At the fourth place, we are trying to highlight the relationship we have with food and the impact it can bring when access is limited or changed in some kind of way. Particularly though, in the event of dysphagia in whichever of the many ways it can be acquired and for however long it impacts someone’s life and relationship with food.
I recently had the privilege of catching up with an old client of mine to talk about his experience with dysphagia and how it impacted his life. His name is Brendan. Something I recall vividly about working with Brendan was what a full life he had. You see, Brendan is a musician, a band manager, a business owner, a music teacher, a mentor, a partner, a home cook and now, a stroke survivor.
With a repertoire like that, it’s unsurprising that Brendan has been one of the most motivated people I’ve ever had the pleasure of working with. The first time he walked into clinic, he knew all about this thing called dysphagia and the first thing on the agenda was how he was going to get back to his very full life that included eating and drinking what he loved.
Every week, Brendan would walk into clinic with his partner, Mary, and proceed to give me updates about guitar practice after the stroke, live shows he’d played with his band, tour plans, running his business and… cooking.
One thing that always stood out to me was Brendan’s persistence to improve. He spoke about how he integrated his dysphagia therapy regime into his life the same way he committed to 8 hours of guitar practice a day to make sure his right hand was up to scratch for his gigs after the stroke. He kept a strict record of his weight and oral intake to transition off a feeding tube while he and Mary continued to cook, eat the same foods and figure out variations of recipes that would allow them to sit down and share a meal together in order to provide a sense of normalcy, inclusion and hope that Brendan was on the road to recovery.
Importantly, Brendan touched on how he saw his dysphagia as a problem to solve. Fortunately his experience with dysphagia was temporary, however to this day, with very mild lingering symptoms, he was and is open to being able to enjoy the foods and drinks that he loves but in a different way. Troubleshooting his way around recipes and meals, he noted that he still has to eat slowly, have a drink at the ready and occasionally substitute an ingredient or modify the recipe method ever so slightly. But, all in a day’s work, he’s back to his very full life and enjoying the things he loves, living and accepting what he described as his new normal.
Regrettably, the whole conversation, pearls of wisdom and all, is not included in this article (I know, a podcast is part of the pipe dream) but Brendan did answer some very poignant questions relating to his experience with dysphagia, his relationship to food and how it did- or didn’t- impact his life.
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Kathryn: Throughout your life, what has food meant to you? What role has it played in your life?
Brendan: Well I enjoy cooking, so I- I find it relaxing. That’s what I find, you know. I like to cook, you know. Because everything, any problems or anything disappear while I’m doing that you know, so that’s- I find it as [sic] a little bit of a hobby.
K: A bit of a therapy by the sounds of it.
B: Therapy, yeah.
K: And I remember you saying that actually when I was seeing you (as a patient).
B: Yeah.
K: So can you tell me how you came to experience dysphagia?
B: Stroke. What sort of stroke was it? It was a…
Mary: Brain stem stroke.
B: Brain stem stroke, yeah.
K: Was it a long term or a short term situation for you?
B: I’d say.. I don’t know whether it was long.. maybe long term, yeah. I still have side effects from it, yeah.
K: For the most part are you more or less back to normal?
B: Normal? Yeah. I’d say 99%, yeah.
K: But it’s still like a little niggle that’s still there sometimes?
B: Yeah, still there. Something you live with, yeah.
K: Before you had dysphagia or before you had the stroke, had you ever heard of dysphagia before?
B: No.
K: So that was entirely new to you?
B: Yes, that’s right, yes.
K: Had you met anyone before…?
B: No.
K: No, completely foreign?
B: Completely foreign, yeah.
K: How did that or has that impacted your life?
B: Um, it impacted it a little bit but not a lot. I didn’t let it impact my life too much, you know. I got on with what I had to do and stayed pretty focused. I didn’t want it to impact my life, you know. Yeah.
K: Yes, you were very focused in your therapy, very motivated.
B: Yeah, I think that’s what- how you’ve gotta be. You’ve gotta be very motivated and always be thinking forward, yeah. Not backwards, you know.
