EPISODE 40: AFTER THE SILVER LINING
Guest: Drew Althoff
Lauren: So welcome, thanks for being here.
Drew: Yeah. Thanks for having me.
L: It's nice to be able to sit with you and talk about, talk about life.
D: Totally.
L: And having a body.
D: Yep.
L: And um, so the first question I have is: can you give me a summary of your health journey?
D: Yeah. Well, um, I was diagnosed in June of 2017, so it really hasn't been that long and before that I had no inclination that there was anything going on with my health and it's been a short time but I feel like there have been some distinct eras to the past year and a half.
L: Yeah.
D: Um, it started pre-diagnosis, um, in January I was in Paris with my partner and I noticed my belly getting really swollen and I didn't know it was swollen at the time. I just kind of felt like I had been eating too much.
L: Mmmm.
D: I just felt bloated, I guess full of food. It had the same feeling as being like extremely full of food.
L: Yeah.
D: But I kind of wasn't eating that much and when I was eating it was really not appetizing, but I brushed it off. I thought, Oh, I'm in France, I’m eating a lot of bread and cheese.
L: It must be the France factor.
D: Yeah. It's the holidays and I'm on vacation.
L: Yeah.
D: So I kinda just put it out in my mind and it went away even though it was really uncomfortable at the time. And then a couple months later, like around may or April, my ankles got swollen and that's when I was like, wait, I'm not eating my ankles swollen.
L: Yeah, that’s a lot.
D: So I went to the doctor, I went to my asthma doctor because that's the only regular person I've ever seen. And he had an inclination that it was kidney stuff.
L: Okay.
D: So he sent me to another doctor who sent me to a kidney specialist and they took a biopsy of my kidney and they told me that I have primary FSGS, which stands for focal segmental glomerulosclerosis.
L: Wow.
D: Your kidneys are made up of glomerular and they're like, these little tubes basically. And mine were getting scarred.
L: Okay.
D: And that's what FSGS is, the scarring of those glomerular. And uh, that's really an umbrella term that's not like a specific disease. It's like more a set of symptoms, so that's like era one is finding out I have this disease that doctors really don't know much about or where it comes from. So my reaction was kind of like, okay, how long, like what do I need to do to get better? How long until, how do I take it away?
L: Yeah.
D: They're like, well, we have a few things to try. We try steroids and then immune suppressors if the steroids don't work and then if that doesn't work then it's dialysis and kidney transplant.
L: Wow.
D: But at that point in time it was like all about holding on to hope to not go to dialysis.
L: Mmmm.
D: Not have my kidneys fail and not get a transplant. That was like the supreme goal.
L: Yeah.
D: And for a lot of people with fsgs, they can make that happen. They do the steroids and they go into remission. So that's what we were kind of trying for me. And I started taking the steroids, a huge dose of prednisone every day.
L: Oh my gosh.
D: Yea, and uh, my kidneys were just getting worse. And on top of that, like the steroids were awful on my body. Like my swelling, which was already bad, got worse. I was very fatigued and in so much pain and I was working at an elementary school.
L: Oh geez. You need your body for that.
D: Yeah. So then that didn't work. So they said, okay, let's try the immune suppressors and everything that was bad about the steroids was worse with those.
L: Oh no.
D: Yeah. I was just like, I turned into a full on zombie. I was becoming mean and like isolating myself from the people around me. Um, and uh, all the while my kidneys were just getting worse and worse. And so when they biopsied my kidney, I had 70 percent of my kidney function. So from that point, like what they're used to seeing is being like five, 10 or 15 years before someone's kidneys fail.
L: Mmhmm.
D: But for me it was six months.
L: Wow.
D: Yeah. So that really surprised the doctors. Um, and finally my kidneys got down to like five percent or something and they were like, okay, this is an emergency. We need to get a catheter in your chest and get you on dialysis now, next week. So then I did that. That's, this is the era, the next era.
L: Yeah, era 3.
D: Yeah. And it was pretty amazing how almost immediately after the first dialysis treatment, my body was going back to normal and I felt like myself again and I had energy, um, and I just had a happiness for life again.
L: Mmmm.
D: I desired to connect with all my people again. And yeah, it took about a month for all of this swelling to go away, just had to set into a new life on dialysis. It's a lot of time.
L: Yeah. It really is because you're in there how many days a week?
D: I go three days a week. And sessions are four hours, my treatments are four hours. But it takes like a half hour on each end.
L: Right. The whole thing takes at least 5 hours.
D: Yeah.
