You’ve been having some trouble with your bowels, so we’re at the gastroenterologist’s office. The nurse leads us into an exam room and says, “Okay, just hop up on the table.”
I laugh because I think she’s making a joke. It’s clear you can’t hop. If she looked closely, or looked at you at all, she would see that your legs are completely flat and that you don’t have much muscle control in your arms, either. She’s looking instead at the chart, which apparently isn’t very informative.
I look at you and you look back at me. We communicate with our eyes that this is a bad start.
“No hopping,” I say.
She stares at me.
“He can’t hop. He can’t stand. He uses a lift to transfer. Is that not in his chart?”
The nurse glances at you as if I might be mistaken about your ability to hop. Then she quick-steps out of the room, shoulders up around her ears.
“She can’t be mad at you,” I say.
You roll your eyes. It seems like she might be mad, but it won’t do her any good. Even if she held a gun to your head, you could not hop up on the exam table.
You are here because you’ve been feeling full and your stomach is so bloated you look eight months pregnant.
“Maybe you are,” I say. “We’ll be so rich if you have a baby.” You laugh. “You’ll be rich,” I amend. “I’ll be a hanger-on-er.”
The doctor comes in to tell us she can’t do the exam with you in a chair and that “someone” should have told her you needed a lift.
“Yes,” I agree. “Someone should have.” I take a breath and try to smile kindly, as if there’s been some honest mistake. “Isn’t it in his chart?”
“I only look at the chart when I come in the room,” she says.
We leave the exam room and wait over an hour for the van to come back for us. They reschedule your appointment and, at your next appointment, the gastroenterologist does the exam with you reclining your chair back as far as it will go because they still don’t have a lift for you, even though this time they’ve been given enough time to procure one. I’m not sure why they couldn’t have done the exam with you reclining in your chair the first time, but we don’t ask.
I leave the room while she does the exam. When she calls me back in, she recommends a colonoscopy. I ask if she has any idea what’s going on and she says you’re getting older.
“Is it in part because of the CP?”
She says she doesn’t know but, yeah, probably. She’s gone before we can ask any other questions.
We are in the Emergency Room. It’s two or three o’clock in the morning and you are here, not for the first time this year, because you have been vomiting feces. Your colon has largely stopped contracting, or it’s very slow in contracting, so once you’ve taken in more than your body can eliminate, you get backed up.
The colon, which is part of the large intestine, is a muscle whose job is to contract and push food through your body and then, ultimately, out. Your colon has more or less stopped being able to do what it’s supposed to do, in part because it’s lost its elasticity, probably, the doctors say, because the palsy part of cerebral palsy affects the way muscles behave. Also, generally speaking, as we get older, our muscles lose elasticity (hello, wrinkles).
The intern who floats in to put a stethoscope to your belly and see about a CT scan says, “He’s almost seventy and he has Cerebral Palsy? He’s lucky to still be alive.” She says this to me. She’s very young, and I try to forgive her, but your face is folded up with sadness, bottom lip over top, eyes wet with tears. You can’t even grab a tissue for the sake of dignity. I yank a paper towel out of the dispenser and hold it up so you can blow your nose.
“He can hear you,” I say. I say this quietly, but not so you can’t hear me, just quiet enough to make it clear I’m not yelling.
You have resumed crying. It is a cry of frustration, but also resignation.
“No,” I say. Because I don’t want you to give up. I’m not ready for you to die because I love you, love spending time with you, love your sense of humor. But I think I’d let you go if it was really time for you to go. It’s not time. This intern is just stupid.
There’s no denying you’re suffering, though.
The intern shrugs and floats out again.
Cerebral Palsy occurs at or shortly after birth, most often due to a lack of oxygen to the brain. The life expectancy of someone with CP is the same as that for anyone else, although there are various complications if you’re lucky enough not to die young. This intern obviously missed that day in class.
You type on your communication device. “Jennifer,” you say. “I think this is maybe the–”
“End” is what you’re going to say.
