Many of us, sometime in our lives, will advocate for someone, whether ourselves, an elderly parent or someone else.
About 15 years ago, Spokane resident Kathy Keppel-Colkitt was looking for help for her adult daughter, Brandi.
"She had cancer with a 95% cure rate and, unfortunately, didn't make it. From diagnosis to death was four months. And when she went to critical care, she turned and looked at me and said, you think they'll hear me now, mom? Because they never listened to her... Unfortunately she didn't make it. So I chose to write her story through my lens."
Colkitt named her first book about her daughter’s illness, “Will They Hear Me Now?” She has since written two other books that teach people how to advocate in a variety of settings.
This interview has been lightly edited for length and clarity.
Kathy Colkitt: Advocacy with Brandi started in October of 2008, actually, when she fell on our floor with pain in her head. So immediately you're picking her up, taking her to the car, taking her to the ER, right? Finding what's going on. They said she had a migraine, give her a shot. Unfortunately, when you keep doing that about every five days, it's not a migraine. Never was a migraine. And so you start have to think, how can I help her? What can I do? You know, she's the one in pain asking for help. And you're like, okay, what can I do? You know, what are the options here? And so on. And I talk about those in the books with Brandi. Things you don't think to do.
At one point they wanted her to see a neurologist. We got that appointment. It was four months away. So we took her to the ER one day, and same song, your sed rate’s up, but it's not something that we're worried about. You can go home. And I told them no. And they said, what do you mean no? I said, I'm not taking her home.
Now this is a 26-year-old who has a master's in social work and goes to courts on behalf of kids every week. They thought she was medical seeking, looking for meds. And I just said, I'm not taking her home. And the guy's like, what do you mean? I said, I'll be back here in five days. So see ya, I'm leaving. He's like, no, no, no, no, no. He comes back and he says, well, we don't have that kind of neurologist on staff. I said, that's okay. I said, I'm still leaving. He goes, no, no, no, no, no. He goes, oh, you need to see this doctor. I said, well, that's great. She has that appointment in four months. When you're seeing anyone you love in pain all the time, four months seems like four million years.
They came back and they said, well, I can't have you see that doctor today, but how about in two days? So we went from four months to two days to see that physician. And that's what you can do. You can just keep being the voice, be the strength.
Probably about two weeks after that, she was diagnosed with cancer. That's the problem. They stopped seeking. They stopped looking. You know, they don't even do diagnostics. She had one MRI and that didn't show the tumor. To me, it's interesting in the medical world that it seems like back in the day, and that's not too long ago, 15, 20 years ago, they would maybe do some research or call you up. I had doctors call me on the phone. Hey, I found that. Nowadays, it doesn't seem like that happens. You're in and out and they never follow up. I shouldn't say never, forgive me. A lot of the times, they don't follow up, at least from my experience.
DN: So you were motivated to write about this, about your daughter's situation, and then about tools that people should have to be able to help them. What were the things that you thought were the most important things that you should write in that first book?
KC: In the first book, "Will They Hear Me Now?" I wanted to write about how being an advocate during this medical crisis was helpful and things I learned, why a liaison is super important.
A liaison is like an advocate's advocate. It's the person that helps. My point about that is that you're so focused on this patient, and that's my daughter in this case. At home, I've got another girl with special needs. She has to get off the bus from school. She's eight years old. I've got a husband that works. It's the meltdown of the mortgage crisis in ‘09. I'm a mortgage lender. I've got all these files, people needing to refinance before they lose their job or the bank closes. Banks were closing day by day, so you have all that chaos.
A liaison is someone who helps you with all that back noise so you can focus on what's going on in front of you with the crisis. I talk a lot about that, how important that role is.
I'm a chaplain, a first responder chaplain. My first call was a 16-year-old girl. They didn't know how to get into her cell phone. What I love about my toolbox is that it actually has that personal stuff. What's your password to your cell phone? To your computer? Do you do banking? Is there a password to get onto there? Do you have an attorney? Do you have a DNR? Do you have a will? Where are they located? Who is your attorney or your financial advisor? All of those kinds of things.
If my husband and I died tomorrow, my daughter would not know where to go or who that was. And whether you have a lot of assets or very little assets, it's still important to know.
[The book] also has grief. It goes through funerals. What would you need to do to help support somebody through that? But then also has last wishes. Do you want to be cremated and maybe my ashes scattered over the ocean? What are those little things that you want?
