Big Baby

In 17 years, I can probably count on two hands the number of times my son has been unreasonable and I’d probably still have a couple of curled up, useless fingers to spare.

Those of you who are parents or prospective parents of babies, remember this: it sucks to be a baby. You don’t get to go where you want. You don’t get to defecate in any kind of receptacle – you just have to shit or piss in your pants. You sit stuck in a chair, watching people slowly prepare your food. You don’t get to eat when you’re hungry, you don’t get the amount on your spoon that you want, you don’t get to eat at the tempo you want. If your mom or your babysitter or your dad or whoever the fuck is feeding you is distracted, sometimes the fucking spoon doesn’t even make into your mouth. Now you’ve got food all over your cheeks. And whose fault is that? Not yours.

It sucks to be a baby.

If I were a baby, I would be absolutely insane, because my inner monologue would be, “Hurry the fuck up with that food, bitch. How long does it take to puree some squash?” But babies can’t even talk, so all they have left to their devices is to cry, and then we think they’re being unreasonable. Now compound that with the fact that they are so short that all they can see is everybody’s knees. They have to crane their heads up to look at their captors, except when people decide to get right up in their face and ask them stupid questions and they don’t even wait around for the answer.

If you have a baby that you think is being unreasonable I implore you, give me a call, and I can enlighten you on what it’s like from their perspective.

Which brings me to my topic of the day.

Now that I am in the same helplessness class as a baby, I find myself in an awkward situation. I have boundary setting fatigue and request making fatigue, because it’s hard to get people to take a request you made as some sort of global principle and figure out what needs to be done. So I find myself having to ask, every time the toilet paper roll is low, “Will you change the toilet paper roll?” Or, “Can you not get shampoo in my eyes when you wash my hair?” Or, “I don’t eat wheat or dairy.” To compound matters, while I am quite adorable, I’m not quite as adorable as a little baby so I worry that my bitching will get old quickly.

It’s fatiguing to have to give the same information out over and over again. So I find myself in this situation where there are only a small handful of people with whom I can relax and put my guard down, like my close girlfriends who have shifts that they regularly commit to every week to help me out. My other friends, who I love dearly, can’t keep up, not through any fault of their own, but because this disease is so changing and shifting. If you miss a couple of weeks taking care of someone with ALS, then you really can’t keep up with the program. Likewise, it’s challenging with caregivers because, in all but a rare couple of cases, I find that if people haven’t had kids, then they don’t know how to change along with the disease, because they’ve never had to practice that skill. I remember when Mac was a baby that every time I thought I had his routine down he would change it and I would think he was fucking with me but he wasn’t – He was growing up.

My level of anxiety around caregiver issues is increasing as it gets harder to talk. I know pretty soon, I’m going to be like that baby, unable to make demands and unable to articulate what is driving me crazy at any given moment.

Now let me stop and say this does not reflect a change in my attitude about life in general, about my gratitude towards the people in my life, etc., etc. I’m just letting you know that I have a new and deepened understanding about what it’s like to be that baby – crying because there’s something she wants and she cannot effectively communicate to people what that thing is.

Life is not cut and dry. You aren’t either in an untenable situation that you can’t imagine anyone else being able to bear, or in a situation where your circumstances allow you to see what a miracle life is and what a blessing it is just to be alive, sucking oxygen on this gorgeous planet. They both exist for me everyday, albeit the percentage of frustration has definitely increased as the disease has progressed, and why wouldn’t it?

Can you imagine having to ask someone to help you out of bed in the morning? To be forced to meet them at their level of cheeriness, even if you’re headachy, sore, and gasping for breath? To communicate with them, “Now I need the shower water a little hotter. Now a little colder,” and to deal with the fact that half of the time the water is not actually hitting your body? Then imagine your breakfast is served on someone else’s time table, and the coffee is not necessarily as weak or as strong as you like it, the eggs are never cooked quite the way you’d have cooked them if you were doing them yourself, the toast might be a little burned or a little bit underdone, and there’s never going to be the right amount of butter. Unless you micromanage, in which case, halfway through the day, you’re too tired to speak because you’ve shot your wad on breakfast. And you feel like you can’t complain because, by the end of the day, the food is going to be making you choke anyway, and there are only a few meals left, so you really have to enjoy the ones that you’ve got.

Now it’s 11 a.m. and you’ve barely begun your day. Someone joins you in the bathroom when you pee, someone puts you to bed to nap, and there’s ALWAYS somebody around, except on rare, rare occasions. That’s when you need something that you can’t get for yourself and you can’t lift your arm high enough to reach the cupboard, or you don’t have the strength to lift a water bottle and pour a little cup of water that somebody forgot to prepare for you before they left.

