The Diaper Problem
It all started during dinner with the Rosenthals.
It was something that Cathy and I had been looking forward to for weeks. We met Dave and Michelle Rosenthal at the orientation for Leo’s daycare, and we’d hit it off. Okay, we sort of hit it off. Dave and I chatted about the baseball game that weekend, and Michelle and Cathy talked about potty training or bras or whatever the hell women talk about. When we left the orientation, Michelle said to us, “We’ll all have to get together for dinner sometime!”
I told Cathy that they didn’t really mean it. Of course they didn’t. They didn’t actually want to be friends with us. We’re not the kind of couple who has friends—not in any real sort of way. I make people feel awkward, and the conversations are always stilted with big phony smiles, and patronizing nods. And wondering when the soonest they could leave would be without it being outright rude.
But Cathy told me I was wrong. “They could become friends,” she insisted.
“Whatever,” I said, mostly to annoy her since she recently read me an article claiming that “whatever” was the most overused and pointless word in the English language.
“You’re wrong,” Cathy insisted.
Then, against all odds, two months later, the six of us are seated in our dining room. Me and Cathy on one side, Dave and Michelle on the other. Leo and their son Wesley are on either head of the table, both strapped into their booster seats. But nobody at this table is strapped in better than I am. I’ve got straps across both my feet, nailing them down to the footrests, a strap across my thighs, one across my chest, and one pinning each of my arms down in the armrests. If a tornado blew through this house, it wouldn’t be able to separate me from my wheelchair. Which is a damn good thing because I’m not going anywhere without ol’ sip and puff.
Dave and Michelle are doing a great job of pretending the wheelchair doesn’t exist. Because really, that’s all you can do. You can’t comment on it, you can’t ask questions—you just have to pretend it’s not there. Despite the fact that I’m strapped into a gigantic chair with a great motor but horrible turning radius, we have to pretend that I’m just sitting normally at the table like everyone else. La la la, happy couples, nothing abnormal here.
Unsurprisingly, the Rosenthals aren’t making a lot of eye contact with me.
“I was so psyched to get a spot at that daycare,” Michelle says to Cathy. “They’re hard to get into, I heard.”
“We heard the same thing,” Cathy says. “But they have perfect hours for my job.”
“Oh, what do you do?” Michelle asks.
“I’m a paralegal.”
“Oh!” Michelle smiles. “That sounds so interesting!” She glances at me briefly before quickly looking away, probably unsure whether or not that constitutes staring. “And Jamie, do you… I mean, can you…?”
I decide to put the poor lady out of her misery. “I work in web design.”
“That’s so great,” Dave says.
I try to smile. This dinner is already so fucking awkward and we haven’t even gotten to the food yet. And that’s when the real fun begins.
A timer dings in the kitchen and I know that the food is ready. Cathy leaps out of her seat and I… just sit there, obviously. I can’t help out in the kitchen. That’s a given.
The women go into the kitchen together, leaving Dave and me behind. I’m sure he’s wondering how I’m going to eat. At the orientation, there was food, but I didn’t touch it. I have a bottle of water that’s attached to my wheelchair with a long straw jutting out that I can take sips of during the day. Fluid balance is a real issue for me—too little and I risk bladder infections, too much and my leg bag will fill too quickly.
When Michelle and Cathy return, they’re bearing plates of food. Cathy has mine—it’s the one with the meat on it pre-cut. She usually does that to save time when we’re eating, but I hate the way it looks right now, the way it labels my own food as different. For the millionth time, I wonder why we suggested dinner. Couldn’t we have just gone to the park together? This is so fucking awkward.
Cathy has made little bowls of mac and cheese for the kids. The macaroni is shaped like Spongebob Squarepants. They both seem thrilled with their food and immediately dig in with their fingers, pointedly ignoring the little plastic forks that Cathy has provided.
And then we dig in to the chicken and mashed potatoes that Cathy has painstakingly cooked for us. Of course, I can’t dig in. Not in any real sense of the word. Cathy has to feed me. She’s been feeding me dinner every night for the last five years. In the morning, I have a home health aide who feeds me breakfast. And at lunchtime, one of my parents comes to feed me. I haven’t fed myself a meal in five years.
