IT'S RAINING MEN AT SUZIE'S, HALLELUJAH

As Kevin wrote in the previous post, Suzie was surrounded by men on Valentine's Day: Mr. Corstange; Mr. McKinley and Mr. Moon (a k a Dad). And I think she had a pretty good day.

When I arrived at Park Terrace, Suzie was reclined in bed, visiting with Kevin. I pulled out a heart-shaped box of Hersey's miniatures and yelled "Happy Valentine's Day." At that moment, from behind the pulled curtain, Suzie's roommate began to cry. I wondered if the roommate understood what I had said -- that she was missing Valentine's Day and would be, most likely, for the rest of her life.

"It's a bad day," her mother said.

Her cries were tough to listen to: a moaning wail, desperate and loud and tragic. I feel terrible whenever I see the roommate (I think her name is Joan) and her mother, Mrs. Lee, who is tireless in her devotion to her daughter, and in her support of Suzie. The young woman was apparently in a car wreck and appears to have lost a good portion of her skull. It's hard to look at her without gawking.

But, at the risk of sounding uncaring, I wish Suzie was sharing her room with someone else. I wish she was with someone higher functioning, someone who might engage her in conversation, someone in less dire straights. Suzie has always been something of an empath and I think her current state has only heightened that. She is clearly affected by her roommate's plight, and not, I believe, in a positive way.

It became clear to both Kevin and me that getting her out of the room was the only way to allow Suzie to focus. So, with her dad's help, we moved her from the bed to her wheelchair.

A clarification on this: Suzie can stand, with assistance. She is more mobile than she was last Fall, but less than I hoped she'd be after 6 months of physical therapy. Her right side remains largely immobile, but she appears to be able to partially support her frame while standing.

If you have any question about Suzie's mental acumen, you need only watch her with the Matisse sticker book that Kevin brought. After Kevin jumped on his Schwinn for the Tour de L.I.E., Suzie and I worked on a Matisse picture and her laser focus in duplicating the art was startling.

This was a great learning experience for me. Asking her to be engaged by a Dora the Explorer coloring book, I think, entirely misses the mark. Understanding that Suzie is still an adult woman -- and an artistic one -- is vital to her engagement and to her healing. Brilliant choice on Kevin's part.

I have fought the urge to take a picture of Suzie to post for all of you who have not visited. I have a sense that she would rather I not do that, if only because of issues of pride. But I did take a picture of the sticker art that we worked on. The left side is the original artwork. The right is Suzie's version, comprised of more than 20 stickers:

Suzie's work was limited only by the dexterity of her left hand, which still trembles when being put to use, and the difficulty in working with stickers one-handed. But mentally (and artistically) she was spot on.

And she was talking too. Last Sunday, I visited along with Janine, Mia, Kay Hayward, Suzie's friend Betty and Betty's husband and adorable son Alex. It was a big group and, I think, a bit overwhelming for Suzie. She didn't do much talking last week, but yesterday, she was working hard. The words didn't come our right, but she kept at it. She even mastered "Shut the fuck up!" which we prompted her to say to me whenever I get too aggressive (which is always).

Around 5 PM, after Kevin had left, Suzie became noticeably distracted. I asked her why.

"The clock," she said.

"It's 5," I said. "Why? Are you hungry."

"Yes. Dinner," she said.

I spent a while in the hospital a long time ago and I can attest to the comfort of routine, and the importance of mealtime. Even if the food isn't very good, it's still a high point of the day. So we headed back upstairs and Mr. Moon helped Suzie prepare for dinner.

"Happy Valentine's Day," Suzie said, as I put on my jacket.

"Happy Valentine's Day to you too, Suzie," I said. "And what's my name?"

"Will," she said, unprompted, for the first time since all of this happened.

Suzie Valentine

I biked out to see Suzie today. It was much longer, and a much more treacherous bike ride than I'd expected from the E. Village - not recommended - but I made it. It was nearly 3pm when I arrived - Suzie was flipping channels on the tv and her roommate was having a really bad, and noisy, day. Suzie was very happy to see me and was even more happy once she realized I'd brought a heart-shaped container filled with chocolate-covered candy. She had no issue with turning off the tv then. We each had a chocolate and then I pulled out a bottle of bubbles, which was a big hit. It wasn't easy for her to do, but whenever she did create some bubbles it was well worth the effort. Then, to my surprise, she wanted to play with a Matisse Sticker Book I'd brought. In it there are repos of Matisse collages and on the facing pages there are semi-done repos of those same Matisse collages. Other pages have stickers of the "missing pieces" you can use to FINISH the semi-done Mattise collages. I was afraid the book would be too complex - but Suzie took to it immediately and was very finicky about creating exact replicas of the Matisse collages using the stickers. She really seemed to enjoy it immensely and she was really good at it. Her focus and concentration were pretty intense.

Will McKinley arrived just as we were finishing up with a Matisse rendering and he suggested we head down to the 1st floor dining room, which was an excellent suggestion (away from the moaning roommate). I've never taken Suzie out of her room before, so it was a treat going someplace else, and the 1st floor dining room is a lot less crowded than the 2nd floor. Once there, we got set up at a table and we played "concentration" with some matching cards, and we talked a lot. I left about 5pm and she and Will were still in the dining room chatting about some Jackie Robinson book Will had found.

