Ian

When someone dies, people don't know what to say to the survivors who loved them. I understand that, and I try always to look at the heart behind the words, and accept the intention regardless of how it was worded.

When my father died, most people were as kind and lovely as you would expect, but, surprisingly, a few people contacted me to comfort THEM. And it made me angry. They tried to get me to say that he didn't suffer. But he did. They demanded that I say that he was in a better place, and that I felt peace, and any number of things, so that they would be freed of any momentary discomfort they felt around talking to someone whose remaining parent had died.

There hasn't been any of that with Ian's death. People who knew him have either genuinely missed a friend, wished they had made peace with him, or extended sincere love to me because they know that my heart aches.

So what I'm about to say isn't about anyone saying the wrong thing to me. Nobody has. It is just an explanation.

Ian was refused a heart transplant because he had dedicated his life to helping bullied kids at the expense of holding down a steady job with a steady income. People used to talk about the alleged "Death panels" that "would" exist "if" the US healthcare system changed. All of these conversations were happening in the news while I and my family were trying to convince a very real, very existing "Death panel" to put my brother's name on a heart transplant list that would save his life. Because we would do whatever it took to come up with the money for anti-rejection drugs after the transplant.

I have, in the past, been involved in political activism, but for the past few years I haven't talked or written a lot about political issues, because they have not been theoretical for me. Honestly, I have not been up to having a sanitized conversation about whether or not people who had little money should be allowed to die.

Ian was not the only person who was failed by not being put on the heart transplant list. His work also died. Those bullied kids no longer had a teacher, no longer had this person who took an interest and provided them a safe place where they didn't feel like they needed to be cool and fit in.

There is a big difference between an adult who "conforms" starting an after-hours club for kids and trying to reach them, and someone who has been there--and is still there--showing them that they have worth.

So when bullying has made the news, or another school shooting has happened because a bullied kid snapped, I've stood back and watched as people argue about how to "reach these kids." But the truth is that no well-intentioned government program is going to fix the problem, because as a society, we fundamentally DO NOT CARE about these kids.

What I mean by that is that the panel that ultimately decided whether Ian would live or die looked at the fiscal value of his work. His eligibility for a heart was based on whether his life's work would generate the income to BUY this heart. The VALUE of his work was monetary. This is the true opinion of our society--the one that emerges when you strip away the rhetoric. The work my brother was doing was not valuable. Redeeming these kids was not valuable, because it did not generate a profit. He had made a choice to pursue a line of work that would not earn enough to buy a heart, and so he could not reasonably expect to receive one.

When we talk about the worth or value of a painting, these words mean monetary value. But, realistically, we have created a society in which money is inextricably linked to those words.

If school programs are axed, the first question that is asked is "Will this program improve my child's ability to earn funds?" The programs the most at risk are the ones who give "probably not" for an answer.  You cannot create a society that consistently shows kids that value lies solely in net worth and then expect them to believe otherwise because you say some words.

I understand and can kind of accept that things need to be paid for. You can't just be lazy and expect for the world to take care of you. But the problem is that there is no actual link between the effort involved in a day's work, and the funds received as a result.

I have a very brainy desk job. I work very hard. The person who cleans the building in which I work also works hard. I probably use my brain more, but he definitely uses his brawn more. He could not do my job. I could not do his. Do I deserve a heart more?
So, yes, I hear that if you receive something you should pay for it. It would not be fair for you to take my book because you deserve it, and leave me with nothing. But...

Since Ian's death, I've thought about the fact that he was an organ DONOR. We would be horrified by the thought of a person registering as an "organ seller" at death--about a system in which my family, for example, would have received funds for the corneas that he gave away. Or the family whose loved one had donated a heart that could potentially have been given to him would have received funds for it. Something inside us reacts so negatively to treating a heart or a cornea the same way that we would a book.

But they were not free to the recipient. Money exchanged hands, but we have couched it in terms that make us OK with it. We can simultaneously pass judgment on the person who expects to RECEIVE an organ free of charge, while condemning someone who expects to receive funds for parting with it.

But here is the thing: I can acknowledge all of these things. I am aware of them. When Ian was alive, sometimes I became angry about them. Sometimes I tried to do things to convince others, or to change the system.

But not now.

Ian may have died because of a broken societal morality, but that is not what his death is about.

It's about Ian. It's about a brother that I love so much that I cannot put that statement in the past tense.

If there is ever a time when things are not about the bigger picture, or society, or someone else's bullied children, it is when you die.

I was often angry when Ian was alive, and I often fought to try to make things better. Maybe someday I will care about other people, and say something like, "I don't want anyone else to lose their brother to a broken system the way I have."

But today I do not. Maybe that makes me a bad person.

All of what I have written above was things I know, logically, to be true. But there is no fire behind them. No anger, resentment, or animosity. I don't want revenge, vindication, or even justice.

All that there is room in my heart for is Ian. Saving someone else's kid won't bring him back. Changing the laws or society won't give me a sense of accomplishment, because today I do not care. A "better world" would be a better world for other people, without Ian's dreams or company or very bad puns. And today, that is not worth fighting for.