It is like running a marathon every day, only it’s 26 miles of good attitude, trying to find a way to set boundaries respectfully so as not to offend people, but strongly enough that people actually respond. Sometimes it’s hard to find the humorous thread in someone’s behavior, rather than succumbing to the lump in your throat you have because people can’t see that leaving something in the middle of the hallway makes it impossible to get from room to room in a wheelchair.

But here’s the kicker: the kicker is that there’s nobody to blame, just this stupid, stupid ALS. Because anybody who didn’t have good intentions towards me is not in my life anymore. The people that are here, whether they are able to take care of me or not, are people who genuinely care about me and who have made great efforts on my behalf. I’m under no illusions in that respect. I know how deeply I am loved, and I know how many sacrifices have been made on my behalf. And I know that there is a tiny minority of my friends who set the bar so astronomically high that Mother Teresa would be, like, “Really? You’ve got to be kidding me. I’m sorry, but I’m not Wendy OK? I’m gonna go back to healing lepers.”

Nonetheless, I am fatigued. I am worn out asking for what I want or accepting things that make me uncomfortable. I handle it the only way I know how, which is to try to distract myself with fun. But even that can feel fraught with peril sometimes.

Nonetheless, here is my solution to what ails me:


I am organizing a fundraiser for ALS research. I am getting 12 ALS patients to pose for a cheesecake calendar that can be sold to raise awareness and make a little bit of green and show people that people like us are just like people like you. I already have several people lined up to pose and wonderful friends who have volunteered to take pictures and to do calendar layout.

I am taking the Fuck Truck camping next weekend with a group of my wonderful friends.

I bought a beach wheelchair. Barbara and her husband took me to the beach yesterday, and I am hoping to get there at least once a week. I think that just breathing the ocean air will be a cure for a lot of what ails me. That and watching the kite boarders.

Some of my friends and I are getting together on Friday nights to watch movies in my backyard projected onto a big screen. We watched “Mystery Men” this week. And the night before, Mac and I sat out in the backyard and watched an episode of “ Rome. ” There is almost nothing I like more than hanging out with Mac and watching something gory and violent.

And speaking of Mac, he leaves September 16, and I will officially be living alone without my buddy. Please, please, please. Don’t write me or call me and tell me you know how I feel, because, unless you have a fatal illness and your actual days with your kid are numbered, you don’t. I’m sure it was sad for you when your kid went off to college, but you probably had a reasonably good expectation of being at his wedding and of hanging out with your grandchildren.

Do I sound bitter? Yeah, I probably do sound bitter today. But I have to listen, on a daily basis, to people who respond to my complaints with, “I know, me too.” If I say, I’m tired, please don’t say, “I know, me too.” I don’t believe you. If you hear me scream out loud and then double over in pain, and say, “I have a cramp,” don’t tell me you know how I feel, you have your period. Trust me, I used to have a period and there is no way that anything that has ever happened in the annals of periods could compare to the cramps that I have.

Wow. I sound like some mean old man today. I guess we’re all entitled to those days, and I guess it’s only fair that I share them with you, since so many of you have this moving but misguided idea of me as some kind of Superwoman on Wheels. It’s your Scooby Doo moment. The mask is off, and I could have gotten away with it too, if it weren’t for you pesky kids and your dog.

Oh, that reminds me. The other way that I am battling despair is I’ve commissioned Nata to paint the van. I love the idea—that gigantic monstrosity being even more of a spectacle, with mudflap girl on wheels, courtesy of Jenny, and any other crazy things I decide to paint on it.

It feels really scary to put so much negativity into one of these blogs especially when today I met a lot of amazing people at the MDA Telethon, including Jason Picetti, whose blog I will link to this one. Jason is younger than me, was diagnosed after me, and he has a gorgeous little baby girl. I’m sure he has his dark moments but he was so positive and upbeat and inspiring. You should read his blog but I caution you that the beautiful way he writes about this wife will make you cry your ass off.

Still I’m going to post the blog without purging it of the complaining… otherwise I won’t be posting this week. (This would be a perfect place to type LOL if I were ever able to bring myself to do so in a non-ironic context. If you are the kind of person that likes text language then you can imagine I said LOL and then you can ROTFLMAO) I get concerned about saying things out loud and giving them more power. I don’t want to give these bad feelings more power than they already have. But at the same time, they’re there no matter what I do.

At least, maybe if I share them with you, you’ll be a little more patient with your baby. Or with someone you love who has ALS or who is elderly or who is just acting like a big baby.