A rollercoaster of grief

Welcome to The Tonic, a light-hearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.

I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (known here as The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.

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Grief is visiting this week

Oh, friends. I and many others I know suffered a tremendous and unexpected loss this week.

I met Helen exactly 20 years ago when I joined the agency she helped start back in the mid-70s. In 2004 when we met, she was managing one of the emergency shelters for women and children, and I became her supervisor. I was in my late 20’s; she was in her late 50’s. She taught me the heart and soul of working with survivors of domestic violence. I taught her how to do her stats and reports correctly and turn them in on time. Both of these are gross understatements of what we taught each other. Nonetheless, we treated each other with love, care, and tremendous respect right from the beginning, and we became close friends through the years. We went to concerts together, broke bread countless times, and connected over our reverence for the natural world and our irreverence for the religious one.

Our Helen was so many things: a certifiable badass, defender and advocate of women and all people, actual tree hugger, colossal proponent of peace and love, queen of disrupters and agitators, mother and sister to all who knew her, and one of the people closest to my heart.

Here are two of my favorite pictures of our dear friend.

Needless to say, I am all in my feelings this week and one of the things this recovery journey has taught me is to BE HERE, to really be present for it and take time with it. So, the post I had planned in my head for this week will not come to pass just yet.

I have had several teary moments this week, to be sure, but I also feel blocked in a way. I feel like a great big cry is in me, but something is stopping it from coming through just yet. I am going to trust the process and stay curious and patient.

My 49th birthday was also this week. I was not feeling particularly celebratory, but Baldy and I had reservations for a fancy lunch, and I got up, donned a green dress in honor of my friend (she was a proud Irish lassie and also a great lover of Mother Earth), and made the best of it. I had a great day, and not five minutes went by where I didn’t think of her.

One thing I plan to meditate more on in the days following our community’s loss is the way Helen lived her life, and what lesson there is in it for us.

She did not waste her time worrying about what other people thought of her.

She took the path less traveled as a matter of course.

She loved and laughed and danced and banged on her drums, even up through the last night anyone saw her alive.

She hated to be confined in any way, physically or emotionally.

She disapproved of defining herself or other people by conventional labels.

She showed you all the love in the world, unless you showed her a reason not to. Even then she gave you the benefit of the doubt for a bit.

She was fiercely loyal to her family and to her friends, and to the thousands of victims and survivors of domestic violence and human trafficking she counseled and advocated for in her time on this planet.

Yesterday, I discovered that I still had one of her voicemails from 2021. I must have saved it thinking this day would come. In it, she sings me a few bars of a Neil Young song (one of our mutual loves, and who we saw live together at Madison Square Garden in NYC). She tells me she’s riding her bike all over (she did not drive but rode a bike all the time…many of us who worked with her have at least one memory of her riding upon us on a sidewalk in south Yonkers). She tells me she knows I’m “going to get past this, this, this…stuff, that’s just too weird” (long COVID). She tells me a few times that she loves me.

I played it for Baldy, and we cried together. It is such a gift to be able to hear her voice still. I made sure to email it to myself in case there’s any future fuckery with my phone.

In a DM she sent me in November, she said she keeps up with my work on LC, and then she wrote in all caps, “YOU ARE A TRAIL BLAZER.” I learned from the absolute best.

<deep sigh>…giving the people some links is certainly not a revolution, but it is what I do here. So, in the spirit of community, I’m going to drop a few down below in the After-party, because our sweet lassie loved a good party.

🎶 With your chrome heart shining…in the sun

Long may you run, my beautiful friend 🐒

🥳 The After-party 🥳

Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.

⚕️New Long COVID Definition Proposed by National Academies (free MedPage Today subscription required). I am not quite yet sure how I feel about this new definition. It seems vague enough so that it doesn’t exclude many in our community, but it may be too vague and inclusive.

😷 North Carolina lawmakers approve mask bill that allows health exemption after pushback. I still don’t like that this is essentially a law targeting protestors. It still very much feels fascist.

📲 New Long Covid and ME apps aim to share information, build community.

👎🏽 Womp, womp: Paxlovid Fails First Test in Long COVID (free MedPage Today subscription required).

🧑🏻‍🦽 A friend’s mom got Guillain-Barre after having COVID, but this was early in the pandemic and my friend was gaslit by docs when she shared her theory. I sent her this for a moment of schadenfreude: Man Becomes Paralyzed Due To Guillain-Barre Syndrome After COVID.

♿ Pandemic Patients is hosting a free webinar on applying for short- and long-term disability with COVID-19 and long COVID on June 19th at 1pm ET. Register here.

💉 Solve M.E. is hosting a webinar titled Covid Vaccinations: Efficacy, Options, and Special Considerations for Chronic Illness on July 2nd at 4pm ET. Register here.

💊 In other big health news this week: Supreme Court unanimously preserves access to abortion medication mifepristone. I wish I felt I could celebrate this as a victory, but with so many measures of progress for people with uteruses, for trans youth, and for Black voters rolled back in the U.S. in recent years, forgive me for not clapping.

our Helen agreed

😵‍💫 And this shit. Sound it out with me “ray-siz-um”: Four Tops singer says hospital put him in straitjacket after not believing he was in Four Tops. This shit could have been supremely easy to Google. I hope this hospital pays through the nose.

➡️ Seems like a good time to slip this link in here: How white supremacy became a global health problem.

🏳️‍⚧️ And this too:

Robin Taylor (he/him)

with a poignant post on why trans folks should not be excluded from a movement they fucking helped create and fight for.

Spilling T about the LGB

💓 PHEW…deep cleansing breath. Let’s have some fun now: Do elephants have names for each other?

🎶 Tell me something good! Chaka Khan’s Tiny Desk Concert lifted my spirits this week, and I surely needed it. All hail the queen 👑.

🤦🏽‍♂️ Buffoon of the week: Our third update on a buffoon! Thanks to Tonic reader

Manders

for their comment to last week’s post, which let me know that Mr. Suspended Driver’s License never had a valid license to begin with! So folks, Corey Harris is back ON as our buffoon!

🏆 Winner of the week: okay, so she hasn’t won quite yet, but she’s still my hero: it’s Jenna Marie Duncan of Farmingdale, NY, who is suing Cold Stone Fuckery Creamery because their pistachio ice cream contains not a trace of actual pistachio.

Mind you, I have no respect for pistachio as a flavor. But if you’re going to make bad choices, you should at least get what you expect to be getting.

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. Product review (and possibly a little ASMR) edition.

If your cat owns you as its human, you need to get them this amazing cat brush. Did you know that brushing your cats is actually good for their health? So be sure to do it on the reg. And not just the longhairs, either.

But don’t just take my word for it. Turn up the volume here and enjoy the soothing sounds of brushing and purring. And watch until the end to see the amazing hair removal feature (and did you know that pet hair is compostable? Neither did I until this week!).

Did you enjoy this post? 🤗

**Disclaimer: I am (clearly) not a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.