The Dragon
by Scott Hardie on August 12, 2024
This is the first of four weekly blog posts about diagnoses that have completely changed my life since the pandemic started. Let's get the gravest one out of the way first.
Until recently, I never appreciated how essential the future was to your mental health. But as the song goes, you don't know what you've got until it's gone.
It was March of 2021, just as people were getting the first round of vaccine shots and the COVID-19 pandemic finally seemed to be subsiding after one long, miserable year. I'd had some strange liver numbers turn up on a blood test after starting a new medication, and they persisted after I stopped. They led to some more tests, which led to even more tests, which led to a grim diagnosis for me at the same time as everyone else was excited to get on with their lives.
I was diagnosed with an advanced case of MASH, a liver disease that causes cirrhosis. In obese people, the body can store fat in the liver when it runs out of other places. When this fat remains there over a long period of time, the liver cannot heal the damage and develops scar tissue. That scar tissue leads to cirrhosis, or failure of liver function due to hardening (fibrosis) of the tissue. There's no treatment other than a liver transplant, for which I was deemed ineligible for several reasons.
Although many people (something like 15% of American adults) have low-level MASH at little personal risk, my case was advanced. The doctor who diagnosed me estimated that I had five years to live. She said that I could slow down the progression of the illness with successful weight loss, extending my life by as much as five additional years if I lost all of my excess weight, but nothing would stop the disease. Sooner or later it would kill me, unless something else did first.
Since then, three other doctors have each told me the same diagnosis, independently of one another, after a liver biopsy confirmed that my liver was 75% cirrhotic. The amount of time that each doctor told me I had left varied, since liver disease can be difficult to predict accurately, but the consensus between them was in line with the original five-year estimate. In one sense I was lucky, since a random unrelated blood test had turned up the earliest signs of this and gotten me a diagnosis years before it would be fatal; most people who die of MASH don't find out they have it until they're in their final days of life, since it has no direct symptoms and the side effects that it causes in the human body are often misdiagnosed as having other causes. I had time to prepare, but I also had time to grieve.
After the initial diagnosis, the next half-year was the hardest of my life emotionally. I know that the famous five stages of grief are considered inaccurate by modern psychology, but the model was spot-on accurate for me. I spent a few weeks in each stage, and I could feel myself transition into the next. First there was going on with my life as though nothing changed, because there was still work to be done and bills to be paid and dinner to cook and so on, and I remember having to force myself to ponder what the doctor had said. Then there were weeks of anger, lashing out at everyone around me over little things; I'm grateful to Kelly for her patience during this time, and for helping me talk through the intense feelings. (I did get into therapy, but not soon enough.) At some point that anger gave way to a distinct period of bargaining, of endless intense thoughts about "what if I just eat like this from now on?" or "what if I do this much exercising every day?" I wanted to defeat the illness somehow, to find a way of healthy living that would buy me unlimited extra time if I could just nail the combination.
The hardest stage by far was the depression. I've been treated for bouts of clinical depression before, but they had nothing on this black fog that consumed me over the fall of 2021. I stopped working, I stopped bathing, I stopped eating, and more than once, I stopped getting out of bed. What was the point? Why bother doing anything if I was just doomed to die no matter what? Nothing mattered. What made it worse were the thousand little cuts that came all day long whenever I thought about something that required the future. I never realized how often you think about the future until I didn't have one: Every time that some ordinary thought occurred to me, like "I should revisit that neat restaurant the next time I'm back in [some town]" or "the next time I buy a car, I need to get one with [so-and-so feature]" or "I need to remember to [do a thing] for my retirement finances by the time I'm 65" or even just "I'd like to visit [insert foreign destination] someday," it was like a little psychic stab wound upon realizing that it didn't matter because I wasn't going to live long enough to do any of that. And these thoughts happened constantly, all day, every day.
