Sequel Makers: A Conversation with Eric Schlueter By Mike McGarry

Although Eric is ten years younger than me, he is one month my senior in grief. 
​
His wife, Melissa, died on June 1, 2023, from complications caused Fanconi Anemia (FA), a condition she’d lived with her entire life. FA is a bone marrow failing disease and DNA breakage syndrome. People with this condition may have bone marrow failure, physical abnormalities, organ defects, and an increased risk of certain cancers.   

Grief was still fresh from my own loss, so I cautioned Eric up front that I would do my best to be professional and keep the crying to a minimum. We both laughed. “Jack’s will get what they paid for,” I joked. 
He understood. I asked him to tell me about their lifelong journey together, a journey that began in their teen years, when they were both so young.  

Eric and Melissa, July 27, 2022, at their son Dylan’s wedding in Red Wing, MN

Young Love. 
“We met when we were 12, started dating when we were 14, as freshmen in high school, and never broke up. 
​
“There was just something about her, and we just knew. My mom would tell me it was puppy love, but I would tell her it was different, even at that young age. This was real love.”  

They went to different colleges, in different states, with Eric studying in Rapid City, SD, and Melissa in Bloomington, MN. At the end of their freshman year, Melissa’s younger sister passed away from complications with FA. (This was their third close family member to pass away within a 15-month timeframe: Eric’s father and Melissa’s grandmother both passed away during their senior year of high school). Melissa then transferred to a college in Rapid City, South Dakota, so she could be near him. Still in college, they were married on October 4, 1996, in an outdoor wedding in the central Black Hills of South Dakota, a place they always loved.  

Despite the promise of difficulty and tragedy that comes with an FA diagnosis, Eric and Melissa enjoyed many happy and healthy years together. Their son, Dylan, was born in 2000 and daughter, Kailey, was born in 2003. They were young parents, trying to figure out careers while raising their children. Melissa received certification as a veterinary technician and worked in emergency medicine at a veterinary hospital, while Eric pursued Information Technology, specializing in database and container platforms. 

The young family loved to camp and spent many years at a seasonal campground in northern Minnesota. They traveled frequently for their kids’ sports (gymnastics and martial arts) competitions all over the country. 
​
Caregiving. 
“In late 2010, Melissa’s health progressed beyond monitoring, and we started her poly-chronic medical journey.  

“For about a year and half, she was getting pneumonias that just never got better. Doctors would give her antibiotics and she would seem to get better; she’d be healthy for a couple weeks but then the pneumonia would just come back. We tried everything, from ENT specialists to lung doctors to clean out her sinuses and lungs, trying to find the cause of her illness. 

“They put tubes in her ears, hoping that would help. As an adult, you’re just expected to sit there while they cut your eardrums open to put tubes in your ears. Melissa said it was barbaric; it was tough seeing your spouse in so much pain.” 

They started going to the University of Minnesota Hospital for her treatment, where doctors began to treat Melissa for an immunodeficiency. An FA specialist at the U began studying Melissa’s bone marrow health, with multiple bone marrow biopsies, which continued for the next six-plus years.   

By early 2016, Melissa was on a trifecta of drugs: antiviral, antifungal, and antibiotics to treat various ailments. In June 2016 Melissa’s bone marrow health had reached a point where she needed an Allogeneic Bone Marrow Transplant (BMT). She needed bone marrow from a donor and had to stay in the hospital for the transplant for almost a month. Then, she was discharged home and required to return to the BMT clinic every day for 100 (about 3 and a half months) days so doctors could closely monitor her health.  

“It was terrible. As bad as she felt (she was sick almost every day during the process), as sick as she was, she would always get up in the morning, we’d get in the car and drive 23 miles to the BMT clinic. She was so strong. I couldn’t believe she could do this.” 

Eric was Melissa’s primary caregiver. He was going to every doctor’s appointment, taking her to the University of Minnesota every day, tracking all the medication she needed to take, working a full-time job, and taking care of their kids at home. Thankfully, Eric’s employer was always supportive, so Eric would often work from the hospital when Melissa was admitted. 

