A letter to my friends before it’s too late.
Where do I even start?…
I had no idea to how present this, how to share this with everyone I care about before it was too late. Well, I’m not the best writer in the world so let’s start by labeling this an informal letter. A letter filled with imperfections, conflicting feelings and ramblings. A letter from me to all of you about a single moment I’m living through right now; a moment that will be extended for an unknown amount of time. A moment is all I have right now. It may be the last moment I have or it may be the moment to begin the best part of the rest my life.
Everything in our lives can be brought back to independent moments. Some moments we have control over. We have multiple paths that lead us on different journeys of our choosing. Some moments are chosen for us. We are hurled through space in a direction inconsequential to our own actions. The only thing within our control is how we choose to live in that moment.
What moment am I living in now? My body is destroying itself, it has been doing so from the day I was brought into this world. I’m not talking about the natural progression from birth to death that we all take for granted at times. I’m talking about an accelerated path towards decay that was by no means under my control. Part of me is accelerating toward death.
From the day I was born my body has been rejecting my liver. The cells within me recognize an organ of its own creation as a foreign invader, hellbent on saving me from whatever devastation it assumes is occurring. Continuously blasting away at its so-called “invader” my body also repairs the damage done with the use of fiber.
But there is a problem. Fiber is nothing like liver tissue and does not provide the same nature or functionality. Your liver is a filter, fiber is not. As I advance through life and constant fibrotic repair, called fibrosis, the damage escalates to cirrhosis and the eventual shutdown of all functionality in the liver.
This is End Stage Liver Disease. This is my current moment. This is my reality. This is what I have kept secret from the world for as long as I’ve known it was a part of me.
What does all this mean? To start, my everyday and the everyday of a normal and healthy individual are complete worlds apart. My everday was your bad flu. Was is key here. As time progresses, so does the deterioration, meaning I have more complications on a regular basis. Luckily, time chose to count itself as a blessing and a curse in my situation.
As an individual born this way I knew no different than the hand dealt to me. I’ve never known what your normal feels like. My everyday became the measurement of what normal was. I never saw myself as sick, I also never knew I was sick. I didn’t find out what was going on with me until about 13 years ago at the age of 23. By that time the damage done was already severe. Doctors gave me two years before they believed a full shutdown of my organ would occur and I would need a transplanted liver. Boy, did my body and I ever prove them wrong. 13 years later I am standing at the precipice of that discussed moment.
I’ll stop the historical part of my journey here for now. It is a long and arduous one that can be saved for another day.
36 years of life, filtered down to a single drawn out moment (kind of like this letter, sorry). I am sitting here in my apartment in San Francisco, the hissing of my oxygen machine panting away at my side, taking a break from packing a bag for an extended stay at the hospital with an unknown check-in time. I have no idea when it will happen, other than soon. The waiting game is getting to me. I am so tired… so incredibly tired and weak. People are beginning to notice the symptoms of my degeneration. Coworkers clearly hear me out of breath, due to a thing called hepatopulmonary syndrome — another symptom, as I try to talk at a slow and even pace so not to escalate the problem.
People notice I avoid the stairs at all cost. I cough throughout my day trying to get a little breath in when I can, avoiding the use of my oxygen unit while at work. I think that facade will be pointless soon as I’ve been feeling more ill without it. Many of my coworkers have no clue to the nature of my health whatsoever, which gave me a little comfort. In that comfort I am extremely lucky. I can be so ill yet seemingly present myself with enough focus as not to distract my time with people toward concern for my well being. This is a tiny needed victory in my life. I want to feel normal.
I’ve also been so lucky not to succumb to a thing called encephalopathy — the confusion, hallecination or coma that can be brought on from an ammonia build-up in the brain. I’m also lucky that I’ve been clear of all cancer as well. Knock on wood.
Lucky indeed. Lucky enough to have my mind tell itself this is what normal feels like.
I am living to the best of my abilities in one single prolonged moment. I’m sitting here, day after day, hour after hour, waiting for a call, the call, from the hospital. Hoping I’ll receive that much needed liver transplant sooner rather than later.
Please. Call soon. The rest of my life is waiting for me.
I’m not allowed to go farther than an hour or so away from the hospital at any point in time. I have a short window to be in the hospital once that phone rings. Even then, there is no guarantee. No guarantee that the liver first will go to me, no guarantee it will be good and healthy and ready and compatible. They have to do tests on me and the donor liver to make sure we are booth good to go.
A donor liver… yeah. It’s hard to think about. You can’t live without a liver so what does donor actually mean? It means my life depends on the lost life of another human being. Fuck, am I banking my life on the death of possibly another great person? I just hope the rest of my life serves as a honor to what was lost and what was gifted to me. I hope to make the world proud of what I bring to it when I recover and feel healthier than I have ever felt in my entire life. I’m gifted a second chance at life through the loss of another, I hope to show I’ll make the best of it.