We are very tired. It’s the middle of the night and you have been vomiting feces and you are afraid and I’m afraid for you. This is the fifth or sixth time we’ve been in the ER in the middle of the night in just three or four months. You’ve had CT scans and X-rays and no one can find anything wrong and no one can help you stop vomiting feces. It is nearly impossible to vomit feces, just because of how the body is put together, which we’ve been told multiple times. You would have to be incredibly backed up (bowel-wise) for that to happen, and yet that’s precisely what has been happening. “If only your body could surprise us in more fun ways,” I say one afternoon after you’ve vomited smelly brown poop all down your shirt. You laugh, despite everything. It’s exhausting to be an anomaly, even when you have been one your whole life.
You have been on the edge, and now this intern and her very stupid observation has nudged you over.
I put my thumb over the place where the laser on your glasses connects with your communication device. Essentially, this is like putting a hand over your mouth, and it’s something I’ve never done before. I don’t want you to say you’re ready to give up because if you are, if you really are, I’ll help you. I’ll help advocate to stop treatment. I can help you fill out a Do Not Hospitalize form and the nursing home will no longer send you out. But I’m not ready for that. I’m crying, too.
“You’re alive,” I say. “And you’re going to stay that way.” I put my head on your shoulder and move my thumb off your communication device. “Say it if you need to,” I say. “But I’m not giving up.”
Later, while you’re asleep and I’m waiting for you to be admitted to a room, I find a pen and the back of my planner and start a letter to the HR department of this hospital. I ask if it’s common practice for medical staff to express astonishment that their patients are still alive. I say it’s hard enough to have a disease that makes it impossible to do so many things, but what makes it even harder are people like that intern who act like you should be grateful not to be dead. I say you’ve been fighting to stay healthy and keep a positive attitude. I say it’s unacceptable for someone to talk about a person as if he isn’t in the room. I say they need to include training on compassion for their interns. When I get home, I type and send the letter. I never hear back.
We have asked, on many occasions, to see a doctor who specializes in Cerebral Palsy. We have been told there aren’t any in Maine. We have been told, on a few occasions, that the doctor we’re talking to has or will consult with a specialist at Mass General. We have never heard the results of those conversations, in part because we never see the same doctor when you’re in the hospital.
I should probably do more to see about seeing a specialist. I should contact United Cerebral Palsy or call Mass General myself. But when you’re not sick, you don’t want to think about being sick. And when you’re sick, we’re just trying to manage your symptoms.
Besides, what will a specialist tell us that’s really different than what we already know? You have Cerebral Palsy. You’re getting older than anyone expected you would get.
I’m in the hospital waiting room. I have two books, pretzels, water, and cinnamon candies with me because I’m told this will be an approximately six-hour surgery. Steve will come later, when he gets off work. Until a few minutes ago, I was in the pre-surgery room with you. Then it was time for them to wheel you into surgery and I kissed your forehead and told you you’d be fine.
I have just sat down, just settled myself with a book, when the nurse comes out to fetch me.
“What’s happened?” I ask. Panic makes me want to flap my arms. “Has something happened?” I imagine you’ve died of fright, although you seemed just averagely nervous, not panicky, when I left you five minutes ago.
She leads me to the room where you’re positioned on your side and the anesthesiologist stands above you, behind you, so you can’t see him. He’s holding a needle. “I’m not really familiar with his kind of spine,” the anesthesiologist says. He gestures toward the nurse. “And she isn’t sure how to read his expressions. I need you to go on that side of him,” he indicates the face-side of you, “and tell me if it looks like he has any pain.”
Are you fucking kidding me? I stare at the anesthesiologist. I stare at the nurse. I look at you. You look back. Your brow is un-furrowed. Your mouth is relaxed. You trust me so completely it scares me. I close my mouth and stop yanking at the skin around my cuticles. Surely, they have a better method than this. The nurse and anesthesiologist look back at me. The plan, apparently, is for me to stand facing you while the anesthesiologist inserts a needle into your spine. If you feel pain, you will presumably make a face that I will be able to interpret as pain.
I go around the bed. I take your hand. I try to act like this is totally fine so you’ll keep your misguided trust in me. “Okay, bud. So, I guess I’m gonna tell them if they hit something they aren’t supposed to hit with that needle.” Which is very big, although I don’t say that. “So, what I need you to do is make sure you give me the most expressive face you can if you have any pain. Now is not the time to hold back. Okay?” You nod. The anesthesiologist asks, “We ready?”
