Two Years

Two years ago, on July 16th, 2017, my mother died. As pretty much everyone knows at this point, she had Leiomyosarcoma—an extremely rare sarcoma that we knew would eventually take her. She spent a decade fighting her ass off to rid herself of every new tumor that popped up. She had surgery after surgery, treatment after treatment. 

By the end, she was so tired. She’d never make it known, especially publicly, but you could tell. I could start to see this happening a few months before she died. My wife and I were married two months prior, while mom was in hospice. I know how completely thrilled and proud she was that day, but you could also see that the light was fading fast. She was so tired. She put on a brave face, but the truth is that you really couldn’t have a conversation with her for more than a couple of minutes at a time before she’d zone out. She was literally carrying around a bag of pain medicine that she’d continuously pump into her body all day long. It was the only thing that was allowing her to function semi-normally.

She was losing a lot of weight by this point, and although she always had that Vicki Kelly spark a little bit, she was slowly starting to lose herself. I could tell. It wasn’t all bad—thanks to the pain meds, she was pretty much able to eat whatever she wanted for the first time in a LONG time. She was eating brownie batter ice cream all day long. It was amazing. As the kids say, she had no fucks left to give.

But, of course, it was mostly really painful and hard to watch. Everything unique about her personality was slipping away. I remember spending the night once when she was in hospice care, and Kennedy and I were awoken by the sound of her yelling at her hospice nurse. Mom had always been a really calm and non-confrontational person with other people (not always with me, but that’s another story entirely), but the nurse had started trying to get her to start taking anxiety medication. She flat out refused, and started getting really angry the more that the nurse pushed for this.

That was one of the first moments that I realized how quickly the light was going out. She really had begun to withdraw from most people. She loved posting on social media and getting 500 likes (I mean, she fucking LOVED it). Getting to share her story on her blog was really cathartic for her, but at this point she just didn’t have it in her to update people on what was happening. Honestly, I don’t blame her. The nature of her cancer was such that there were so many ups and downs. So many, in fact, that I really think most people thought she’d never die. Even though I knew the day would come, there was even a part of me that couldn’t rationalize the idea of her not being here. She’d come back from the brink so many times that your brain would just condition itself to believing she was invincible.

The end of her life was really, really traumatic. I’m not here to sugarcoat anything. If you’ve never experienced anyone going through something like this, it’s difficult to wrap your head around. Two days before she died, I called her and she sounded really out of breath. Like, almost unable to speak. It seemed like it kind of happened out of nowhere, too. I didn’t understand what was happening. The next day, dad called. He said that she managed to tell him that he needed to call us and let us know that it was time to come home. We got up to Charleston, and when I walked in the house she was on the couch in her usual spot. It was freezing in the house, but she was sweating. Her eyes were closed, but they’d shoot open randomly and she’d just look around the room like she was trying to make sure she was still alive.

She’d try to grab the remote to change the channel on her TV, but she couldn’t press any of the buttons. She’d call out for my dad here and there, but she really wasn’t doing much talking by this point. Right before we went to bed, she sat up and tried to take some anxiety medication but she couldn’t keep it down. I remember staring at her trying to take a single goddamn pill, and she just couldn’t do it. The last thing she said to me after the pill came back up was, “I’m sorry. I’m so embarrassed.” 

By that point, making it upstairs to her bedroom was impossible. I’ll never get this image out of my head—my dad, as my wife and my brother Brendan watched, carried her from the couch into the guest room and put her in the bed. It was probably the most fucked up, heartbreaking thing I’d ever seen in my life. I watched my mother collapse onto the ground when she found my brother in his bed; no bladder control, no muscle function. I thought about that as I watched dad take her into the room. I thought about how my brother’s death took almost every bit of physical function out of her body. That spirit she always had was gone in that moment. And here she was, 20 years later, in the same condition. Nothing left.

I think she was tired. She was ready to go; ready to hopefully see her son again. 

The next day was a slow, brutal waiting game. It wasn’t quick at all. But I think it was painless for her. I’d like to believe it was painless for her. We just waited. We debated switching out another oxygen tube after many hours, but doing that would have completely useless and even a little bit selfish. So we waited a little bit longer. We held her hand and sat quietly as her breathing became more labored and more sparse. Finally, she took her last breath and she was gone.

