chapter nine
IMPATIENCE AND TREACHERY
SEPTEMBER SUN SATURATES the conference room, its light bouncing off the walls. She sits facing out the windows, languidly moving her chair from side to side, seeing the parking lot and beyond it a community of trees in the backyards that rim TARC with their forest-green, coppery, and chartreuse leaves. It’s group meeting day, when her three therapists meet all together with her once every six months to review her progress. She’s hopeful. Soon she will begin a true new year; she’ll be discharged to return to her life. She’s worked hard; done the homework they’d asked her to; persevered with her reading these last three months, improving steadily, working up to reading two pages a day until she’d finished that Sue Rodriguez book yesterday, determined to return to her old life soon. She’s ready. No more therapies; no more lawyers. She hasn’t yet found a new lawyer to replace Mr. Quickley, but the way things are going, maybe she can drop the suit after all.
Someone clears her throat, and she snaps her focus back to the three opposite her. Their faces are in shadow; the sun encircles their heads and shoulders.
Zenobia clears her throat again, leans toward her, and begins: “As we discussed with you last week, we wanted to have a group meeting with you. We do this with all our clients as a way to discuss global issues and to mark your progress. We like to hold them every few months. We do meet as a team every Monday, but today you’re included in that meeting. Do you have any questions before we begin?”
“No.”
“Okay. What I thought we’d do is go over individually your progress and then discuss the one issue we all see. I’ll begin. You did really well on your initial neuropsych assessments. You ranked higher than average, yet you showed on our functional assessments that you have difficulties, particularly with the speed of your processing, which is typical of AS. We discussed your goals, things like grooming and cooking and cleaning and job goals. We discussed how to set up a SMART goal and also how to set up goal sheets for each task that you want to do. You told me that cooking is important to you, that you had done most of the cooking before, and you wanted to return to that. So we set up a goal where the target is to cook once a week, but we did a +2 and -2 for that goal so you could chart your progress towards it. You did very well on learning how to set both SMART goals and how to mark your progress towards a goal. We also went over various compensating strategies like pacing to manage your fatigue and reading strategies to help you read and comprehend. We gave you materials to take home with you so you’d have something to refer to if you forgot.
“Fatigue continues to be a big concern for you. I know how tired you get after your day here, and we looked at how to make that easier for you. I’m so proud of how you’ve quickly picked up on ways to recover your energy, like exercise and stretching. You’ve done super well with your deep breathing and the meditation tapes I gave you. And a nap always works. We all agree that you have worked hard and have done extraordinarily well. You’re improving faster than our typical client,” she says as she looks at her colleagues. They nod in unison. “And we’re hopeful in your continued improvement. I know you can do it!
“As you know the goal is to help you get strong enough to recover from Akaesman and to compensate for his presence. At the time of diagnosis, we couldn’t predict precisely how he’d affect you — the methods he chooses vary from person to person — and we don’t know even now. But we do know it’s diffuse, impacting on all parts of your life, and our goal is to help you recover and start a new life. A different one from the one now, but one you’ll like and enjoy.”
Like and enjoy? She doesn’t think so. She wants her old life back. That was the point, wasn’t it? Frustration licks at the edges of her hope. She nods anyway.
“I’ll ask Rona to speak now about those reading strategies.”
Rona glances at the open file in front of her. “I picked up from where Zenobia began with your reading strategies. Your primary difficulty is being able to read. Writing isn’t difficult for you. As we discussed, this is because it’s an emitting form of communication. You put out what is already in your head. But reading is receptive. Like listening, to do it you have to pay attention to what you’re receiving, retain it, move it into long-term memory, process it, learn from it, and produce new ideas. You have difficulties too with listening, but reading remains your primary concern. So with that in mind, we went over the reading strategies that Zenobia taught you to ensure you’d absorbed and processed them. We’re pleased to hear that you have finished reading the book you chose. Last week, in anticipation of this day, we went over strategies on how to choose a new book. We talked about its length, how a short one is more doable for you than a long one. We discussed how already-read material will be easier to read than new material. I know you wanted to move on to new material, but as we discussed, familiar material will give you a greater chance at success. We are about success here. Success will give you the confidence to try increasingly more difficult tasks and reading materials.
“We also discussed the complexity of the material. You’re used to reading complex books, literary novels. But we’re starting from scratch,” she pauses to look right at her. “You agreed that something simpler would allow you to succeed. To that end, we also went over the kind of media you’ll be reading from, whether typed, audio, or on the computer. We did try to have you listen to audiobooks for when you’re on the bus, but that didn’t go well. So now you listen to music.” She pauses and glances down at her file.
