Hello, everyone. I'm Brian Hemmingway, and this is the first episode of The Life of Pi. This podcast is curious about the social, emotional, spiritual side of living with primary immune deficiency. One of the reasons I'm interested in this is because I myself have primary immune deficiency. This podcast is going to come out every other week for a full first season, which will be hopefully around 10 episodes.
And the reason I think this podcast is so important is because, a, I think it can feel really lonely to have this. There's been so many parts of my life where I have not been able to just feel seen or heard or understood by someone that has a similar lived experience. And and and so I want to explore stories that perhaps have resonance for other people with primary immune deficiency.
But at the same time, I want other people that do not have primary immune deficiency to have the opportunity to better understand the complexity of navigating a life with primary immune deficiency. As such, I think what I'm hoping from this podcast is that we can move away from talking about the medical component and the biomedical component of having primary immune deficiency and more focus on the other parts of our life. What does it mean to travel with primary a deficiency?
What does it mean to retire ? Well, we have a primary immune deficiency, the complexities of living a life rather than biomedical stuff. Not that that isn't important, but it is something that we are often encouraged regularly to explore through physicians our interaction with physicians and doctors. I can tell you my immunoglobulin levels. I can tell you all of that.
And so this podcast just doesn't want to ignore that because that is an important part, but wants to shed the spotlight on the other parts of our life, the social world, the emotional components, the spiritual components, even. Um, and I hope that you enjoy that. And in this episode in particular, we I want to sit down and give you a little bit of a background of who am I? Because this episode is going to be somewhat shaped by the questions I ask. And so who I am.
And my perspective is important for you all to know. Additionally, in this episode, we're going to kind of roughly talk about the season, obviously, it is going to be an exploration for me. I'm going to learn throughout it. And so it's just going to be the rough outline and we'll see where it goes. And then I also want to give a very brief primer for individuals who feel like they may not know all the different acronyms that will probably show up in this podcast.
And that is about it for this episode. But I'm looking forward to the rest of the season. So I think it's like I said, I think it's important that, you know a little bit about me. I, I think that each of us have a unique worldview and that shapes what we notice in the world. And so as a result, I think it's worthwhile to expand upon who I am in this moment and how I got here.
Starting with who I am, because I think that's important and then I will talk about living with primary immune deficiency. So I was born and raised in Victoria and it was delightful and silly and wonderful. I spent lots of time obviously being sick, but at the moment I was not being sick. Well, I was like I was going out into the forest and I was going down to the beach. I was home schooled K to 12 again, kind of related to primary immune deficiency.
But that gave me so much opportunity to explore the world around me in ways that really felt great for me. Yeah. And so I got to, like, really explore my nerdy side and my science side. And I ended up moving to Vancouver to pursue a career in sign language interpretation. And I am lucky to have gone through the three years of training. And I graduated and I have been working as a registered sign language interpreter.
So after graduation of interpreting, I have been working in community post-secondary settings and more recently, after passing certification, I have certification. Technically it's accreditation, but that only matters if you're an interpreter. And if you are, I'm so happy you're listening.
But in any case, I got I have been working in health care as well and and I have been so honored to interact with the stories and and have people trust me with their stories and what they are saying and all the way from like a family gathering to a business meeting to end of life discussions. And I think that whole experience really taught me how important the systems are around us and how they shape our stories, but inherently how important those stories are.
And that's actually what draws me to this podcast in this current moment. I am I identify as a queer disabled individual. I'm in graduate studies at UBC, University of British Columbia, and it has been a delight and rewarding to to kind of speak a little bit more about why I identify as a disabled person. I think it's worthwhile exploring that a little to just define what I mean by that. For me, I understand disability. I've come to understand disability through my my university studies.
And I realized that the world is and again, this is my perspective and you can share it or you can not hurt. And that's totally fine for me. I realize that the world is built on fundamental assumptions and assertions and have have these like grand narratives that shape how we built the world. And one of them is one of these assumptions is what? What bodies look like and what bodies do, and at some level, my body as a person with primary immune deficiency doesn't function in that same way.
On some days it's closer and on other days it is definitely not closer. And I think that. For me, understanding that my body is doing the best it can, doing good work, it is it is whole and complete, but it is different than the expectation gives me a great deal of meaning rather than framing it as something that is not functioning as well, it is in deficit or I, I for me, it helps me to identify as a disabled person a because it also gives me a community.
But B and more relevantly, it also helps me to. Not. Not not be so angry at my body and not have this, like, adversarial kind of mindset of needing to push through and ignore my body and all of this, I think it has allowed me to come into conversation with my body in a really, really interesting, meaningful way. And it's an ongoing journey.
And and to touch on the community aspect, I think a lot of the things that I struggle with or the experiences that I have or the barriers I face are sometimes shared by other members of the disability community. And that has been meaningful to find kinship and to feel like I have a community. And so just perhaps two, perhaps lonely. But in a nutshell, that is why I identify as disabled. But yeah, I'm a graduate student at UBC right now.
