Trial Run

I wheeled two boxes, twenty pounds each, of James's new food to the hospital today. My friend, Robert Whalen, was kind enough to foresee that I had not visualized the weight and size of the order I placed nor given any thought whatsoever of how I would transport it uptown, once he saw the boxes delivered by the mail room heroes to my office yesterday. He left a mini-hand truck which saved the day. Shout out to Jamal, George, and Robert for lending a hand. 

The new food is a lovely rich color made by REAL organic ingredients such as sweet potato, garbanzo beans, peas, carrots, brown rice, quinoa, broccoli, almond butter, kale, wakame and spices!  Spices like tumeric, rosemary, ginger, and garlic!  The first ingredient on the Nestle crap box after water is corn syrup--no natural ingredients are listed.  I am excited to see what the results will be due to this change of diet.

I spent the entire day with James.  He had speech therapy this morning which was basically eating yogurt and ice-chips.  The therapist also allowed him to drink water which James drank in as if it were nectar or restorative ichor--it seemed that novel and foreign.  It made me think of the moment in my childhood, while reading The Lion, The Witch and the Wardrobe, of being completely captivated by the idea of eating Turkish Delight from the White Witch.  There was his therapist in her white robe handing over the cup to James and he closed his eyes as he swallowed in complete rapture--from WATER.  James did not need to sacrifice or betray anyone for that drink though, it was well-deserved.

Group therapy was enjoyable as usual and a joy to meet an entirely new group of patients. I had a talk with James's psychologist later this afternoon and mentioned to her how much I enjoy being around the patients because they are so open, completely present, lacking pretense or judgment--that it feels restorative to be in their company despite the fact that they are all suffering to a degree from their cognitive impairment.  They feel much more in tune with reality to me than those outside in the city rush.

James does not participate as much as the others do during the group session. Today's topic was things to do during the summertime and I thought James would mention swimming but he stayed silent and smiled at the other patient's responses instead.  Wen Yu, the facilitator of the group, encouraged James to speak since swimming and visiting the Metropolitan Museum of Art were mentioned and he knew that these were topics that James would have personal experiences to share.  It is not clear what James was thinking during group. I will have to ask him!  I think his mind may be drifting. 

That was our little joke, in the past. So many students or fellow staff members would approach me at openings or parties and say, "oh you are so lucky, James is such a wonderful listener."  I would smile and agree but in truth--I am giving this away now--James's mind would sometimes wander while people spoke to him. I am not sure if he was always listening so attentively. 

James's favorite therapist, Jack, mentioned to me that the team had their weekly assessment of James and that everything is on schedule for his discharge date in June (rapidly approaching) and asked me if I had any questions. Of course, I have too many to even know where to start.  I asked for an obvious tutorial on how to spot James as he walks--the best position to ensure that if he stumbles or falls that I will be there to avert it or catch him.  Jack demonstrated the position and then, had me take over as we walked around the hospital hallways. I was nervous, felt tense.  Jack asked James how he felt and he beamed, "I feel secure with her hand at my waist."  Thank goodness one of us feels strong about it! 

We walked into the rehab's mock bathroom to demonstrate how James will get in and out of the tub and the gear we will need to make those transitions.  Jack is calm, knowledgable, and makes me feel that yes, we will be able to do this on our own.  It is daunting, though.  Jack explained that the therapy James will receive at home will be minimal, at most, 30 minutes sessions, three times a week.  Obviously, that is not enough therapy to sustain him.  Jack said what he knew to be true, "Jen will be your therapist." I am grateful that he knows enough about us to say that without hesitation or qualification.

Jack's last session with James will be Tuesday because he's getting married.  Jack advised that I record his final sessions with James to use as a basis for my own work with him.  This is so generous and I am grateful. He also mentioned that he would like to come out to visit James, once or twice a month for sessions.  This man deserves a painting, I think. 

James's doctor popped in to check on James as I was unpacking the food.  He had not seen it before and asked if it received complete approval by the hospital. I told him it was embraced and that the dietitian explained that it would probably be given to patients but for the expense. He asked if he could take a photograph of it with his phone.  Yes, yes indeed.

I need to install the stair rail on the two flights of my three-family building in Greenpoint but have received push-back from my landlord.  It is somewhat surprising and disappointing. I am up against time now because the Mt. Sinai team has suggested that James come home next weekend for a brief visit as a form a therapy. They want him to experience what it is to return home and then, go back to the hospital to have the space to contemplate the move that will occur a few days later in the new week.  I need to install the rail immediately. I do not think I have the luxury of waiting any longer. I do not have anyone as of yet to complete the task. I am hoping to have someone hired or determined by this weekend.

James's psychologist asked to speak with me today because she wanted to review James's cognitive state with me.  He is in the midst of the flux of recovery so an assessment of his brain capacity would not be salient at this juncture. James's progress is somewhat constant at this point but eventually it will plateau a bit and that will be the moment to assess him to make decisions about the further cognitive therapy he will need. That is probably four more months from now.  She suggested that at discharge, I place James on a waitlist for programs in the fall because they will be difficult to get into, as many things in NYC.

I think she wanted to convey to me that James will not be whole in his mind for some time.  I knew this already, intuitively.  We want to remain positive for James's sake and create goals for him, such as returning to teach in the fall, even though we know he will not be ready.  At some point, James will realize this about himself and that is when the true work will begin. 

I confessed to the psychologist that I would be perfectly fine if James did not regain his ability to teach.  I think this is his chance to work on his art, full-time, without the constraints of financial obligations or the distraction of teaching. James loves teaching and I think it would be a loss in his life.  He adores the 92nd Street Y as an institution. Anything is possible and I am not ruling it out. He may be able to teach on a lighter schedule--one class instead of two. 

I am open to having a new life, though--whatever the healing process will bring. 

If I stop and think about the weeks ahead, I will admit, it is a whole hell of a lot to digest.  I am embarking on yet another career here!  Thank goodness for the massage therapy background--at least, it is a start.

James's doctor pointed out that his left hand is becoming stiff.  I did not notice it.  I was massaging James's hands and feet every day in the NICU.  I have not been as attentive in rehab to his hands.  I brought my manicure set to work on his nails and after hearing his doctor remind James about hand exercises this morning, I examined James's left hand and found it slightly rigid.  I worked on it and the results were immediate--he was able to close his fist tighter.  I have to add that to the daily routine as well.

Friends, I will need you support when James arrives home. I will need to go out during the week to shop for groceries or do chores since I will have the three of us together again.  It would be great to schedule visitors during the day so that I may have the opportunity to go out and James will be under the watchful eyes of friends.

There is really no such thing as a trial run since life is what is happening now.