“Yeah. I’m not lashing out because of what happened to me, and I’m not in denial. I just don’t like this place. It has to be the single most depressing room I’ve ever been in in my life. And P.S., if not liking the linoleum is a reason to reprimand me, even though I had an up-close and personal meeting with it, then I think we should also be talking to somebody else about a reprimand for the color choices in here.”
“Is that it?”
“No. That’s not it. Isn’t this a place where people come to get help recovering from whatever has, you know, befallen them? If that’s so, then why does everyone act like I’m an inconvenience? Or a description? Or a line on a chart? I need positive interactions. All I’ve gotten here is negativity.”
Impulsive.
You hate goddamn labels.
Which Hand Was That?
IT MUST BE MORNING BECAUSE sunlight is coming through the window in greasy streaks. A man in a white coat is looming over your bed.
“I’m your physiatrist.”
“Why do I need a psychiatrist? I thought I was doing pretty well handling this.”
“I’m not a psychiatrist. I’m a physiatrist.”
“What the hell is that? I’ve never heard of that specialty before.”
“I’m the doctor responsible for your overall rehabilitation. When you’re done with the critical care doctors and stabilized enough to work on your rehabilitation. It’s the ‘physical’ recovery we work on here.”
Your physiatrist is a little elflike man who has curly black hair and a tendency to look at you the way a keeper looks at an animal in the zoo. When he scrunches up his nose he reminds you a little of Peter Rabbit.
Dr. Bleak.
“Touch your thumb to each finger separately,” he says, nose squinched.
You touch your thumb to your finger. No problem: Your fingers are quick and agile.
“That was easy,” you say triumphantly.
“Not your right hand,” Dr. Bleak complains, agitated. “Your left hand.”
Oh.
He wants you to do the same trick with your left hand. The one that isn’t really there. The one that’s a faraway radio station your brain can’t seem to tune in to.
You try. Nothing. Your arm doesn’t even move. It lies on the bed, dead. “Is that bad?” you ask.
“Only if you plan to use the hand again,” he says, then flashes a tight little smile. “Seriously, if you can’t do it now, you won’t ever be able to do it. You should probably get used to that idea.”
Nice way to squelch a little thing called hope, you think. The doctors here seem to specialize in identifying ideas you ought to get used to.
He writes something on his clipboard. You try to read upside down—something you used to be able to do—but you can’t. Written words don’t make sense. The hundreds of cards you receive don’t make sense. You simply can’t read, at least not more than a stray word here and there. Your left-side neglect removes all the letters on the left side of the page.
You manage to pick up a single word from the clipboard: “Denial.”
You picture yourself using your nonexistent left hand to flip him the bird.
Everyone needs a goal. For now, that one is yours.
With Apologies to David Letterman
The Top Ten List of Post-Stroke Indignities—Institutional Edition
10. LOSING TRACK OF YOUR LIMBS. Your hand and arm have become appendages that are more like pieces of luggage that you have to lug around. One evening, while you were positioned on your left side, you lay facing your mother as she sat in a chair next to you. You had been talking normally when you suddenly panicked because you didn’t know where your arm was. Your eyes wide, you said to her, “Where is my arm? I lost my arm!” As though it had walked out and had gone down to the cafeteria for a cup of coffee without you.
9. BEING VELCROED INTO PLACE. The therapist built a special tray for the wheelchair that your arm can be Velcroed onto. This prevents your arm from falling into the spokes of the wheelchair and getting tangled up in the works, or jamming into doorways during tight entries. Both problems have arisen repeatedly.
8. HAVING TO BE MOVED TO AND FROM the portable toilet chair by total strangers who have to hold you as you defecate. It’s amazing how much autonomy is based on being able to go to the bathroom on your own. Back to potty training at age thirty-seven!
7. REGULARLY HAVING TO REQUEST that a pair of total strangers be summoned to move you to and from the toilet. You are a two-person job.
6. HAVING YOUR ASS WIPED BY SOMEONE ELSE. When you made your list of New Year’s resolutions last December, being able to handle personal cleansing tasks you thought you had mastered at age three was definitely not what you envisioned on your list of things to be accomplished. Yet it has, amazingly, become a major life goal, almost as important as the goal of being able to flip the bird to certain members of the medical establishment.
5. SLIDING OFF A CHAIR WITHOUT MEANING TO when your center of gravity shifts. Your flesh has become Jell-O.
4. HITTING THE WALL with the back of your head before you land in a heap on the floor.
3. MAKING A SOUND UPON IMPACT that makes someone else run in from another room.
2. BEING REQUIRED TO WEAR A LEG-FOOT SPLINT, as well as a hand-arm splint, and a wedge to keep your shoulder in its socket.
And the number one post-stroke indignity is…(Drum roll)
1. LISTENING TO PEOPLE SPEAK ABOUT YOU as though you are not in the room.
Case in Point
TWO MORE WHITE COATS, talking to a blue jumper. One of the white coats is clutching that ubiquitous clipboard. The three of them are about eight feet away from you, but it feels like a mile and a half.