It's interesting when I talk to people about both the toolbox and the book, the guidebook, they say, well, my attorney has all that. They do not. They don't have your passwords. You know, if you are sick in your house and you call 911, if you can't get up and unlock the door, they'll knock the door down. So is there a passcode to get into the house or a gated community or the garage? A lot of times you have the key to get on the garage, but, or hide a key, you know, all those kind of little things.
The book is very comprehensive on what you can do in those areas and the toolbox is where you fill in the blank and you put all those things down so that someone helping you or you helping someone else, you can actually access that information.
DN: So how do you find a liaison? I mean, did you have a liaison in your daughter's case?
KC: No, that was the big aha as I'm writing and remembering and learning. I'm like, crumbs, that's what I needed. I so needed a liaison. I had some friends and I would say, could you do this, could you do that? That's what a liaison does. In my visualization of a liaison, I would, let's say, Doug's my liaison. I'd say, hey, can you check the side effects on the meds she's taking? Versus I'm having to do that, right? Hey, Jordan is getting home at three o'clock today. Can you make sure somebody's there for her? Now they can delegate it or they can do it themselves. It's just a point to where I can get that off my plate and I'm still focusing on the primary thing.
DN: So don't be afraid to ask your friends to do stuff for you.
KC: Correct. But more importantly, ask a friend to be the point that everybody can do the stuff and get back to them. Then your only contact is that one friend. You don't want 10 others that were delegated something to come to you. Maybe it was a really bad day. Maybe all of a sudden her blood, like with Brandi, her blood pressure stopped. We're looking at maybe taking her off the vent and so on. I don't want 10 people coming to me. But that one person can come to me when it's appropriate. You're just simply helping that person gather that information or do the task and it's done.
DN: When I think about advocacy situations, I think about facing big nameless bureaucracies and trying to find information that will lead to, this opens this door, this opens this door. Have you run into those sorts of situations where you've got to do a lot of work in order to be able to get to the answers that you're looking for?
KC: Yes, in some cases that's very true. Some cases it's easier. One thing I learned when Brandi was in the hospital is that you can have what's called a case conference. Nobody in the hospital, nor the social worker, who we only saw at admission four months earlier, had ever mentioned this.
A friend of mine who was a hospice nurse at the time had said, you know, you can have this. All your doctors have to come into the room at the same time. Everyone has to be present. Back then there was no Zoom, so it was phone or in person, but they had to be present by law. And so we had that and you have to do it in a reasonable amount of time. It took them nine days. I understand she was already in critical care at that time and only survived three weeks. So nine days was almost half the time. But you can do that.
It's very important to try to get through that system. Going to the ER, the bureaucracy is, they want you out. They want you in, they want you out. And you're like, no, she's 26. I have no right to say I'm leaving her. But it worked is my point. You do have to push back. Fight doesn't mean be mean. It means you have to learn, a little honey to get what you want on this side. And other times, stand up and just be bold and say, no, absolutely not going to happen.
You just have to have that strength. A lot of times when you're in the crisis, you don't have that strength. So it's nice to have the advocate to do that for you, to be your words, no judgment. It's not my journey, it's their journey. It was always my daughter's journey, not mine. So whatever she needed, that's what I would help get.
DN: So you've written three books about this. Are we getting any better at being collectively advocates for the people we love?
KC: Well, let's hope so. It's a new journey for me. My daughter passed 16 years ago, but it took me 15 years to write the book. So I've been into this for about 18 months now with the first book and then the last two that just went.
I want to go be a speaker all over the world if I can, but definitely in the U.S. I want to share about advocacy. I want to have workshops with my workbook so that people can actually learn, fill it in. Have you ever done a will? And it's emotional, isn't it? You have to have a lot of thought to that and it takes time. At least that's my experience and I've done them a few times. So this is similar. The toolbox is similar. You have to think about that. And then also, where are you going to keep it? It's got really private information in there and stuff.
I want to do workshops. I want to help people, help them help themselves by filling that out and share about the guidebook. I just think it's a great resource to have. I want it to add value to someone's life. How cool is that? When you can help and add value, that's what we're here for.
DN: What have you learned going through this process?
KC: Hmm, that's a great question. I've learned that I advocate all the time. It doesn't matter if somebody's coming out of a door or needs a door open. I open it.
I would love more kindness. More caring and wanting to change the world to a better place, at least as a positive path versus a lot of the other stuff that's out there. And that's the path I choose to take. So sadly, my daughter's passing has given me the avenue to actually talk about advocacy, which I've done my whole life.
And I love that. I think if we could have everybody decide to be an advocate somewhere in their life, what a much better world we would have.