I am studying health care relationships at this exact moment. We'll see where it evolves by the time I graduate. But yeah, so that's me and my life right now to move to primary immune deficiency. I think all of us have an illness and diagnosis narrative. I will try to speak to mine. It is always a bit strange not to know who is listening. And I think I think many of you might understand this like it is who I always tailor it of.
Like, how long do we have, how much time, how much awareness does this person have? And also the initial reactions of like, oh, OK, this person's not comfortable with talking about illness and and a death or like near or the worry of death or anything like that, like then all of a sudden you're like, reduce your story. So I was born much like many people, most people maybe, but I have not done the research, so I will be careful with that statement. So I was born and I was really sick as a kid.
And I think that's a common thing. That is a story that I've heard from many others and lots of bronchitis, lots of upper respiratory infections. And as a result, my childhood looked different, meaningful, deeply meaningful, but different than most folks. I yeah, I remember being bedridden for months, trying to go to K to 12, like public school, getting sick, coming back to home schooling. And that was kind of the cycle for a while.
Oddly enough, getting pneumonia multiple times in a year does not do great things to your body. Everyone is deeply surprised. It's one of those things where as we get closer to the age of 10 or I did not, we just me, I got sicker and sicker. My I got skinnier. I got less and less healthy and and finally got a diagnosis at the age of ten. And that's kind of like an interesting turning point in my life where I started infusions of intravenous immunoglobulin, which you will always hear.
Most people who who have this will talk about. That is what that is. It was it was not an easy first infusion. It was obviously a little bit complex as a 10 year old to navigate this like complex medical procedure, not really, not super complex, but complex and overwhelming feeling for a 10 year old. Yeah, it went not to get into it too much, but like it went not necessarily bad, not necessarily great. It was somewhere in between.
And it took me a while to get into the rhythm of it and to figure out what worked for me after starting the infusions. I was lucky enough that my body responded really well, occasionally side effects and what have you. And we'll probably speak to that a little bit more in future episodes. But he was kind of this night and day difference. It was it was this moment where I did not realize how much. Energy, you could have like that, that was the part I didn't like, I knew that I got sick a lot.
I knew that I slept a lot and I was tired a lot. And if I'm being honest, I still comparatively am compared to other people that I know. But the difference was wonderful. I got to go out and play and adventure and start doing sports regularly. It was like a night and day different and I couldn't be more thankful. And so I did that for 10 years, and then for the last 12 years, I have been on subcutaneous I g globulin, you'll hear that often referred to as S.A.G. or subcu.
And that's just an infusion that I do at home, just under the skin often. And it's different for everyone. I do it in my abdomen and it is much easier and simpler. It is. I'm not sure I like by the time I had changed from IV to the IV bag was not that big of an issue for me. And again, everyone's story is different. But it's interesting because I found that, um, the big difference for me was just being able to do it at home. I didn't have to make the plans. I didn't have to think about.
Oh, is that this Friday? Is it next Friday? It was the simplicity of it that has been really wonderful. And I think that brings me to today. I will say, as a human with primary immune deficiency, I am this is my own somatic. I call it my somatic experience, the experience of living in my body, which I don't know what it's like to live in any one else's body. Thank God it's complex enough to live in my own body. Yeah. Like, I still deal with fatigue.
I still deal with some pain flares and that kind of stuff. Um, illness is obviously a complexity, particularly during a global pandemic. Yeah, and so I'm still in a process of learning who I am and how to navigate my own body, and I'm I don't think that is unique to people that have a disability or people that have primary immune deficiency. But, yeah, it's been a meaningful journey thus far. And I'm looking forward to learning more.
And I think part of the reason I'm excited about this podcast is because I get to learn more about the various ways that you can experience primary immune deficiency. And there's no right way. And I think that's. Kind of beautifully human. Hey, everyone, I know that for me, at least during the pandemic, it has been hard to socialize and connect with people in the same ways that I used to. But I wanted to tell you about a resource that might help. Sepo has a Wednesday night patient meet up.
It happens every other Wednesday, and it is a space for people living with immune disorders to come and talk and discuss it online. And if you are interested in joining one of them, no sign up is required. You can find the link in the events section of the CPA website. You can find that C IPO here, Sepo Dossie, and you can also find the link on Ceppos Facebook page. Come check it out if you're interested.
So I also want to take a little bit of time to kind of give you the shape of what season one is going to look like. Again, it is a process I want it to be human centered, and so as a result, when for the first season in which I'm hosting, it will be flexible in the sense that we will explore what people want to bring to the table. We will have a general focus for most episodes.
But in in for example, if we're talking about travel or we're talking about something else, it might be that someone wants to speak to the social aspects of travel or where something comes up that seems very important to explore. So I just want to kind of give you a general overview of what you can expect for the rest of season one. I am hoping we are going to talk about things like infusing and infusing for the first time. Also, what does it mean to take care of yourself as a person with pie?
