The only thing certain about life is uncertainty. There is one exception – death. It’s funny that death is the only thing we know is guaranteed but we avoid the topic. We avoid the topic like we avoid “negative” feelings because dying is only really seen as negative, as sad. Maybe because death brings a whole other type of uncertainty. We’re going into it blindly; nobody truly know what happens because nobody makes it out alive. Like most people, I haven’t spent that much time thinking about death. With the progression of my illness and knowing I had a poor prognosis which would probably lead to early death, I started to think about it a bit more here and there. That was until things started changing and I had no choice to ignore it anymore.
In early 2021, a slew of new symptoms came aboard and, overall, my health was just getting worse. I’m not going to get into the new symptoms as most of them are pretty gross to the average person but the most alarming one was weight loss. I first started noticing my clothes not fitting right. After time, I could see changes in my body too. I was shrinking, losing weight consistently week after week. This affected my body in many other ways, causing me to have more weakness and fatigue. The weird thing was that absolutely nothing changed to set off this weight loss which thoroughly confused us all. We searched for answers which continue(d) to evade even the smartest members of my team.
At one point, my weight loss was judged to be from cachexia. This is complex so stay with me here. Cachexia is a syndrome that affects people in the late stages of serious disease like cancer, AIDS, kidney disease, etc. It leads to significant weight loss and changes in metabolism which breaks down muscle, too much muscle. Oddly enough, eating more can’t reverse it, but that also can somewhat explain why the weight loss happened without anything changing in my nutrition.
The summer drew to a close and I was still losing weight, at my lowest weight I’d ever been. There was often nights where I laid in bed questioning things. I’d wondered if I was dying but then would convince myself otherwise, reminding myself that people with my conditions don’t usually die young but, on the other side, remembering that I have a rare case of a rare disease. My body has never followed the typical curve so why would it now? It weighed heavily on my shoulders for awhile. One day, my mom brought it up. She had been wondering too. A few days before my 25th birthday, we had our answer. As I finished up my appointment with my palliative care doctor who, at the time, I was seeing for help with symptom management, she got more serious. Before she could even say the words, I knew what was coming. It wasn’t just a nightmare, it was real, I was (am) dying.
This news hit me like a ton of bricks. I was planning on asking the question but my doctor broached it before I did. This was the sole silver lining just because I was nervous to ask, I didn’t want to look stupid. Even though it was something I had been wondering, it still shocked me because I never thought it would be true. I never thought I’d be in this position, dying when my life had barely started. None of us ever do.
I think my emotional reaction would’ve been stronger but I was feeling pretty miserable physically. A few days later on my 25th birthday, I ended up being admitted to the hospital in pretty bad shape. I had sepsis, an infection from bacteria that had spread from my Hickman central line in my chest and my digestive tract (because of one of those gross digestive issues I referred to early on) into my bloodstream. Sepsis is a serious medical emergency which I had fought before but this time, the fight was different: I was fighting two separate bacteria instead of the usual one, at a much lower weight, giving my body less of what it needed to win. After nearly two weeks in the hospital fighting these bacteria, getting my infected Hickman line taken out and replaced with a PICC line in my arm, and being poked and prodded everyday, I was able to go home on two different antibiotics that I had to do for two more months.
This fight took a huge toll on my body and I never really recovered from it, I never really went back to my normal. It set off my health going downhill even faster. My doctor gently broke the news that this is my new normal, that things will be changing and the best I could do is just try and adjust to my new normal as things continued to change.
I really couldn’t have asked for a better doctor to guide me on this path. She kept things light when she could and, when we needed to talk about the dark stuff, she’d sandwich it between some positive chit chat. I appreciated that whatever we discussed was explained simply and directly, no beating around the bush, but we also got along really well and had some nice chats.
My two weeks in the hospital in October for sepsis and then another hospital stay in April for pain management on the palliative care unit for about another two weeks gave my palliative care doctor, myself, and my parents a lot of time to discuss things like the various options I have in terms of how I want to live out the end of my life both medically and non-medically. These conversations often came with lots of tears, sadness, and, occasionally some pity parties. These are emotions we all try to avoid feeling so, like everyone else, I would’ve rathered not talk about any of this but I was reminded that these conversations are important to make sure my wishes and desires are met as I transition into whatever comes after this life. Sometimes, I just had to pull up my bootstraps, have the conversations, and put the sadness aside to be felt later. Some of these decisions were easier to make than others like choosing to sign a DNR. Other decisions still weigh on my shoulders today as I try to navigate how I want to live my life as I walk towards death, something I never imagined I’d be doing at only 25 years old.
