By David Tuller, DrPH
Beth Mazur was a long-time ME advocate and a co-founder of #MEAction. ME-world was shocked to learn on Friday–two days ago–that she was gone, at the unconscionably young age of 47. At the time, she was visiting New Mexico and Julie Rehmeyer, another patient and advocate. Words often fail at times like this. But Julie has written a a lovely and heartbreaking account of her time with Beth, on both X (the awful platform formerly known as Twitter) and Facebook. With Julie’s permission, I have reposted the X thread below. (Check the X or Facebook versions for some great photos.)
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Julie’s X thread about Beth Mazur
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.
Fuck ME.
Please don’t waste any energy on the what-ifs and I-should-haves that our brains so readily offer us. Put the fault where it lies: on this damnable disease. And let her memory be a blessing that fuels us all to support one another and find a cure.
Also, please, please, if Beth’s death has added to your already huge load and you’re feeling vulnerable, reach out for support. Beth would work to make things better for you in any way she could, and although she’s gone, many wonderful people in this community are here to help.
I’d like to share details of our time together so you know why I’m so confident that her last days were so wonderfully love-filled. Though we’ve known each other for 12 years, this was the first time she’d been to my home in Santa Fe, and she connected with this land too.
There were so many special moments. Mostly we were at my house, of course, but we were able to go to the plaza to see the Christmas lights and eat dinner out at the heated outdoor patio at the Plaza Cafe.
On the plaza, we encountered a rabbi lighting a giant menorah for Hanukkah. He gave Beth a small tin menorah and a golden dollar coin. Beth tried to unwrap it for the chocolate inside, only to discover it was a *real* coin, not a chocolate one!
Later, we gathered with Rivka Solomon, another powerhouse ME advocate and all-around amazing person, to celebrate Hanukkah and make latkes over Zoom.
Beth loves animals, and she quickly bonded with Lao, our cat, and Roo, our dog. Lao is a friendly cat, but he rarely sits on the laps of visitors. The first time he settled in her lap, her jaw dropped and her eyes lit up with joy. I wish I had a pic, but I’ll hold it in my heart.
Roo loved her too. She showered Beth with kisses, asked for belly rubs, snuggled with her on the couch.
I gave Beth head-and-neck massages. She hurt in the same places I do, so my fingers were guided missiles. I felt like I was channeling all the massages my husband John has given me, and it was a joy that I am well enough right now to pass that on.
(I’m doing MUCH better these days, thank god. At another time, I’ll post about what’s happened and why I’ve improved. It’s just, you know, I’ve been afraid to jinx it!)
We of course talked about health, and we came up with some possible treatment ideas that seemed promising to her. I suggested that venous outflow issues might be contributing to her ME, and she read about it and agreed that it fit her symptoms. She seemed excited to pursue it.
She talked about what she’s been up to lately, and I was amazed at the endless stream of calls she had with various people she was supporting. I’m just now starting to see the enormous impact she had, on so many levels.
She supported individual patients, often in desperate situations, spending hours and hours counseling them, finding them resources, solving practical problems. She helped create large-scale visions for advocacy. She used her technical skills to create digital infrastructure.
Her understanding of the science was unsurpassed. She was constantly looking for new, promising treatments, and then she tried them herself — hundreds of them — and counseled others interested in them. She introduced Dr. David Kaufman to the idea of MCAS!
Almost everything she did was behind the scenes, but everyone in the ME world has been profoundly touched by her work. She was an “elixir” for countless advocates, helping to brainstorm, think through problems, come up with visions for the future, and find energy to keep going.
She never tooted her own horn — quite the opposite. It’s becoming clear that no one understood the full scope of her impact while she was alive. We all just had partial glimpses.
Now I’m going to shift a bit, to talk about her challenges and what led her to end her life. I hope this will be more soothing than triggering, but you should assess whether this is the right moment for you to read about difficulties.
The most amazing thing is that she did all this incredible work through profound cognitive dysfunction. It wasn’t just her perception: Neurocognitive testing showed massive deficits. She constantly felt concussed, like she had to push through a wall to speak and listen and think.
We all saw the brilliance she still had, but it was a fraction of what it once was, and she deeply mourned that. Her cognitive dysfunction fed, or maybe caused, depression and anxiety. She tried every possible treatment for that too.
The combination of cognitive dysfunction and depression caused her constant pain, depriving her of satisfaction for much of what she did and leaving her feeling like she didn’t fully exist. Her head never felt right for 14 years.
She talked to me about that over the years, and four years ago, she was so worn out by it all that she was ready to end her life. She didn’t because of the pain she knew it would cause others. And she continued full-bore despite it all, trying treatments and working for change.
What a gift she gave us by persisting for that time! So many people and projects she supported, and just so much of herself that she gave us all. Every moment she was here, functional or not, was a gift. We all wish it had been more, but are so grateful for what we got.
Please remember that if you are struggling: Every moment you are here is a gift. If you can stay one more day, even one more hour, please do.
A blessing of my time with Beth at the end was that she opened up more than usual, the walls she kept up softened by the love we shared. She was stressed about various things, and the depression was there, but ME was the root of it all. And no conversation could change that.
The night before Beth died, she lay on the couch in front of the fire and put her head in my lap, and I stroked her hair. Lao curled up in the perfect cat spot formed by her belly and legs, with a heating pad below them. His eyes squeezed tight with pleasure.
We talked about Beth’s stresses. If she knew she’d never get better, she said, she’d end her life — but she didn’t want to cause pain to those she loved. I had no sense that she was planning anything, and when I went to bed, she was calm and relaxed, still cuddling with Lao.
But in the morning, Beth was dead. She’d clearly carefully planned it over a long time. She left a loving note and sent scheduled texts to many people, reassuring them and giving them love. Ridiculously, she apologized to me for not cleaning the casita, my little guest house.
Her death was especially shocking because she was in the middle of so many projects, working with so many people. As long as she was here, she fought like hell for herself and all of us. Our treatment ideas brought her hope, but not enough to buoy her after hundreds of failures.
Ultimately, Beth felt she had reached the end of what she could carry. But she continued to love this community and carried a deep belief in what we could accomplish together.
I think she chose to die here with me because she knew I could handle the burden, and because the safety and peace and love she found here somehow made it possible, oddly enough. But she was committed to ending her life long before she came.
The last days have of course been extremely hard, and I’m braced for a crash. But I’m OK. Some part of her spirit, I feel, will always be here with me. Her life partner Brian is visiting, and we’ll start creating an outdoor altar on my land for her. I feel steeped in love.
I’m hugely grateful for everything she contributed, but that isn’t why I love her. I love her because she was her, just for her Beth-ness. I love her just as much for the moments she lay in bed, unable to function, as those times she was brilliantly leading the fight.
I feel blessed by every moment she fought through the pain to stay, to share with us her kindness, her calm, her wisdom, her vision, her generosity.
