Monthly Archives: November 2020

shi^ty disease/amazing people

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Years ago my mother and my best friend, Enger, planned a surprise party for my birthday. It was just a keg, some balloons and a pile of friends, but it meant the world to me — I was so surprised when I walked into my dirty, second floor apartment at The Woodrow and saw all those smiling faces. It’s been a while since that day (30 years!!), but yesterday I felt that same feeling of overwhelming confusion and love.

I’m not someone who ever had a bookshelf full of awards, but now I have one, and it is proudly sitting on my mantel. 

Folks at ALD Connect asked me earlier in the week if I would help them as they gave an award to my friend Kathleen O’Sullivan-Fortin. I jumped at the chance of applauding her for all of her hard work — she’s a founding member of the the board of directors of ALD Connect and is responsible for bringing me into this community, while showing me tons of love and support. When it was time for the award ceremony, and I went upstairs to sit at the computer and brought Jack with me figuring that Jack could help me cheer for Kathleen. 

The call started. Suddenly Dan danced into the room with balloons and Anna congratulating me via his cell phone. Then Kimmy V walked up the stairs with streamers, holding a trophy.

Holy smokes!

I’ve sat through these award ceremonies and always felt that the awards were so earned. Amazing people who have done so much for the ALD community. Yesterday I was honored along with Nic and Alison Adler, Kathleen O’Sullivan- Fortin and Dr. Keith Van Haren — some of my ALD heroes. To share such an honor with that crew seems a little odd to me. ALD Connect has done far more for me and our family than I would ever be able to do. They have educated us and supported us and given us a community. 

Community.

If you are reading this, I want you to stop and ask yourself if you have a community. If you don’t — find one. 

ALD is the worst thing that has ever happened to our family. It’s a shitty disease that stole so much from Jack and is now effecting my mother. It has me in constant fear of when I will develop symptoms that might make caring for Jack difficult. It’s a disease that has taken the lives of so many sons, nephews, brothers, fathers. I hate every ounce of this disease, but I’m so lucky to have found this community of remarkable people. They hold me up and provide support. They share information and are always there when I need to yell and scream or laugh and cry.

If I could, I would return this beautiful blue trophy — but I can’t, so I will put it on my mantel and remind myself every time I see it that ALD sucks — but the people are amazing — and maybe a little nuts to recognize me;)

ALD — shitty disease/amazing people.

Love, Jess

There is an angel donor that is matching donations this week. I would like to ask you to consider to making a small donation to this incredible organization.

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Two Days

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Loving my new fancy ALD Connect mask!

I rarely check my calendar anymore. What’s the point? Plans aren’t really being made anymore. We live our lives playing everything by ear. All my sentences with friends and family start with — Let’s see or If the weather is good or Hopefully.

But this morning without thinking, I opened up my yellow 2020 monthly calendar and there it was — ALD Connect Patient Learning Academy. I should be packing my bags today to go down to Baltimore for their annual conference. Not this year. This year — like everything else — the conference will be on Zoom.

The 2020 conference was scheduled to be in Baltimore. My mother and I planned to head down early to steal Anna away from her college apartment, spoil her with a nice hotel room and explore Charm City for a day before hunkering down at the conference. Being in Baltimore and getting to see Anna for the weekend was going to be icing on the cake for what is always a wonderful few days with the ALD community. It’s an opportunity to sit with people who understand our disease — families, doctors, nurses, advocates, pharmaceutical companies, biotech firms — all with one mission — to win the war against ALD. It’s always an exhausting few days, but every year I leave counting the days until the next one.

Oh well.

It’s not perfect, but I will log in on Friday, and for two days get to listen to the latest news about ALD treatments and protocols. I will get to hear all the updates about newborn screening and hear stories of people’s struggles and triumphs over our disease. And, I will get to at least catch a glimpse of some of my favorite ALD folks on my computer screen.

Fingers crossed that next year we can reunite in person. Until then, I will enjoy the two days and try to appreciate the fact that I don’t need to take off my sweatpants and can get away with just a little mascara.

Love, Jess