“We discussed the sequence of tasks and the order of tasks to help you prep for reading. You mentioned that you like to light a candle, choose a time of day when your cat is generally asleep, the street is quiet, and your fiancé is at work. We went over the reading strategies that worked for you and the ones that didn’t. Your favourite was covering off the text you’re not reading. That allowed you not to be distracted by other words, and you could stay focused on the words you’re actually reading. Another one you liked was taking notes or writing notes in the margins. Sometimes though, you just want to read, and we discussed how to decide which material is for reading only when it doesn’t matter if you remember further back than a page. Finally, we discussed interest level. It’s so important to your success that you read material that you find interesting. You find it hard to engage in the world around you and in material you read, so if it’s boring, it will be that much harder for you to read it. And one last thing we discussed is your energy level. You found it impossible to read when your energy is low. Zenobia talked to you about strategies for keeping your energy levels up or for recovering from fatiguing activities. You found those helped you in recovering from your reading sessions and allowed you to keep reading each day. That’s where we’re at now.” She closes her file and clasps her hands on top of it.
Zenobia turns to Sunny, “Sunny, you have a few words to say.”
“Yes. I agree with Zenobia, you’ve done a remarkable job on your recovery.”
She lowers her head and contemplates the table top. She wants this to stop, but Sunny continues, “It’s been difficult for you with no family support and not having your grandmother be a part of your life. We’ve noticed that in the last twenty years families have generally become less supportive. We don’t know why that is exactly, but you’ve done very well in spite of it. We would’ve liked to have had a family meeting with your fiancé Jim, your grandmother, or your friends, but you’ve indicated that that’s not possible. We want to urge you to reconsider. Speak to them; they may surprise you and say yes. People like being part of the recovery process, and coming here helps them understand what you’re going through. We find that improvement speeds up after such meetings. With family and friends to back you, you will be able to start your new life that much sooner.”
Each word penetrates her like a dart. She doesn’t want a new life. She liked her old one. She grinds her teeth. She looks up to see Sunny looking at her, waiting for a response.
“I’ll try.”
“Okay,” she nods gently, encouragingly. “We talked also about unpacking the boxes of your new life. Remember how we did that?” she asks softly.
“Yes.” She remembers. She’d hated that day. She had held in her rocketing emotions until she’d gotten off the streetcar and had started walking home. By the time she’d walked in, she was crying like a roaring waterfall. When Jim had come home, he’d unexpectedly hugged her and then without a word cooked dinner and cleaned up.
Sunny is talking again. “… hard this has been for you, thinking about exploring a new you, a new way of being and doing in the world. And this is what we wanted to talk to you about today.” The three sit up a little straighter; all focus on her.
She adjusts herself and her chair too.
“You see, we’re concerned that you’re not accepting what’s happened to you. Akaesman happened over a year ago. Since then, you’ve been struggling with personality changes and typical problems like motivation and initiation deficits, greater fatigue, difficulty reading and playing your music, and especially writing songs. You’ve worked very hard, very hard to improve, but we’re concerned that you think all this will be over in a month, that you’ll be able to go home and return to your old life. That’s not going to happen. This is a long process. It takes years to recover. And the changes are permanent. You’ve just started. And we’re worried that your non-acceptance will lead to a big disappointment. Your expectations of your therapy here cannot be met.” Sunny pauses.
“We need you to accept this so that you can continue to move forward in your recovery. We’ve discussed various ways of helping you accept your AS, and we believe that the best way for you, since you have trouble talking directly to your family and friends, is for you to write an email to them all. Writing it will make it concrete and will help you see how far you’ve come. It will tell the ones who matter most to you what’s happened to help them understand what you’re going through. We’ve often found writing is effective in helping people accept this big change in their life. What do you think?”
She thinks it sucks. She’s supposed to be discharged soon. But instead it sounds like therapy will continue for weeks, maybe months longer. Her face becomes rigid. She’s done everything they asked her to: how is that not acceptance?
“Okay, I guess.”
“What are your concerns?”
“How am I not accepting?” She tries not to snap.
“Remember how we discussed unpacking those boxes?”
“Yes. You said, you said they would be like a way, a way to see what this life will offer.”
“Right. Have you started unpacking those boxes?”
“No. I like the old me. I have s-s-songs to write, though they se-seem to have left my head this past year. I have a marriage to plan and a house to f-f-finish renovating. It’s been too long already.”
“How are your marriage plans coming?”
