I know what you’re thinking. Just hear me out.

Sometimes I wish my dad was dead. Not in the teen-angsty “I hate my life/I hate my parents/Nobody understands me” way. More so, in the way that I think he, and many others, might be better for it.

I know, I’m a terrible person. I feel terrible for thinking it. That’s why I need to talk about it.

There are a lot of kids out there that can probably relate to our story, and need to know that it’s okay to feel this way sometimes. I say “our” story because it is about me and my dad, not just one or the other.

Now, we have to take this back a bit.

My dad is a Vietnam Veteran. Went to war at 19, believing he was doing the right thing for our country and the people in it. Not long after arriving on the other side of the world, however, did he realize the amount of BS that soldiers were fed when going into this foreign country. This could be a whole blog post in itself, but the main purpose for explaining my dad’s military service is to introduce the fact that he was exposed to Agent Orange.

Agent Orange was a chemical defoliant used to kill plant life in the jungle-like country side to take away the Viet Cong’s advantage of constant cover and camouflage. Over 19 million gallons were dumped over the country. Troops used the empty barrels to shower and store food in. Since they were told it was perfectly safe for humans, they walked right through sprayed areas without a single thought about protecting their skin, eyes, or lungs. They drank from and bathed in bomb craters filled with the stuff. It took a long time, but Veterans are finally being heard in their cries of injustice, as Agent Orange has had devastating effects on all of those exposed. You can do more research on this yourself, but it’s absolutely appalling the way that the government continues to deny any wrong-doing and claims very little responsibility. Again, I could go on and on about this forever.

One effect of exposure to Agent Orange is the development of Type II Diabetes. I’m sure many people think, “Hey, I know tons of people with Diabetes, and they’re fine.” Well, it’s not quite the same. This secondary type of “Type II” is much more debilitating. Along with the Diabetes, my dad suffers from a chronic skin rash that pretty much every person who served in Vietnam came home with, and he contracted Hepatitis C while in Vietnam. The same needles were used to give everybody their inoculations (picture a human assembly line with several nurses injecting each soldier that stepped in front of them), he was wounded in combat and received blood transfusions, had his wisdom teeth removed, and as an interrogator was frequently exposed to wounded “enemy” soldiers. Veteran’s Affairs claims his records were “lost in a fire” (which they’ve told pretty much every Vet that has requested service records….really, look it up.) so he couldn’t get service connection for it.

Many many years later, I was born. Oops. My dad was 42 then, and just recently diagnosed with liver failure (a lovely side-effect of Diabetes and Hepatitis). He was still in the early stages so he wasn’t in dire straits yet. When I was 11 he was hospitalized for the first of many many times, as his liver REALLY started sucking and he was getting moved up the transplant list. This was a total shock to a kid that had no idea anything was even wrong. When I was 13 we were on vacation together and he was hospitalized once again, this time for a few weeks. When he woke up from the coma he was put in, he had forgotten the last 7 years. He forgot his brother’s death and didn’t recognize me, since he last remembered me being 5 years old. He never fully recovered.

Fast forward through the years and there were numerous hospital stays and two different nursing homes, before finally finding our wonderful live-in nurse who we absolutely adored.

I forgot to mention that my mom was taking care of EVERYTHING for him, even though they were divorced, because she wanted me to have a father. You rock, mom.

I guess you could say that this is where I started developing a bit of a “complex” if that’s even the right word for it. From 6th grade on, every time the phone rang in my classroom, I thought my dad was dead. In the mean-time, while my dad still had some independence, he didn’t take care of himself and did things that negatively impacted his health. I couldn’t stand to be around him because I hardly had any memories of him before he was sick. All of this also caused all-out warfare in my family, between my dad’s two sons from a previous marriage and my mom, who they never liked. My mom is one of the greatest people on earth, so f*ck them. I was manipulated and let down a lot. That, again, could be a blog post in itself (lol but not really “laughing out loud” ’cause it sucks).

My dad received a healthy liver transplant shortly after my 16th birthday, and to say that I had never felt such joy in my life was an understatement. Everything was going to go back to normal. My dad could come back to coaching softball. I could actually start staying with him again because I wouldn’t have to call 911 when he went into shock in the middle of the night.  He could go back to work and send me to my dream college. I would be able to see my friends again that lived in his neighborhood. I even thought everything would be okay with my brothers, and they could teach me to play instruments and draw. The artsy stuff was really the only common interest we shared. I stopped into school during the day (my mom told me in the middle of the night she was going down to the hospital, since she was his Power of Attorney, and someone else would take me to the train station later). As I collected my work for the next few days, I told ALL of my teachers the awesome news and that I would be out for a few days while my dad was in recovery. It was quite literally the happiest day of my life.

