home full-time soon

Jenny Moss and I hung out with Suzie this morning at the Stuyvesant E. River park. Her mom (and a few of her aunts) met us outside their apartment in StuyTown and then Suzie, Jenny and I wandered east until we found a table and some chairs by the river, where there weren't as many distractions.  We chatted, did a little stenciling, played some word games and had a good time. It was the best visit I've had with Suzie in awhile, partly, I think, because we were engaged in activities, initially, and we talked about those activities, rather than trying to have open-ended conversation. It was the first time in the past few visits that she really seemed to be answering questions, rather than just saying "yes" "no" or "absolutely" and she really seemed to have a good time. It really felt like we were just kind of hanging out, which was fun.

When we returned to their apartment building, I asked her mom if she would bring some of the "games" Suzie has in Queens home so we could continue to work with her here the way we had been working with her out there. That's when her mom told us that, as of this Thursday (June 4), Suzie will be home full-time. I don't know the specifics of the therapy and the nursing help, but I know there is something. And while I'm hopeful Suzie continues to work toward more in depth communication, her being home seems like a really good thing. She seemed really happy when her mom told us about it and her mom and aunts seem really happy too.  

What it will mean, hopefully, is that she'll get more visitors. If you haven't been to their building in StuyTown before, take the L train to the 1st Avenue stop, walk to Avenue A and instead of walking downtown on Avenue A, walk uptown into StuyTown.  Their building is the 3rd building on the left (1 Stuyvesant Oval), just before you get to the Oval.  Their phone # is 212 598 0467. Obviously, call before you go, though her mom seems very excited for Suzie to have visitors.  

kevin

The Weekender

Had a good visit w/ Suzie today, along with Leona Brown, Jenny Moss and Scott Peehl.  It was great to see her after not having seen her for many weekst, although for me it was odd seeing her in a group - I'd grown accustomed to seeing her on my own.  She's a lot more shy/reserved in a group.  Still it was fun, it was just a side of her I don't see very often.  We did sit outside for a bit, which was much nicer than I expected considering it's right next to a highway.  And it's really great knowing that she's at her folk's place on the weekends now, from about 4:30pm Friday until Sunday evening.  She seems very excited about it too.  Since they live in Stuy Town (just above 14th Street, E of 1st Avenue) it will be a lot more convenient for most of us.  Excellent news.  k

SUZIE IS HOME ON WEEKENDS!

Hi All,

As of last weekend Suzie will go home on Friday nights to her parents home in NYC and not return to Park terrace till Sunday evening. Last visit i had with Suzie she was very shy but still rocked her pink shades when we went to get some air... Let's try and plan a trip to the Moon's soon..

JANINE

THE RETURN OF THE DIVA

I paid an Easter weekend visit to Suzie on Saturday, and saw something I haven't seen in a long time: Suzie with attitude.

I've known Suzie for a long time, maybe seven or eight years, and I can't claim that we've always gotten along. There were definitely times where I found her difficult, or she found me difficult, or both. I haven't necessarily seen that dynamic between Suzie and other people, but it's happened more than once between the two of us. And it wasn't always pleasant. Actually, it was never pleasant.

Since last Summer, I haven't seen that aspect of her personality -- or what I consider to be that aspect of her personality -- come out. Until now.

I arrived at Park Terrace in the late afternoon on Holy Saturday and Suzie's mom and her two very friendly, non-English-speaking aunts were with her. There was a cake in a box, tied with that braided, red and white string that only seems to be available at bakeries (this one came from Staten Island, courtesy of one of the aunts). Small plates and forks were all around.

"Happy Easter," I said.

"Happy Easter," Suzie repeated.

Mrs. Moon offered me some cake (sadly, it was carrot, so I only has a taste) and she and her family exited. I took off my jacket, jammed it in my backpack and sat down in a chair next to her.

"So what's going on?" I asked.

"Over there!" Suzie blurted out in a loud voice, pointing out the door towards the elevator with her left hand.