But that same pain is what showed me the path out of the darkness. If lacking a future caused me sadness, then inventing a new future could cause happiness. I started planning projects that I wanted to do, trips I wanted to take, visits with people I wanted to see, and it made me feel better. Even little things, like buying movie tickets a few weeks ahead, improved my mood. If my time was going to be short, I would spend it doing what I wanted to do. It was a huge relief that Kelly agreed right away when I said that I must find a way to retire from my job and enjoy my time, because I couldn't tolerate the thought of merely pushing my company's software patches to Q.A. until I dropped dead. We spent the next six months experimenting with severe changes to our spending and saving to make retirement feasible, until further medical developments rendered that moot. I have a lot more information to share in upcoming posts. But for now, it's enough to say that I've arrived at acceptance: Obviously I'd change the diagnosis if I could, but I have made peace with it and I'm enjoying life to the fullest that I'm able.
Based on how it went telling other people about my prognosis, here's pre-answering some questions that I anticipate:
How are you doing/coping?
Since arriving at acceptance with my diagnosis, I've managed the occasional sadness by keeping busy. I don't always have the energy to do things, but even if it's just household chores because I can't focus enough to accomplish more, I try to spend every minute busy that I can. Staying active, especially mentally, gives me purpose and joy and, if I'm honest, distraction. I dread what feelings will come when I'm close to the end and no longer have the capacity to do that, but my therapist has helped me to prepare. Unfortunately, one necessary "project" has been my estate planning so that Kelly will be prepared, and that hasn't exactly helped me stave off thoughts about my mortality.
Although I don't like the term "bucket list," I started off with that sort of thing, a grand list of pie-in-the-sky plans like visiting international destinations and writing a book and a months-long road trip to see every old friend who ever mattered to me and more. But further medical developments made many of those goals unreachable, and besides, I realized that I already had the life that I wanted. I'm incredibly lucky to know that between spending time with Kelly, seeing local friends, keeping up with old friends online, and enjoying my hobbies online and off, I was already doing the things that I most wanted to do. Grand life goals aren't as worthwhile when you're forced to calculate the cost in hours that it takes to accomplish them and you realize how much you'll miss spending those hours on the little things that matter more. I'm grateful to have learned that lesson from this situation.
What is it like to have the liver disease?
I can't tell at all. It's a symptom-free disease. The knock-on effects that happen in your body when your liver doesn't work are a bitch, and I'll talk about those in subsequent posts, but the main disease itself is painless. I'm not suffering.
Are you sure that this disease will be fatal and so soon? I read something online that said it's mild and livable.
Frankly, I'm surprised at how often I hear this. What do you want me to say? I'm not a doctor; I'm going on what my doctors told me. I didn't merely take the first one's word for it; I got a second opinion, and a third, and a fourth. Yes, the vast majority of MASH patients live out their full natural lifespan with no effect, but a small number of them develop severe cases that include cirrhosis, and I'm clearly in that second group. The progression of liver disease is so hard to predict accurately that the doctors might be wrong and I might live more years than expected, possibly even many more years... but that's unlikely, and I think it better to prepare emotionally for a short life and risk being wrong than to prepare for a long life and risk being wrong. My medical team continues to monitor my liver (I'm scheduled for my umpteenth ultrasound tomorrow) and I'm getting the best care that I can.
Have you made the recommended lifestyle changes to lose weight and gain more years?
Having lived all of my life with what I have no logical choice but to conclude is a compulsive eating disorder—and to be clear, that's what the professionals deemed it, too—I long wondered whether I could stop eating if my life more directly depended on it, proverbial gun-to-head. Through this experience, I got my answer: No, no I could not. Since 2021, I have tried more aggressively than ever to control and change and contain my eating, varying up what and when and how I eat in countless ways, and yet I continue to break whatever rules I set for myself. Not even knowing that meals like the one in front of me will literally soon kill me has stopped me from continuing to eat too much and too often.
For years, most doctors advised me not to get bariatric surgery because my compulsive eating would put me at risk for internal injury afterwards. I guess my continuing to eat lately has vindicated what I suspected every time some layperson recommended that I look into the surgery, that I would just keep eating in spite of "not feeling hungry." I've been on Zepbound for several months now, and it makes me not hungry, but I still want to eat all the time, think about eating all the time, and often do eat even if I just ate. The illogical nature of compulsive overeating makes it hard for anyone who doesn't have the condition to understand, but you can't shame people out of it and you can't reason a way out, either.
This is my way of saying, well, I've tried losing weight since my diagnosis, and I will continue to try in case I hit upon a new solution that works for me, but that whole "live for up to five additional years if you lose weight" thing is apparently not going to happen. I'm disappointed, but long accustomed to disappointment when it comes to eating and my weight.
