Get Your Seatbelt On

When I arrived this evening, Sam was in the hallway outside the nurses station and seemed to be doing a bit better than the day before. When the nurse saw me, she said "Sam" show Marcie your seat belt. Sam didn't really respond, so the nurse walked over and said, Sam...show Marcie how you can get out of your seat belt...finally after a few more requests, Sam showed me her new seat belt and then pulled the seat belt off and a very loud alarm sounded. Okay, that is why the nurse wanted Sam to demonstrate this for me...to show me that she is safely alarmed in her wheelchair. Apparently today, Sam had made a few attempts at getting up out of her wheelchair, and since she is not yet able to walk (she's getting there though), the seat belt is alarmed. Now Sam has an alarmed bed AND an alarmed wheelchair. At least they are being cautious.

Our Anniversary

Today was our 15 year Anniversary. Last year, when Sam was fine, before this tragedy struck, we had talked about how we were planning on celebrating this day. We were going to have a simple party in our new house and invite all of our closest friends. We new that the magnolia tree in the front yard would be in bloom, along with the cherry blossom trees that line the street. We also new that the lilac bushes and all the tulips would be blossoming as well. It was going to be not only a celebration of 15 years together, but really a celebration of Springtime as well, with all of its' inherent meaning. This morning when I left the house, the yard was even more beautiful than either one of us could have ever imagined. It was tough walking down the steps by myself. In an attempt to celebrate in a small way this afternoon with Sam, I bought two fuchsia colored plastic champagne glasses along with some flowers to Park Terrace. I was trying in my mind to think of today as just another day, but of course it was not. I also had hoped that Sam would be having a good day, but unfortunately, she was not. Sam spent the evening talking about a lot of crazy things which made the evening that much more difficult. There were some funny moments however, like when we were having dinner, and I poured Sam's orange honey thickened liquid into her champagne glass and then poured my Odwalla Blueberry drink into mine, toasted each other and then took a sip....Sam said "this is not Champagne...what is this?" Before I left we both did talk about how much we loved each other, but that is something we do every night. Today was just another day of rehabilitation for Sam, part of the ups and downs. For me however, it was a lot more.

"Are" Book

Sam was having a very good day today and she never ceases to amaze me. We were watching a cooking show on T.V., and Sam asked for a pen and paper so she could write down a recipe. Unfortunately the TV show did not provide the recipe she wanted, but since she had the pen and paper in hand, she wrote down "Sam and Marcie" on the page instead. I couldn't believe it....all of a sudden she can write and spell words clearly. I asked her when she started being able to write and she said she's been working on it, and pointed to her head with a sly smile. Typical Sam. She then wrote down "Are Book" and told me it will be "our book", that she wants to work on. I explained to her that "are" and "our" are slightly different words but sound similar, and I believe she understood. The slight misspelling however, did not negate her amazing feat. We then watched a show on alternate energy about cars, and I know that she understood the content of the show much better than I did. I still wanted to see her write some more words down, so I asked if she could write out the last form of energy we just heard about...which was "cellulose". She said "okay" and wrote down "cellulose". Just fantastic. Also, right before dinner, she asked me if I wanted to go out to a nice restaurant tonight. She thought it might be a good change and then we could have a nice atmosphere where we could talk. Again I was amazed. I told her of course that I would love nothing better than to go out to a nice restaurant with her, but that we just had to wait a little bit longer until that could happen. There are days when a light shines in, and I feel hopeful about Sam's recovery and about our future together. Today was one of those special days.

Two Wishes

Sam greeted me this afternoon with a huge smile and a big hug. She was watching Deal or No Deal on TV and was fascinated by all the money and excitement of the show, but had no idea what it was about. I too have seen the show and can confess that I have no idea what it is about. However, the show made Sam want to talk about what she would do if she had a million dollars and being Sam, she said simply that she would help the world and would give money to those in need. The world seemed to be on her mind, but she turned to me this time. She told me that if she could, she would give me the world. She wanted me to have everything she told me. Immediately the conversation turned to how we feel about each other, and with both of us in tears, Sam told me that she had two wishes; one was for each of us to have a good healthy, independent life and the other was for us to have a good life together. We talked about this in more detail, and then were interrupted when Sam's dinner arrived. The discussion changed a bit and Sam began to talk about some things that I didn't quite understand. But then, out of the blue she said that she wished there was a spiritual pill she could take. What a brilliant idea. If only such a pill existed and Sam had a milliion dollars, the world would certainly be a better place.