"What? Do you want to go downstairs in the elevator?" I asked.

"Over there!" she repeated, with the same urgency.

"Do you want to go to the TV room?"

"Over there!"

"Do you want to go for a walk?"

And then, silence. Suzie frowned, turned toward the TV, fixed her eyes on an episode of Extra with Mario Lopez and proceeded to give me the silent treatment.

"You can't get mad at me when I don't understand what you're trying to say," I complained.

More silence. She stared at the TV and turned up the volume on the remote.

"So what's going on?" I asked, with no answer. "How are you doing. What's new?"

I followed each question with "huh?" to cover the silence and, in part, in an attempt to badger her into an answer. It worked, sort of.

"Huh? Huh? Huh?" Suzie repeated back at me with a mocking eye-roll. Then she went back to staring at the TV.

"Look honey, I don't come out here for my health," I said. "I come out here to try to help you, so you can ease up on the attitude, okay?"

Me fighting with Suzie -- same old, same old, right? Definitely, and that's why it's good news. Ever since last summer I've been visiting Suzie and telling her everything will be okay, comforting her, hugging her, giving her a kiss on the cheek. Yes, I've demonstrated tough love as well, in my efforts to help her relearn and regain function, but never have I seen the diva that I knew (and often didn't love) back in the old days.

On Saturday she was back.

Eventually, I determined that Suzie wanted to follow her mom, so we went down to the first floor common room. As I wheeled Suzie in, half a dozen residents were staring intently at a No Money Down real estate infomercial on TV. The sound was near-deafening.

Mrs. Moon was sitting on a chair next to the out-of-order snack machine, reading a book. Out the window behind her the sky was inky and a cold, early Spring rain was streaming down.

"Outside?" Suzie said to both of us.

"Not today," Mrs. Moon replied, as we rolled her over to look at the rain soaked courtyard.

As Suzie got to the window, she caught her reflection in the glass, and quickly readjusted the bangs on her forehead. It took just a second or two -- that moment where you see yourself and primp -- but it felt to me like a breakthrough. It was so subtle, so second nature for her. That was the second sign of the day that the old Suzie is still there, inside. Even amongst the indignity of not being able to care for herself, she still wants to look her best.

"You want to play the piano?" Mrs Moon asked. Suzie shook her head, yes.

I opened it up and wheeled Suzie over. Mrs Moon began playing scales and Suzie smiled broadly. Then her mom took her left hand and helped her bang out a few notes on the keys, which seemed to make Suzie very happy.

The infomercial ended and the viewers began to disperse, so we moved over to a table near the giant aquarium. I pulled out a box of picture cards and held up a card with a bottle of milk and another with a bright red apple.

"Which of these two things comes from a cow?" I asked.

Suzie correctly pointed at the milk. I continued quizzing her and she continuing answering. Cognitively speaking, her answers were perfect, but her speech clearly isn't progressing at the same pace. I would ask her what something was, or what it was called, and she would hesitate, or try unsuccessfully to say the word.

Whenever that would happen, Mrs. Moon would chime in with the answer. I understand why a mom would want to do that -- it's natural to want to help your child, when they are suffering -- but it frustrated me. Suzie won't re-learn things if people coddle her, or feed her answers. I don't want to push her too hard, but I also don't want her to be unable to communicate for the rest of her life.

"No help from the audience!" I said, playfully chastising Mrs. Moon. That didn't work. So I altered my plan and instead, when I would ask a question, I also added the first syllable of the word I was asking for. For example, I would hold up a picture of a snake and say, "What's this? Ssssss.."

In most cases Suzie got it, without additional help. It's fascinating that she often can't find the word on her own, but she can when she's prompted, even with just a sound.

After this we took Suzie back up to her room, where her dinner was waiting. Her mom began feeding her and I said my goodbyes.

"Happy Easter Suzie," I said.

"Happy Easter," she repeated, with a mouth full of chicken.

