Just a warning: I'm about to get a lot more serious and more personal than I generally do. And also use some bad language. Bear with me, though.This is important. I've been meaning to say these things literally for years, but have
never quite had the guts to do so. But I just saw the
C-SPAN video of Seth Rogen addressing the Senate hearing on Alzheimer's research, and I
realized that I have to tell my story too. Because, as Mr. Rogen said, we can't just whisper
the conversation anymore. We need to shout it.
There's a popular catchphrase that's been circulating around the Internet for awhile now. I've seen posters and graphics of it, as well as people just expressing it in general conversation: "Fuck Cancer." It's a sentiment I can certainly get behind. Cancer is a terrible, awful disease that causes terrible pain and has claimed more than one person that I love. So fuck cancer.
But at the same time, sometimes it seems like the conversation is ALL about cancer. I see memes about raising cancer awareness, or in memory of people who have died of cancer. I see charity drives to raise money for cancer, and I see cancer research... That's all extremely important. But I almost never see anything about Alzheimer's. It's very rare that there's a real conversation about Alzheimer's and what it means. So I would just like to go on record as saying: Fuck Alzheimer's.
And I believe I'm qualified to say that, as I've witnessed both firsthand.
When I was 11 years old, my 15 year old brother Matthew died of cancer. It's not something I like to talk about, mainly because no one ever knows what to say. Including me. But even though I don't talk about it, that ordeal has defined who I am probably more than any other event in my life.
The last 8 weeks of Matthew's life were spent in the Intensive Care Unit at UCLA hospital. He was in pain a lot of the time. He couldn't breathe without a respirator. On several occasions, he couldn't even move, because they gave him some sort of drug that completely paralyzed him. He had a dialysis machine, IVs, chemotherapy, a new surgery just about every week, and more doctors than I care to remember. For years after he died, my biggest fear was that I'd go the same way. Not that I'd die young, but that, when I did die, it would be at the hands of a terrible disease that destroyed my body bit by bit and kept me in pain. I was terrified that I would die that way someday, and I prayed with all my heart that I could go any other way but that.
Then, about four years ago, my dad was diagnosed with Alzheimer's. And very, very quickly, I changed my mind. If somehow, I were to be given a choice, between cancer and Alzheimer's, I would choose cancer, every time.
Even though Matthew was physically a wreck, in pain, and hooked up to machines... he was still Matthew. He couldn't talk, because of the respirator, so he would write. And boy, did he write. My mother still fondly recalls what one of the nurses said to her: "Most people just write a few words to communicate what they want. Matthew writes PARAGRAPHS!" That was Matthew in a nutshell. He even gave me one or two written brotherly lectures. No matter what the cancer did to him, no matter what it took from him, it couldn't take away who he was.
But Alzheimer's can.
At first, my dad was able to make light of it. It became a running joke with him and my mother. He'd turn to her in the middle of a conversation and say, "Honey, what do I have again?" And she'd say, "Alzheimer's." It was funnier in context.
Or there was the time that the three of us all sat down to plan out his last wishes, while he was still cogent enough to express them. We had a long list of questions from his insurance company about what kind of care he wanted, how he wanted to be remembered, and all kinds of other things. And somehow, every question led to a silly and ridiculous answer, until all three of us were practically head over heels, laughing at this questionnaire about my father's eventual death. It may seem crass, but that's just what my family is like. It's the kind of person my dad was.
He's not like that anymore, though. He can barely express himself now. A lot of the time, he hardly knows what's going on, and doesn't understand it when you tell him. It used to be that he just couldn't think of the words for certain things. Now he can hardly think of any words. He'll have something to say, and it's obviously important to him, but no matter how hard he tries, he can't get it across. And no matter how hard I try, I can't understand it. I nod and agree if I can, but there's no real communication going on. And it eats me up inside that I can't talk to my father.
I mean, I can still talk to him sometimes. Some moments are better than others--it fluctuates from moment to moment, not from day to day--and while even at the good times, he still can't really think of the right words, he can at least make himself understood, and understand what I'm saying to him. But we can't really talk like we used to. He can't tell the stories that he used to, or even remember that they happened when I remind him. I'll talk about some of my fondest memories from childhood, and he'll look at me blankly.
Whenever someone says to me, "Tell your dad I said Hi," I know that I can't actually do it, because he'll have no idea who they are. He won't know them by name, he won't know them no matter how much detail I describe them in... If I say, "It's someone you used to work with," there's a chance he won't even remember working there. He might remember them if he sees them, but then, he might not. And even if he recognizes their face, it's likely as not he won't actually remember who they are, or the role they played in his life.
Every day, he has a harder time of things. Every day, he remembers a little less, fails a little more. I know the day is coming when he'll look at me and not know who I am. It's already starting down that direction. Sometimes he'll look straight at my mom and tell her all about what "that woman" did an hour ago, completely oblivious to the fact that "that woman" is her. And I know it's only going to get worse from here. For the moment, he can still dress himself and feed himself, albeit with the occasional reminder not to put a knife in his mouth. But that'll be gone too, sooner or later. Probably sooner. The doctors all say it's happening faster than it should be. What will it be like a year from now? Will he have any idea what's going on around him?
Deep down, I know he's still the same person he was. Underneath it all, there's still an inkling of the great, caring guy with an unabashedly quirky sense of humor. Even without knowing the words to use, he can still crack a joke once in awhile--the kind that only my dad can make. He's my dad, and he always will be, and I love him. But the memories we shared, we can't share anymore. It's like they've been erased, along with so much of what made him who he was. And even though I know he's still the same person, it's hard sometimes not to look at him and see a stranger.
So yeah, fuck cancer. No 15 year old should have to go through that, and no 11 year old should have to watch it. But even more, fuck Alzheimer's. You're not just taking my father from me. You're taking away the man he was, one piece at a time.