It’s one of those things that was too awful for words back when I first got injured. But now… it’s normal, most of the time. I’m used to everyone else having to feed me. It would almost seem weird to be able to feed myself.
That says, I hate how it looks to people who aren’t used to it. Sometimes Cathy will whine that we never go out to restaurants anymore, but the last thing I want is for everyone at Chili’s to see my wife having to spoon feed me my meal. Everyone stares. Everyone feels sorry for me.
And they wonder to themselves: if he can’t feed himself, what else can’t he do? Can he dress himself? (No, I can’t.) Can he bathe himself? (No, I can’t.) Can he brush his own teeth? (No, I can’t. Are you seeing a pattern here?) And while I have no proof of it, I’m sure they’re all wondering if I can jerk off.
I can’t. Obviously.
In any case, I can sort of fake it when I’m gliding around in my wheelchair. According to my discharge summary when I left rehab, I’m “modified independent for mobility.” Meaning I can move around in my wheelchair without anyone helping. I was dependent for eating, grooming, bathing, dressing, transfers, and toileting, but independent for mobility. So when people see me moving around, I can pretend that maybe I’m just a normal guy in a wheelchair. But when I’m being fed, it highlights just how much help I really need. For fucking everything.
So that’s why Dave and Michelle are pointedly trying not to stare as Cathy pushes the first bite of mashed potatoes into my mouth. And of course, we’re going to pretend like it isn’t happening. Yet another giant elephant in the room.
Leo stuffs a huge handful of macaroni into his mouth and much of it dribbles down his chin, almost in unison with Cathy misjudging how open my mouth is, causing mashed potatoes to dribble down my chin. Cathy looks between us, as if unsure whose mouth to wipe first.
Me! You wipe your fucking husband’s mouth first! Always!
She makes the right decision and wipes my chin so I don’t have to sit there with a dirty face longer than I have to. Michelle wipes Wesley’s mouth at the same time, and comments, “They’re so messy, but it’s so much easier now that they can feed themselves, isn’t it?”
And then her face turns bright red. I almost feel sorry for her. Almost.
“I want to feed Daddy!” Leo speaks up, lifting his little double chin. He picks up his plastic spoon, scoops out some mac and cheese, and holds it in my direction.
“Not now, sweetie,” Cathy coos at him.
“I want to!” Leo yelps, his tiny face screwing up in the beginning of a tantrum.
This is partially our fault. We do let him feed me sometimes. After all, he can, and it makes Cathy’s life easier sometimes. When he first wanted to do it, I said absolutely not, no fucking way my toddler was going to feed me, but it actually turned out being sort of cute. He feels like he’s helping and I get fed, which is obviously a necessity.
I recognize that as Leo gets older, he’s probably going to take part in more and more of my care. These days, my parents fill in the gaps in what my morning aide and Cathy can’t accomplish, but eventually, as they get older, it’ll probably be Leo filling in those gaps. If I think I’ll get through my life without my son ever bathing or dressing me, I’m probably deluding myself.
In any case, I don’t mind Leo feeding me when it’s just the three of us, but for the love of God, not in front of these people.
“Leo, calm down,” I tell him. Then I add, before things can escalate, “If you’re good, Mommy will give you a cookie after dinner.”
And it works. Thank fucking God.
Michelle laughs. “Well, good to know we’re not the only parents who resort to bribery.”
I want to say something witty, but Cathy has just shoved a mouthful of chicken into my mouth. Bad timing. Still, it looks like our guests are relieved to be on comfortable discussion territory.
“It’s a necessary evil,” Cathy says.
Dave nods. “We’ve definitely stepped up the bribery since we started potty training, but it isn’t helping. Wesley doesn’t want to know from his potty.”
“How is Leo doing with that?” Michelle asks.
“He’s doing good, actually,” I say. “We set up a sticker chart to reward him.”