It was a great afternoon. I had a lot of fun and I think Suzie did too. She really seems to enjoy having things to do and there are quite a few activities out there now to do with her. And she was in a very talkative mood - maybe it's wishful thinking on my part, but I believe it's because she really enjoys the mental stimulus... and a heart-shaped box of candy doesn't hurt either. Happy Valentine's Day all. kevin

Saturday

Saw Suzie again today, this time armed with activities and we had a great afternoon. We played with a kid's game called Go Fishing, which she really seemed to love. Small plastic fish spin on a turnstile opening and closing their mouths and you have to pull them out with your plastic "fishing string." The fish vary in color, which allowed us to name colors as we played. The activity is relatively easy, but it involves some fine motor coordination, and since she's having to use her left hand now rather than her right, she can use all the fine motor practice she can get.

We also did some watercolor painting. Again, the activity wasn't hard, but it involved colors again, and doing fine motor stuff with her left hand again. And, again, she loved it (and created quite a lovely watercolor, to boot).

She gets so easily discouraged and even embarrassed about what she can't do that it was fun finding some things she enjoyed doing and actually seemed excited about. And since the conversation came out of the activity, there seemed to be less pressue about "getting it right".

I also took an Audio Book (the 1st Harry Potter story) and a dvd of Maurice Sendak cartoonified stories, but she didn't seem all that interested in either of those things - though she loves that TV and playing with that remote. During most of my visit we had the TV off.

Anyway, there are several games in her wardrobe and watercolors and coloring books and flash cards. It occured to me while we were playing the fish game that she'd probably like a good game of "concentration" - the card game - as long as it was scaled down to a manageable # of cards, say 6 or 8 pairs.

Her dad told me that she's been approved for home-visits on the weekends, so she may be heading into the city (they live in Stuytown) Sat & Sun which would make seeing her a lot easier for most of us. And it means she will probably be able to start spending some time outside as the weather warms up. Great news. kevin

Weekends

Saw Suzie today and she seemed well, although I agree with Will, she's watching far too much television and seems somewhat resigned to her current capacity to communicate. Her father told me that Saturdays and Sundays she only has a massage therapist who comes in the mornings and she's FREE from 12-5pm both days. Currently she spends the day watching television. I hadn't realized she had so much free time on the weekends and since that's the easiest time for me to go, I'll certainly head out there weekends. I also hadn't realized she was watching so much television. It's one of the worst things she could be doing. It's a huge bummer.

To combat the television viewing, which, sadly, doesn't encourage her to think or imagine at all, a great idea might be to buy her some books on CD. It would allow her to be entertained and not feel like she was 'working', while forcing her to use her imagination too.

She's having to learn to use her left hand (she was right handed before) to write with, so any children's puzzle or game that's fairly simple is great practice for her. She wants to learn, but I think a lot of what she expects from herself is beyond what she's physically able to perform and she's easily discouraged. Simple things can be encouraging.

I really just wanted to make people aware of her 12 - 5 pm window on the weekends. I took the E train to Roosevelt Ave, transferred to the 7 train to 111th Street and walked over. A worth trek.

kevin

KICKING ASS AT PARK TERRACE ON SUPER BOWL SUNDAY

As previously written, my New Year's resolution was to visit our friend Suzie more. And I've kept the resolution. After my unsuccessful attempt on January 1, I've been back two more times, including a Super Bowl Sunday visit yesterday.

I didn't post anything to the blog after my last trip out to Park Terrace, because I didn't feel like I had anything good to say. But I feel better after yesterday's visit, and I wanted to share the story with you.

I arrived at Suzie's room yesterday and found it empty. A family member of one of her neighbors suggested that Suzie had gone downstairs to the TV room for some sort of church service. I went back down to the first floor, but Suzie was nowhere to be found. Finally I found her in the common room on her floor, watching the Super Bowl pre-game show with a number of the other residents.

It was great to see her out of her room, socializing, to the extent that she and her neighbors are able to. I gave her a kiss hello and asked her if she wanted to head back to her room to hang out. Suzie said yes.

Once there, Suzie immediately asked me to turn on the TV and to give her the remote. The previous time I had visited (a few weeks ago) she was glued to Spanish-language game shows for most of my visit and I found it hard to engage her in conversation.

"I didn't come here to watch TV!" I said. "I came here to talk to you."

"Okay," she said.

For the next hour or so I tried asking Suzie questions about how she was feeling, how her therapy was going, how her parents and sister were doing, what she thought of Park Terrace, who had come to visit recently, if she had watched the presidential inauguration. Suzie seemed engaged with me and able to understand my questions, but completely unable -- or unwilling -- to reply with anything more than a one-word answer.

This is the same situation I had encountered on my last visit to Park Terrace, and it really disturbed me.