From the 8th

I forgot to post from my visit on Sunday the 8th, which was after Suzie hurt her shoulder, but before the sling or the change of beds.  She was in a good deal of pain because of her shoulder, but that didn't stop her from wanting to do a number of activities.  Both her mom and dad were there when I arrived and, as always, they seemed happy to see a Suzie visitor.  They both vacated the room and Suzie and I agreed to turn the tv off and we got to work.  I'm always amazed at how quickly the time flies once we get working.  We played several games of "concentration" with the paired cards and she was relentless.  With each card we would talk about the image - if it was a train we'd talk about the sound a train made, about train tracks, about subways, etc.  My hope is always to find things that hook the words and the concepts together in her head, and I feel like the more details - sights, sounds, pictures - she gets the better the chance of that connection happening for her.  

We also did a little painting and tried to listen to music while we worked but found it too distracting (me probably more than she).  

Thanks for all the recent updates about her shoulder and her move.  I love the idea of taking a laptop out there.  Will, is there internet access or were all of these pictures on your harddrive? 

kevin

A WEEKEND DOUBLE-HEADER IN QUEENS

It was a busy weekend out in Queens.

On Friday I flew back to JFK from a week-long work trip to London, which had prevented me from visiting Suzie last weekend. I've been trying to get out to Rego Park once a week, so I felt bad that I had to to miss a visit. As my cab drove by Park Terrace on the L.I.E, I vowed to make up for my lost weekend.

On Saturday I found Suzie in her room, looking fresh from a shower or bath. Her hair was damp, she was wearing an over-sized Moosehead Beer t-shirt. She had great color in her cheeks, the best I've seen yet. You might even call it a healthy glow.

As Betty reported, Suzie had her right arm in a sling, and she appears to have been moved to the bed closer to the door since her injury was discovered. What is unclear, however, is what she actually did to her arm, when she did it or how she did it.

Nobody seemed to know for sure, except maybe Suzie. And she's not telling.

Like Betty, I heard the words "break" and "fracture" from one or more of the nurses, but a nurse named Michelle told me that it was a sprain. I hope it is just a sprain, because allowing a break to heal with the arm in a sling (not a cast) is far from an optimal healing method.

When I arrived, Suzie was sitting near the door with her mom and her aunt. Every other time I have visited recently, Suzie has been with her father. It was good to see Mrs. Moon again, particularly since she is better able to communicate in English than Suzie's dad.

Mrs. Moon told me about Suzie's arm, and she said that the Korean doctor who had been visiting Suzie was no longer coming, due to her injury. She also said that Suzie had been taken to NYU Hospital in an ambulance for x-rays. As she told me this, she fed Suzie with chopsticks, pulling what looked like green kimchi out of a deli container.

"Suzie doesn't like Korean food so much anymore," Mrs. Moon said, sadly.

After that, Suzie's mom and aunt left us alone. Her new roommate (a middle-aged Hispanic lady) also vacated the room, which I thought was very considerate of her.

"What happened to your arm, Suzie?" I asked.

"I don't know," Suzie said. "Surgery."

"Did you have surgery?" I asked. "Or did you have x-rays at NYU?"

"Surgery," she repeated.

I don't think this is correct, but it's interesting to hear her use that word, perhaps, as a catch-all for medical treatment. It led me to believe that she was, to some degree, associating this medical procedure with the ones she had experienced last year.

"Do you remember when you had surgery last year?" I asked. "After your aneurysm ruptured?"

Suzie was distracted by the TV, so I asked her if we could shut it off. She said no, so I instead turned down the volume.

"Do you remember, being in dance class?" I asked. "You had an aneurysm in your brain and it ruptured. The blood vessel burst. Then they took you to the hospital. Some people thought you were going to die, but you didn't die. We're very happy about that. Are you, Suzie? Are you happy you didn't die?"

"Oh yes," Suzie said. "Absolutely."

"Good, I said. "But you don't remember what happened?"

"No," she said.