“And every time he uses the potty,” Cathy adds, “we tell him what a big boy he is.” She smiles at Leo. “You’re a big boy now, aren’t you? Soon you won’t need your diapers anymore.”
Leo beams at us. “I’m a big boy!”
Dave and Michelle laugh, and this time it isn’t awkward. And I think to myself that maybe Cathy was right. Maybe these people could actually be friends. Maybe I was being pessimistic in assuming it wasn’t possible. This is actually going sort of okay.
And then Leo says:
“And maybe you can also be a big boy, Daddy, and not have to wear your diaper.”
He heart drops. My son didn’t just say that. He didn’t just announce to everyone at the table that I wear a diaper. He didn’t.
A minute later, I realize that we should have just laughed and played it off like a joke. But in the seconds after he says it, I can only sit there in silent mortification. Also, I’m furious. I’m furious at Leo for saying that. But mostly, I’m furious at Cathy, because I told her I didn’t want Leo to ever see her changing me. She always says, “What’s the big deal? He’s just a baby. Anyway, he’ll be more curious if you don’t let him see.”
Less than an hour later, the Rosenthals are racing to their cars to escape what is most likely the most awkward dinner they’ve ever been a part of. We end the evening minus two friends.
I hate that I wear a diaper.
Hate it. Hate. It.
But unfortunately, I’m stuck with it. For the foreseeable future.
With a complete spinal cord injury, I have no sensation of when I need to take a piss or shit. A catheter goes through my stomach into my bladder, so that’s something I don’t need to worry about. But my bowel is a whole different story. When I was first in rehab, I started out in a diaper, and I was told by the doctors that we’d get things under control and that I wouldn’t need it anymore eventually. Well, that turned out to be dead wrong.
I have tried everything. Fucking everything. At one point, Cathy was doing a bowel program on me twice a day, in which she’d stick a suppository up my ass and I’d lie there for up to an hour, waiting to evacuate. And still, I’d have accidents. The doctor said that it’s because in the accident, I lost a portion of my intestines, and also because my lucky is shitty that way (literally).
So I wear diapers to keep my pants from getting dirty and from destroying my incredibly expensive wheelchair cushion. And I don’t mean I wear a little tiny, dainty pad in my underwear. Cathy and I actually did some serious research into adult protective undergarments and decided on Molicare Super Plus Adult Diapers. I wear the overnight ones because any less support than that and there’s a risk of leakage. Luckily, I don’t have to worry about them crinkling when I walk and it’s unlikely they’ll be visible through my clothes, so we got the bulkiest ones. There are times when I see myself in the mirror, and I’m certain you can see them, but Cathy tells me I’m imagining things.
Even though it’s wonderful to have a son, it’s also really painful to see him reach all the milestones I’ve lost. I’ve watched Leo learn to feed himself. I’ve watched him learn to walk. Fuck, even when he learned to sit up on his own, he was doing something that I’m not capable of anymore. And now he’s going to get out of diapers while I’m still stuck with them.
Like I said, I hate this.
Cathy and I are a little subdued as she does my bedtime routine. She uses our Hoyer lift to transfer me from my wheelchair into bed, something that used to feel weird but doesn’t anymore. There’s a cradle that goes behind my back and a part that goes under my legs. She hooks the two ends to the lift, and when she presses a button, it lifts my body into the air. Then she can swing me over until I’m hovering over the bed before she lowers me onto the bed. My body usually gets a little twisted in the process, so Cathy has to rearrange my limbs as she pulls the cradle out from under me. I can’t help with this at all. Once I’m out of my chair, I can’t do anything.
Once I’m in bed, she starts undressing me until I’m down to my undershirt and that goddamn fucking diaper. Cathy feels the diaper with her hand and peeks inside it briefly, murmuring, “Clean.” I can see my suprapubic catheter protruding from my lower abdomen, leading to tubing that attaches to the semi-full bag of piss attached to my thigh. She unstraps the bag from my thigh, and replaces it with the larger bag that I use to get me through the night, which hangs off the side of the bed.