L: Yeah. So, really strikes me...a lot of things about what you said strike me. But one of the things is your kind of feeling more emotionally contracted in the world. Like you weren't wanting to reach out as much. You felt more isolated.
D: Yeah, definitely.
L: And then moving to a different treatment where you started to expand more and feel sort of like you could bring more of yourself into the world and more of the world to you. What was that like? How did you, how did you metabolize all of it?
D: Um, I was very excited like the whole time. Dialysis was something in my mind that needed to be avoided at all costs. Like I thought of going to dialysis and I thought that's just the worst thing that could happen.
L: Mmhmm.
D: But then when I started I got so excited there's too much energy, like I wanted to do everything.
L: It's like you've got that energy that you had before.
D: Yeah, and I got a part of my mind back, like my imagination and my creativity. I got really into like creating little comic book characters at the beginning of it.
L: Really?
D: Yeah.
L: That’s so cool.
D: And I was so set on it as I’ve got to do something with this.
L: Wow.
D: And um, it was exciting to talk to my loved ones again. Like, I don't know what had happened before, but I just, I got so into isolation that that's what I wanted.
L: Yeah.
D: I wanted to push people away.
L: And that that's one of the things that I think would be really confusing for all of us dealing with stuff with our bodies that it can impact our emotions and our mood and our desire for connection and our imagination. Um, and so it's very easy to make us, I think, think that that's us at the core.
D: Mmhmm.
L: Like, oh, I just must not be a social person anymore, or I just must not be a happy person anymore when really it's way more complex than that.
D: Yeah, totally. It's interesting because this has all taught me so much that my spirit and my body are different entities, but also at the same time they inform each other so much.
L: Yes!
D: Like if my body's feeling crummy for an extended amount of time, that will affect my spirit. Totally.
L: Yeah. Absolutely. That makes a lot of sense. And I just hearing you say that, I'm like, yeah, yeah, it is. It's not that just, I'm not my body and my spirit. It's also that the two are in connection, they impact each other and it's this ongoing ebb and flow of being with ourselves, being with our bodies, being with our spirits and seeing what's next.
D: Yeah. Yeah. I mean, as I said it to you, I kind of felt some relief there is. I feel like there is a lot of, uh, encouragement to be like mind over body. Like you can, you can overcome this.
L: Right, right.
D: It's like my body is actually, uh, got some say in this too.
L: Yeah. It’s true.
*Laughter*
L: What era are you in right now?
D: Era four.
L:Right.
*Laughter*
L: I love this. This can go on forever. So what's era four?
D: Era three was starting dialysis and era four is kind of like that. That honeymoon period with dialysis is kinda over.
L: Mmmm.
D: I've kind of forgotten the, my felt sense of how bad things were and now I'm kind of setting into realizing that dialysis is pretty hard to do.
L: Yeah. It's a hard thing to sustain over time, it sounds like.
D: Exactly. Yeah. And I, I see the people in my clinic that have done it for years and I'm just like, wow, you are beasts.
L: Yeah, truly. To be able to get through so much.
D: Yeah. So now I'm in kind of a phase where like I'm realizing, okay, that honeymoon period is over, but I can still access that excitement for life if I work for it.
L: Hmmm.
D: Yeah.
L: I'm so curious about how that works.
D: Um, me too.
*Laughter*
L: Let’s figure it out.
D: Me Too, because I'm kind of realizing now that if I don't work for it, yeah, I'm liable to go back into a place where I'm not so positive.
L: Yeah. Kind of like a default.
D: Yeah.
L: Yeah.
D: So, um, I see that it's, there I am getting the opportunity to, uh, learn how to fight for my happiness.
L: Mmmm. It doesn’t feel like a little statement. It feels like a really big deal. Yeah. Because what you just mentioned is like, you see a glimmer of it, you know that it's still available to you and you're kind of. And we joked about now like I'm curious about that too. How do you get there? But there's something in you that says, I do have the capacity to connect with us this joy or this aliveness more fully. And so what gives you the sense that there's more there for you?
D: Uh, I mean, I just know it's there.
L: I just do.
D: My partner is a huge source of joy and happiness and I want to be my full self for them. And that's helpful to me too. Yeah. I would say the relationships in my life.
L: Mmmm. They help remind you of your, your aliveness or your...who you are?
D: Mmhmm. Yeah, absolutely. Uhm, nature.
L: Yeah.
D: There's something about that. Just looking at a tree and it's like, oh yeah, it's all there.
*Laughter*
L: Yes. I love that. Yeah. And it sounds almost like, okay, I'm going to connect some dots. You tell me if I'm right here.
D: Okay, yeah.
L: They remind you that the joy and the aliveness are there for you.