When Suzie was in the city, at the Rusk Institute over on the East Side, I saw amazing progress in a short period of time. By the time she left there, she and I were having conversations -- brief, yes, but real dialogue. I felt very optimistic about the prospects for her future.

But the last time I saw her at Park Terrace -- months after my last visit at Rusk -- Suzie seemed to have regressed badly. There was a spark in her eyes at Rusk, a fire, an anger, almost. And rightly so. She has plenty to be pissed off about. But I saw that anger fueling her in very positive ways, inspiring her to do the hard work that she needed to do to get better.

On my last visit to Queens a few weeks ago, I found her to be distant, complacent and sedate (or, perhaps, sedated). There was no fire anymore, just defeat. That was hard for me to watch.

I saw aspects of that again yesterday. Suzie would make a brief effort to answer a question and then she would quit, shaking her head in defeat. I saw it in her eyes - a moment of clarity, and then frustration.

"Can't" she would say.

"Why are you doing this?" I asked her. "Why are you giving up? Are you giving up?"

"No," she said.

"Then answer my questions," I replied, standing up and looking her right in the eyes. "Keep trying. Mess up the words, get them wrong, but keep trying!"

And then, finally, she did. I saw something click in her, and she engaged. An hour earlier she couldn't string together two words, but now she was answering questions.

"What year is it?" I asked.

"2006?" she said.

"Nope. Try again."

"2008?"

"Close I said," pushing my thumbs up in the air.

"2009?"

"Yes," I said. "Great job. Are you hungry?"

"Yes, she said. "What time is it?"

"It's almost five o'clock," I answered.

"Time for lunch," she said.

"You mean dinner?"

"Yes," she said. "Dinner."

Then I asked her again her if she was able to think clearly in her head, but having problems communicating what she was thinking.

"Yes," she said. "All the time."

"The only way that will get better is if you try to do it over and over and over and over," I said. And then I pantomimed cracking a whip, and made the "kaa-cha" sound.

"Thanks," Suzie said. "Kaa-cha! I like you."

I'm not an expert on any of this, nor am I trying to tell anybody what to do. But I know Suzie was doing better when all of us were visiting her on a regular basis on the city. She was constantly engaged, challenged and surrounded by people at full capacity. Some of Suzie's neighbors at Park Terrace are in pretty rough shape. I feel enormous empathy for them, but Suzie is my primary concern. It's human nature to adjust your speed to those around you, and I think that's (in part) what's happening to Suzie.

It's up to us to counteract that.

Janine and Mia and Betty and others are carrying the bulk of the load here, and I think they are doing an absolutely amazing job. It has been personally inspring for me to see the way people have rallied around Suzie. It's just an incredible group of people, and I am very proud to be part of it.

So I will continue to do what I can do -- which is to hop on the E or R train out to Forest Hills, jump on the bus for ten minutes and get to Suzie's room and start kicking her ass.

Because that is the only way to bring back the old Suzie that we all knew and continue to love.

Ciao Suzie!

Happy New Year All~

Janine, Adrian and I started off 2009 with a visit to Suzie following a stop at Park Terrace restaurant on 108th & 51st Avenue, Corona. Suzie has told us repeatedly that she's had a hankering for seafood so at long last , we delivered. If anyone wants a true Queens Italian experience to combine with a visit to Suzie I recommend this place and it's within walking distance to the rehab. You will think you're on a movie set - and the food was delicious. Dinner theatre - Queens style. We picked up some pasta fagiole, shrimp scampi with rice, zuppa de clams and a salad and I am pleased to say that Suzie did herself proud and polished off almost every bit of it. That girl can EAT. 

Her next request is a hamburger and fries so whoever goes next - order up! You might want to supersize it. 

Buon appetite, 

Mia

NEW YEAR'S RESOLUTION: VISIT SUZIE!

After visiting Suzie many times in the city, I still had never made the trip out to Queens. But that changed today.

Even with mass transit on a holiday schedule, I found it surprisingly quick and easy to get out there. I took the R train from Union Square to 71st Avenue Forest Hills -- about a 40 minute ride. (You can also take the E, F or G trains.) I caught the M23 bus right next to the station and 15 minutes later I was in Suzie's room.

I found Park Terrace to be a surprisingly nice, clean and bright facility.

The woman who greeted me at the front desk was very friendly, as were the nurses on Suzie's floor. There is a large room on the first floor where a few of the residents were gathered around a big screen TV, and another common room on Suzie's floor. A number of the residents greeted me and wished me a happy new year.

Where I erred was in the time I chose to visit.

I got to Suzie's room at about 6:30 PM and she was fast asleep for the night, tucked in under toasty warm blankets with a little stuffed animal. Her roommate's mom Mrs. Lee reluctantly let me come in and give Suzie a little hug, and then shooed me on my way. It's nice to know that our friend his this very nice lady helping to watch over her.

Janine tells me that the weekends are a good time to visit or, if you're free on a weekday, before 11 AM or after 3:30 PM when her therapy is done for the day. She has dinner at around 5 PM and tends to turn in for the night not long after that (as I learned today).

Now that I know how easy it is to get there, I'll be going back again soon -- earlier, next time, for sure.