Why wait until 2024 to share this news if you learned in 2021?
In 2021, I didn't tell anyone but Kelly because the emotions were too raw and intense. I was on a roller coaster, and I can't put into words how grateful I am for her emotional support keeping me sane. I know it was brutal for her too. Being stuck inside while the pandemic still continued outside made it easier to avoid the conversation until I was ready.
In 2022, I told some close friends and some relatives, and my boss out of necessity since my work was suffering. Each one understood and was supportive to the degree possible. Their emotional reactions were all over the place, but mine were far more consistent: I dreaded and disliked the conversation every single time. I wanted to go out like Chadwick Boseman and pull off an Irish goodbye from life, but my circumstances required me to inform certain people, and besides, people were bound to start asking why my life had changed so completely, like why I retired in my mid-forties.
I intended to tell everyone else in 2023, but the conversation never got easier. Each time I had to tell someone else, it meant reopening old wounds for me, and worse, inflicting new wounds on them. I came to despise that look that some people adopted as they absorbed the news, a mask of pity worn over the shock of sudden sadness, and I felt terrible for causing them that pain. Making my "public announcement" with this blog post is my overdue attempt to transition from a state of telling only certain necessary confidants to a state of having told "the world," even though few people read this (apparently including old co-workers?) and I'll probably continue to have to break the news to a few more people.
Several of you Funeratic members are dear friends to me and are learning the news for the first time from this blog post. I'm sorry to you for not sharing the news in person or in a video call or in some other more intimate way. I don't want you to think that I regard you any less as a friend for not telling you the news before I told the world. My choice to share the news this way comes down to two things, first that "the conversation" is usually excruciating and I want to have it as few more times as possible, and second that you get to absorb it privately this way, without having to regulate your reaction on camera or otherwise. I hope that you can forgive me for this choice. As for publishing it in the middle of a weekday when some people might see it at work, is there a good time to share something like this?
What will become of Funeratic?
I have plans for the website in light of this news, and I've been slowly and quietly working on that project for some time. But I'm not going to share details until later. It deserves attention in its own separate announcement, after people have had time to absorb this.
Whether you're a Funeratic regular reading this blog post as normal site content, or you're someone else in my life who stumbled upon this, know that I'm grateful for your understanding. People can't help me with this in any substantial material sense, but knowing that people understand and care has made a world of difference in this situation being bearable. Nothing needs to be said; it's difficult stuff to talk about. If you do choose to say anything, public or private, thanks in advance.
This series continued with The Tiger, The Serpent, and The Phoenix.
Eleven Replies to The Dragon
Scott Hardie | August 13, 2024
I wish there was no cause to cry, for both our sakes! Alas.
Steve West | August 13, 2024
I haven't stopped yet, my dear friend. You taught me to love but not how to stop...
Jeremiah Poisson | August 13, 2024
I don't know what to say. It's hard to put anything into words. I understand that there isn't anything that we can do but we are here for any support there can be. I miss you my friend.
Scott Horowitz | August 14, 2024
We've never met in person, but for a good number of years, this site was a daily part of my life. Scott, I am praying for a miracle for you. I'm glad that in some way you were a part of my life, and I wish you nothing but the best.
Scott Hardie | August 14, 2024
Thank you, Miah and Scott! I am grateful, and I feel the same way about each of you.
Andrew Lee | August 14, 2024
Love you, so much Scott.
Carl Van Leeuwen | August 17, 2024
When we met several years ago through gaming it was your kindness to others that lead me to seek to be your friend, and sharing in this way, I now add strength to that list. Mitakuye oyasin, love you brother.
Scott Hardie | August 18, 2024
I appreciate it, Andrew and Carl! I love you each too.
Denise Sawicki | August 19, 2024
So sorry , Scott. Love you. Thank you for being a friend.
Scott Hardie | August 20, 2024
Thank you, Denise! I love you too, and I'm glad to have gotten to know you.
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The creator of Funeratic, Scott Hardie, blogs about running this site, losing weight, and other passions including his wife Kelly, his friends, movies, gaming, and Florida. Read more »
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