Getting Back to Work

Over the last few days, Sam has been having some very clear moments and then some not so clear. She has always had many varied interests and would read everything in sight. All of this information seems to be coming back to her, but often times the important connections seem to be missing. She also talks about some crazy things at times, and in many instances I kinda understand where she is coming from, but only to a certain point. Some of the scenarios she tells me however are really quite funny. The other night, when I told her to get some rest, she said, "how can I rest, I have to practice for my performances." I said.."you are performing? What are you doing? " She said, "yes" I am performing for the African Nation of Mombazza" "you are" I said...what are you doing for them..? "Well, its for the children... I'm helping to educate them"...and so the story went. Sam also now thinks she needs to get back to work, as quickly as possible "I haven't worked in a long time". She then said that she needed to "deliver some important papers" to Emily.. "I have to put this in her mail for the evening" she told me, trying to get out of her wheel chair. I told her not to worry, that it was the weekend and she didn't need to work on the weekend. This did not satisfy Sam who said "we're development people..you know we need to work all the time" She then seemed to need to deliver some things to Philippe. The only way I was able to calm her down and dissuade her was that I made up a story about running into Philippe on the elevator..." and he told me to tell you that he was going out of town for awhile, so you don't need to drop off the papers right now as he doesn't need them right away". - This seemed to work. In all of these discussions with her, I realized of course that she strongly identifies with the Metropolitan Museum, which of course makes sense, since she has worked at the Met for over 19 years. It is good that she remembers parts of her job and most of the people she has worked with...it is not good of course that in the Rehabilitation Facility she thinks she can walk out of her wheel chair to deliver papers to Philippe and Emily.
She also was insisting for awhile that I take her upstairs to her office. She needed to get to her desk. She was so insistent in fact that I went out to the nurses station to ask what was upstairs and if Sam would have ever been there. The Nurse said no- it is just the same as the other floors and no reason Sam would have been there. I then realized that Sam must have been thinking that we were at the museum and therefore we would have been in my office and Sam's Office was just upstairs..."Marcie just take me upstairs to my office" It kinda made sense, but it is hard to figure out sometimes. Sam definitely thinks she needs to get back to work, and overall, I think that is a good sign.

Alarmed Beds and Comic Relief

As Sam becomes more aware, she thinks she can do things that she actually, physically can not, such as walk. This morning the nurses found Sam on the floor next to her bed. Fortunately she hadn't hurt herself and was fine, but they now have alarmed her bed and put mats down on both sides in case she falls out of bed again. This is, I am sure a good sign, but yet it is something else that I will be worried and concerned about for awhile. When I arrived this morning, Sam was in a very active and alert mood and we had a very good day together. There was a bit of comic relief when I overheard her roommate and her talking. Her roommate asked her how she was doing and Sam said she had an bad allergy. Her roommate said, "what , you have a bad attitude?" and Sam said ...ahh, yes I guess I do. Her roommate then said "I do too..." and they both continued this way for awhile. Later on, Kathy, her roommate said that Sam and she had met a long time ago. Sam said "yeah, I think it was when I was around 21 years old or so." Her roommate agreed. I then piped up and said that was not possible, and her roommate said, "well between my brain and Sam's we don't now what the hell is going on". Perhaps I was overtired, but I just was laughing out loud for half the afternoon listening to the two of them go back and forth. It was much needed relief.

Progress Report

I received an excellent progress report on Sam yesterday afternoon from the facility. Apparently Sam is the "darling" of the facility and has charmed everyone who comes in contact with her. In physical therapy they reported that Sam is doing what is called step level 1. She is working out on a kind of step/bicycle machine. She had in the past needed constant attention on the machine, but now happily does it on her own. Her retropulsing is receding and slowly going away. In occupational therapy, she is now intentionally reaching for objects which is a very good improvement. She has been upgraded in her cognitive class from the "arousal awareness group" to the "reasoning group". Overall, all of the therapist agreed that she is less restless, less distractable, and showing more appropriateness. They too have seen that she is much more emotional, crying a lot and I was told that this is a very good sign. They now have a neuropsychologist working with her a couple of days a week as well. In terms of her swallowing, she is able to take her medicine by mouth and is eating 3 pureed meals a day. They still need to get her to eat solid foods and thinning liquids, check her nutritional counts and then, finally they will be able to remove the g -tube. It still might be a couple of weeks away, but we she is getting much closer to that goal.

Getting Better, Getting Worse

As one of the nurses told me awhile ago, when patients start getting better, i.e. more aware of their situations and surroundings, they start getting worse. I believe this is what is now happening with Sam. She has become a bit more aware and therefore is having a tough time with where she is, what is happening and what has happened to her. She is definitely scared and asking all sorts of tough questions, that don't seem to have answers to them. It is hard for me to see her struggling in this way, but I need to keep in mind that this is what progress looks like.