“I want to see a doctor again about my bowel program,” I blurt out.
Cathy is on her knees, plugging my wheelchair into the charger so it will have juice for tomorrow. “Huh?” she says.
“I just…” I roll my head to look at her. “I’m sick of the diapers, that’s all. Maybe there’s something new I could try.”
“Jamie…” Cathy looks incredibly tired. I feel a little bad because I know all the experimenting with my bowel program was hard on her when we did it the first time. But then again, it’ll be easier on her to not have to clean up my accidents, which happen several times a week. “You know we went through all this.”
“I know, but…” I squeeze my eyes shut. “Cathy, I’m 35 years old. I don’t want to wear diapers anymore. And…” I take a deep breath. “I don’t want Leo to be humiliated that he has a dad who wears diapers.”
“If there were actually something we could do about it…”
“You don’t know there isn’t.”
“Yes, we do.” Cathy shakes her head. “I don’t want to go through all that again.”
I grit my teeth. “Fine. If you don’t want to take me to the doctor, I’ll make the appointment myself and hire the wheelchair van to take me.”
That’s an empty threat and we both know it. I’m not going anywhere by myself. I can’t even get through a fucking door by myself—how could I possibly go to the doctor? I can’t fill out any paperwork, I can’t pay my co-pay, I can’t retrieve my insurance card from the drawer where Cathy keeps it, and if any blips came up along the way, I wouldn’t be able to deal with them. I basically can’t go anywhere by myself anymore. It’s not impossible maybe, but it would be frightening as all hell. Any time I leave the house, I’ve got either Cathy or one of my parents with me.
And anyway, since Cathy helps me with so much of my care, she would have to be intricately involved with any changes that are made. So she needs to be on board with this. Or else it’s not happening.
“Please, Cathy,” I say. “Let’s just see what the doctor has to say. If he says it’s not going to happen, I won’t mention it again.”
Cathy sighs. “Jamie, I really think you need to get over this. It’s not like there aren’t things about myself that embarrass me.”
Like what? That her breasts aren’t as perky as they used to be? That she’s got a few stretch marks on her ass? “This isn’t in the same league as that, and you know it,” I say. When she doesn’t say anything, I add, “I mean, wouldn’t you prefer it if your husband didn’t wear a diaper? Isn’t it…” I feel my cheeks growing warm. “A turn off?”
“Jamie…” Cathy shakes her head. “It’s fine. I don’t mind that you need it. I told you that.”
She doesn’t mind. Yes, she did tell me that when it became clear all those years ago that I was stuck with it, but I never felt convinced. Sometimes I really wonder about Cathy, because she’s been helping me with all this sometimes gross personal stuff for five years, and it seems impossible she could muster up any attraction to me after all that.
“Also,” I say, “maybe if we got things under better control, I wouldn’t have accidents when we were… you know…”
I can’t even bring myself to say it. There are times when Cathy and I are having sex when I shit myself. The truth is that lately, it’s been hard for us to have actual intercourse without me having an accident—it’s basically my finale. Cathy’s been infinitely cool about the whole thing, pretending that it didn’t happen and then sweeping away the chuck we use for protection at the end of it. And we don’t have intercourse sex very often, since it takes both a pill and an injection for me to get a hard-on, which I can’t even feel. More often, I eat her out—a skill I’ve perfected over the years. I’m good at oral sex. I’ll allow myself a pat on the back for that one.
If Cathy really wants to be fucked, we’ve come to prefer a strap-on. Yeah, it’s emasculating to have to strap on a dick when I’ve got a dick. But my own is pretty much non-functional, and the strap on eliminates my fears about losing my erection as well as reducing the chance of my having an accident. It goes on top of my own dick, so it can sort of pretend it’s mine during the act. I don’t bitch about it like I used to.
Still, it would be nice to be able to fuck my wife with my own goddamn dick without worrying about shitting the bed.
I can see the wheels turning in Cathy’s head. As much as she acts like she doesn’t care, she does. She’s got to.
“Okay,” she finally says. “I’ll call the doctor.”