Support. 
Eric and Melissa had great support from family, friends, and their church community. During the transplant and critical 100 days following the procedure, Eric had direct help from his mother and Melissa’s parents. Eric’s mom stayed at the house with the kids during the transplant hospitalization and Melissa’s parents moved in during the critical 100 days at home. This was a huge help to Eric.  

Even when he went out, leaving Melissa with friends and family, he was always thinking about her care, always worrying that something would be missed, and she would not get the care that only he could provide.  

Despite the support, “I wasn’t good at asking for help. People would say, ‘Hey, I’d like to help,’ but I could never think of anything. Her care was 99.5% my responsibility and I had to take it all on. Even if I was gone for an hour, I was worried that something would be forgotten, and she would suffer because of it. I never wanted to leave her because I was always scared that something would happen to her while I was gone; something I could have dealt with if I’d been there.” 
​
That fear was always with him.  

Eric and Melissa, August 1, 2020, Nemadji State Forest.

Seasons.  
“There were seasons when we were in a valley and things were big and heavy, when I was doing a lot of caregiving and working a lot of hours and trying to provide for our kids, but then there were times when she was healthy, and she was able to take care of herself and help with everything else around the house. There were so many times along the journey when I needed to be involved, go to all the appointments, be her advocate, and speak to the doctors on her behalf. 

Then, in 2019, Melissa was diagnosed with breast cancer and underwent a double mastectomy.   
“Melissa had so many complications over the years that her providers began suggesting elective surgery to prevent cancer.” 

Several other cancer diagnoses followed, and, in 2021, due to increased risks of reproductive cancers caused by FA, doctors recommended that she undergo a full ovarian hysterectomy.   

“The treatments and the chemo really affected her mental acuity, and she really hated it. It was like toxic warfare on her body. So, a lot of times, she really couldn’t remember a conversation we’d had 45 minutes before. It affected her short-term memory, so I had to be there and ask the questions, keep track of all the medications and treatments she would need. I couldn’t risk putting this responsibility in anyone else’s hands.” 

In 2020, Melissa’s began to get full body cramps that crippled her in pain. The cramps would go up her arms and legs and become so severe that she would think that the bones in her fingers were breaking. In the spring of 2022, she began to get pains in her abdomen that continued throughout the summer. By the fall, the pain became so severe and in November they found themselves in the emergency room, where she was diagnosed with Stage IV end-stage liver disease and Hepatocellular Carcinoma, both of which were not treatable and were terminal.  
​
The doctors were not able to treat the liver disease, but they did treat the cancer, hoping to shrink the tumors and provide her some comfort. Unfortunately, by January, the tumors had only grown, despite the immunotherapy. Melissa opted out of cancer-directed treatment to focus on spending quality time with her family. 

Eric and Melissa, 10/20/2022, at family wedding in Stillwater, MN.

Preparing. 
Eric and Melissa were always transparent with each other and communicated age-appropriate information with their children. Melissa was dying.    

“We didn’t sugarcoat anything with the kids. We spent a lot of time talking about Melissa and how it would be when their mom was gone. We’d also been honest with them about the risks their mom had years before when she had the bone marrow transplant–at the time, doctors had told us that there was a 50/50 chance that she would die from the procedure.  

“The worst part was seeing your kids get sad, knowing that their mom was dying and that there was nothing that I could do about it.” 
​
Melissa entered hospice in April of 2023 and passed away peacefully in the early morning on June 1, 2023, with Eric by her side. ​

Eric, Melissa, son Dylan, daughter Kailey.  8/13/2013 - Family photo in Minneapolis, MN  

Grief cannot be bound. 
You think it can. You think you can compartmentalize it, isolate it, and lock it away to be brought out when it’s convenient for you, when you’re ready and alone and when you have nothing else to do but face it and let it have its way with you. 

It doesn’t work that way with grief. Grief is in charge. Grief does all those things to you. You face grief when grief is ready, and when it hits you, it can wash you away like a shell on the beach.  
“We knew it was going to happen. We’d prepared for her death, and I really thought I’d be ready when it happened. 

“I assured her, when she would worry about us being alone, that we would be Okay when she was gone. We talked a lot about her death and discussed how to use her limited death benefit.  With it, we gifted her car to our daughter and forgave a small loan to our son. 