“Well, they’re on hold, you know, there hasn’t, well, there hasn’t been much time to plan,” she sucks in her lips and squeezes them together, hard pain erupting as she does so. She tries to push out of her mind the rising memory of the fight that Jim had had with her last April, about how they had no money anymore to hold a wedding, how she’d expected him to do all the planning work while also ferrying her to all her appointments, how all her so-called therapies had eaten up their wedding budget, how they should put the whole thing off until she’d decided what she wanted to do with her life. She’d almost forgotten that fight had happened, had told no one about it. But now Sunny’s question brings it back into her memory, where she doesn’t want it to be.
She can’t stand the look of concern on their faces.
Frustration burns her chest.
“This could be a really exciting opportunity for you,” Sunny says. “Writing an email to all of them will allow you to express yourself without the expectations surrounding a personal one-on-one discussion,” she urges. “You can tell your friends and your grandmother all that’s occurred during this past year. Think of it as a Christmas letter. Everyone does one of those. You can share with them your difficulties and how you’ve overcome them. This is your chance to teach them everything you’ve learnt about Akaesman and recovery. Think how exciting it will be to finally sit down and tell them everything.”
“That doesn’t sound so bad,” she thinks as she unlocks her lips. Maybe this way she’ll finally be able to get them to hear her. Yeah, she can do this.
“Okay. Yeah, okay. I can do this.”
They all sit back and smile.
“How do I begin?”
“Well, you know a lot already about Akaesman. You can start with describing that morning you first met him and how you didn’t know what had happened until you met Dr. Dering. You can then describe some of the typical symptoms and how you exhibit most of them. Talk about yourself. Talk about all the great improvements you’ve made. You could even include links to the TARC website so that they can learn more.”
She nods, “I can do that.”
She starts that very day, she’s so excited. Well, excited might be too strong a word, but she’s definitely up. It’s slow going. September ticks away and October arrives as she labours over each sentence and each paragraph, as she searches painstakingly for links on the Internet to TARC and other websites that talk about Akaesman. Every week, she reviews her progress with Rona and Sunny. November clouds roll in, yet she’s no closer to finishing the email. She’s writing it in WordPerfect, for she fears her email program will ditch it behind her back. She struggles to come up with the right words, to keep all the information straight in her head. Meanwhile, Jim becomes more and more short with her. He’s increasingly away most weeks of the month. His PR business has taken off, and he’s finding clients all over the country. One mid-November day, the thought drops in her head, as she hears him packing upstairs, that his partners don’t travel as much.
The wind is howling outside, dragging water-laden greyness across the sky. The humming noise of the computer fan bothers her, and she badly wants to shut it down. But she’s almost finished her email letter. She even dares to think she’s near the end, will soon be able to hit that send key. She hears Jim coming out of the bedroom; his clumping down the stairs annoys her. How can she concentrate between that and the computer fan?
“My taxi will be here soon,” he says to her profile.
“Okay,” she continues to type.
“I’ll be gone for a week.”
“Okay,” she pauses as she thinks about this last paragraph. There’s something missing.
“Don’t forget to feed the cat.”
At this she turns around and faces him, “I won’t forget.”
“You forgot last time.”
“I did not.” Irritation nibbles at her.
“And she had no water when I got back.”
“I put a reminder in my Palm to keep her water bowl full,” she snaps.
“That thing only makes your memory worse. If you were forced to use your memory, it would get better.”
Fury fills her. “It doesn’t make it worse. It makes it better. And what do you know about memory anyway? It’s not like you remember to call me when you get to wherever you’re going.”
“I can’t afford to. The cell charges are high. I told you to stop depending on me.”
“Asking you to call me is not depending on you. And you know it.”
“You depend on me for everything. You don’t do anything around here. Look at this mess,” he exclaims as he sweeps his arm in an arc that encompasses the desk with its fan of papers and the dining room table with its dishes on top. “There are still glasses on the coffee table.”
“You could put them in the dishwasher too, you know. You don’t have to wait for me to do it. And I told you, I’m really tired.”
“You don’t look tired.”
“I’ve been working on this email for two months. Who works on a fucking email for two months?”
“Y
ou have —”
Honk honk. The taxi has arrived. He throws her a contemptuous look before striding toward the door, grabbing his jacket on his way past the coat rack, flinging the door open, and slamming it shut behind him. She returns his look at the closed door before turning back to her computer to finish the stupid email. The quiet of the house soothes her, and an hour later, she’s methodically pasting all her friends’ email addresses, her grandmother’s address (she hesitates over that one then suddenly copies it in), and old acquaintances into the TO and CC lines of the email. She goes over the addresses once, then again. And again until she’s satisfied that she’s copied them all in. She copies her letter from WordPerfect into the message area and types in the subject line “Akaesman Syndrome: A Story,” a line she and Rona had come up with. Her finger hovers over the send key. Suddenly, she pokes it; then hugs herself. It’s done.
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