Easter Sunday

This morning when I arrived at Park Terrace, I found Sam in the dining room, parked in front of the large screen T.V. watching a priest talk about the meaning of Easter. The T.V.'s are always extremely loud, and this morning was no exception. I took Sam into her room where it was nice and quiet, and she already had a lot on her mind and needed to talk. The subject today though was God, spirituality, Catholicism, Judaism and that was just the beginning. Sam was extremely emotional and was struggling with what has happened to her, the meaning of life and God. She talked about feeling helpless and through her tears told me that she loves God and wanted to go to Church to pray. This is the new Sam speaking and it will take me awhile to adjust and to get to know and understand this newly emerging person. Sam was also struggling with the fact that I am Jewish and she is Catholic, and I finally came to understand that to her this meant I would not want to go into a Catholic Church with her to pray. In trying to comfort Sam I told her first that we could pray right where we were, in her room (this of course is the Jew in me, the nomad, running, praying and making a "temple" wherever you happen to end up). Sam liked this idea. I also told her that I would try to find a person of God to come listen to her, so she could have some spiritual guidance. She also liked this idea as well. Sam then started talking about how much she loved me and that her love for me was forever and very real. She repeated this to me in many different ways, over the course of an hour or so. We both managed to go through an entire box of tissues until we were interrupted by the nurse. Afterwards, I tried to change the subject with Sam, but not before she asked if I would give her the shirt I was wearing so that she could hold onto it when I wasn't there. I understood this sentiment exactly since I actually felt comforted by wearing her shirts when Sam was in the ICU and stepdown in the hospital. There are many reasons why we are together and so much in love. I did finally get her looking at the B&H catalogue and talking about photography. I also got her sketch pad out and the New York Times and the afternoon took a lighter turn. I will talk with her doctors tomorrow however, just to alert them to the fact that Sam's emotions are truly deepening. I am usually the first person to see this happening and it is helpful for all those working with Sam to know what she is experiencing, so they can better help her get through it.

Consistency

Sam has definitely reached another level in her recovery. She has become slightly more aware and consistent in her knowledge of her surroundings and people. She seems to be trying to leave the "young/kid" Sam behind, although that person does still crop up periodically. She handed me her stuffed animal yesterday afternoon and told me that these are for kids. She doesn't want it anymore. During yesterday's visit, Sam was looking great and had lots of thoughts on various topics. She is still interested in talking about her photography projects, but it is very difficult for Sam to express herself verbally in the way she wishes. She was thinking about all sorts of things, but when she tries to communicate it to us, it does not always come out the way she wants it to. Sam is aware of this which is a good sign. Wendy and Aileen brought Sam the B&H catalogue she had been wanting to look at and also a small camera to play with. Sam right away was able to pick-up the camera and appeared quite comfortable handling it and trying to take pictures. She also seemed to enjoy looking at the catalogue. Also, it is interesting how easily we all fall back into certain patterns. There was a wonderful/funny moment when I went to look for some money in my bag to give to Wendy and I didn't seem to have enough cash on me for what was needed, so Sam right away said, -- "do you need some money?" . This was how our relationship used to be.... me never having quite enough cash on hand at any given time, but knowing that Sam always did, so she would give me a twenty to cover whatever it was at that moment that needed to be covered. Also yesterday, very strikingly, Sam's emotions have deepened and become stronger. Sam and I had a long talk again yesterday afternoon after Wendy and Aileen left and she told me how much she misses me and how difficult it is for her, especially at night. I shared the same sentiment with her. She was crying a lot, but would then get herself together. She was still upset, when I went to leave, even though I assured her I would see her in the morning. She seemed to really understand all of this when we kissed goodnight.

The Weeks Overview

On Monday evening (really Tuesday early morning), Sam and I were back in the emergency room having her feeding tube replaced once again. The emergency room doctors and nurses recognized us, and in fact one of the doctors who had helped us the last time around (about two weeks before) commented on how well Sam was doing and how much better she seemed. It was only a 3-hour visit this time- the shortest imaginable for an ER visit, and Sam was actually very calm and more aware of things than in the past. When we returned to the facility early on Tuesday morning, I again complained about this situation in particular and the doctors ended up re-evaluating Sam later in the day and now she is having three meals a day. However, she still has the feeding tube in, as it is a long process to wean someone off properly and safely.