D: Mmhmm.
L: And it sounds like they connect you with yourself too. Like, so being in relationship with your partner, being in relationship with nature helps to get you there even more fully.
D: Absolutely. Yeah. I think, um, and um, something. I, I, I'm a musician, I play in bands.
L: Yeah.
D: And uh, there's such a spark that I get onstage that reminds me like, oh yeah, this is an amazing thing that's going on.
L: Will you tell me more about it, like what is it like for you to be up there?
D: Yeah, well I'm, I'm a pretty, I'm a, I'm very introverted. I always have been and I very much identify that way and that a party, I'm kind of like in know corner kind of not, not feeling bad, not enjoying myself, but I'm content, I'm interested.
L: Right.
D: But onstage, I'm up there and there's a whole bunch of heads right below me and they're all looking at me and I can do whatever I want as long as I do it authentically.
L: Yeah.
D: Yeah. And um, I don't know how to describe it. I just get filled with this fire.
L: That is so cool.
D: And almost in a way I, I almost kind of need, need it in my life. Like I take feelings or ideas and I process them on stage.
L: Wow.
D: I don't know if in one in the audience is realizing that that's happening for me, but it's like that's like where I test out who I am in the world.
L: That is so neat. Yeah. I'm remembering when we met up back and I guess it was February and we were talking about energy levels and it was this thing that you were so clearly called to go back on stage and perform again. I was really struck when you mentioned how there is a sense of conflict within you that you really wanted to be up there expressing yourself and yet your physical energy was such that you couldn't like flail around and like jump up on a chair and stuff.
D: Well, um, the, that's still something I grapple with because I have more energy than I did when I talked you then.
L: Yeah.
D: But it's still not like before kidney disease.
L: Yeah.
D: So yeah, it used to be on stage playing like three hour shows, jumping around and doing the rock star thing.
L: That takes a lot of stamina.
D: Yeah, and I can't do it like that anymore.
L: Yeah.
D: I like to play for about 45 minutes now, but I've learned how to integrate it and I, I don't do all the moves like I used to do. That was such a big part of my stage identity.
L: Yeah.
D: And uh, I just can't physically do that anymore. So it's more about making sure I really put myself into the actual music.
L: Mmhmm.
D: I play like I've got a lot. I put a lot more importance now on playing well.
L: That's really neat.
D: Yeah. Instead of making a spectacle.
*Laughter*
L: And it sounds like still, like that part of you is still alive. It's just you’re channeling it differently.
D: Yeah.
L: Actually, I'm remembering we wound up talking about if you can't use your body physically to do as much big stuff, is there another way to use your body? And we talked about costumes and what do you wear, and now I'm thinking about the photos that you post online on social media and you posted a few in the podcast cafe. You at the dialysis center and you have different costumes that you wear or that you have at some point worn to the dialysis center.
D: Yeah. That was um, especially when I just started dialysis, that was like a really fun way to make it my own, like I'd go as a cowboy one day and, or as a Hawaiian vacation tourist and yeah, that was a really fun way to make it my own. And it was really fun for everyone that works there too. And the other people that go.
L: Yeah.
D: And then there was a, it was a way to just put it on Facebook and be like, hey look, I'm proud of being. I'm proud of what I'm doing. Just making it fun.
L: Yeah, you did. And I feel like I guess I didn't really tell this to you at the time and I don't know how many other people feel this way too. But for me when I looked at those pictures I felt both energized, excited and loving. And I felt like really deeply moved emotionally in a way. I was kinda surprised about like I've get a little bit teary sometimes when I look at the photos because I was like, it's this little simple thing that you decided to do and yet it was so representative of using your autonomy to, like you said, make it yours and it just felt very nourishing for me to just be reconnected with that. Right. This is my journey, this is something that I have choice and I can bring my spirit with me. I can bring my silliness with me into the doctor's office or into the infusion center.
D: Yeah.
L: And it just felt like you're a little bit of a chronic illness superhero when you post those. So I'm guessing.
D: That feels really good!
L: I'm guessing that there are other people who probably had a similar experience. In fact, I think I remember in the podcast cafe people are pretty excited about photos.
*Laughter*
L: It's just there's such a sweetness to it and empowering.
D: That's awesome. I've, I had someone in my life came to me and say said that their partner is starting dialysis. And seeing my pictures really helped to normalize it and humanize it.
L: Awww.
D: Felt so good. And then since then, um, someone else that I know started dialysis and they posted one picture of themselves in the chair, hooked up and like I saw their picture and my heart just like sank in a good way. Sank into warmth I guess. But I like stopped her and I was like, oh my god, that's happening. Like I'm, I'm human. Like I don't know how to describe it I guess. But I just felt so connected to humanity.