K: Do you think that might’ve been different if you weren’t so motivated on it not impacting your life?
B: Could’ve been, yeah. I didn’t let it though. I didn’t let it impact my life. I was doing things and still playing shows and things like that when, even when I was on the feeding tube.
K: Yeah, awesome. Do you think that might’ve been different if it was a long term, if you still had it now.
B: No.
K: Awesome, that’s really good. Was there a part of the experience that really stuck with you?
B: When the feeding tubes fell out, I wasn’t too keen on that experience. You know, having them put back in. I had four of them put in, yeah. Yeah, pretty unpleasant.
K: Yeah, that’s a good word I think. [laughs]
B: Yeah. [laughs]
K: Were there any notable ways that the impact of the dysphagia kind of spilled into other areas of your life, not just eating and drinking?
B: No.
K: No, because as you said you didn’t really let it.
B: I didn’t let it, no.
K: Good. Do you feel as though your relationship to food has changed since?
B: No, it hasn’t. It’s still the same, yeah.
K: Do you feel like when you were going through it you maybe…
B: Not really, even when I was going through it I still cooked. So I cooked for Mary even though I was going through it, you know.
K: If someone else were to go through a similar journey to you, what advice would you give to them?
B: Make sure they do the physio (speech therapy) every day.
K: The therapies?
B: The therapies, yeah. So, work. Okay?
K: Yeah, you were very good with those.
B: Yeah, you gotta do them every day. You may not feel like you’re getting better but you actually- there’ll come a day when all of a sudden you can swallow again.
I couldn’t swallow a cup of coffee, you know, so… Although I tried, you know. But um, you just gotta keep at it. Keep testing yourself as well.
K: Yeah, that’s right. Mary can I ask you, as obviously Brendan’s partner, did you feel like- how did you react to that big change. Obviously there was big medical- sorry I’m putting you on the spot. Apart from I suppose the initial being in hospital and that scary stage, once Brendan was back at home, did you kind of have any big moments?
M: Not really, I mean, it wasn’t really scary. I mean, I’m the sort of person that just gets on with whatever happens in life. You just deal with it and that’s what Brendan was like as well. Like he told me in hospital, “you are not to cancel those gigs,” you know. “I’ll be doing the gigs and if I can’t do them, I’ll work out what to do,” you know. That’s what we’re like with everything we do. You just get on with it. You face whatever it is head on.
B: Yeah.
M: And also, I researched myself so when he couldn’t swallow I looked it up and thought, “there’s a thing called dysphagia. That’s probably what he’s got,” and I downloaded an app and had a look at exercises and everything like that before.
K: That’s right, I remember!
M: Yeah.
B: I think I did too.
M: Yeah before even.. It wasn’t reality scary because it sort of- the whole thing kind of happened in slow motion as well. It wasn’t- He got the vertigo and then he wasn’t diagnosed for a week and you know, so…It wasn’t like “Bang” someone rings and says Brendan’s had a stroke, it was all slow motion sort of, yeah.
K: And I think the both of you having such a positive and proactive attitude, I think really shaped your experience of the situation.
M: Yeah, you just had to get on with it. Whatever it was, you just do what you’ve gotta do.
B: Yeah.
K: Do you have any thoughts or comments that you want to share on top of that?
B: Stay positive. Yeah, keep positive with it. Don’t think about it, just get on with your life. As if you’re the same, as if you were the same. Yeah, that’s what I’d recommend, you know.
M: And trust the people who are doing the therapy.
B: Yeah, trust the people that are doing the therapy. You know, do it. Make sure you do it. Yeah, you must do it, you know. That’s it.
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During our discussions, we touched on the topic of disenfranchised grief and the importance of inclusion at mealtimes where Brendan remarked on a recipe that Mary had used throughout his time in therapy, that it was good enough to enjoy regardless of whether or not a person was experiencing dysphagia.
Brendan and Mary have kindly donated this recipe to The Fourth Place to support the notion of shared mealtimes for people requiring a modified diet. So stay tuned for its imminent release!
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