This Body is Bullshit

My dad, James E. Russell, died this morning, September 6, at 9:43 a.m.

I knew this was coming. I wanted it to come because I could no longer stand watching him live in a body and mind that had betrayed him. And yet somehow, when the moment actually comes, knowing doesn’t make you ready. I wanted this to end because I knew my dad. This fiercely independent man would have fucking hated what his life had become. Wanting his suffering to end and wanting my dad to stay are different things.

So I want to tell you about my dad before bvFTD. Because there was a whole lot of Jim Russell before there was ever dementia.

Dad was born January 8, 1942, and grew up in Piper City. You’ve never heard of it? It’s in central Illinois. He was the son of Adelaine, a schoolteacher, and Joseph, a farmer who also served as an Illinois state representative. He was a proud Irish farm boy who grew up working corn, soybeans and cattle.

His dad’s political career occasionally gave him a front-row seat to history, including meeting John F. Kennedy before he became president and driving him to the airport after JFK met with my grandfather. And if Dad ever told you that story, I sincerely hope you had nowhere to be, because Jim Russell never met a short story he couldn’t make long.

He attended Southern Illinois University in Carbondale, where he was a fraternity brother and wrestler, and later Roosevelt University in Chicago. In his younger days he hung out in the bars along Division Street and occasionally worked as a bouncer, which will surprise absolutely no one who knew him.

He also became friends with a future NASCAR champion, and that friendship lasted their entire lives. Years later, when his friend was living in a nursing home, Dad regularly went to visit him. His friendships mattered to him.

My dad lived about nine different lives. He traveled the country selling custom suits for Hart Schaffner & Marx. He was a pilot of smaller planes and sometimes flew charters, often taking him to the Bahamas, which of course only gave him even more stories to tell. He worked in logging and became a builder. He rode Harleys. He fished. He loved history and country music. There was always somewhere to go, somebody to see, something to do and, of course, another story to tell.

He had a very clear sense of right and wrong and absolutely no hesitation about telling you which side he believed you were on. This was a man who participated in a Women’s March, supported a drag show in Key West and once made a citizen’s arrest of an attorney. And yes, he knocked somebody out at Home Depot. Possibly more than once. Funny considering Russell himself spent part of his life carrying around the title of “felon” because of one of these incidents.

We cannot adequately memorialize Jim Russell without discussing Donald Trump. Dad waged his own personal war against the man, whom he considered a lying bigot and a “useless waste of space.” He eventually discovered the internet and would sneak into Republican chat rooms just to rile everybody up. Apparently arguing with strangers online seemed like a perfectly reasonable hobby.

He could also provide a profanity-laced driving critique to a complete stranger on the road without ever being asked. He was completely secure in who he was, and you were rarely left wondering what he thought about something.

But underneath the opinions, profanity, stubbornness and occasional chaos was a man who genuinely wanted to do the right thing. No one was a stranger to my dad. He wanted to meet you. He wanted to talk to you. He wanted to make you laugh.

My God, the jokes. And the stories. Some of them were even true. All of them got longer with every telling.

He was also a dog whisperer. Dad usually had dog cookies in his pocket, and every dog somehow knew it. He loved taking George to the forest preserve, where he talked to absolutely everyone who walked past, including people who very clearly had no intention of stopping. Didn’t matter. Before you got away, you were going to know that George was the nicest dog and that you should give him a pet.

And then there was Kathy. My dad was absolutely, completely in love with that woman. Enamored with her. She was his everything. For more than 35 years, they were partners in all of it. They rode Harleys together, and he was so fucking proud that his woman rode her own Harley. They danced. They went to parties. They traveled. They found little country bars and tiny towns. They went into the city. They had adventures. They had fun. Mostly, they just really loved being together. Their trip to Ireland was especially important. Dad had never been there before, but he was so proud of being Irish, and Kathy was so excited to take him there. She got to give him that experience, and I know how much that meant to both of them. What a life they had together.

And then there was Grace. Papa picked Grace up from preschool and kindergarten almost every day. He took her to McDonald’s, job sites and probably several places where small children had no business being. Watching her grow into the intelligent, educated, articulate woman she is became one of his greatest sources of pride. And my poor daughter is struggling with the loss of her beloved Papa. That hurts my heart too.

Somewhere along the way, Matt became his son-in-law, and I think Matt gave my dad something that mattered to him more than Matt probably even realizes. Dad knew his daughter and granddaughter had someone really special in their lives. Someone who loved us, took care of us and would be there when we needed him. My dad worried about me. Mostly he worried about Grace. I think knowing Matt was there gave him some peace. He knew he didn’t have to worry quite so much about his girls because we had someone who would take care of us. He was so grateful for that. So am I.

And me. I was definitely a daddy’s girl. My dad was on a pedestal for most of my life. He raised me to be a tough tomboy. Independent. Outspoken. Capable of taking care of myself. I suppose he succeeded. People have said “like father, like daughter” about us my entire life. Whether that’s a blessing or a curse remains open for debate.