“We lived through years of anticipatory grief, but when she died, that’s when real grief hit!  I’m like, ‘holy smokes!’ This is different than when she was alive, and we planned and talked about her death, and she was there. This grief was not at all what I expected.  
​
“Now, she’s gone. She’s not there. I’m alone and the grief and death are real. 
“Now it's a one-sided conversation.  ​

Eric and Melissa, September 30, 2022, Black Hills, SD.

“She’s gone. I’m 47 and alone. I know I’m an adult and I can live alone–it’s just that I’ve never done it. She’s always been there with me. Now, it’s just me. 

“I thought I had prepared so much for this grief and now it’s like I haven’t prepared at all.” 
​
Becoming intentional. 
With caregiving, isolation can become easy, even comfortable. When the caregiving is over and your loved one passes, you’re still in that comfortable bubble where you may want to stay alone. It takes intention and great willpower to fight that temptation, especially while you’re grieving the loss of one so dear. 

For Eric, the pandemic and his job’s work-from-home status, and years of self-imposed isolation because of Melissa’s compromised immune system, it became easy, almost second nature, to lock himself in and just not go out.  

But he fought that temptation and became intentional about breaking out of the bubble of isolation. After Melissa’s death, he started reaching out and joined several grief groups in his community, hoping to make sense of the tremendous loss in his life. He became involved in Jack’s Caregiver Coalition Sequel Makers and started attending Klatches for support.  

“I could just sit at home and wallow in my grief, but I had to be intentional about meeting up with people, doing grief groups, and going to Jack’s events. A lot of times, I just didn’t want to go out but after I went out and got support, I was glad I went and got out of the house and made contact with others who could relate.  

“Through the Jack’s Klatches, I get so much of the companionship from other men who can relate to my loss. I love the dynamic of the Klatches. I love how the meetings are structured, how they’re managed and facilitated. I love the concept of Jack’s–men helping men. It really helps to be surrounded by other men who are grieving in the same way that I am. The support provides such a level of comfort and companionship that I miss.  
​
“Several of the Jack’s guys have invited me out to other Sequel Maker events, like the Firepit Fridays and Thirsty Thursdays and they’re mostly in my area. These events offer a lot of support for me. They give me reasons to go out and get out of the house. I talk to Mark Mattson quite a bit.” ​

Kailey (daughter), Dylan (son), Gabrielle (daughter-in-law), Eric and Melissa, July 27, 2022, at Dylan and Gabrielle’s wedding in Red Wing, MN.

A new season. 
Since they’d known each other, whenever he had to share anything, it had been Melissa who he shared it with. And after she died, he instinctively turned to her to tell her about anything that happened, only to find that she was no longer there. In November, when he was hunting and bears showed up at his camp, the first thing he thought of was grabbing his phone and telling Melissa about the bears. 
​
“People knew us as Eric and Melissa our whole lives, from the time we were friends, best friends, boyfriend/girlfriend, husband/wife. We were always together, our whole lives, and everyone knew us together. We did everything together. We went through puberty together. We went to high school and college together. Every major and minor discussion in my life with Melissa–buying a car, buying a house, planning for retirement. It’s always been with Melissa.” ​

Eric and Melissa with dog, Ellie, August 30, 2020, Black Elk Peak, Black Hills, SD.

“Melissa is gone, and I need to be intentional about what’s in my sequel–I acknowledge the past; I’m alive and I’m still allowed to enjoy life. There are a lot of things I had to put on the ‘shelf’ so I could be a caregiver for Melissa. One of those things was bird hunting. I love bird hunting. My son recently asked me if I want to bird hunt again and I’m like ‘Yes! Yes, I do. That would be fantastic!’ So, a whole bunch of things just came together, and I got a dog. He’s an awesome companion, but it’s not like a human relationship. It fills a little bit of the void. He likes to cuddle and sit on my lap and he’s just a good buddy. But the physical touch is missing, what I had with Melissa. The love we shared is missing.  
“And that’s hard!” ​

Eric trying to work from home. Bismarck wanting to play.