One thing that I have noticed this week is that overall Sam is consistently more "there". It is very hard to describe exactly what that means, but it is a slight positive shift. Last night Sam talked about photo projects that she wants to do, and asked for the B&H catalogue (I had previously asked her if she wanted to see the B&H catalogue but was thrilled that she brought it up this time) . I believe Sam was inspired by one of the many cards that people have been sending in to her which had three photographs on one page of a newborn baby. After looking at the card, she asked if we could take pictures of our daily lives, and then "print" them on one page...maybe 6 to a page. I asked her if she meant that she wanted to document her daily activities and the people around her and she said "yes"..."exactly". She wants me to do the same at work. Sam did not describe this project as clearly as I am writing it down now, but after a back-and forth with her, this is what she was thinking. She then came up with many other project ideas - typical Sam- and I decided to keep a journal of her art project ideas, for when perhaps she can truly carry them-out. She very much approved of my jotting down her ideas in a notebook and then referencing them later on. She even noted that the projects were not something that was "durable/doable" at the moment, but maybe later. I was thrilled that she seemed to grasp the concept of "later" . I look forward to seeing her this weekend and seeing if she revisits any of her photo ideas. When I left her last evening, she was still thinking about new photo projects.

Becoming More Aware

Sam was in a very serious and emotional mood yesterday. She wanted to talk with me in the afternoon and started by telling me that she just wanted to go away for a little while and think about things then she'd come back. She feels very odd, she said,....things are not quite connecting, there are gaps....something is not right. She just needs a break. It's really hard for her, there is something unusual going on.... I have talked with her in the past about what happened to her and did so again yesterday, but Sam continued...I feel kind of drained, I don't know what else to do ...and then in truly typical Sam fashion, she said that "I'll take a break for a little bit and then I'll come up with a solution". Yesterday was a very emotional day for both of us, as we were engaged in this type discussion for many hours, talking and crying together. I tried explaining to Sam that she was doing really well, had already made great progress and just needed more time to heal. I told her that she was doing everything that she could at the moment and that she was truly amazing. Sam then went on to tell me how much she trusts me, that I was her best friend and that she loves me very much. She also asked what she could do to help me. A couple of times the nurses came in and I had to tell them that we were in the middle of a very intense conversation. They of course picked-up right away and let us be. Sam also talked with me about how alone she feels and I tried to comfort her. After awhile, we both were emotionally drained, but feeling better. We agreed to have more such talks in the future and in the back of my mind I knew that this discussion, Sam's awareness, was a good sign. When I left Sam and I flexed our biceps at each other showing how strong we are and with a smile and some kisses, we wished each other a good night.

Cornflakes

Today was another good Saturday for Sam. She wasn't as clear as last week, but she was alert talkative and responsive. A number of times she surprised me with her quick sharp wit. For example, I was talking with her a little bit about our computer at home and how I wished she were there to help me because I really didn't know how to do certain things like download photo's from our camera. Sam was always the computer wizard, not me. Without missing a beat, she looked straight at me, pointed her finger at me and said "practice". We were also watching a French cooking show on TV, and out of the blue she said "oh..they usually have Julia Child on this show". I don't believe that was correct, but nonetheless, it was pretty sharp of her to associate French cooking with Julia Child. And, most impressively, later in the day, I had given Sam a pad and pencil for sketching and after a little bit I saw that she had actually written a few letters out for the first time. The letters were "cor" . I asked Sam if she were trying to write anything in particular and she said yes..."cornflakes". Well, I'm not sure why she wanted to write cornflakes, but I was pretty impressed. She never did finish writing the word out, but I thought it was quite amazing. Writing is extremely difficult for someone in Sam's condition, so even writing those few letters out correctly was truly an impressive feat.

Good and Bad

Twice a month I get a report from all of Sam's therapists about her progress. Today, I received the report and the good news was that her cognitive focus has gotten better, her overall speech has improved and her sitting balance is better as well. They also told me that in physical therapy she is "retro pulsing" . The way they told me didn't sound good, so of course I asked for an explanation of what that meant. Apparently, when they have Sam up on her feet, instead of walking forward, she walks backwards. At first I thought it was kinda funny that she was moving backwards, because Sam has always been unique. However, they explained that it was not uncommon with certain brain injuries for this to occur, and that they hoped to be able to work with her over time, so that she will be able to walk forward. To me, any walking was good news. Overall, it was actually a good two-week update.
Tonight however when I went to visit Sam, it was the young kid-like Sam that I encountered. Despite the fact that she was wide awake and talking up a storm. which is a good thing, .....most of what she was saying did not make sense, and what did was very odd. She also was putting everything in her reach into her mouth, and was extremely fidgety. I know that the evening visits can be hard sometimes, and tonight was exhausting watching her do these peculiar things. It is at times like these that I need to reach back and remember the really good days, such as this past Saturday, where there was real hope for better times ahead.