Dad was hard to miss. Those eyebrows. That mustache. That personality. He was funny and stubborn and generous and opinionated and adventurous and infuriating and loving. He was complicated. He made mistakes. He hit roadblocks. Some of them life put in front of him, and some of them he probably built himself. I don’t need to rewrite his life and make him perfect because he died. He wasn’t perfect. He was Jim Russell. But he loved people. He loved dogs. He loved a good story. He loved an adventure. He loved his family.

And he lived. Really fucking lived.

And then bvFTD came along. I don’t need to spend a lot of time explaining what it did. Anyone who has been around us or followed along already knows what we’ve been through. You watched it happen with us. What makes me so angry when I look back at this enormous life is that bvFTD didn’t just take my dad from us. It took Russell from Russell.

This man needed to go places. He needed to talk to people. Tell stories. Argue with strangers. Ride motorcycles. Walk dogs. Make people laugh. Have an opinion about whatever the hell was happening around him and make damn sure you knew what that opinion was. He was such a presence. And bvFTD slowly took that presence away, mostly from him. That fucking sucks.

Still, even toward the end, every once in a while there he was. His eyes would light up when I walked into the room. He’d make one of his ridiculous faces. Sometimes I could still make him laugh. I would get a little flash of my dad, and I held onto every single one of those.

And then this morning, he was gone.

Something I was completely unprepared for was all the fucking waiting that happens after someone dies. You spend all this time waiting for someone you love to die, knowing it’s coming and almost praying for it to happen because you can’t stand watching them suffer anymore. Then it happens, and somehow there is more waiting. We waited for hospice. We waited for the nurse. We waited for the funeral home. Three hours after Dad died, we were still sitting there waiting. The hospice nurse finally came and gave him his final bath. Then Kathy, the nurse and I dressed him in regular clothes. Dressing my dead dad’s body was definitely not on my bingo card. We hadn’t seen him in regular clothes in months. But I was grateful that I was able to do it for him. Kathy and I got to take care of him one last time. His clothes were probably seven sizes too big because he had gotten so incredibly skinny. This big man who had taken up so much space in the world had become so small. But he was not leaving his house looking like a hospice patient. We put him in a Hawaiian shirt, and then we actually debated whether it was too hot to put one of his famous hats on him. It was 85 degrees outside. We put the fucking hat on him. His famous red cap.

There has also been so much love surrounding us through all of this. I already knew how incredible my support circle is. My friends and family show up. They have carried me through some really hard shit, and I know exactly how lucky I am. But one of the really beautiful things I’ve gotten to see is Crissy’s circle showing up for Kathy. Loving her, supporting her, checking on her. And really, that’s just proof of who Kathy is. She takes care of so many people and so many things. She is a mom and a friend to everybody. She shows up for people, and now I’m watching all of those people show up for her. I even get a little sprinkle of love from Crissy’s circle, and I feel pretty lucky about that too. The Mulroys being in New Jersey was hard today. Crying on the phone back and forth when we just really wanted to hug each other.

I was actually almost apprehensive to start telling people my Dad had died because I knew what would happen. The calls and texts would start flooding in. And what an incredibly lucky problem to have. I want the love. I appreciate every single person who loves us enough to reach out. I’m just not ready to talk yet. I’m not ready for visits or socializing, and I don’t want to tell the story of this morning over and over today. Today I just want us. Kathy, Matt, Grace and me. And the dogs. We’re going to quietly reflect, hopefully loudly laugh and hold each other. We’ll talk about Dad when we want to and sit quietly when we don’t. There will be time for everybody else. Right now I’m just trying to wrap my head around the incredible void my dad leaves behind. It feels unimaginable to me.

I don’t know how to picture my life without my dad. Without either of my parents. I know I’ve been losing him for a long time. He hasn’t really been able to communicate with us for a while, and honestly, he hadn’t fully been himself for even longer than that. I have grieved pieces of him over and over. But he was still here. I don’t think I understood how much that mattered until today. I could still go to his house and sit next to him. I could hold his hand and kiss his forehead. Every once in a while, I could still get one of those little flashes of my dad. His eyes would light up when he saw me. He’d make one of his ridiculous faces. Sometimes I could still make him laugh. He was still here. And now he’s gone.

I spent so much time knowing this was coming. I even wanted it to come because I knew my dad would have hated what his life had become and I couldn’t stand watching him suffer anymore. I thought maybe grieving him for so long before he died would somehow make this part easier. I feel so fucking sad. There is no bigger thought behind that today. I just miss my dad.

bvFTD ruined the last part of his life and took such an enormous presence from us, but mostly it took that life from him. It doesn’t get the rest of his story.

My dad was Jim Russell.

His friends knew him as Russell.

Grace knew him as Papa.

Kathy knew him as the love of her life.

And I got to call him Dad.

I love you, Dad.

James E. Russell
January 8, 1942 – September 6, 2026