I’m not sure if he remembers this interaction, but the first time I met Sasan, I was meeting up with Christina at Jaleo in DC. It was our first IRL meeting after a long Twitter friendship. All those times I say, “I’ve never intentionally met up with someone from Twitter and walked away disappointed,” I most definitely mean this friendship and meeting. Anyway, he had family in town so he briefly introduced himself then left while Christina and I commenced with sangria consumption. A bit later, my Faceblindness reared its clueless head when he walked up and I gave him a blank look. He said, “I’m the husband.” LOL I think about that little phrase all the time! We had an opportunity to spend a little time together when I was in DC last September (Faceblindness-free hooray!).
To get to the point, Sasan is dealing with a chronic illness brought on by mold poisoning. Mold poisoning is a poorly understood condition and the extent to which this devoted couple has had to upend their lives in order to try to improve his health is daunting. It’s most accurate to hear Christina’s version. Here’s an excerpt:
There’s a lot about mold exposure and environmental illness that seemingly makes no sense. There are a lot of unknowns and even more “unseens” that make it a mystery, not only to the doctors and providers who are treating it, but to the person who is suffering from it. I have learned a lot about all the things you can’t see simply by listening to and learning from my superhero husband.
What you can’t see is the constant pain he is in. He looks like the picture of health, but inside he’s hurting. He can’t buy warm clothes because many fabrics are also contaminated. So much of what is in stores has been imported, often by boat (a prime breeding ground for mold), and the fabrics irritate him. He can’t find a warm coat right now — so we are not looking forward to the colder days that are invevitably coming. While he is smiling on the outside, my warrior husband is suffering on the inside. But he’ll never let you see it.
What you can’t see is contaminated environments. Despite being a new building, recently cleaned, or looking nice, some things aren’t what they seem. There have been countless times that we’ve walked into a restaurant, store, or other building only to learn seconds later (because that’s how long it takes to react) that something just isn’t right. New buildings (or recently renovated ones) frequently have residual construction dust that can exacerbate his symptoms. We often play “Goldilocks” in a restaurant to find a seat that’s just right (not too near the outdoors, or near dusty plants, or near exposed brick, or, or, or…).This level of sensitivity to contamination is what has prevented him from finding a place to live, and why he’s living in a hotel room. It’s an invisible prison.
What you can’t see is the incredible strength. For more than four years, this has been our reality. And for four years, my husband has kept hurting, kept going, kept fighting. Every day is like a chess match, anticipating what new challenge this disease is going to throw at us, what move we will have to make next to think ahead. And despite every setback, every devastating pivot, my husband has been nothing short of amazing. Check and mate, we will beat this thing because of his incredible strength.
I value Christina’s friendship and the fact she’s one of the few people in the world I can send a crazy “WTH?” or “I’m so exhausted” DM to and get the requisite amount of empathy. She was also the silent co-author of the 12 Most Supercilious Corpspeak Terms.
Here are the ways you can help:
If you are in the DC area, attend the Fight Mold Poisoning Fund Raiser and Silent Auction on December 8 from 5-8 p.m. at Sprig and Sprout. Your $20 donation at the door will go toward the cause. (RSVP even if you’re not attending so you can access the silent auction goodies!).
The silent auction closes at noon on 12/8 and includes:
**a crabcake dinner for 4 OR handmade chocolates and wine, courtesy of Three Courses
**gift certificate to Bubbles Salons
**makeup consulting via The Glossy Goddess
**hand crocheted wool winter set via Angie Dejesus-Webb
**beautiful baked goods from Libellule Baking Company
**private yoga for up to 4 people with yogawithdena
**beautiful Lola James lariat necklace
**vegetarian dinner for two with WINE
**incredible original comic book art
Can’t attend, but want to bid? Email firstname.lastname@example.org with your bid by NOON on 12/8.
Click here for more details regarding the fundraiser event.
Sign up for their YouCaring site for updates and to donate, if you’re so inclined.
Even if you can’t go to the fundraiser, bid on a silent auction item, or donate, there are still two things you can do.
- Educate yourself about Mold Poisoning and other silent chronic illnesses so you can be one of those people who dispels myths instead of perpetuating them
- Share a word of support for Christina and Sasan. Prayers/good intentions are good too. If you make a comment here on my blog, I’ll make sure they see it!