It is a comical hat and you find yourself wearing it often. It represents the way you feel these days: ridiculous. Maybe it’s better for people to stare at the hat rather than at your scarred, bald head. Maybe it’s easier for you to answer the question “Why is that person staring?” when you wear this hat.
You make a mental note to save the hat for future outings. Or maybe Halloween. You are probably drawing more attention to yourself tonight by wearing this weird hat, and you don’t care. You probably set some new trends while shopping at Copley.
What might they have said while you were shopping?
“Excuse me, what designer made your chapeau?”
“Oh, I bought it off the set of the I Love Lucy show.”
AS WELL AS the hat and the wheelchair, you also have a sling on your left arm. The sling prevents your arm from flopping and keeps the arm in the shoulder joint. When you and Jim are with Nancy and Stephen, you always laugh a lot. You are apprehensive about laughing too hard with your vascular system on the mend—but then again, maybe laughing yourself to death is an acceptable way to go.
When the waiter arrives for your drink order, your friends order what they usually do. Alcohol is off limits for you. When your turn comes around, you want something other than ginger ale, which is pretty much all you drink at the hospital. You realize that you are having your first experience of socializing with your friends while they are imbibing and you are not. Nancy turns to face you directly to give you suggestions.
She sounds like she’s speaking in slow motion, and twice as loud as usual: “WOULD YOU LIKE SOME ICED TEA OR SOME LEMONADE?”
It’s as though she’s speaking to a small child.
You look at her quizzically and turn to Stephen and Jim and ask, “What is she doing?” They both shrug.
You look back at her and say, “Is it because I look brain-damaged that you’re talking to me like that?”
Somehow, this question snaps her out of her protective trance.
She starts laughing. Soon all of you are laughing.
The waiter is standing there patiently. It occurs to you that you will in fact have to order something. But you’re still laughing.
“Pardon the interruption,” you say, gasping. “I’m brain-delayed.”
The table erupts in laughter once again. The poor guy has to keep standing there. Eventually you order a Shirley Temple.
This Party Will Self-Destruct in Thirty Seconds
STILL AT THE SAIL LOFT.
It’s a big help for Jim to have Nancy there to take you to the women’s room. He has been dealing with all your needs on these kinds of outings, and at the same time staying involved with the medical care and being mother and father to Rory. No wonder he breathes this heavy sigh of relief when you announce you need to use the bathroom and Nancy jumps up to escort you. The two of you wobble off to the women’s room.
When you return, you stop for a moment before you get back in your wheelchair. You stand at the entrance to the veranda for a few minutes watching Jim and Stephen talking. You realize that it’s the first time that he has looked truly relaxed since this injury of yours took over your lives. Stephen has always had a way of getting Jim to let it all hang out.
YOU STAY AT THE SAIL LOFT for hours. It is so nice to be on the outside. You keep pleading with them, “Please don’t take me back.” And every time you do, you all crack up.
But eventually it is time to go.
When you are heading back to the hospital, you feel like a teenager about to get in trouble for missing curfew. It’s as though you’re bringing back your corrupt friends to face a locked door with angry parents waiting behind it.
All four of you are completely giddy as you make your way back in, as if you’ve been on a secret mission, and the job now is to sneak you back to your room without being seen. Actually, there is a reason for the drunken subterfuge: When you left for your outing, Jim had to sign you out and give both a time of departure and a time of return. Arriving after eleven o’clock means you are showing up several hours later than the time he logged.
So technically, yes, you are in trouble.
But somehow it’s hard to feel that way for long.
Jim has to sign you in and get in touch with the nursing staff, because it’s time for them to administer your medication. You already feel you’ve received the best possible medicine this evening, laughter, the medication nobody tells you that you must somehow administer to yourself if you want to make it through intact.
The Incident
THAT WOMAN down the hall is howling again.
You ask one of the aides to bring her to you so that you can see her face-to-face. She is wheeled into your room. She’s young, just like you. You really want to talk with her.
Her aphasia makes it difficult for her to communicate and her paralysis affects her right hand. To talk with her you ask her to put her thumb up or down for yes or no. You can see in her eyes that she understands the instruction, but attempting to express it, she gets confused. Inside you are dying for her.
You decide that, rather than risk frustrating her, you won’t ask any more questions. Instead, you tell her all about yourself, how you got here, what you’ve gone through, how this isn’t what you expected. You talk for a long time. Two wheelchair women, each with an arm in a splint strapped to a board. You mirror each other like bookends. You’re trying to see how much the two of you have in common that isn’t already obvious.
Her eyes seem to speak to you, even though her mouth can’t. She is listening very closely. You can see it in her eyes. You think you can see her soul in her eyes, too. There is no way you can judge her again.
You recall seeing this handsome, strapping man who passes your doorway regularly. He is taking care of her…forever faithful.