L: Totally. And to know that somebody was going through something that you had been through.
D: Yeah.
L: And that you just, by being in each other's lives, got each other it sounds like.
D: Totally. Even just like a little thing. Like I noticed that they, they’re tubes were switched which is something you have to do. Like for some reason some people there, there's two tubes on your catheter, that blood goes out one and back in the other, into the machine. For some reason they get clogged and just switching them will unclog it. Well, will make it flow well. So I saw that there blue tube was connected to the red tube and the red tube is connected to the blue tube. Did you have to switch? And they're like, oh yeah, this just so it was so connecting to be able to talk about that.
L: I love that and I think that's, that's part of why it's so freaking awesome that we connect this way, that like there's this podcast community that there are all kinds of facebook groups out there for people to connect and that when people in our lives get diagnosed with something that they already know we have or something similar that they come to us because we don't want to do this alone. Generally speaking, it's nice and so normalizing to be able to notice the tube switch and to be like, yeah, I know what you're talking about. Like I've been through that myself.
D: Yeah.
L: Uhm, and I do get like giddy when I meet somebody with the same diagnosis that I have like, yes, we're part of the same club.
D:Totally. In a way it makes it just normalizing why you go through. It kind of makes me not feel crazy.
L: Totally. Yeah. So I'm going to give you a quick aside and say, is there a special way you would like to introduce era five?
*Laughter*
L: And do you still want to?
D: I do want to introduce because era five is coming up and maybe let's do a little drum roll.
*Drumroll*
D: My partner and I are going through a kidney transplant together. She is donated. She was a match and is donating a kidney to me. Um, and it's pretty crazy.
L: It is. It’s pretty wild.
D: Yeah, yeah. It is not the normal. It doesn't seem like a normal couple thing…
L: As a couples therapist, no.
*Laughter*
D: Sometimes I start to forget what is and isn’t normal.
L: Right? Yeah.
D: So she's going to donate her kidney to me in December. We're...in so many ways, we're going to get a to live how we used to. I mean it's not going to be exactly how we used to. I'm going to have to work to not reject it for the rest of my life with the drugs that might have crazy side effects and being really careful about bacteria, like swimming and stuff.
L: Mmmm.
D: Then um, but I won't be going to dialysis anymore. Uh, which means we can take trips which we haven't done.
L: And that's been a big part of your relationship before this.
D: Totally, totally. And I, I kind of just want to acknowledge that like when you were in a committed couple and a diagnosis comes along that wasn't there before. The diagnosis is put on one person's body, but the illness happens to both people's lives. And um, now with this particular one, my partner's body is involved now too.
L: Yeah.
D: So it's happening to both of our bodies now. Like, yeah.
L: Right. That is such a unique circumstance and I, I really love that you brought that up, that it is, it has an impact on a whole couple. It's not just the individual and I don't, you know, know what it feels like to go through what the two of you are going through and yet I imagine for your partner the desire to support and help you is a big part of how you relate to what you're going through with your health. So this is, like you said, an unusual, very tangible way.
D: Yeah, I mean, and then a lot of ways like I can't imagine what it's like for her, like I know what it's like for me, for my body to stop working, but I don't know what it's like to, uh, choose to give part of my body up.
L: Yeah.
D: Yeah, it's pretty crazy.
L: And there's part, there are parts of what each of you are going through that you sort of get, but then probably will never really truly fully get and that's part of it too. I think it's kind of like part of the intimacy when you're with somebody who you don't quite get it and yet you're in it together, which is pretty awesome.
D: Yeah.
L: What's it like to be talking about it publicly right now?
D: Um, well, uh, I mean it makes me kinda nervous. Yeah.
L: That makes sense.
D: Yeah. It's also kind of not exactly public yet as we're talking about it right now.
L: We’re just in a room right now.
D: So it almost doesn't feel like it.
L: Is there anything in particular that you feel especially nervous about lists list sharing about this?
D: I think I just want to be sensitive to the fact that it's not just my body and my life that are being affected by this right now.
L: Yeah, and I think that that makes sense.
D: Mmhmm.
L: We were talking about a facebook post that you had made recently that I was really moved by and I think probably a lot of people can relate to, which is when you kind of posted a reminder to your community, would you be willing to share a little bit about that?
D: Um, I did. Well, I guess first I just want to say that facebook has been a big way for me to relate to the world and all this in a big way for me to gather support. It's like just so much more efficient than making like a hundred phone calls telling people what's going on.
L: Right!