“How is she doing?”
“Well, to tell you the truth…”
“What?”
“It’s going to be tricky.”
“How do you mean?”
“She’s lost a lot of real estate. She’s always going to be…” (Inaudible) “Yeah, but it’s more than that.” “More?” “She’s in serious denial.” “Get a psych consult.”
Cry Me a River
DR. BLEAK, YOUR ASSIGNED PHYSIATRIST, continuously reinforces the idea that you’re in denial. He hasn’t seen you crying yet, so that’s his proof. No crying equals you’re in denial.
“You know,” he says, “it would really help you in your recovery if you stopped blocking the facts and accepted the reality of what has happened to you. Please consider attending the stroke support group here on this floor to help you accept your condition.”
Marie, a close friend of yours from work, visits you regularly. She too is concerned that you’re not aware of what has happened. “Julia, I can’t help noticing that you’re always joking and laughing. It’s okay to cry. You can cry to me. It’d be good for you.”
But you know full well what has happened, at least, you know as much as anyone else does. You had a stroke. The effects are severe. Beyond that you choose simply to pose questions rather than make statements. They’re scary, but if you were in denial you wouldn’t be able to pose them at all.
Do you truly have a life-altering incurable disease like cerebral vasculitis? Will the vessels in your head start to bleed spontaneously someday? Will you have another stroke? Will you die soon? Will you be able to return home, raise your child, have any independence? Will your husband become a caregiver and feel stuck in the marriage? Will your arm ever work well enough to pick your little boy up or bear-hug your husband again? Will you ever work again? Are you done being a mother?
There are so many things you could be terrified of if you choose to. You are already physically crippled. You can’t paralyze yourself any further by freezing up emotionally. Your attitude is the only control you have left in your life—that and your nail polish color, of course.
You don’t want to be the recipient of people’s pity, nor do you want to deal with their sadness. The solution is to always joke in a self-deprecating way. The best m
edicine, you decide, is a room full of laughter. Laughter helps you improve every day. There are times you have so many people in your room, it feels like a private party. People are lying on the bed with you, sitting on the floor with you, cramming their chairs into the room. You almost forget where you are.
Almost. But not quite.
If laughter is the best medicine, why do you still hurt?
Just having a goal doesn’t mean you’re in denial. It means you’re alive. Your goal is to return to the person you were prior to the stroke. Maybe somebody else would feel it’s unrealistic. Maybe somebody else would feel it’s ridiculous. But it’s a goal. It’s better than giving up. And it’s a sign that you understand what has happened to you well enough to respond to it constructively.
EVERY TIME DR. BLEAK makes his rounds, he asks, “Did you go to the stroke support meeting?”
“Is there anybody like me there?” you ask. “Is there anybody who is thirty-seven years old who has a three-year-old child? I would like to know if there is anyone who mirrors me there, anyone I can identify with.” You know most people who suffer from stroke are twice your age. It’s a convenient way of changing the subject.
The floor counselor and a few of the nurses also drop hints that you ought to go. It’s as if they all think your attending these meetings would make you realize you had a stroke. Then you’d cry in front of them, and they could check you off some list.
IT’S NOT THAT YOU DON’T EVER CRY. You just do it in private. You cry fairly regularly, because the injury is not yours alone but also that of everyone who loves you. They are suffering as well. But crying in public is just too painful, and you know it would be hard on your family.
So the crying happens on your own. You stop in at a private “pity party” now and then, but you always know when it’s time to leave.
AFTER ONE OF MARIE’S VISITS where she encourages you to cry, you decide, “All right, I’m going to try Marie’s method and cry and feel hopelessly sorry for myself.” The end result gives you a stuffed nose and a pounding headache, and you feel like a dishrag the entire next day. It really sucks. This is not the route you want to travel for your recovery.
Dr. Bleak, making his usual morning rounds, is surprised to find you sad and congested from crying. He says, “You seem to be depressed. You really should attend the stroke support group.” Now he had switched “D” words on you. Tears? You’re depressed! No tears? You’re in denial. It must be wonderful to be God, tossing those labels around and making people believe them.
MORE OUT OF EXHAUSTION than anything else, and a deep-seated desire to move on to another topic of conversation with Dr. Bleak, you go to the next support meeting. There are three other patients and a counselor in a lounge area. The other patients in the meeting are all men: one in his early seventies who was recovering from his second stroke, a young man in his late twenties who was an immigrant from Jamaica, and a man in his forties.
The counselor doesn’t counsel much, but instead demands that each person take a turn speaking. The man in his seventies speaks of his fear and anxiety that a stroke will happen to him again. The young Jamaican talks about who will take care of him once he is released. His family is spread in different locations, with his sister in Florida being the closest relative.
The man in his forties is extremely angry. He suffered seizures regularly prior to his stroke, and he had arranged to have a certain risky type of surgery to calm his seizures. When he awoke from his surgery he discovered that he had had a stroke, which his doctors warned him could happen. Now he is absolutely livid about his condition.