ONCE YOU HAD the outing to your house, you wanted to be home full-time. You kept thinking of Dorothy: “There’s no place like home.” That was true. But it was also true—the first visit back had convinced you—that there would never again be a place like the home you had on July 16, 1997.
An unrealistic wish.
Only over time.
As you evolve.
Even if your body healed somehow.
Not going back.
Cards dealt you.
Cards shuffle. They don’t unshuffle.
YOU OWN YOUR CONDITION—and you are generously sharing it with everyone close to you. In the hospital, you joke with friends and family about what to call what has happened to you. Some people think it is impolite to talk about one’s illness. When referring to someone they know who has cancer, they will always mention it in a hushed, secretive tone, cupping their hand over their mouth: “He has cancer.” As if this vocal trick lessens the impact of the illness. Maybe they’re afraid that if they say it out loud, they may catch the disease. Don’t talk about the elephant that has wandered into the house; if you talk about it, it won’t leave the room.
Your friend Paul, whose family has dealt with a lot of cancer, leans toward black humor, a trait you love. The two of you hold a summit conference to determine what, precisely, you should call your predicament. “Stroke,” you agree, sounds like something an old fogey would say; “hemorrhage” sounds too gruesome and too clinical, and anyway what happened to you is several things, not just one. Paul suggests calling it “the incident.”
He always whispers the words whenever making any references to your condition: “before the incident,” “after the incident.” You love it.
You both crack up talking about “the incident,” always pausing and saying it in a hushed tone. Talking this way is a great relief—it allows you a little distance, and keeps you from fixating on questions you can’t answer or factors you can’t control. For instance: What is it, exactly, that has happened to you? No satisfactory answer. On one hand, you are dealing with an injury, because there is a major wound to your brain. You have, in the words of the doctors, “lost a lot of real estate.” On the other hand, you are dealin
g with an illness or chronic condition of some kind. What is it? Injury? Illness? Condition? You don’t know what the hell it is, but you’re living with all of the above. So you and Paul stick with “the incident.” And you laugh. And it feels good.
YOU ARE SPENDING more and more time with the aphasic lady.
Your time with her is changing you. Your judgmental attitude is starting to crack.
Now, when you see her in the hallways, you always try to stop and look her in the eye. You touch her hand. You give her a smile. She looks back at you, very intently.
If you hear her during the middle of the night, it doesn’t bother you anymore. You hear yourself saying a prayer for her well-being.
part THREE
Beating the Odds, but Still Coming Up Uneven
A WEEKEND OCCUPATIONAL THERAPIST comes to work on your arm.
She has you lie down on your bed and tells you to try to hold your arm straight up in the air. Your arm keeps flopping on your face, and not gently.
She keeps telling you to put your arm up in the air…and you keep bashing yourself in the face. It hurts. It’s like taking a club and whacking yourself in the face over and over again. Every time the OT lets go of your hand, it flops right into your face really hard. But you aren’t going to give up.
“Hey,” you ask, “how many people do you know who can actually beat themselves up and lose?”
You decide that if it takes beating yourself up for a while until you come out the winner, you’ll stick with this strange therapy.
As you whack yourself, you keep telling yourself you only have some minor “deficits.” Logically it doesn’t make any sense, but it seems very important to you to keep reminding yourself of this, and the exercise is easier to do as a result.
Some minor deficits. Whack. Some minor deficits. Whack. Some minor deficits. Whack.
In the back of your mind, you wonder if this is delusional behavior, but in the front of your mind, you know you’d rather beat yourself up with a floppy arm than with an attitude that points you downward.
Your dad seems to believe you can will your left side to work. You want to buy into the same idea. If believing you are working your way back from a minor stroke—instead of accepting permanent debilitation from a major one—helps you push to improve yourself, that’s the way it’s going to be. That’s a belief you’re going to hold on to, even though you haven’t been able to hold a thing for a while now…since the incident occurred.
A Pothole in the Journey
YOU ARE THIRTY-SEVEN YEARS OLD with a child who has recently turned three. You live in a suburban neighborhood, miles from stores, schools, playgrounds, everywhere you need to go. You just have to drive again.
Your physical therapist tells you that doctors are obligated to report certain conditions such as head injury and stroke to the Registry of Motor Vehicles. This, she tells you, triggers the RMV to review your license. They can decide to suspend it until you are completely retested—the written exam as well as the road test—to ensure that you are still capable of driving safely.
Your attorney-brother, Jason, reminds you that your driver’s license is not a guaranteed right, but a privilege. He also tells you that if you don’t comply with the stipulation to be retested, even if the RMV decides not to suspend your license, it leaves you much more vulnerable to a lawsuit in the event of an accident. Without the test, there will be no real proof that you are fully capable of operating a car.
One morning, Dr. Bleak appears in your room for morning rounds.