How do you travel? What is the experience of traveling as a person with primary immune deficiency? Also, we're hoping to touch on topics like mental health, navigating retirement, um, probably, uh, probably also the pandemic as well. I think that's a salient thing on most people's minds and certainly is a big factor of how I'm living my life right now. Ultimately, at the end of the season, I am going to be kind of giving you my own reflections on what I have learned through this process.
I'm very curious and excited to talk about and talk to a lot of people with primary immune deficiency. I always learn so much from everyone that I interact with. And and so this season is a very exciting thing for me. And I want to make space to talk about how I've grown and changed through the season. At the same time, I would love to hear from you as the as far as people who listen to this.
And I would love to hear what resonated for you or what ideas came to mind or something you wanted to add or a story. I'm hoping that you can I can share this on the podcast at the end as well to make it kind of a community of reflection. If you are interested in doing that. And I'll remind you throughout the season, you can email me at a podcast at Sepo, see IPO Dossie. But yeah. So this is going to be a journey for you.
And I am exploring a lot of topics that I'm still struggling with and I don't know about. And so I'm really excited to have guests. Most guests will be people with primary immune deficiency and with the occasional like expert who has experience with people with chronic illness or expertise on the topic of primary deficiency. So that's kind of what season one is going to look like. It is going to be released every other week. And I'm looking forward to it.
So I appreciate that any community has a unique way of talking and jargon that may or may not be accessible, I know and I hope that some people listening to the podcast eight don't have primary immune deficiency. I think that's wonderful. I am I find it fascinating to explore other lived experiences other than my own. And I welcome you to this podcast. Um, at the same time, I know that some folks are new. I am lucky enough to be, um, twenty three years post diagnosis.
And so I have had the opportunity to interact with these topics very often, and I still kind of get confused sometimes and don't know everyone's own individual like terminology. So I just want to give you from my perspective, based on what I've learned. What are some common terms that you will hear during the podcast? And these are just my own perspective. These are my own definitions based on interacting with other people with primary deficiency and also just talking with doctors.
No doubt some of these might be, um, defined differently elsewhere. covid is one of the ones you'll hear quite commonly that is common variable immune deficiency. Another one you will hear is hypo chemical Obdulio Nimia. Again, a different type of immune deficiency. You'll also hear pide primary immune deficiency, which is specifically primary immune deficiency, means something.
You were typically my understanding is that it's something you're born with rather than acquired immune deficiency, which is something you acquire through life. Then you'll hear PPI or PPI, which is primary immune deficiency, but tends to get shortened because it's fun to say PPI rather than pide. But sometimes you hear someone say pide and they mean primary immune deficiency.
You'll also hear commonly S.A.G. or subcu, and those both refer to infusions of immunoglobulin, and that is something the infusion specifically happening, it's injected into a layer underneath the skin rather than into a vein. If it's injected into a vein, it is IV iji, which is intravenous immunoglobulin. And those are some of the common words you might hear. The other one you will hear regularly is Sepo, the Canadian immunodeficiency patient organization.
They are the one supporting this podcast and they will probably come up in discussion as well. And that's kind of your basic one or one of primary immune deficiency terms that will probably show up. But I would like to remind you all to keep in mind that individuals might use these in different ways. That's totally OK. This is just my own perspective.
That brings us to one of our concluding segments, which is sweet as pie, where we explore the gifts that primary immune deficiency gives us, the opportunities, the uniqueness, the the kind of moment where we look at it and say thank you for something. I know it has given me a lot of gifts throughout the years. Not that I'm saying it is easy to live with, but for example, it has made me have to sit still and think and reflect and adapt.
And I think that has made me a more robust and and dynamic human and also give me just some really wonderful insights into the world and to other experiences. And for that, I'm deeply thankful and I'm looking forward to hearing what each of our guests kind of identify as a moment that is for them, sweet as pie. So I think that brings us to the conclusion of this first episode. I'm excited moving forward. We will have a guest each episode.
But for this one, I just wanted to make sure to introduce myself in in a fair and complex way. Again, this is my own perspective, and this is going to be you joining me on on my journey. And as a result, it'll be our journey as we kind of learn more about primary immune deficiency. If anything resonates with you, please feel free to reach out and share any stories. Like I said, if you do send email to podcast at Sepo Gutsier, it may be shared in the final episode. So keep that in mind.
If you want to share something publicly, I will not be using last names. I will just be using first names. But I would love to hear from you guys. If you like this episode and are as excited about the season as me, you can feel free to subscribe on whatever platform you're using to be notified of the next episode that comes out. Like I said, every two weeks is the go to the end of the first season. I also want to take this moment to thank Sepo, the Canadian immunodeficiency patient organization.
Quite, quite literally. This podcast is only possible thanks to see both support and I'm incredibly thankful to them for giving me this opportunity. I love I love stories and I love learning about other people. I think it always helps me to understand myself. And so I'm very thankful for them allowing me to host the first season. And with that, I think that that brings us to the end of the first episode.
I'm looking forward to seeing you in two weeks time when we both get to learn more about the complexities of being a person with primary deficiency.