When I got to the hospital I was surprised to see that my dad was wide awake, which was incredible because most transplant recipients are out for two or more days following the procedure. He was his old self again. He could understand what we were saying, he was quick to respond, his memory was 100%, he wasn’t slurring his speech, and he was even making his dumb dad jokes that only dads make. For those that don’t know, organ failure affects the mind quite severely. It was the first time I had seen my dad, my actual dad, in several years. I never slept so great as I did after leaving the hospital that night.

The next day, my mom looked at my dad’s incision and noticed that it was starting to look infected. He was also getting “foggy” again, talking slowly and having difficulty responding. Uh-oh. I tried not to let it put a damper on the experience we had the day before, but the fear started creeping in again. By the next day, his brain was back to it’s worst state. Nobody knows what happened, because liver recipients are usually back to them old selves relatively quickly. The way I explained it to myself was that the infection somehow attacked his brain, but I don’t have enough knowledge on the subject to even know if that’s a thing that can happen.

So, the dread was back. I went back to school, and while everyone excitedly asked me how he was, I was simply cordial and appreciative of their concern. I still worried every time the phone rang. His diabetes got worse. He never got his memory back. He couldn’t care for himself.

A few months later my brother took over for his care, and decided to let our live-in nurse go, and just have a visiting nurse from the local hospital come in to check on him during the day. I don’t think it would be an exaggeration to say that an ambulance was called at least twice a week that summer. He went into insulin shock countless times and even suffered two heart attacks as a result. By the end of the summer he was in a nursing home, where he still resides today, nine years later.

I know that I’m supposed to be grateful that my dad received the transplant he needed in time. I’m supposed to be grateful that he’s still alive. I really am, grateful though, about how much I learned about the importance of organ donation. My dad’s isn’t the happiest story, and not exactly a transplant success story, since he was never able to regain his quality of life. The doctors consider him a success though, because he was expected to have five years with this liver, and it is just starting to fail now in year nine.

So, why do I sometimes wish my dad was dead?

For starters, I don’t really know who “my dad” is anymore. I visit him almost weekly in the nursing home, and we typically have the same short conversation every time, where he asks me the same questions about work, my mom, and talks about the visitors he had this week (whom actually came probably six months ago but he doesn’t remember anything day to day). I quit softball when I realized he wasn’t coming back to coach, and took it pretty hard when he couldn’t come to my graduation because he had a violent outburst while being picked up from the nursing home. I almost didn’t go. I know a lot of people don’t have dads that are able or willing to be there in these important moments, so many have difficulty understanding why I get so upset. See, my dad is alive. He’s supposed to be happy. But, he can’t be there for me. We’re in limbo. I feel stuck in a constant state of “my dad is dying,” which he is, but it is exhausting. It’s hard to “make the most” of the time I have with him when we can’t have a conversation, go out for a walk, or see a movie. I watch him wasting away, now with calves skinnier than my wrists and a protruding ribcage. He has no quality of life and he has no will to live. Not even for me, which sucks even more. I really do think that more could be done to improve his condition, but since I don’t have the means to care for him myself, I can’t make much of a difference. I feel an obligation to be present in his dismal life, since he doesn’t have much to look forward to and he depends on me for his constant supply of cigars and snacks. He’s my dad, so I feel like I owe it to him to try to care for him the way he would have taken care of me, if he was able. More than just the toll it takes on me, is the toll it took on my family. I will most likely never speak to my brothers again, since events that have unfolded in recent years made me realize that nothing positive could come from a relationship with them. I’m surprised my mom didn’t have a heart attack in all those years, while she managed his care and as a result almost lost her job, all while being verbally attacked and degraded by my brothers.

My longing for his passing though, is not completely selfish. I often think about the person who died to provide the organ my dad needed. This is not the way it’s supposed to go. The purpose of organ donation is to give another person a second chance at a happy, healthy, and fulfilling life, not just for them but for their loved ones as well. Somebody died, and beforehand thought, “Maybe my death can mean this little girl’s father can walk her down the aisle.” Okay, so maybe not that exact thought, but you get it. I didn’t get my dad back. He didn’t get a second chance at life. The pessimist in me can only think, “What a waste.” If my dad hadn’t made it to the date of his transplant (and I have no idea HOW he did), another person could have had that chance. Often for every one person that receives a transplant, two or three die waiting for the same organ. I should be grateful that my dad was “lucky”, but I think his chance could have been better used by someone else.

And now we’re back to limbo. I’ll never be able to have a meaningful conversation with him, but I will still go every weekend and tell him how old I am and where I live and what my job is. To him, it’s new every time.

Sometimes, I wish my dad was dead. Not because I hate him, but because I love him too much to watch this continue.