“Dr. Bleak, have you reported my injury to the RMV yet?” You ask with trepidation.
“Yes”, he tells you, and then adds that you can take a test that will allow you to hold on to your license. He tells you that the hospital has a department to test your reflexes and administer a comprehensive cognitive test to establish your fitness to drive. He suggests you do it while you’re here; it will be covered by insurance because you’re an inpatient. After you are discharged, it will cost a couple of hundred dollars. Of course, you’ll still have to take the road test before you can be cleared to drive again, but that’s in the future. You don’t worry about that now.
You are told that many people in your situation decline, for one reason or another, to take the battery of tests necessary to establish their driving fitness. Which means that if they choose to continue driving, they might very well be driving under a suspended license. (You will later find out that, in their infinite wisdom, the RMV doesn’t necessarily notify you if they choose to suspend your driving privileges.)
You decide then and there that you are going to take the first test while you are still in the hospital. That will remove one more obstacle on the road to your recovery—a road you want to be on as the driver and not the passenger. In your current condition, you fear it is going to be like doing an extreme sport, but you are determined to win.
Your current inability to drive almost screams the word “dependent,” a word you don’t like to use in referring to yourself. You are aware that it is going to be a long while before you get behind the wheel—but you will drive again.
IT’S DOWN TO THE WIRE NOW, as your discharge date approaches. You insist that you have to take the driving examination before your release. The exam has to be set up with a physical therapist whose area of specialty is testing driving faculties, and those specialists are not always readily available. Since you are orchestrating your own discharge, you are adamant about getting your appointment immediately. Hospital staff pushes back, but in the end they relent. Your test is scheduled for the day before your discharge.
THE FIRST PART of the examination is a written test. In your case you are told you can answer verbally; you have to identify all the road signs. You have been driving for over twenty years, and now you are being asked rudimentary signage questions; it’s a strange kind of time-warp experience.
Next, the therapist holds up flash cards, each representing a sign. You are supposed to identify each one.
There are some you know you’ve never seen before; it’s not the stroke, it’s just some weird squiggle from some region of the planet you’ve never been to.
“Hey,” you say, “are you giving me the international version?”
There are approximately fifty-two sign cards, and she’s holding up one you don’t recognize. It has a lightning bolt shape next to a straight line. You have no idea.
She’s waiting for an answer.
“Hmmmm,” you say. “You are about to be struck by lightning if you don’t toe the line?”
As it turns out, this sign means the road is going to narrow into one lane and if you don’t pay attention to it, you’ll end up in a ditch.
Supposedly.
You disagree with the answer, and you tell the therapist this. She starts to write some notes on her pad. You know that those notes, if she keeps writing them, can keep you from passing.
You stop talking.
YOU’RE THINKING, “Wow, I took this test when I was sixteen, and here I am trying to pass it again.” Recalling information that you haven’t accessed in decades is really difficult.
After the written examination and the signage flash cards, there is a physical exam to test your reflexes and your eyes. The test involves simulated pedals. You have to watch some lights and use your right foot to step on the appropriate pedal. One pedal is green (for the gas), another is red (for the brake), and a third is yellow (yield on the gas pedal). Your reaction to the lights is timed. Talk about being put under pressure!
You have always hated games that use a timer.
This isn’t a game, though; your independence is at stake. You are so freaked out that you are a little afraid you will overcompensate on the braking.
The light flashes red—bam on the brake!
The time doesn’t even register on the clock.
You ask, “Did I just leave tire tracks?”
YOU PASS ALL THREE TESTS. You get the doctor’s endorsement that you qualify to take the ro
ad test whenever you are ready.
You have a long road of rehabilitation ahead before you will actually be driving on the road. You won’t be ready physically or mentally to take the road test for months.
But something important is behind you now.
Steady
YOU REALIZE THAT YOU are getting the urge to go home, and that certain things have to happen for you to be discharged.
One of those checklist items is to have the therapists analyze your living arrangements to make sure that your home is handicapped adapted and safe. They’re supposed to make a visit, but they never materialize for the home-visit recommendations, which (you decide) is just as well. You don’t want your house adapted at all.
When the therapist starts talking about getting ramps into the house, making the downstairs office your bedroom, and putting grab bars everywhere, you know you don’t want them in your house. You know what you need: normal surroundings, just the way it was when you left for work that day. Hopefully it won’t be too dusty.
YOU REFUSE TO CHANGE your house in any permanent way. You do not want to have a handicapped mind-set; therefore, you don’t want constant reminders of physical disability. You don’t want to become dependent on any special equipment, and you don’t want your family to feel handicapped by your situation.
It is essential that you keep training your brain to believe that you will heal. Having too much handicapped equipment will subconsciously send the message that you are planning to remain disabled.
“I’m going to Rollerblade,” you tell your therapist one afternoon.
Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry Page 12