• bridget snell

If you don't speak Gobblefunk, you won't understand

Day +143


Good news or bad news first? 

Ok, we'll go with that one.


I haven't stopped moving since school and after-school activities started. We've launched into that place where the days are measured by how dark it will be when they wake up and if it's too light to go to bed.


I always loved the first days of school when I was a little. The Trapper Keepers were painstakingly chosen (will the cover be Michael J. Fox? Cyndi Lauper? Unicorns?). The binder filled with college-ruled paper (even though we all needed the wide-ruled to accommodate those loopy q's and the i's dotted with hearts). The pencil case full of no. 2's and a bonus Trolls hair pencil topper.


As a Mom, my favorite parts of back-to-school are the reading lists and the common core math. I'm ignoring your moaning at that last bit. Moving on. 


More than watching my girls spar, twirl, swing, tap and paint, I love watching them read. 

I grew up in the Judy Blume and CS Lewis school of life and fantasy. Margaret taught me that everything changes (Thank God). Peter, Susan, Edmund and Lucy helped me have faith in something bigger than all of us. Back in the days when Pluto was still a planet (before it wasn't and then was again) Meg Murray taught me that you can use love to move through time more easily. Even the big-eared BFG had great lessons--the one that stands out the most of course is that it's fun to whizzpop and we all need to do it a bit more publicly IMHO. It's whoopsy whiffling.


But all my love goes to Milo, his tollbooth and his Watchdog, Tock. Tock reminds us that "once there was no time at all and people found that very inconvenient. They never knew wether they were eating lunch or dinner, and they were always missing trains." But once time was discovered, it was quickly misbegotten and abused, employing Tock to weed out time wasters. 

I have a Watchdog, too. It's MS. MS reminds me all the time of all the time I could lose.

As a Mom, I insist that when my girls are ill, they lie down and rest. Sleep. Heal. That's what you do. As an MSer, I fight the need to lie down when I'm ill. In my [very specific] case, sleeping and rest don't necessarily heal. I'm not losing days to this shitty (sorry, Mom) disease. I don't get time back. MS is my Tock and this bitch reminds me to be most wise with it. 


This is not for everyone. I want to make sure you understand that I don't condone going to work with the flu or heading to the gym with a broken leg. That's not what I mean.

This approach was written and illustrated by me, for me, and was heavily edited. I am aware it's a bit radical. I am also aware that this isn't a doctor-recommended (or husband-approved) approach always. 


I'm especially aware this week because I'm on the downward slope of the rollercoaster (that's the bad news you asked for second). I'm feeling old symptoms and it's been tough to keep my chin up. It's been a hard to power through. Hell, it's been hard to walk. But it's easy to look at my family and remember that HSCT has made sure I get more time to hike, go to karate, have a dance party and read books with them. 


So now I can put a bookmark in it and go to sleep because it's dark outside and the day is over. My family is asleep. I'm not missing out on anything. 

But maybe I'll go kill some time and play with my dog. 

Note: This is my personal story with information about my own experience with HSCT for MS. 

The information on this site is not intended to replace advice from your doctors. I do not give medical advice.