"The things that I set out to do are coming true every day. It's brought so much to me."

Below is an edited transcript derived from our conversation with patient partner Arlene Desjarlais on her and her late husband Glen’s experience with Chronic Kidney Disease. We have made minor modifications to ensure consistency throughout the transcript. 

My name is Arlene Desjarlais and I was the caregiver to my late husband, Glen, who passed away from Chronic Kidney Disease in February 2016.

Glen was a beautiful, outgoing, vibrant person. He had an I-can-wait-my-turn mindset. I took the opposite approach. I was always the one who would say, no, you need something. We’re going to get it now. During that process, I found my voice. When there were things he needed, I was the one that spoke up. When we went to doctor’s appointments, they would ask him, no new symptoms? and he’d say, no, everything’s great. No changes! Then they would turn to me and say, well, what’s really going on with him? and I’d have a laundry list of things that were happening with him.

When Glen passed away, his care team was incredibly respectful. We were taken to Seven Oaks Hospital where he had done in centre dialysis. There was a charge nurse who came to the ER department and sat with me until the doctor came and delivered the news that Glen had passed away.

I was already resolved to the fact that he’d passed away at home and that this was his final journey. But that day, it showed me how incredible the people who took care of him truly were — every person that treated him in that hospital came to the ER that day to share their condolences and say what a wonderful human he was and that they just couldn’t believe that this happened to us.

I was incredibly grateful for everything that happened. For all the good care they gave, I always wanted to give back.

Over the next year and a half, my life changed completely.

I went from being my husband’s wife and having an ‘us life’ to having a ‘me life’ and I didn’t know where I stood. I was going through the whole grief process.

Later that year I was invited to an event at Seven Oaks Hospital. I ran into Dr. Paul Komenda and he asked me how I was. I said, “Well, you know, life goes on.”

He said, “Well, we have this network. Would you be interested in getting involved?”

I’m like, “Oh my God, yes. I would love to.”

He said, “You know, we’ve been waiting for you to be ready.”

Fast forward to the Can-SOLVE CKD Annual Meeting in May 2018 — it absolutely changed my world.

The whole entire weekend that I was there, all I did is cry. I cried at every single thing that I went to. I could talk about Glen, I could talk about the things we had gone through, the things that happened to him. It was different being there. It was like I could just take my mask off. The people I was with actually understood what I had been through with him. It’s not that I had a mask on for my family and my friends, but it was different because they didn’t understand what we had gone through and all of the different health challenges and everyday stuff.

There wasn’t a person in the room that I couldn’t connect with. For me, it was the one place where I remember thinking, oh my goodness, I can just let my grief go and just be in the moment and just feel what I am feeling. That was an incredible thing for me.

I also met Selena Allu. She was this incredible woman that came up to me and very boldly told me she needed to talk to me and that Paul said I had a story. She said, you have a story to tell. We’re gonna write a story together. I’m thinking, you’re crazy! I don’t know you and I do not have a story! But, over the course of time, she forced me to sit down and write my story.

I used to think I didn’t have a story because all the time that Glen and I had been on this journey, it was always about what he needed. It was never about me, it was always about him, and the things that he needed to get through everyday life so that we could continue our life together. So I never ever made it a me thing. It was always about him.

Once I finished [writing my story], we presented it virtually. It hit me like a ton of bricks. I was like, oh my god, I actually have a story! I actually lived kidney disease in a different way than he did. I may not physically have had it, but I lived it every single day with him. I did have a story. I didn’t know that because I was so focused on him.

Glen was a very bold personality. He did not care. He would talk to anybody. He could walk into a room of 500 people and he’d be right in the middle by the time he left that room. He would know all of those people’s names and he would know something about them. I used to remember thinking, oh my god, why are you like that? Like I just couldn’t! I always thought I was more shy and reserved.

After he passed away, I learned that I might not have been as bold as he was, but I was equal to him in a different way. I thought when he was here that I was walking behind him, what I learned is I was actually walking beside him the whole time. I learned this after writing my story.

My goal in coming to the Can-SOLVE CKD Network was that I never wanted Glen to be a statistic. I did not want him to be that person on a piece of paper [where people said], yeah, he didn’t do the work. I didn’t ever want him to be referred to in that light. I wanted him to be remembered for the person that he was and the things that he went through and how he persevered and did everything he could. He absolutely did everything he could to stay here and live. His care team worked right alongside us. How could I not want to give back?

The things that I set out to do are coming true every day. It’s brought so much to me. In the beginning, when I first went to the meeting, I was petrified to be there because I didn’t know what I had to give. Now I’m a co-chair of the Indigenous Peoples’ Engagement and Research Council (IPERC) — who would’ve thought! I probably have my fingers in every project in some way across the network.

Glen lost his life because of CKD. But in losing his life, he’s also giving back. It’s going to be eight years in February and some days it feels like it’s yesterday. Other days it feels like it was 100 years ago. It just depends on the day. I know for sure that if I had not joined the network, my grief process would be in a completely different place. I don’t know if I would be in the place that I am now in life. Had I not joined the network, I think I would have eventually found my way, but I don’t think I would be as fulfilled as I am now. Knowing that I’m able to give back and am truly passionate about the work I’m doing, I can’t say enough good things. I just want people to know that there’s hope out there for them.

I loved Glen. I always say, he is my forever love. He will always be my forever love. We met when I was 21 years old. He passed away when I was 46. Next month on the 17th would have been our 30th wedding anniversary. It feels like I could go right back to that day and we’d still be happy. We were happy every day, every day.

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