*Laughter*
D: I could just post it once and then have people texting me. So that's been really nice. And at the same time there's a lot that is missed in that like just this tone of voice and, and, um, facial expression and there's so much that can get misinterpreted or unsaid.
L: Yeah.
D: So I think there's a lot of ways that, that facebook has brought me support and that I'm like looking for things that I maybe can't totally receive through facebook.
L: I think that’s a great way of putting it. There are limits, right?
D: Right. So I made this post saying that, you know, I really appreciate all the love and care and I'm, I'm hearing a lot of positive thoughts and I love that. And also I just want to put those aside for a minute and say like, this has been super hard and has changed my life in some bad ways. A lot of good ways, too. But like can we just talk about the hard for a minute?
L: Which is so vulnerable to say that.
D: It did feel that way. Yeah.
L: For a lot of reasons. But one is it's not a popular thing to say, right?
D: Yeah.
L: Not usually what you find on your facebook feed and it's so like even you say, even though I knew what you were about to say, I felt relaxed in my body again when you said it because it was like, let's acknowledge that this is positive. It's great. We know what's going to happen. There's going to be a transplant. Wonderful, and there’s still daily stuff I'm living with that’s been really hard.
D: Yeah, totally, and I think I even said at the end of the post, just for this one post, don't remind me of the silver lining. I know it's there, but I just don't want to hear about it right now.
L: That's the heart of empathy is when we're willing to stay with someone in that emotion that they're feeling in that moment knowing, of course it would be great. Okay, it’s my friend or my family member, I love them. I don't want them to feel this way, but when we're willing to pause and set aside that desire for moving on to the positive silver lining part and to just sit and say, I'm here with you and I see that it hurts.
D: Yeah, totally.
L: And that it’s real.
D: Yeah. And if you need that start asking for that.
L: That's why I love that you did it because it's one thing to want it and it's another thing to have the courage to say, hey guys, this is. This is what I'm going through and can you give me this? Because actually it sets everybody up to meet our needs better.
D: Yeah. Yeah. That was kinda…I felt risky in a way.
L: It was.
D: Because I've noticed that people really, really want to hear what's going well.
L: Yeah.
D: It's like nourishing in some way I guess.
L: And one of the things that you like talking about is being in connection with shadow, meaning like our own shadow as being a part of your journey.
D: Yeah.
L: It's been an important part of your journey.
D: Yeah. Absolutely. I think that's been one of the biggest lessons for me. Um, before all of this health stuff started happening, I was kinda like apt to look at the bright side.
L: Mmhmm.
D: I kind of shy away from the shadow and that's been in a lot of flux since diagnosis.
L: Like a crash course.
D: I have gotten like way too into it and so striking. So I guess like while you're up accepting the shadow, also striking the balance.
L: Mmhmm. Yeah.
D: Yeah. Don't feed it too much.
L: Right? So there's balance in all things then. And I think sometimes it can be scary to go too far towards one end of the spectrum, which is just be completely immersed in all that is difficult and then it can be dangerous in a different way to go to the other end of the spectrum where we're only looking at what's great and wonderful.
D: Totally, totally agree and I, I'm coming to find that it's important no matter what you're doing, if you're going far to one end or the other, just still trust yourself. Still trust that you're there and you're figuring it out and doing the right thing...eventually.
L: Yeah. Yes. Have you learned for yourself as you’ve been more willing to turn towards what your shadow encompasses?
D: I think I've learned to look at people, like people I know or strangers and and do my best not to assume I know anything about what they're going through.
L: That’s a great reminder.
D: And also be kind. Just be kind. Even if you're not feeling happy, that's no reason not to be kind to others.
L: Yeah.
D: Yeah, that's, that's a lesson I've kind of had to learn the hard way when I go deep into just like hard physical times. My body is kind of like tugging on my spirit to try to come down too and, and it doesn't have to be that way.
L: Mmmm. My beautiful visual that what you just said about like my body's tugging on my spirit. It's almost like there's this pull that says it's like the body...it’s like the body's saying like this is all there is.
D: Yeah, kind of.
L: This sort of spirit is like, Oh man, I feel you. But then it's also like, but wait, I don't want to go completely that far into it. I also have some other reserves. Something else here.
D: Yeah. When my body is going through something really hard, like my spirit is kind of the only thing that is there to balance it. So…
L: Wow.
D: Keep that strength up to keep it balanced. Don’t let them both go down.
L: I'm almost envisioning like a setup, kind of like this, where there's two chairs and one chair is your spirit and then in the other chair is your body's experience and they're just having a conversation.
