fight back will be guided by this statement.
Over the last few months I’ve tried my hand at promoting on twitter. I’ll be
honest … I hate it. I don’t like what social media does to my brain. I don’t like the self promotion.
These days I look at the MS stuff as a weirdo hobby that I tinker with. I read
a lot of articles, and I figure out things that I think would be helpful to try.
Each time I think I’ve found the last breakthrough, I seem to find another.
Which is amazing. I am happy to share what things have helped me … but broadly this feels like advice, and as someone with MS I’m rarely interested in hearing that. I’m happy to share the articles I run across on twitter, but beyond that … it just seems … empty.
As a result of the blog, I was introduced to an avid cycler with MS. He demurred at his cycling accomplishments and promised that his highest achievement wasn’t the number of centuries (100 mile sessions) he does a week, but ‘not thinking about MS for 24 hours’.
Damn. That is quite a feat.
My personal best is probably right around 1 hour. Twenty four seems quite
a distant goal.
And that’s the rub.
I don’t need another reason to think about MS during the day. It enters my mind quite often enough.
So why would I need to follow anyone on twitter that was only going to talk about MS? It’s demoralizing!
I’m not a big fan of social marketing / branding in general. But when applied to a chronic illness … well it seems especially counterproductive.
I can see where they’re coming from. The intentions are good. They want to help. They want to educate. And hey … I learned some great things following some of the ‘MS brands’ on twitter. But a lot of the random factoids are regurgitated. And I just don’t need to see it that often. It feeds my anxiety. No thanks.
I don’t want to denigrate the work that those foundations are doing. If it’s helping even a few people, that’s great, and it’s 100% worth it for
them to continue to reach those people. I’m just not one of them.
That said, over the last few years I’ve become a policy nerd about healthcare, and enjoy consuming everything there is to know about new studies or efforts. Just as you have to stay educated and forceful to navigate the healthcare system for yourself (or loved one), staying informed about the broader technology and movements is very important.
For that, I cannot recommend any single source higher than Joyce Lee, MD, MPH, Physician, Designer, Badass aka ‘Doctor as Designer’]
So what options are left for me to share?
I will get around to sharing some ‘dance moves’ and what has worked for me, but broadly I don’t really want to give advice.
I recently heard a quote that has been really sticking with me from Maya Angelou —
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
My new take is laughter. Laughter is healing. For me. Hopefully for others.
And these jokes aren’t going to make sense unless you have MS. Well you might ‘get them’ but you won’t giggle.
I ran across a list of 50 things you don’t say to someone with MS the other day. It had me in stitches. Which I don’t think was the point.
But. That brightened my day.
And I was introduced to the wonderful work of Mari Andrew. Her work is amazing. She’s a talented illustrator who also wrestles with Guillain-Barré Syndrome.
So. I’m trying my hand. I’m no professional, but so far I am having fun
doodling. Here’s hoping you’ll like my comics. I know they make me giggle.
And hey, if you’re reading this and you have MS, thanks for your emotional
bandwidth, and come back anytime. But if you just want the comics … follow me on Instagram @dancewithms
And here’s hoping you beat my personal best of 1 hour
