Greetings,
I do not enjoy writing this, but the truth must be said, and I will not be painted as some villain. I did have to remove RAD from an event for very valid, sad reasons. As a result, ending my support as well.
I invited RAD to sponsor an event; that was all I asked of them if they wanted to, and it was NOT a money issue. I regularly put my money where my mouth is. In fact, I did donate to RAD monthly, as I do other orgs I support. My income is limited, but I choose carefully how I spend every dime and skip things that are skippable. I was bringing RAD in to create a partnership, not to take control of our event.
In fact, their meddling ended what was a chance for us to paint the story of what to do when insurance companies are denying you care. To encourage people to engage in “good trouble.” NOT vigilante justice, and I fear that is the story they are going to run with now. There will be no counter-balance that says, Come organize with us and not support violence as the answer. It’s really devastating to think about how many lives are going to be affected and what good could have been done if we had a seat at the table. I’ve tried to send them to other people desperately, but I don’t think it worked. They wanted me working on healthcare issues. Having nothing scheduled, they are just dropping that segment. None of those involved should ever complain about how the media doesn’t show their side ever again; they had that chance, and they turned their backs on it.
At the 11th hour, not only did I find out RAD didn’t understand what we were doing, but they made numerous demands that changed what this is about. Not only did they want to change the agenda by adding training where it didn’t belong. Then people would be staring at a screen rather than engaged with each other. And then they wanted their name in it, complaining that they always help start things and never get credit. Ego took the place of patients first.
I was having to fight RAD to hold our gathering as we wanted and planned for. It wasn’t our gathering anymore; it was a RAD meeting. The renaming was presented first as a plea, and then it came off as a demand by a bully, and they started making even more demands, taking over control of this event and changing it completely from what it was supposed to be. I really question if they read any of the information I provided about how this is supposed to go and what the goals are.
At what was supposed to be the final prep meeting, I was instead ambushed. I was not warned it was coming or given the chance to get my lead on the call, but rather ambushed by RAD making harsh demands. I also found out all they had done was work on slides; none of the prep or shopping had been done, none of the things that were supposed to be done. I had to harp on them and beg for paperwork that could have been done, but I allowed RAD to play a role, and I ended up chasing them for weeks and regretting it.
On the last call with RAD, one of the people who was supposed to be an active participant didn’t even show up at the meeting where we were supposed to be practicing roles. So this was planned.
They made me very upset on the call. Their demands became too much, so I told them not to come. Then they pushed to say they would come anyway, as this was “their” event. They had no compassion for sending me into a full-blown panic attack while I was on the call with them. They could see me struggling on camera, despite trying to find the bottle with the right emergency medication in it. They were more offended by me being upset and had zero empathy for what was unfolding embarrassingly before them on screen.
Up until that moment, I would have told you I trusted one of them with my life. Losing that created a deep unsafe feeling; being bullied hit hard, and apparently it triggered the CPTSD that was already still on edge from Denver. I haven’t had something like this happen to me in years. It really sucks, and it’s embarrassing, at the very least. My blood pressure is still too high, so in addition to the increased self-pay therapy appointments, I have medical appointments, and I don’t want to see the ER bill. It’s gonna suck.
I told RAD to back off and leave us alone, but it was ignored. Right up until late the night before, I was still getting messages telling me they were coming whether I liked it or not; they even tried to go over my head to my lead.
I was wrong. I should never have asked RAD; I should have kept it a separate event and just invited them to attend.
They tried to force what they wanted our gathering to be. Which resembled nothing of what it was supposed to be. This is an intimate conversation, not a classroom activity. My lead and I had a really good conversation, and I admitted I was wrong for inviting them, and I had let it get out of control. I only asked them to sponsor, not demand that we change our name or rewrite our agenda. In the end, I sponsored it myself willingly, and the org grabbed the rest.
I’m sorry things ended up the way they did, but a takeover was the last thing I expected. I thought they understood what we were doing, but when they attempted to explain it to anyone else, it was clear they didn’t even read the materials. I honestly think they tuned me out entirely. That doesn’t work for this.
This is a sacred and often very difficult process to go through. Some of the matters discussed concerned death and dying by one’s own hand. These are not the conversations for a training; they are the kind that can save a life. They are the kind that can connect people who felt so alone in this to no longer be alone. Paying attention to each person in the room is vital. An aspect of the gathering is to ensure everyone knows they are not alone.
That is my goal in all things I do: saving one more life. When egos and control demands get in the way of that, I do get upset, and I will fight tooth and nail to protect and preserve any efforts that can accomplish that goal. It is my life’s work, and I was floored to be brought to such a point of upset that not only did I have a panic attack, but my blood pressure became so high that my primary care doctor forced me to go to the emergency department, as they were worried I could have a stroke. After about 7 hours there, I left and went straight to the store to get the items that should have already been gotten. I am not okay with waiting until the last couple of hours to get things, which apparently must have been RAD’s intention, but I can only assume why nothing was actually done by the night before the event. I do thank them for their outreach and promotion of our event and for the two people that came as a result.
ON a final note, when I did try to tell RAD leadership in plain English, ” I am not okay.” I was hung up on. I did try to say I’m not okay and I’m not safe, but it fell on deaf, uncaring, angry ears who wanted what they wanted so badly they were willing to push this hard without any compassion or care for me. My disabilities and neurospicy self are very well known. I am very open about it and about having CPTSD.
Only in the last year have I found the courage to say to someone, “I’m not okay.” Up until this point, those around me have been there for those moments. Reinforcing the efforts to help me feel safe enough to say that. This time, it really hurt that when I did dare to say it, not only did it not matter, but anything I said became twisted by them; even saying, “play in the sandbox with us,” was taken as me attacking them.
This episode has forced multiple medical appointments; I can’t wait to see the ER bill and increased therapy visits I pay cash for because my insurance company refuses to pay them. I am scheduled for EMDR to address what RAD did and what it triggered. One of my People’s Action leads was quick to notice a connection to Denver before I did and offer support, telling me that it was really shitty of RAD to pull this at the last moment. I’m lucky to have good people around me who really do care.
I consider myself forced out of rights and democracy by bullies more interested in controlling everything than doing the right thing. Resigning was the only choice. Now you have both sides of the story.
That said, we welcome all, including RAD, but please come as a guest and leave as a member, an equal, one of us. We do not need or want rulers, but we very much welcome partners. I believe RAD can achieve that and become partners. I have hope for their future meeting.
All are welcome; our door is open to not just patients, but providers, and caregivers. Have you felt helpless while someone you loved went without the care they needed because of insurance denies and delays? We are here, you are not alone.
I carry many stories of those who lost their love ones, those who suffer in silence. Here you have a voice. And there’s plenty of room in the sandbox for all to play together.
All the best,
Jenn
Hon. Jennifer R. Coffey, JP, NP, NREMTI (Ret.)
(She/Her) National Volunteer Healthcare Advocate & Storyteller
Volunteer Operations Assistant • CRPS Warriors Foundation
Volunteer Leadership: People’s Action • S.M.A.R.T.
Volunteer Steward – Founding Member: The People’s Union Local #603
Volunteer Member-Leader: Popular Democracy • People’s Chorus
Website: jenncoffey.com • Jenn’s Substack