ONCE UPON A GENE - EPISODE 032

Beyond Quarantine: Acceptance, Empathy and a Better Normal

Dan DeFabio, Co-Founder of Disorder: The Rare Disease Film Festival is joining me again. He recently wrote a blog post about the connection the masses now have to the rare disease community surrounding the quarantine. A lot of families have dealt with these aspects of sheltering in and it hasn't been as unfamiliar as it's been for others. In this episode, I'm chatting with Dan about how the Covid-19 quarantine hasn't felt that different for families affected by this on a day-in and day-out basis. The isolation is familiar and real. Quarantining isn't shocking and isn’t unrelatable.

EPISODE HIGHLIGHTS

You wrote a blog post that really resonated with me and I'd like to talk about that. What sparked that idea?

In the early days of the shutdown, a friend posted how she was struggling and didn't know if she could get through the day and the next day. I started thinking if something in the rare disease community had prepared me for this and I realized this was new territory for everybody, but it's a little less new for anyone who has faced fatal illness, chronic illness or rare disease. Rare disease families have in some way adjusted their mental space to this reality in advance.

Rose Reif said in a recent episode that the way to get through this is to lower the bar. I think it's great that you've become a lifeline to those who haven't been exposed to so much uncertainty. The way you've done this in the blog is a beautiful transformation.

What has changed with everyone in quarantine that you hope stays around when things go back to normal?

I feel like people have been forced to open up lately, that they're more vulnerable and I've seen empathy and understanding happening. 

What further insight can you leave us with?

Try to be okay with this. As it feels the worst, it won't last long. There are waves of bad times and not-so-bad times. Realize what you can let go of and be okay with it. 

LINKS AND RESOURCES MENTIONED

We Are All Rare Disease Families Now https://www.rarediseasefilmfestival.com/blog/2020/4/4/were-all-rare-disease-families-now

How Parenting a Dying Child Changed All My Expectations https://themighty.com/2015/01/how-parenting-a-dying-child-changed-all-my-expectations/

EPISODE 027 - Therapy Check-in with Rose Reif https://effieparks.com/podcast/008-tanjs-akayy-jr78y-ja2e8-zanza-njkxy-83esr-z2wkz-kx2a4-3zgjf-9n7e6-f4dl9-34pey-khhl4-plbpy-y5jw6-w4tay-9d7t9

Dan DeFabio Facebookhttps://www.facebook.com/daniel.defabio.3

The Home Office https://www.facebook.com/daniel.defabio.3/videos/10159534528084606/

Your Only is My Everything - A Short Film about EDS Warriors

https://www.youtube.com/watch?v=FkBD_FeAKhQ&fbclid=IwAR3fS__gRC2fgA_zWd2O-bxmzCXPs-GEY9VnJIQRciTXzO1L8khlGhYBR7E

Disorder: The Rare Disease Film Festival

https://www.rarediseasefilmfestival.com/

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