I look at you very closely. I try to make my face as steady as possible. You look at me with trust and a tiny bit of fear. If I were you, I’d be crying my head off, but you’re composed. In all likelihood, this is not the worst thing that’s ever happened to you. “He is,” I say. I’m not, but I can’t very well tell them that because if they say they can’t do this surgery you will continue to suffer until you can’t take it anymore. I feel like I might pass out from the anxiety of what happens if I get this wrong—how much will it hurt if he hits “something” he isn’t supposed to hit? I know you—I’ve known you more than fifteen years at this point—but do I know the planes of your face well enough to understand a change? Will I recognize pain? I think I will. I hope I will. I’m more or less sure I will. But, will I be quick enough to speak up if there’s pain or will my uncertainty cause hesitation and in turn cause you more pain?
He inserts the needle.
Your face doesn’t move.
“Are you okay?” I ask.
You grunt yes.
“Is he okay?” The anesthesiologist asks.
I wait a beat to make sure you aren’t just saying you’re okay when you’re not okay. Your brown eyes are as steady as solid ground. I wish you could tell me for sure that I haven’t screwed this up. “He’s okay,” I say. And then I kiss your forehead and head back out to the waiting room.
Your colon weighs twenty-two pounds when it’s removed from you. In most people, the colon weighs four pounds. By the time the surgeon finds me and Steve in the waiting room, I have chewed through all my cinnamon candy, drunk half my water, read all my magazines twice, and checked Facebook about a thousand times. Your aunt has sent me a single message asking me to keep her posted. Neither she nor any of your cousins have come today. They haven’t asked to come. They haven’t asked if you or I needed them to come.
The surgeon shows me and Steve a picture of your colon in a bucket. He says it’s the biggest one he’s ever seen. He’s quite proud of this, as if it’s a fish he’s caught.
That night, I wait until you get to your room. I kiss your forehead and then I go home and promise I’ll be back the next day, which is Halloween. You’ll be back home to the nursing home by Thanksgiving, we’ve been told. The doctor said two weeks for your recovery, so we plan on four, knowing how things tend to go a little slower for you.
Almost immediately, you get an infection. You almost die.
When it’s clear you won’t die, I Facebook message members of your family and beg them to visit, mostly because I know it will cheer you up, but also so I can have a break. I’m there every day, making sure your TV is turned to The Price is Right in the morning, Dr. Phil in the afternoon, the Bruins when they’re on. I’m there when they bring in your tray and I feed you even though no one asks me to. You can’t feed yourself and no nurse or aide comes in. I ask you if they feed you when I’m not there and you say “sometimes.”
You’re on soft solids at first and so I fill out your menu cards for pudding but not Jell-o, coffee with five creams and five sugars, chocolate or strawberry ice cream, macaroni and cheese, and mashed potatoes with extra gravy. I show the nurses how to set up your communication device. I write up instructions for your communication device as well as a list of shows you like to watch and what channels and times they are on and tape both lists to the wall with surgical tape.
Your family doesn’t come. The ones who respond say they have work, families of their own. I don’t tell you that I’ve reached out to them and you don’t ask where they are. It’s been so long since you’ve seen any of them you don’t expect to see them.
A priest comes and gives you last rites, just in case. I’m not there when it happens. You tell me the priest came and I say that’s great and I ask if you prayed together and you start to cry and then tell me he gave you last rites. I wonder if he even asked if you wanted them. I tell you it’s just a precaution, but you’ve been Catholic longer than I have and you know that’s not true.
Your infection clears, miraculously. The doctor asks me about giving you a drug that might help “move things along.” It’s a drug you are allergic to and you remind them of that. The doctor asks the side effects and you say spasticity and the doctor convinces you to try it because the spasms might not be that bad. You take one dose and are flailing in your bed like a fish out of water. This is the point when I lose it. I go to my car and cry and cry and cry before I drive to work.
We are in your hospital room, where we have been for a month already, when the doctor says you’d be a lot better off if you could get up and walk around. You and I start laughing, because this is an utterly ridiculous statement. You can’t walk, have never in your life walked, can’t even sit or roll onto your side without help. “Did you bring your magic wand?” I ask the doctor.
The doctor doesn’t laugh. He’s annoyed you aren’t getting better. He’s annoyed because this surgery and recovery was supposed to go one way and now you with your disability have caused it to go another. He doesn’t say this, but he’s definitely frustrated. Maybe, in fairness, he’s frustrated because he doesn’t know what to do.