You find you have no patience for his “why me” attitude. Every patient in this hospital could adopt the same mind-set and make the same complaints. Did his way of thinking help him? No. It was simply a delusion, a cheap way for him to imagine that he was somehow superior to everyone else in the building.
“I’m going to sue the doctor for doing this to me,” he says.
“Weren’t you told of the risks prior to the surgery?” you ask.
He screams his answer: “I signed some documents saying I understood the risks, but I didn’t think it was actually going to happen to me!”
This guy is really getting on your nerves.
“Listen,” you say, “you have got to stop looking around and blaming everybody. Start looking at yourself and saying, ‘Hey, I am going to get myself better. I am not going to put up with this condition.’ Take all your negative energy and put it toward recovery instead of wasting it by pointing at everyone else. Because in the end, you’re still going to be in the same condition—unless you do something about it. There’s a Chinese saying I heard once: ‘Hatred does more damage to the vessel it is contained in than the vessel it is directed at.’ Focus within yourself and you’ll have a better chance for recovery and a better life.”
The stroke counselor is so pleased with your little speech that she asks you to come again and be a group leader. This surprises you because, physically at least, you are in worse shape than your counterparts. You expect a group leader to be someone who has actually made some kind of tangible progress.
You decline the offer because you don’t want to belong to a group that makes pity parties a part of the routine. You won’t allow yourself to bemoan your own fate, and you know you will have a hard time listening to the inevitable whining and rage that will come from other patients. Plus there’s a lot of talk about setting and discussing individual goals as part of the group’s activity. You refuse to accept anyone’s idea of what your goals should be. Goal setting, you realize, is a personal matter.
Facing the Chicken
IT’S YOUR FIRST SUNDAY EVENING AT REHAB, and Mom and Dad are visiting. Dad likes to have missions, and he can see that food is going to be a problem. He goes to Davio’s in Cambridge, an upscale restaurant where takeout is not an option. He sits down and looks at the menu and orders the roasted halibut with black bean and mango salsa and says, “Make it ready to go.”
They don’t do ready to go.
To get the order, he tells a sob story—one that’s true and has you as the lead character. The waitress relates her own story to him: It turns out she had a serious accident and was badly disabled for a while. She was in the hospital for six months. Dad is psyched to see that it is possible to overcome devastating injuries. Here she is a waitress, someone with a physically demanding job. He returns to your room all excited: “I just met somebody who was injured and couldn’t walk but now is walking and working.” You know it’s a brass ring he’s putting out there for you, but it’s also one for him, too. He’s having difficulty dealing with your injury and doesn’t know how to express it.
YOUR BROTHERS BRING YOU LUNCH AND DINNER for the two months that you are in rehab. They organize a weekly calendar in which each brother is responsible for a certain time slot. You’d get the daily call from the Responsible Brother for that day.
“What do you feel like?” asks your brother John.
“Can I have anything I want?”
“Anything.”
“How about Chinese without the chopsticks?”
“Really?”
“Really. I can barely handle a fork, really.”
“What kind of Chinese?”
“Whatever is easiest for you to pick up. Just make sure you get a few fortune cookies—I could use some good insights in bed.”
Your eldest brother, Jimmy, does his service on Friday nights, and he prefers to bring swordfish kebabs on rice with salad, and a blondie for dessert. He knows that you like it, so that’s what you got every Friday night.
John has Tuesdays. Sometimes John would bring his own favorite, caesar salad with grilled chicken. Joe brings pizza from Fig’s, a local pizza joint. It’s always half eaten by the time it gets to you.
“The smell got to me and I was hungry,” Joe says.
Jerry always brings a loaded tuna sandwich and fruit salad. Justin always brings lobster-salad rolls.
Jeffrey w
ould travel over an hour to visit. He’d bring you a loaded sub and, although it was messy, he’d pick up the stray shreds of lettuce and diced tomatoes and help you get most of it in your mouth and not on your lap. “I love the smell of a sub when I’m starving,” you say. “I just hate the smell after I’ve devoured it.”
Your brother Tommy calls you one day and says, “I’m going to bring you some home cooking; it’s going to be a surprise.” He arrives that evening with a roasted chicken on the bone.
Now the rule is, supposedly, whoever brings the meal stays and helps you eat it. This is important because you have difficulty sitting up and even more difficulty eating one-handed. You also have to be monitored closely because you can choke easily. Tommy has to drop and run because that’s the way he is, off to another important meeting. He’s always on the go.
You had begged Jim to stay home that day because he was running ragged coming to the hospital every evening and most lunchtimes.
And Tommy just left.
So you’re all alone.
It’s you and the chicken.
You stare at it. You’re starving. It looks delicious. And you have absolutely no idea what to do with it.
Hell, it’s dinnertime. You’re going to eat this damn bird.
You have some useless plastic utensils. You ponder why they even bother with plastic knives. “Self,” you think, “figure it out.”
You do a face plant on the roast chicken and start gnawing it like an animal. You know you look disgusting, but you don’t really care. You’re hungry.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 5