How do I get home?

James second day of rehabilitation seemed epic.  When I first entered the room this morning, James was washing his hands in the bathroom with his occupational therapists (OTs).  James is in a wheel chair that the physical therapists (PTs) spent about thirty minutes adjusting to fit James's long upper body with his unusually lengthy swimmer's arms.  He presents a bit of a challenge to pour his body into a chair and have it be comfortable for him and in the correct alignment.  To end his grooming session, the OTs had James relearn to comb his hair. I told them that actually, James never combs his hair, so their lesson was timely and primary. The OT's brought out a white board to see if James would like to write but he preferred pen and paper.  He began writing immediately.

James wrote about his suffering. Although, it was saddening and difficult to read that James is experiencing pain, I was grateful that he has the capacity to describe it as "relentless."  That's such a specific word. In fact, everything he wrote today was quite lucid.  He even drew a picture of himself to explain his experience last night when the nurses used bolsters in his bed to rotate his body to prevent bed sores. It was an abstract of a human figure but one I recognized immediately from the drawings that James made as an undergraduate student--very Paul Klee-like--it is not something an OT would be able to parse out without my guidance.

James was previously unaware of all these bodily sensations and now that he has woken up to discover this unexpected and perplexing situation of his debilitated body--he has nothing but questions. The OTs and speech therapists had difficulty reading his handwriting but it was perfectly clear to me. James and I are usually on the same wave length so it does not take too much for me to interpret where he was going with his drawings and spare words. I pointed out the word and the OTs said, "Oh, yes, I see it!"

James and I had our first rehabilitation argument. The therapy sessions are sprinkled with breaks in which James should be resting. However, he was so excited to have the capability to write that he wanted to communicate with me during his down time.  The OT walked by our room and popped in briefly to say, "It is ok to let him rest."  I was not instigating the communication!  James wanted to ask about the tremors he is experiencing in his right arm that move up to his neck and face.  I did notice this tremor right before we left Bellevue and thought it might be a side effect of his medication.  I meant to discuss this with the doctor--the PTs noticed it too.  James told me he felt it all over his body while in bed last night.

I tried to explain to James that he is experiencing pain because he has been immobile for thirty days and suddenly, he is being placed in a sitting position the moment he wakes in the morning until the evening when he is prepared for bed, kept awake, and made to work. James has therapy in intervals all day long and it is totally exhausting.  He could not fathom why all this was happening.  I explained that he needed rehabilitation therapy to recover. He wrote, "Let's stop."

I am afraid that this was the moment when I became sharp with him. I told him that he was lucky to be in acute rehabilitation because the alternate choice was a nursing home. It is the truth and it is brutal.  He was shocked and frightened. I immediately felt bad but I said to him, "We have always been completely honest with one another--no bullshit ever between us, right?"  He nodded.  I explained to him that he does not want to be in a nursing home--he wants to be at home with Imogen and me.  In order to get there, he has to work very hard and prove that he can do it.  He is being assessed on a daily basis.  Stopping is not an option.

I saw that sink in and trouble him. James is so exhausted; I should not overwhelm him.  I probably should not have told him but he may be thinking that being in rehab is similar to the NICU.  He misunderstands the current situation. He is not going to receive cheers for opening his eyes and wiggling his toes. The stakes are far higher here. The therapists continually ask him where he is and confirm when he responds "the hospital."  He is not exactly in the hospital though and this is what I wanted to convey to him.

James brought it up again before I had to leave tonight.  He asked for the paper and pen by gesturing with his hand in a writing motion.  He wrote, "How do I get home?" This was devastating to me. I gave him an example from this morning's session with the speech therapists. He was so tired from the OT session that he was zoning out, starting to close his eyes. The speech therapist had cards that she would hold up and ask James to mouth the word of the image. He could not be bothered with it. I told him, in those instances, he has to pull from deep within himself to stay engaged and present--to complete the task. This instance occurred before we had our little blow out regarding stopping of therapy. I believe he understands now what is at stake.

I told him not to worry about anything--to have a good sleep--and that we would discuss any misgivings or questions he has tomorrow. This is day two, for goodness sakes!  I did meet with the social worker today and she confirmed my suspicions about the necessity for James to perform, regardless of the fact that this is only the second day. There is no sugar coating or silver lining in this facility. Everyone speaks the truth. I prefer that but it is also very straining on me, personally. 

I wish it were me in the bed and James was the healthy one.

Love out to you.  Keep praying for James--let him borrow your strength to keep his eyes open and mouth the word "window."