I kept most of this a secret for many months, only my close family knowing what was going on. Then, when my doctor suggested I start seeing my people, I grew my circle who knew a little bit more. But, in general, people had no clue. Looking at the pictures I have posted on social media over this time, it’s easy to assume that things were anything but fine. You’d see me out walking my dog in my power wheelchair with a smile on my face, running my dog training group on Facebook, planting trees in the yard, sharing photos of my best bud River, and so on. However, these were the outliers, the few “good” days amongst the “bad”. I hid behind the pictures snapped on the couple good days.
As an example, here is a picture I took with River last month. It looks like a happy handler and happy poodle on a walk together. Behind the scenes, what you don’t see is the large amount of medication it took to do this. Nor did you see how I fell asleep almost as soon as I got home or the days (more realistically, weeks) in bed recovering. You didn’t see that this photo was taken during the only time I had been on a walk with River this summer, one of my favorite things to do. Though I would love to walk River everyday, most of my days are hard to get out bed, let alone hard to get outside. You got to see only the good. No wonder social media causes such an illusion of happiness and realism when it comes to how we live life.
Since the cat is now out of the bag, people often ask how I’m doing even more than before. I typically do the polite thing and respond that I’m doing fine with a smile on my face. That’s really not honest but I never want to burden them with the heavy truth. I don’t want to be a cause of their sadness. As a life long people pleaser, telling people something I know will make them sad, it just doesn’t feel like the right thing to do. Though I know I shouldn’t, I often feel guilt for causing people grief but this is not my fault, I’m learning that.
“I’m dying” is still so hard to say and I don’t know if it ever gets easier. The social part of dying is hard. Dying is hard period. Dying is hard when you’re 25 years old and have such a love for life. I’ve always had big dreams and goals but now there are so many chapters I will have to miss out on. People often say I’m strong but I don’t know what that means in this context. I don’t know how to be strong through this. I cry a lot. I also smile and laugh a lot too. Though there’s often a cloud of gloom hanging around, I can’t live under it forever, there’s a balance. Misery loves company and sometimes that company is just the you of tomorrow and the next day and the next day and so on. If you spend too much time in the shade of this cloud, you will miss out on a lot of little happy moments. I don’t do it alone, sometimes I need help and we should never be afraid to admit that. There’s lots of therapy, of holding my moms hand when I’m too sad to sleep, of cuddling with River, of spending time with my family and loved ones. I’m grieving the future that I am losing and thankfully they’re there to let me lean on them when I need it.
The physical process of dying is hard too. These days, I’m mainly bed-bound. I spend most of my time in bed sleeping the days away. I struggle immensely with pain, nausea, and other significant gastrointestinal issues. Most of my organs aren’t functioning properly like my bladder not moving correctly to empty itself leaving me dependent on catheterizing anytime I need to pee. What’s happening on the inside of my body isn’t pretty but it’s also happening on the outside of my body too. My hair is falling out, my skin is drier than I ever thought possible causing it to flake off in huge pieces as the dryness spreads to more and more skin, I’m getting bedsores that challenge our every attempt to heal them, and my body is hollowing out as I continue to lose weight, falling further and further from an ideal weight to being severely underweight. My body as a whole is just not functioning as it should. Dying definitely doesn’t fit the definition of pretty that’s for sure.
Although I just listed all the hard parts, there’s some happy parts too. Though they may not be as numerous, they are special all the same. My definition of a great day has had to change some; I need to keep it realistic as to what my body can do. Some of these things I still love are kicking my parents butts on Mario Kart, snuggling with River, crafting/working on my scrapbook “Happy Book”, and just spending time in the presence of people I love, sometimes talking and other times just sitting quietly together or listening in on the conversation when I don’t have the energy to participate. These little moments are the ones you need hang on to, the ones that help carry you through the bad days, to light up your heart, to make you smile. Many of us chase these feelings throughout our whole life but having gratitude in the simplicity can show us that what’s most important has been there all along. It’s in your family and friends, in your pets, in the things you love to do, in the moments that make you smile, in the things you enjoying doing. This thing is simple, it’s love.
Why am I telling you all this now? I’m coming out from hiding behind happy photos and highlight reels because this is me. This is part of my journey. Even though this chapter is the hardest, it is one I must traverse; ready or not. I’ve shared so much of my journey through living with a rare disease here on my blog – from my first diagnosis of Gastroparesis to finally getting answers as to what the overarching cause of my illness is to now, and all the ups and downs in between. I never thought I’d have to share this kind of news about myself at such a young age. My time left isn’t an exact number but is now measured more often in weeks than months. Though there’s no way to know exactly how much time remains in my life, as the days pass, I can feel it coming. My body is tired. I’m emotionally tired. I’m just tired period. But, in the end, I want to be known for exactly who I am, not for a carefully curated social media presence or beacon of toxic positivity, pretending the bad doesn’t exist. Though I’m a pretty positive happy person who really truly loves life, I’m messy. The world is messy. We’re all messy. So here’s the messy part, the hard part, the sad part, the often hidden part, the part that is just as valuable as the good parts.
Here I am,