When he leaves the room, I say, “You should probably stop pretending you can’t walk.” We both crack up.
By the time you finally leave the hospital, they’ll have taken down the big Christmas tree with the red velvet bows. It will be the middle of January, after all.
We are at the hospital for you to have a feeding tube put in. You’ve lost sixty pounds in the past year and the group home where you’re now living has pushed hard for the feeding tube. Initially, they made it a condition of you continuing to live in the group home, but after we hired a lawyer from Disability Rights Maine, they changed their approach to a more concerned “for your health” kind of thing.
It will turn out that the weight loss is from a bowel obstruction, which seems crazy given that you have about an inch of bowel attaching your ileostomy to the rest of your insides. We don’t know that for a year, though, when you finally have a colonoscopy. In the year that precedes the colonoscopy, you will throw up almost every time you eat and then, rationally, you will stop eating because you’re afraid to throw up. Because you can’t cough very effectively (coughing requires quite a bit of muscle control), you’re at high risk for aspiration pneumonia, which is the kind of pneumonia that occurs when you inhale something (in your case, vomit) and it sits in your lungs (because you can’t cough it loose) and grows into a pneumonia. You’ve had it twice in the past year that we know of for sure, but possibly more than that. You can’t always feel it, so sometimes it shows up on an X-ray and the doctor treats it with an antibiotic. You could become resistant to the antibiotics at some point, which will leave the infection rampant in your already- compromised immune system.
You agree to the feeding tube when you find out you can still continue to eat with one. I didn’t know this, and so we’re both surprised by the information. Ultimately, you decide the feeding tube will be nutritional support. It will keep your weight steady. It will take the pressure off.
The insertion of the feeding tube is planned as a day surgery, even though the group home has tried to have the hospital keep you until they know if you can tolerate the feedings. There’s some back-and-forth because the group home can’t support you if the tube will be pump-fed versus gravity-fed (this has to do with the level of care that the group home is able to provide), but the hospital says you’ll be in and out in a day and that’s that.
You’re nervous, and so am I. It’s the day before Thanksgiving. The last time you had surgery that was supposed to be easy, you were in the hospital for almost three months.
We’re in the hospital room where they’ll prep you and take you in for surgery. The nurse asks for your chart and the support staff who has brought you hands it over. The nurse opens it, turns the pages, looks up. It turns out your “chart” is a folder filled with empty pages. Your support staff looks baffled.
I call the regional manager of the group home where you’ve been living and explain that you were not sent with your chart, that you were sent with blank pages. The hospital where you have chosen to have the surgery is an hour and a half away from the group home.
“That’s impossible,” she says.
“Unless they wrote it in invisible ink, it’s all blank,” I say. I’m at the nurses’ station when I call, not in your room, because I’m both furious with the incompetence of the group home and scared the hospital won’t have the information they need and so won’t be able to perform the surgery. By calling from here, I’m hoping to hand the phone over to the nurse at the desk.
“How could they send a blank chart?” I ask the regional manager.
“They didn’t,” she says.
“It’s blank,” I say.
“It can’t be,” she says.
In the end, she faxes over what’s needed and you have the surgery. The procedure itself takes fifteen minutes. You feel fine. You go home. The next day, you eat a turkey dinner.
Sometimes I joke that I have an honorary medical degree.
Sometimes doctors don’t like that joke.
You are at the rehab facility because, after the successful insertion of your feeding tube, it turned out the group home didn’t know how to feed you. The rehab facility will get you started and make sure you tolerate the feedings and they’ll also help you gain some of the ground you lost because of your sixty-pound weight loss. At this point, you can’t sit in your wheelchair for more than a couple of hours because you’ve lost a lot of muscle tone and you end up leaning so far over the side it’s both painful and dangerous.
While you’re in the rehab facility, you fall out of bed. It’s a very slow fall, caused by a muscle spasm. Your legs go first, and then the weight of them pulls the rest of you. Somehow you turn and fall on your face. You break your cheek bones on both sides and come very close to needing surgery to keep your eyeball in place.
The rehab facility has a policy against bedrails because they’re considered restraints. “Look,” I say to the nurse at the nurses’ station. “I get it. My grandmother was in a nursing home in the ‘90s and it was terrible with the restraints tying people to their chairs. This is not that. He’s asking for bedrails to keep him from breaking his face again.”
