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Steve

I had a very good visit with Marilee this evening from 6 to 7PM. She was alert and talkative. She still has trouble finding the right words or expressing some concepts and that’s just the way it’s going to be for awhile longer. However she has a better recollection of the last 3 days and only seems to remember bits & pieces of her first days in this hospital.

Marilee tried to describe how she was feeling. She said it seemed like the people walking past her room were moving “smooth”. I think she was trying to say gliding, skating or like they were on a moving walkway. She watched some TV and thought everybody on it was also moving “smooth”. She couldn’t make too much sense of the TV programs and was feeling well enough to be bored.

I printed out all the birthday and get well wishes that everyone had posted and brought them to her. She is not able to read but we’re hopeful that will be short term. I did read several of them to her but the names are not being recognized. Take heart, these messages will still have meaning over the days to come and she was touched that so many people cared.

In the meantime Marilee can flip through and look at the photos that were included, which she liked a lot. She was especially happy to see the photo of her cats, an inspired idea courtesy of Speaker to Cats Janet. Kudos to you, she’ll have a picture of her kitties near for comfort.

She said she had counted being seen by 7 doctors today. I’m not sure how accurate that was but she can count up to four (as far as I got in trying to tell) and she was able to resume an interrupted conversation after a nurse stopped by.

She said they had gotten her out of bed today and sat her in a chair. She really thought she was going to be able to just stand up and walk around to the chair. But she just couldn’t figure out what to do. They moved her into the chair and left her sitting up for awhile (the nurse station is right across from her bay just 10 feet away) until she became tired of it.

Marilee said it is difficult to move around with all the monitors they have taped to her. Even if she could walk she didn’t see how she’d be able to manage all the cords hanging from her.

Still no word when she might be moved to a regular room. I had a call from her physical therapist on Monday, asking me how well Marilee was able to get around before this. I told her that Marilee was self-sufficient; able to drive, able to walk, able to go to stores and restaurants. Her therapist seemed to think Marilee would likely remain in the hospital therapy program for 30 days. It’s still early to speculate but Marilee does seem to have a lot in her favor for an eventual recovery.

She is worried about her future; about bills, not being able to live on her own and not recovering all of her mental abilities. I assured her things were okay for right now and she needed to concentrate on positive thoughts towards recovery. Her brother Rick is coming up tomorrow (Wed) to see her, talk with the doctors and hopefully meet with Laura and myself.

Marilee did give me a good squeeze with both hands when I left. I was worried about tiring her but as I left she transitioned into an animated conversation with the nurse showing him the picture of her cats.

Here are a couple of misc notes in answer to some questions:

She does have her glasses and is wearing them.

Her neighbor Laura did find a spare set of Marilee’s medical history (pink sheet) and had faxed it in to Fairfax Hospital on Monday (Yay Laura!) along with a note to let Marilee know the kitties were being given extra special attention and the house lights & blinds are being turned off & on to simulate somebody being home. I read the note to Marilee again as she didn’t remember it.

Marilee remembers calling me Wednesday night and then deciding to call 911, but it took her a long time to actually figure out how to dial it.

The carved cat statute and card from Janet K are still on her tray and she smiled when I pointed to them.

She really has appreciated the visits from people and was amazed to see Keith on Sunday. She couldn’t remember his name but instantly recognized his face even though she says she hadn’t seen him in years.

If you do visit:
They seem to be okay with daytime visitors but you may have to wait outside if Marilee is being tested or occupied.

The nurses turn everybody out of ICU between 7-8PM for patient privacy time but you can come back at 8.

The outside parking lot across from the main entrance charges a flat $5 no matter how long you’re there. The parking garage uses a time stamp ticket to figure the charge.

Thanks again for everyone’s support.

_________________
Steve Johnsen
Book Group Friend

Ellen Datlow · Joined: 10 Mar 2009 Posts: 4

thank you so much for the update, Steve.

Geri Sullivan · Guest

Yes, thank you, Steve. Thank you for making Cathy Doyle's birthday greeting idea work so well, and thank you for your update from Tuesday's visit.

I wonder if music would be a comfort. It is one of her interests, though I'm hard pressed to name particular performers or styles that she likes. She has a keen ear for pitch, that's for sure.

Heavy on the instrumentals, maybe, since access to words and their meanings is jumbled right now?

Janet K · Guest

That's a very encouraging report, Steve. Doing the birthday/get well collection was a wonderful thing. I'm glad I could grab a picture of her cats--I traced back from a picture she posted on her LJ and found her directory of cat photos.

I'll be doing a nature walk late this morning near the river, in Maryland close to the beltway. I plan to go on afterwards to the hospital to visit Marilee.

(The surface lot only charges $4 for old people like me. When I pulled into it for my first visit, it was full and I had to wait for a car to leave before I could park.)

