I luckily shared the last couple of weeks of #BethMazur 's life with her. I want you to know: She felt loved when she died. She died because her ME was unbearable. There's nothing more any of us could have done. Effective treatment is the only thing that could have saved her.
#BethMazur is one of the main reasons many of us are in advocacy today. She helped create a more community-focused vision that resonated with us all. She wasn't in it for her name to be known; she was in it for us all to get better & get there by treating each other well.
There are no words and yet a group of us had to come together to find the words to share something we desperately wish were not true. Beth was that person you know who is always just quietly doing what needs to be done, making the connections & never claiming credit. #BethMazur
I’ll always remember #bethmazur this way:
Visiting her and Brian in Hawaii, we drank coconuts under the stars, hiked on beautiful coasts, prayed at a Hindu temple, and snuck into a luau.
She helped w/ my book, coached me on my Harvard apps, & was always ready w/ dating advice
The family of Beth Mazur will be holding a memorial service for Beth on January 13, 2024 in San Francisco with remote attendance options.
Beth touched many lives, and everyone who wants to attend is welcome. Details will be posted once finalized. #BethMazur
A Poem for Beth, by Susanna Kittredge
#bethmazur
You are so sunny, as if
copper rang in your veins
or you had to squeeze past
the tough furnace of the boiler room
to get to sleep.
1/
Grateful for your remembrances, Julie, of #BethMazur ’s life/spirit. And for focusing on absence of effective ME tx as the real perpetrator. Let’s expand Beth’s legacy by intensifying research on causes/mechanisms to uncover tx targets. Someday, perhaps, even paths for prevention?
Every interaction I had with #BethMazur was one filled with kindness & empathy. In my early days of disability justice work she supplied me with a treasure of ME history & resources that helped me in my new advocacy journey with BODY POLITIC. I will be forever grateful to her
It is not lost on me that TWO heroes in the disability community have their memorials today. RIP #BethMazur and Ady Barkan. We MUST find treatments for #MECFS and #ALSAwareness . We can NOT keep losing people. This has to stop.
I didn't have the opportunity to meet #BethMazur but every time we lose #pwME , esp one of our 'ill-ders,' I am struck by how our society weaponizes illness and disability & forces us to individually metabolize the despair, yet does nothing to resource us.
#LongCovid
Absolute favorite writing by Toko-pa Turner
For those who continue to fight while wounded themselves. Eternal gratitude. #MyalgicEncephalomyelitis #Pwme #MECFS #LongCovid #TenYearsMissing #BethMazur #chronicillness #MEAwarenessHour Julie Rehmeyer Terri Wilder It'sME(Jaime)
Every death of a ME sufferer is one too many and is the consequence of decades of neglect, ignorance and failure of a healthcare system that has never taken care of the disease and its comorbidities. #BethMazur 🖤🥀💔
1/3
meaction.net/2023/12/22/sad…
Adding #BethMazur tag as suggested by Jennifer Brea🦒, co-founder of #MEAction Network with Beth, to help the community both come together and to extend to new and growing waves of chronic illness, incl LC. I think Beth would’ve approved.