As a solution, they have lowered your bed as far as it will go and put a mat on the floor, which means if you fall again, it will be a shorter fall and a softer landing.
The nurse, who is very pregnant and I’m sure exhausted, says, in her fake-patient voice, “Bedrails are considered a restraint.”
“He can sign something,” I say. “A waiver.” She’s implacable. “Okay,” I say. “I’ll go to Walmart and buy some bedrails and put them in myself and then I’ll call the ombudsman and let them know you can’t find a way to do this one thing so he’s not anxious while he’s in bed.”
She sighs. “Fine. I’ll see if maintenance can find any.”
The next day you have bedrails.
You are in the hospital because you’ve been throwing up again (it will turn out to be another bowel obstruction) and the Social Worker calls me. “We need permission to treat,” she says.
“Is Marcel unconscious?” I ask.
“Oh, no,” she says cheerfully. “He seemed quite alert when I saw him a few minutes ago.”
I pause. “So, why are you calling me?”
Now it’s her turn to pause. “Well,” she says. “I’ve just…I’ve never…you must understand that with someone who looks…”
I let her flounder. I know she’s hoping I’ll leap in and rescue her because you look different and I suppose she wants me to understand that’s why she thought you had a cognitive disability.
Finally, I say, “Do you have his chart in front of you?”
“Yes,” she says. She sounds relieved I’ve given her a question she can answer.
“Then you can see he’s his own guardian.”
“But he can’t sign anything,” she says, triumphant.
This is not really true, because you have a stamp and it’s probably in your bag, but maybe not. “So, you need me to come in and sign paperwork?” I’m actually hopeful at this point, because if that’s the case, this whole exchange is a little less awful.
“No,” she says, although I can tell she wishes she could say yes. “I just need your verbal okay.”
I wait a beat before I say, “But not his verbal okay?”
She says, “I just…I just can’t tell when he’s saying yes. Can he say yes?”
“He can nod,” I say. I keep my voice level because I’ve learned I lose credibility when I yell.
“Oh,” she says. “I didn’t know that.”
You are in the hospital because—you guessed it—bowel obstruction. I come in and put your TV on the station you like so you can watch “Let’s Make a Deal” and then “The Price is Right.” I notice that your call bell is where you can’t reach it, so I pin it to the sheet above your belly. “Can you reach that?” I ask.
You say yes, and you’re about to say more when the nurse bustles in.
“I moved the call bell,” she says unpinning it from where I just pinned it. “He keeps hitting it by accident.”
“So, you moved it to where he couldn’t hit it at all?” I ask.
“We’re very busy,” she says.
I stare at her. She busies herself with checking your IV.
“No,” I say finally. “That’s really too bad that you’re busy and probably short-staffed. But he’s going to have this call bell where he can hit it and if he sometimes hits it by accident and you have to take thirty seconds to check on him and shut it off, that’s too bad. And if I ever come in here again and find it where he can’t reach it, I will let your boss know, but I will also make sure the ombudsman, Adult Protective Services, and the licensing board knows.”
It feels good to say what needs to be said. You light up with the rightness of it. But there’s also part of you and part of me that worries I’ve said too much and staff will be mean to you when I’m not around. It’s happened before.
It doesn’t happen this time. Every time I come in after that the call bell is always pinned where you can reach it.
You are in the hospital again and the social worker comes in with a DNR for you to sign. “It means Do Not Resuscitate,” she explains.
We know. You’ve been asked to sign one every time you’re admitted to the hospital.
You shake your head.
“He doesn’t want a DNR,” I say.
The social worker blinks at me. “If he doesn’t sign it, it means they’ll use all the tools available to keep him alive,” she says.
“We know,” I say.
“Machines, tubes…” She sounds downright desperate.
“He understands,” I say.
“Even if he’s brain dead,” she says to me as if you have disappeared from the room. “They’ll keep him alive.”
“We understand,” I say.
She holds the clipboard and pen close to her chest. Probably she’s wondering why you don’t want to be put out of your misery. I’d like to explain to her that even when you don’t feel well, you find joy in life.
But I shouldn’t have to.
I look at you and you nod. “He wants to be alive,” I say.