Ginger · Guest

As some folks on ML did for Soren, perhaps we could put together a music library on an iPod for Marilee? I emailed her a music file* and can use that to start a collection of music for her. If someone has an older iPod that the kids no longer want, perhaps they could lend it to her? (Or anything that will hold mp3 and mp4 files, really.)

I'll volunteer to put together the music if people want to email files to me -- not too many all at once, please! You can send things to ginger(dot)tansey(at)gmail(dot)com with the header indicating that this is for Marilee.

I can then arrange to meet Janet to deliver files or whatever might be necessary.

*She was using her Asus EEE for the music collection, so that's another possibility.

Guest · Posted: Wed Mar 11, 2009 12:40 pm Post subject: Thank you and Good signs

Thank you, Steve for keeping us all informed. I missed getting my Birthday greetings taken over, ironically I was admitting another friend to the hospital on the 9th and catching up on everything but e-mail on the 10th. I think my family will try to visit on Friday when Matthew is off of work and Dillon is home. I can print it out and bring it then I may bring it with a picture so she knows who sent it.

It is really encouraging to hear the progress Marilee has made so far, all of it, and so quickly, are very good signs.

I had another friend who recovered from a stroke- it was lots of work, but he went all the way from coma to walking and talking and even holding a job again, so I have lots of hope that Marilee will make a sound recovery, although it teared me up when I first found out. Marilee is close to my heart. Thanks so much for the many of you helping and caring for cats and so forth. Thank you for setting Marilee at ease about that. It is clear her heart is still in the same place.

Cyndi

Steve · Posted: Wed Mar 11, 2009 12:55 pm Post subject: Visit: Part 2

I was tired and late in posting last night. I really felt I should have been taking notes during the visit and I felt I left a few things out I wanted to mention. So here are a few more details from Tuesday’s visit that give a little more insight into Marilee’s current state:

Marilee didn’t know it was her birthday until the nurse told her earlier in the day. It sounded as if she was tickled that anybody at the hospital would care. So she was even more thrilled at receiving all the messages (it ran 16 pages in print) that all her online friends had sent her. She couldn’t remember how old she was and I confided to her that she was “29 unless you need the discount”. She got a kick out of that.

I also told her she only a week and a half left to finish her book for our next SF book discussion group get together. It’s actually classified as a mystery but is a spoof on SF fandom set at a Northern Virginia SF Con in the mid 80’s, “Bimbos of the Death Sun” by Sharyn McCrumb. It’s very dated and has to be taken as a period piece (1987). For those who have long been involved in fandom & cons it also evokes memories of the days before online communities (there’s many mentions of mimeographed fanzines!) I’m sure our group is looking forward to storytelling more than dissecting the book and it’s a terrible blow that Marilee won’t be joining us and sharing some of her stories.

However we did have a lively short conversation about the book and while she couldn’t remember the title of the second book, “Zombies of the Gene Pool”, Marilee was able to talk about it and compare some of the differences in general terms and state her preferences between the two books.

Once you draw her into a conversation she’s able to chat right along only slowing down when she can’t express a concept or recall a particular word. She’s pretty resilient when this happens and either figures out how to express herself differently or after searching long enough she’ll just shrug and say “oh well, you know”.

Such was the case when she talked about remembering both of last week’s helicopter transfers from Prince William Hospital to Fairfax Hospital. She couldn’t come up with helicopter or chopper but instead settled on “plane ride”.

I told her I wasn’t sure if it helped to supply her with the words (when I could figure it out) or let her try to puzzle it out. For the most part she is only mildly frustrated now, but I imagine that will increase as they reduce her medications. Hopefully she’ll also regain some functions being impaired the meds.
_________________
Steve Johnsen
Book Group Friend

Soon Lee · Joined: 08 Mar 2009 Posts: 3

Thanks for the update. Excellent to read that Marilee is on the improve.

Cathy · Guest

Steve thanks for making this happen. I'm glad that Marilee was able to receive birthday wishes from so many of her friends yesterday.

And Bimbos of the Death Sun, that brings back memories. It was supposedly based on the VT group, which was then composed of friends of mine who had just graduated from VT. They were not amused at the time.

Beki · Guest

Thanks again Steve for the updates and for taking the time to visit with Marilee.

And thank you to everyone who is giving their time and energy to her.

It is comforting to know there are people in this world who will take the time to care for one another. And I know when Marilee recovers and is able to read back and process what everyone did for her she will be grateful beyond measure.

For those of you who Marilee may not have notified, she is a committee member for Layne's Legacy - Beading For A Cure. For the past few months much of her time has been spent on updating the website and preparing the auction listings and order for this charity. Please check the link to take a look at her efforts!

AJ, another committee member, has taken over the listings in Marilee place. This week on auction is an item Marilee beaded.

I just wanted everyone to have the chance to see and admire the many talents of Marilee! Very Happy

Beki