Joyal Mulheron spent more than fifteen years advising high-ranking politicians, including former Arkansas Governor Mike Huckabee and former First Lady Michelle Obama, and translating basic science into public policy. She has enjoyed leading major initiatives for the National Governors Association, the National Academies of Science and the American Cancer Society. She holds a Masters in Biotechnology from the Johns Hopkins University and degrees in Biochemistry and English from Virginia Tech. After a series of high-profile death events and the death of her daughter, Joyal founded Evermore to change policy, advance research and make the world a more livable place for bereaved families.
A couple of years ago, I was advising the nation’s governors, um, on, uh, public health issues. I did some, uh, some brief advising for the last White House. Um, when our daughter was sick, I, we had just this horrific experience . . . and horrific not just because your child is dying and you’re watching them die and there's nothing that you can do about it. But we were just interfacing with people and these providers, and, and all the while I just kept thinking, “Something else has to exist. This is awful.”
And frankly, although I had been advising the nation’s governors, I thought I was incapable of navigating the healthcare system to get myself and my family the support we needed while our daughter was sick I had a child that the medical community didn’t know how to treat or know what to do with. Because I was a basic scientist by training, I was crunching the numbers on what her calories should be. I was doing all of her dilutions at home and all her medications and working with one of the hospitals. My local hospice provider was not doing that for me.
Um, I was asked to leave my job because they didn’t know my kids were having a very hard time in school. They’re very good students, but then suddenly they weren’t. It was very stressful. Um, there are a lot of also financial implications with having a terminally ill child and, and all of the things that, that they require and need.
Um, the health insurance company, uh, you have, when you have a very sick child, you get a case worker. And so, my case worker would call me every couple of, like every couple of weeks. And, um, she’d say, you know, she’d ask me, um, “You know honey, do you think she’s going to die in ten days or in more than ten days? Because if she dies in less than ten days, I have to fill out different paperwork.” When you have a si-, when you have a sick child, particularly in our, our, our circumstance, she was ... There were days where she was almost dying every day, if not up to five or six times a day. And I’m not being dramatic in that turning completely blue or purple and sort being on the kitchen floor saying, “Not today. Like, I’m not ready.” Um, and to get the call from the insurance company where she’s just a transaction . . . or being told that you need to call the funeral homes and you need to make her arrangements, and the funeral director say, “Well, how big is she? How old is she? Well, if she’s this tall or she ... dies by this, I could cut you this deal. But if she lives to be this old, well then I’m going to charge you this much money.”
And every facet of life ... every interaction you have is, it’s so hurtful in that, that frame when you have a terminally ill child, you don’t wash all their clothes because you don’t know. That could be it. These are not the things that families need to be going through. If my biggest concern at home was not doing her laundry so I could just have her scent, that should have been what I focused on. Coordinating 24 different medical providers. I shouldn’t have been doing any of that. I shouldn’t have been asked to leave my job. I think, I think we can do better. And I think we deserved better.
“The support that a person receives during their grief experience will be seminal. It will predict whether or not they are able to functionally cope or not functionally cope with their grief.”