D: Wow, that's pretty cool. I want to visit that room.
L: Do you want to take a moment to imagine that it's happening?
D: And if you want you can close your eyes and just kind of notice whatever it is that comes to you that they might say to each other.
D: I don't know what they're saying. But I, I notice that there's conflict. There's conflict and uh, they just want to, they just want to be with each other too.
L: Wow. Yeah. It's like there's discord, there's something that it's not smooth sailing, but they're still in the same room and they're still kind of facing each other.
D: Mmhmm. Yeah. I've noticed that. I'm like, just, I've listened to this show and I've noticed that a lot of the guests have had their diagnosis for many years. A lot of people talk about learning how to listen to their body and just kind of like, couldn't help but compare myself. And I noticed how I've had my diagnosis for such a short amount of time. I'm like just in the beginning stages of learning how to integrate all this into my being.
L: Absolutely.
D: So I think I'm sifting through a lot of conflict, like just inner….like my body and my spirit.
L: Well that makes a lot of sense and I'm especially glad you're giving voice to that because there are a lot of people who are where you are. It's just like, sometimes the answer is I don't know. Sometimes the answer is how do, how do I listen to my body? I'm not quite sure. I know it's a thing, I know it’s a concept, and I'm still figuring that out. That's okay.
D: Yeah.
L: So far, what have you learned about…
D: Like, I don't want to cancel plans ever. Like I tend to want to keep pushing myself to do all the things I used to do.
L: Yeah!
D: But I'm starting to learn like it's finally said again where it's like, okay, maybe I can pick one or two or three.
L: Right. And that takes a little bit of a. well, it is, it's like a team effort from the different parts of you because there's the part of you that wants to go to the party or wants to go perform but also wants to go to that dinner and then there's maybe the body is another part of you that's saying like, hey, that sounds great. Dot Dot, dot. I'm not so sure about all of that.
D: Yeah.
L: Can we? Can we have a conversation here and maybe work something out that could actually be doable.
D: Totally.
L: And then that can be really disappointing and it can also be a relief.
D: Or it can be disappointing and relieving at the very same time.
L: There should be a word for that…
D: Yeah.
L: Dis...alleiving?
D: Reappointing?
*Laughter*
L: I like that. Reappointing. So that, there's a way. Yeah, and I can definitely relate to both of those at the same time that sometimes it's like when I finally make what I call the executive decision, that I'm not going to go to a thing that I really wanted to go to because my spirit really wanted to be there.
D: Yeah.
L: That I take a moment and let myself feel the relief and the disappointment at the same time.
D: Right.
L: And give myself the time and space, which then I usually have because I'm staying home to like go through the feelings that show up.
D: Mmmm. That's a good use of that time.
*Laughter*
D: What? I mean that!
L: For a second, I thought you were like “Must be nice for you.” Right? You're like, no I’m serious.
D: So far I've been finding myself in the opposite situation a lot where I say, you know, I really don't know if I have the energy to go to this thing, but I'm going to mentally override that and go…
L: Yeah, and push through.
D: And also in that scenario there's disappointment and relief.
L: Yes. That's a great point.
D: I'm doing the thing that I wanted to do and that's nice. Then I'm with the people I love and uh, oh, I'm very tired.
L: Yeah. It can be disappointing to be that tired to be with people that you're loving. And um, I, I like to think that every time we make a decision it's not the wrong decision.
D: Yeah.
L: And the reason I believe that is because there's no decision we make that we won't learn from. And I, especially when it's our own body, nobody can tell us exactly what the right decision is, the way that we can.
D: Hmmm. Right.
L: And as, especially as far as like, what am I going to do with my body, am I going to go run and jump and play? Am I going to be at home and just rest and give myself time and space, but when we practice going out, when we're not so sure, sometimes that helps us to know which signals we should follow because sometimes we'll move past whatever it was we needed to move past or we’ll say, Oh wow, that was a really not great decision. I'm going to know for next time that when I have that experience that it might turn out not so well.
D: Yeah.
L: And so we're, we're always trying to figure out, and it might be different on a different day.
D: Yeah. I love that.
L: So I like to think it's a personal decision, a personal decision. Um, and, and not one that's usually, it's not always predictable.
D: Mmhmm. I love that. There being no wrong answer. And, and like you said, it's not, there's no, uh, there's no formula that's gonna work for every situation or every day. Sometimes overriding my body and pushing myself to be tired is the right thing to do. I go home thinking, have you gotten to remember that concert for...yeah.
L: Right. And you get to be the one to choose it and that's the important thing.
D: Yes.
