In our recent story, “The Sky’s the Limit: A Friendship Reaches New Heights,” we met Zack and Anthony, whose friendship only strengthened in the face of Zack’s battle with spinal CSF leak. After talking with them about Anthony’s Ironman fundraiser in support of Zack and spinal CSF leak awareness, we asked them to share any words of wisdom they might have for others—both those experiencing spinal CSF leak and those who care about them.
Anthony and Zack with their Ironman medals from Anthony’s race
Zack’s advice to others living with spinal CSF leak
“This might sound cliché, but—first of all, find something to look forward to throughout each week, because otherwise it can seem insurmountable. For instance, for me, I’m hugely into sports. So I put games I’m interested in into my phone calendar. And then I’ve got something to look forward to, because my favorite team is playing on Wednesday or Saturday or whatever. It might seem ridiculous because it’s such a little thing. But I think it’s important to find things that you can find to look forward to, to create a little bit of purpose in the day.
“So just find something simple to look forward to every day. It could even be something like music! I listen to music a ton when I can’t sleep or just when I’m trying to calm down, or when I’m in the hospital, or things like that. Sometimes I’ll set a date for it and put it on my calendar like, you know what, tomorrow at seven o’clock, I’m gonna listen to this album.
“And then I think secondly would be adding some level of responsibility into your life. I personally struggle a ton with mental health issues, including depression and suicidal thoughts, but I find that having a responsibility gives you kind of a reason to keep going. I have a little cousin who has some health problems, and even just talking with him and his mom gives me some responsibility—he’s not giving up in part because he’s looking to me for inspiration, and so then I can’t give up, since I have a responsibility to kind of be a good example. Finding something that you can be involved in where other people are counting on you helps give an external force of people who are looking up to you, who depend on you, and who want you around. For me, it helps give me a reason and a purpose. Because otherwise it’s difficult to keep going just for myself, especially when I’ve been suffering for years.
“Finally, I know sometimes for people with spinal CSF leaks, it feels like doctors who can actually help you are a myth, like they don’t exist. But there are people out there who care, and there are people out there who will believe you and will advocate for you. And I think just knowing that maybe might inspire someone not to give up. As someone who has been through ten different hospitals and has been all over the country and things like that, I understand the frustration and how hard it is to keep going when you hit a roadblock. But there is hope out there, there are people out there that care. It’s just sometimes a matter of finding them and having the patience to be connected with them.”
Anthony’s advice for caregivers and friends
“Watching Zack go through this experience for the four years that he’s been doing this, I’ve learned that you have got to make an effort to be there for that person. Learn about what they’re dealing with. At first, I really wasn’t sure what Zack had or what was going on, and so I asked him about it, and then I did my own research to actually understand what he was going through. So, definitely be there for that person, and just let them open up, hear them out. And letting them know, like I always tell Zack, if you’re having a bad day, if you need to just talk about anything, I’m always here for you, and I’m always going to be here for you.”
Anthony visiting Zack in the hospital after one of his many procedures