I’ll never be able to erase that moment from my memory. Sometimes it’s really hard to think about her and not see her sitting there with nothing left. Thin. Frail. A shell of the woman she was even months before.

Two years later, it’s a little bit easier to separate those images from the memories of who she really was. Days go by and it gets better. But there’s one thing I’ve been struggling with regularly ever since—it’s something I care deeply about, and something I felt compelled to write about here. 

The most unfair and cruel part about my mother’s death is the fact that she had to suffer as long as she did. In South Carolina, she had no other option but to suffer. I know that this is a tough subject for some people, especially those who are deeply religious, but please try and comprehend the thought of someone close to you having NO CHOICE but to waste away slowly. As my mom said sometimes, “They put a dog down for a lot less.”

Please understand, this woman suffered. She suffered horrendously. She suffered more than I even know; the only one who really knows is my father. Why is it that the majority of states in this country don’t have measures in place to ensure that people get the choice to end their lives on their terms? It’s cruel, it’s inhumane, it’s selfish and it’s wrong. It’s not “playing God.” It’s allowing someone to go with a shred of their dignity left. It would’ve meant allowing mom to go if and when she was truly ready, without having to subject her husband and children to watching her vomit an anxiety pill and urinate herself. It would’ve meant even a little less suffering, a little less pain. There is no reason that people should have to suffer until the end if they don’t want to. It’s called choice for a reason, and if my mom didn’t want to end her life at any point she wouldn’t have to. But the fact that she didn’t have that choice is wrong and shameful.

I try to use my experience with losing mom to shed light on this issue, as it’s something I feel really compelled to speak out about. I’m not going to sit here and try to sugarcoat her death. It wasn’t a beautiful or spiritual moment where the light slipped through the window and she slipped away with a peaceful look on her face. It was traumatic, it was slow, and it was deeply unsettling. Of course, we’re not the only ones to experience a death like this. But anyone who has experienced it understands what I’m talking about, so I’d hope people are also understanding of why I care so deeply about right to die. 

No human being should have to suffer any longer than they want. Every human being should have the choice to leave when they feel they’re ready, IF they want to. Choice is an important freedom for all humans. Just as every woman has the right to choose what they do with their body, every human has the right to choose when they’re ready to go. We need to end the stigma surrounding this practice, just as we need to end the stigma around suicide. Sometimes people are just too sick to carry on. Who are we to decide that for anyone else? 

For more information on death with dignity issues, this is a good resource.

I’m finding myself feeling very comforted by writing this today. Everyone who knew my mother knew how special of a person she was, but I felt it was important to reflect on her passing and the reality of that experience. 

I think we’re all healing every day, in our own way, from everything we went through as a family. Sometimes I think about how fucked up the world is right now, and how horrified she’d have been by the current state of our country and our government. But I also think about what it would be like to have her in my life at this really special and crucial point. I wish I’d gotten to call her and tell her she was going to be a grandmother. She wanted a granddaughter so badly, and she never got that chance. My daughter will never know her grandmother, except through stories, photos, and videos. Don’t get me wrong, we’re so lucky that we had enough time to prepare for her to go. She was able to do some really special things for her grandkids, so they could grow up hearing her voice and seeing her face. But it’s not the same. It’ll never be the same, and that’s the only thing that truly makes me bitter and angry. There is no good reason, no master plan—it’s unfair. It’s unfair that she won’t be here physically to know her grandchildren. It’s unfair that she’ll miss out on so much. 

Overall, I’m not angry anymore. I’m grateful for the time I had with mom, and amazed at the impact she had on people. I’m blown away by her legacy, and by how many people loved her. She was a special person. If you don’t know, read her blog. It’s all there. I’m also at a really great place in my life. I’ve got a beautiful wife who has fulfilled my every hope and dream. She’s made me believe in more than I ever thought I’d believe in. She’s made me a better person, and we have an indescribable love. I also have a daughter on the way who IS one of those hopes and dreams.

I’m good. We’re doing better. We miss mom, but we’re all doing better. 

I just wanted to use this post as a way to work through my thoughts today, and to be brutally honest in the same way she was so often about her disease and her fight. 

I’ll never forget my mother. She was a beautiful soul and a kind, generous, thoughtful person. She taught me a lot, in life and in death. I hope she taught you a thing or two as well. 

-Sean Kelly