L: Just like, you get to be the one to say, hey, I know everybody's depending on me to show up for this concert and tonight unfortunately the body is saying no.
D: Yeah, I'm still. I’m still learning how to do that.
*Laughter*
L: I promise nobody called me to say like, can you guys remind Drew that he didn't have to come to every concert, so we're worried about it. That didn't happen, but yeah, I think yeah, it is. Like you said, I'm still learning. I'm still figuring this all out and quite honestly I don't think that there's an end point when it comes to that. As soon as we get really good at it…
D: That’s comforting in a way.
L: Right? And then it's like...take stock of what's going on because once we get in a groove, our bodies change, our spirits change and then we have to reassess.
D: Yeah.
L: Our passions change. Everything's changing. That's like the main promise of life.
D: Yeah. Totally.
L: And then in era six, we don't know what’s coming.
D: Yeah. Who knows? I made a joke about that being comforting, but it really is comforting because there's no place where you're expected to be. There's no place where you have to end up.
L: I’m just soaking that all in.
D: Except for I guess maybe here, here now.
L: Yeah. That's great. That's medicine right there.
D: Yeah.
L: Thank you. So right now, the beginning slash middle of November and your surgery is scheduled for pretty much a month from today.
D: Mmhmm.
L: Do you have any intentions or hopes or fears that you are noticing at this point?
D: I do have an intention surfacing, which is kind of related to the whole reason to do a transplant in the first place, which is to have more of myself for the people around me. To be able to have as much Drew as I can for everybody and for me too.
L: Oh wow.
D: Yeah.
L: I love that. What a cool intention. What are you most proud of throughout your health journey?
D: There's a couple things I'm proud of. I guess sometimes I'm just proud of like making it through a hard day and that's, that's become like something I'm, I'm able to be more gentle with myself with just like just at the end of a hard day. Like, wow, okay, it's over. I'll try again tomorrow.
L: Wow. That’s awesome.
D: So I'm proud of that. And um, I mean I, so much of my heart is in my music. I'm, I'm, I've written a lot of music since this diagnosis about what it's been like.
L: Really?
D: So I'm very proud of that too. That's like, that's like a tangible thing that I've gotten from this. Yeah. Oh yeah. Like I don't know if people like, people listening realize or even if my band realizes how many lyrics are about this.
L: Wow.
D: Like even I've got a new song where I talk about one of the verses is about fluid retention.
L: What?! Oh my gosh.
D: Just like the little oddities of it will show up in my songs and I don't, I don't know if people, I know my partner notices because she was at the show and she was like, are you singing about like diuretics and fluid retention? I’m like “Yep!”
*Laughter*
L: I’m guessing that’s not the name of the song. That is so cool. It's like a, it's almost like an inside, um, reference for other people with this going through the same thing or like, or even a partner for knowing this, the sort of chronicling my part of my life.
D: Yeah. It is also like a hilarious moment when everyone's in the crowd dancing and singing about, about being swollen, like, yeah, this is a rock'n'roll concert.
*Laughter*
L: The thing is it's so real and I think that's part of what makes, when you said at the very beginning of our conversation, it makes so much sense that when you're on stage you're like, I can do whatever I want as long as I'm authentic.
D: Mmhmm.
L: And I could see now as we've talked about this, how much that means to you because it is an expression of yourself and part of yourself is fluid retention.
D: Yeah. Exactly.
L: And that's real and you don't have to. It's almost like you're saying there's nothing about this that's not worthy of being part of my art.
D: Yeah, that's a really beautiful way to put that. Wow, that's cool. Um, and then also like larger concepts of how this fits into my life have made their way into my music too. Like there's a lyric I have, “My body is a rental car leased out by creation, but designed to not go far.”
L: Oh my gosh.
D: Just like the idea that like we're inhabiting these bodies for a time and they work or not.
L: Well I just want to set an intention as we sit here too, at the end of this episode, play a full song from your, one of your health related songs.
D: Okay, cool.
L: Because we’re using some of your music for the episode so it's just going to be all over the place so we'll have links in the show notes to your music and I think it's really cool, but now when we listen to it we’ll know exactly what you're saying. That's really neat. What does it mean to you to live a fulfilling life and has that definition changed as a result of your health journey?
D: So for me, a fulfilling life is relationships with the people I love, playing music a lot of the times with those same people that I have good relationships with, and nature. I wouldn't say that those have changed, but they have gotten more important. It's like the importance of them is more intense.
L: How has that happened for you? That they've become more intense?
D: I guess just like I have become less concerned about my lifespan. When I was first diagnosed, I was really concerned about, well, what does this mean for how long I'm gonna get to live? Since then? It's like while I'm alive now. The importance of that is kind of washed away and and realizing more and more that life is today, so why waste time with those things that aren't the most important?