I told Suzie again about the brain aneurysm I had, which was treated back in 1997 before it caused any lasting damage. Although my situation was nowhere near what Suzie is enduring now, I did experience some issues with speech, memory and comprehension.

"I had some of the same problems that you are having now," I said. "I could understand what something was when I looked at it, but I couldn't think of the word, of what it was called. Does that happen to you?"

"All the time," she said.

"So it's all up here," I said, touching her head. "But now we have to get it to come out of your mouth."

"Absolutely," she said.

I know there are some people who may think I shouldn't talk in detail to Suzie about what happened to her. But I don't agree. I'm trying to put myself in her position to whatever degree is possible and, if what happened to her had happened to me, I would like to know why. I'd like to know how I got brain damaged, partially paralyzed and stuck in a long-term care facility out in the ass end of Queens. And, most importantly, I'd like to know how I could get out of there some day.

"I know being here sucks," I said. "Do you want to be here for the rest of your life?"

"No," she said, her eyes widening.

"You wanna get the fuck out?" I asked.

"Get the fuck out," she agreed.

"Good, then let's turn off the TV and get to work."

"Absolutely," she said.

The first assignment was for her to stop using the word "absolutely." I suggested "definitely" or "I'm in complete agreement" or "I agree 100 percent!"

"100 percent!" she repeated.

Then, since we were talking about numbers, I pulled some bills out of my wallet.

"This is money," I said. "Where do you keep your money? A wallet or a purse? Wallet or purse?"

"Purse," she said.

"Very good, which of these is a $5 and which is $1?" I asked.

We kept this up, rapid fire. I switched the five dollar bill with the one, and sometimes replaced the five with another single. Every time she got it right I gave her a high five. When she got it wrong I gave her a thumbs down. Whatever we did, I said the words, again and again, over and over. At then end of this exercise, she let out a deep sigh.

"Tiring, huh?"

"Absolutely," she answered.

"You can't say absolutely anymore," I reminded her. "What can you say instead?"

"100 percent," she replied.

Then I pulled out my computer. I asked her what it was.

"Cell phone," she said.

"That's close," I replied, pulling my iPhone from my pocket."This is my cell phone. And this is my computer."

I then repeated all the words I could think of relating to computer: laptop, Apple, Macintosh, Mac, keyboard, email, Internet, Facebook, screen. Then I pulled up the pictures we had used in earlier sessions: Barack Obama, Bill Clinton, Hilary Clinton, Hilary Swank, the Beatles, Madonna and Darth Vader.

We went through each picture. She got Obama right with no prompting, but the others required some help. When we got to Madonna, I started singing. Badly. "Feels like I'm going to lose my mind. You just keep on pushing my love over the..."

"Borderline," Suzie sang in a sweet voice, finishing the chorus.

Then I played her an MP3 of the Facts of Life theme and she was able to sing some of the lyrics to that as well. She did the same thing with a few Beatles songs, singing "Yeah yeah yeah" to She Loves You. Suzie remembers these things, and they make her smile. And it's good to see her smile.

At that point Mrs Moon walked in with Suzie's dinner, followed by Janine and Mia. Suzie ate like I have never seen her eat. I guess all that work made her hungry.

And there was more work to be done -- and fun to be had -- when I went back again on Sunday.

Suzie recognizes this picture every time.

Team Suzie Video

Hi All,

Just wanted to let you know we finally showed Suzie the benefit video and she LOVED IT! It was great to watch her view it. She laughed and AWWWWW'd alot. She seemed to pretty much know who everyone was. Our visit (frosty was with me) was very short and sweet. We basicallly just fed her dinner and watched the video.

Suzie was moved closer to the door so the nurses could keep an eye on her. As much as it stinks that she hurt her arm, it was great to know she feels the pain. This means she actually does indeed have feeling in that arm.. (which doctors before her fracture were unsure of)

Get out there and visit if you can! She needs the visits. The more visits she gets the happier she is and the stronger she becomes...

xoxox janine