As for the here and now, I’m sorry that I can’t bring myself to socialize too much as I tend to be weak and tired after work. I try. It ends up costing me a day or two of full downtime. I miss all of you.
Right now I have about enough energy to work, sleep, eat, and go to doctor’s appointments where I constantly go through checkups, MRIs, blood draws and tests. I make the best of my time when I can. That’s my regularity.
Much like a mountain climber on one of the Seven Summits, I keep my head down and I continue to bang on with it. I keep to the moment. I try to not take measure of how much farther I have to go. One step. Another step. The summit will show itself to me when the time comes.
But also much like a climber at higher elevations, the air is thinning and it seeps out of every cell in my body. I weaken. My escapes suffer, blanketed by a flurry of sleep and rest. But screw those weaknesses, I want to live even if it means a bit of physical suffering.
I just bought a new motorcycle. So I am going to do something I’ve always wanted to do with my time. I can’t travel, I can’t date, I don’t really have family to look to for escape. I can’t even really medicate to get away from any of the discomfort or pain that comes from the symptoms I have. Headaches or general pain have to be remedied through a clear mind alone. Most medication processes through the liver and damages it, making it off limits.
So I escape by riding to breathe in some fresh air. To breathe in life. I may not get a lot of time on the motorcycle but I will suffer in other areas ajust so I can feel the freedom and fresh air for a few minutes while I ride. It’s enough. Even if it’s something my doctors have told me I shouldn’t.
I’ve altered my other escapes to be ones that are easily consumed at minimal energy expense; these include TV shows, movies and video games. I live vicariously through all of your lives, your vacations, your passions, your love. My heart melts every time I see any of you truly happy. Many friends getting married, people exploring the world, new puppies and kittens, or even the excitement of a concert or a movie premiere.
Sadly, everyone has been tied up with the state of the US and global affairs that their focus on social media has moved toward on rhetoric, anger, sadness, frustration and so on. I understand though. This is the time for difficult feelings. If I had the energy I’d be right there with you. Just don’t forget to live a little outside the macro of the world. Live in the micro moments as well. Beautiful doses of happiness can be found there.
This letter is starting to get long, I apologize about that. What I’m writing this for is to let you know that I care about you all very much and to tell you what was going on with me before I hit radio silence in the hospital, whenever that may be. I hope to see you soon afterwards. Those that know me really well know how hard it is for me to share something like this openly. But the uncomfortableness of my weaknesses (I never want to be pitied) is outweighed by the fact that you are all extremely important to my life.
Most of you probably think this doesn’t apply to you, that we are just friends on social media or may think I barely know of your existence though we may talk on rare occasion. You are who I am talking to as well. I tend to worry about who I outspokenly call friends as I feel like many of my friends may think of me simply as an acquaintance. That I may value our relationship more than they do. But it’s too late to worry about that anymore.
I hope after all this is said and done I can build better relationships with all of you around me, instead of worrying about dragging people into the toxicity of worry and sadness about my situation. I’ve separated myself from you all for some time, that will change soon enough. I’ll always be an introvert at heart. A little prodding may be necessary. So when I am back on my feet never hesitate to ask me to hang out, I’ve probably wanted to hang out with you for as long as I’ve known you. My heart has plenty of room for you all.
Even though I’ve had what many explain to me is the shittiest situation a human being could possibly be dealt I still feel extremely lucky in life. I’m healthier than most in my condition. It’s all about perspective. Perspective is something we all tend to overlook from time to time. So many people are suffering in ways that are insurmountable compared to my perspective, whether it be physical or emotional. Maybe it’s hunger, maybe it’s fear, maybe it’s heartbreak, maybe loneliness or illness. I ask you to care for those people as you care for me. Please.
I am banking on coming out of this an entirely new and healthy human being. My doctor reminds me that if my transplant goes as planned I’ll feel better than I have ever felt in my entire life. Thats 36 years so far. How do you even fathom such a change after 36 years? I have no clue. But I do know that my life is going to be full of adventure, explorations, experiences and growth. I’ve already accomplished some great things in life, under the duress of illness. I can’t wait to achieve so much more in a healthy body.
Here is to greater things to come. Here is to this prolonged moment ending and a new chapter beginning. Here is to new life.
Just ring already, phone.
End Note: Organ donors are in limited supply, a surprisingly low number when opting in to becoming a donor is so easy. Sadly only around 30 total liver transplants happen per year in the SF region. That’s all of San Francisco and surrounding cities. Hospitals included here are CPMC, Stanford and UCSF. This means many good people end up dying before they get the chance to receive a liver. Don’t let that happen. Become an organ donor. If you have a rare blood type, I beg you even more to become an organ donor. The lives of many others like me depend on it. Go to OrganDonor.org and get started.