L: Wow. You said it. I think that makes sense and is such...It's a beautiful reminder to me, certainly as I sit with you, but probably a few more people who are listening,
D: Yeah.
L: So…
D: Not to say that I don't. I mean, not to say that I don't get sucked into that stupid stuff.
L: Yeah.
D: Of course it happens, but it's just a constant reminder to...to just breathe and focus on those things that are.
L: Right and thanks also for that reminder to be okay with the fact that we're human and we do. You know, we get sucked into the things that aren’t important to us and it's very convincing that stress is a thing for us to indulgent in and like we should be worried about all different kinds of things in the world like traffic and what my outfit looks like and all of that stuff.
D: Right. I mean, you're denying some part of the human experience and if you deny like, you’re not going to love laundry all of a sudden. It is part of the beauty.
L: Right. Yeah. It's just being able to look through that lens and say this is this too is part of my life. This too is another beautiful, weird, annoying, wonderful thing in my life.
D: Yeah.
L: Do you have any funny stories from your health journey?
D: Yeah, I do. I have a couple, like a draw from. Can I talk about my private parts?
L: Yes, you can because we all have them and we can all relate.
*Laughter*
D: So my partner and I were going to Toronto from here, from San Francisco. We're at SFO and I went through the scanner thing and this was like, right. This was right before dialysis like a month before dialysis started for me. So my body was so swollen. It was like, I looked like a different person and my, my, I sounded like a different person because my throat was swollen.
L: Mmhmm.
D: Anyways, so I went into the scanner thing. My partner was picking up, she had already gone through and she was picking up our bags and they were like, sir, we see...we saw something weird on this scan. We have to go check you out. And it's like, okay. And um, they took me over to the side and uh, then they just put they’re hand on my testicles.
L: Oh no.
D: They thought I was smuggling something weird in my pants, but it was just because I was so swollen. It looked like a baseball or like a softball or grapefruit or something.
L: Oh my gosh!
L: Sir, we have to your testicles illegal. We have to check them out.
*Laughter*
L: That’s a song title. Oh my gosh. So in a way they were right because there's something abnormal happening.
D: There was.
L: Yeah, that's very validating you to notice this.
D: And uh, they had to check it out and they got to like feel it. And they were so much more uncomfortable than I was a little bit of like redemption in that. Just like, oh, they put their head down, they're like, oh, I wish this didn't happen.
L: None of us need to be involved in this.
D: Right.
*Laughter*
L: Oh man. That is a really good, funny story.
D: Yeah.
L: I have to say. Uh, okay. So can I tell a funny story?
D: Please.
L: Actually not too long ago, but it's just as it was, it's a funny story about you, which is that um, so when we were getting ready, I, we were sitting in these chairs were about to start and I was like, do you need anything? Do you need anything else like water or whatever, and you're like totally casual and you're like, no, I'm good. I'm, except for a kidney. That was awesome. And then you started that, you had used that in other stories too. I remember that story way back like an hour ago because you mentioned you had talked to like medical staff, like at the, at the dialysis center and they ask you how you're doing and you say…
D: And I say, Oh, pretty good. Except for kidney failure.
L: Right? Like other than kidney failure at which you know about, but let's just not forget. Yeah
D: They encourage me to use that one because it gets a chuckle every time.
L: I bet it makes their day, like we're all here dealing with this really difficult thing and yet you're laughing about it a little bit. Bringing that light on and which is so cool. I appreciate your sense of humor.
D: Thank you.
L: What do you have now that you might not have had without your health challenges?
D: I want to say a letting go is that...Is that gaining? That's kind of the opposite of gaining.
L: Hey, let's go with that then.
D: But letting go of even the expectation that my body works...it’s like kind of freeing. Pretty short answer.
L: It's exactly the right length, especially because it's about letting go.
D: Yeah.
L: So there's a way that you have found some freedom through this to be able to let go.
D: Yeah. And understanding that like really unexpected stuff can happen and you will figure out how to make it work.
L: I like that. That's a good affirmation. Kind of want to make that into a something, some kind of a quote meme so people can have it. Thank you so much. So finish this sentence. This is not what I ordered…
D: But I’m grateful for the food.
L: Grateful for the food. I like that. Thank you. I really, it was so fun sitting with you.
D: Yeah, you too.
L: And it won't be the last time.
D: Awesome.
L: And now we're going to play this episode out with…
D: Duh-duh-duh-duhhh...some music I wrote!
*Laughter*