• bridget snell

We shall call it 'bethink and drink'

Updated: Apr 27

Day +596


I am stuck on the memory issues this week. I don't know why. Or I don't remember what triggered it. Maybe it's because it's been more than a year and a half since we ablated my immune system and rebuilt it and I was hoping for better cognitive repair. Maybe it's because my kids keep asking me if I remember pretty profound moments. Or maybe it's because I read back to the day I came home from treatment and I was all excited about having a clear head and I don't even remember coming home any more.


Or maybe it's just age? I mean, I'm not old. But I was diagnosed I was in my early 40's and had 2 preschoolers-- It's really hard to separate what was adapting to the disease and what was adapting to all of that other stuff. Either way, forgetting is very tiring.


Anyone who tells you they remember everything about the early years--juggling the kids, work, home, marriage--is telling half truths. Not lies. They just sincerely think they remember everything, but we just forgot about the chaos.


The imbroglio. The Charlie Foxtrot. The banagarang, if you will.


We remember getting our kids off the bus, but we find out we forgot to put them in underwear that day. We remember going to grab the mail, but why are we holding a container of hummus and a hoodie? We just don't remember everything about those years. It's just the way it is with the beautiful chaos. Frankly, not remembering is how we get through it so joyfully. Our brains are like those filters on Amazon-- remember only baby fat, no brown colors, smiles only, and only playdates that got reviews with 3 or more stars. Hit the "order that again" button and have another.


But some of the memories I can't keep are because of MS alone. I can't blame the kids. Some days I feel I'm in a perpetual black-out without a funny party story to tell. It's unfair because I'm robbed of the art of reminiscing. It's all very vague. I'm that girl from not one particular place with a disease with not one particular symptom that no one really knows specifics about and who chose a treatment for this disease with generally no support from the general or specialized medical community.


A snowflake disease with no known cause or cure (I also am going to stop referring to it as a snowflake disease because, while I mean to say that no two MS-ers are alike in their symptoms, some people--ahem...Chuck Palahniuk--gave this fun word a new meaning). But we have Selma Blair. And Jack Osborne. And Richard Cohen. So there’s some glam and a little bit of sexy accent and a lot of worldly wisdom in my little world. There's that.


Anyway, let me go back quickly so I can remember my point, because I just got lost in all the tangents. Speaking of which, did I mention that you can’t trust my memory? Oh yes, we were talking about losing memories, conversations, common core math. 


I need to turn this around, because I used "remember" 14 times so far (and there's the math portion of the blog) and this post is feeling heavy. Honestly, I don't know why I worry so much about this. The solution is to just keep my camera within arm's reach and log everything into the cloud. This holiday, I will create an album of triggers that will work around the damage to my memory.


Also for the holidays, I don't want any more sympathetic looks. As soon as I hear your voice turn singsong and your eyes show me sadness, I'll poo poo your sympathy, sit down at your table and demand red wine. But also maybe a glass of rose. It depends on the light outside. Maybe let's make it a drinking game (sorry, mom. I don't actually know what a drinking game is).


What the hell were we talking about again?

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.