The night that I went to the ER dad called both my sisters Carol and Karen to let them know what was going on. Carol began posting Facebook messages starting with this one that she posted on my timeline and 8:41 PM on the night I went to the ER. She continued posting updates on my page and hers so that all of my friends and all her friends would know what was going on.

Our normal routine over the next several days was that dad would come sometime around 9-10 AM in the morning and stay until around 5 PM when Carol would show up and stay with me until the 7 PM shift change. Visiting hours are normally until 8:30 PM however in the ICU they don’t allow family members in the room between 7:00 and 8:00. That’s because they don’t want family members overhearing the doctors and nurses giving reports between shifts. That means if you really wanted to stay until visiting hours are over, you have to kill that hour between 7-8 and then only get additional half hour of visiting time. So Carol would just leave at 7:00 PM.

I mentioned earlier that I told dad to bring my iPhone. Now that I think about it, I seem to recall that dad had already left when I thought of the idea. I use the message board to tell Carol to call dad and have him bring the iPhone. I hoped that I could find a way to type messages on it to communicate easier.

I knew that Carol was posting Facebook messages and that would cover most people. But I know there are some people who don’t check in Facebook very often especially my friend Judy Chapman. So using the message board on the night of the fourth, I told Carol to call Judy and let her know what was going on with me. I was 99.99% sure that her daughter Anne had probably seen the messages on Facebook and would have told Judy. But I just wanted her to get a personal call from us.

I later heard that my request “Call Judy and let her know I’m here” got delivered as “Chris wants to see you.” Well okay… That wasn’t exactly a lie. I really did want to see Judy even though that’s not what I attempted to communicate. This was one case where someone who knew me well (Carol) knew what I really wanted despite my limited ability to express it. Even though she didn’t deliver the message I was trying to deliver, she got the real message right by reading between the lines.

The Second Morning

As a result of my request to inform Judy where I was, December 5 I woke to find Judy walking into my hospital room in the ICU. It brought back memories of a previous visit described here in an older blog. I was very happy to see her. She had taken off work that morning to visit me. It was a bit difficult at first because she didn’t know my yes/no signals but we figured them out pretty quickly. She kept trying to pat my hand to comfort me but unfortunately she was hitting my hand that had the call button in it. I didn’t have an easy way to tell her she could pat anything but that hand.

While Judy was in the room but there was no nurse around, two guys came in lab coats and said they wanted to put in a central line in my arm. It’s called a PIC line which I think stands from Peripheral Inserted Central Line. I had had one before in my neck and they said this one would go in my arm which was easier. I like the idea. However they wanted to put it in my right arm. I talked them into doing the left one because I was worried it would interfere with me using my call button in my right hand. Judy was able to tell them my signals for yes and no. She later said she didn’t feel like she had helped much but I explained just having her able to tell these guys how to interpret my facial movements as yes or no was a big big help.

In the end they agreed and put the line in my left arm despite the fact that the right arm was according to them “the usual way”. It must have something to do with your heart on one side or the other. As it turned out, the PIC line would not have interfered with my right arm. It was nice that these guys were paying attention to me. Much better than I had the day before.

Judy visited for a while. I don’t really remember how long but she determined that I was doing okay despite the circumstances. She went ahead and went on to work the rest of the day. I’m glad my message to her was interpreted wrong. I was really happy she came.

“Only a space…”

I went to a special education school from kindergarten all the way through high school. They had a really nice physical therapy department that included lots of mats for working out, weights of all sizes, and a swimming pool. I never used any of it most of the time I was there. When I did, it wasn’t so much for therapy as it was to get a break from the depressing high school situation we had there. For kids with polio, cerebral palsy or spina bifida physical therapy really had a positive impact. But for guys with muscular dystrophy there really wasn’t anything you could do to help the situation.

When I was about three or four years old when my parents took me to a clinic at Riley Children’s Hospital. They had physical therapists there who would do all sorts of range of motion exercises on me and encourage my mom to do them on a regular basis. I would come away from a clinic visit there with all my joints terribly sprained. The contractures in my joints had already started an early age and all of the exercises they did to try to loosen me up did nothing but hyper extend my joints and tear my tendons.

I will plead guilty to being a “mama’s boy”. I was an only child in the first eight years of my life an incredibly spoiled not only by my parents but grandparents and great aunts. But there were only 2 times in my life that I ever got so needy that I wouldn’t sleep in my own bed and wanted to sleep near mommy. One was after I fell out of my wheelchair at a day camp at Crossroads Rehabilitation Center. And the other one was after an especially torturous physical therapy session that severely sprained my ankles, knees, and elbows. So needless to say I was not a big fan of physical therapy. I later learned the adage that “Only a space separates the therapist from the rapist”.

Sometime after Judy left on the morning of December 5 with no nurse in the room, a man in a woman came in saying they were physical therapists who had been called in to evaluate me. I was absolutely petrified! These people were going to start twisting and turning me in painful ways and I was going to be unable to even grunt or moan in pain. They quickly caught on to my yes and no signals and started asking me about things that were enormously beyond my capability and had they been attempted would’ve caused serious injury. Things like pivoting into a chair. That is a process where someone helps you to sit on the edge of the bed, grab you under the armpits putting about half of your weight on your feet, and then pivoting you into a chair. I vigorously signaled my “NO” signal to all of these suggestions such as sitting on the edge of the bed.

Although they did gently move my arms and legs a bit to see what my range of motion was, they did not try to in any way forcibly extend that range has had the therapists done to me when I was a toddler.

In a nutshell… They listened to me. They respected me. They respected my “NO”. And in the end left me alone absolutely none the worse for the wear. Had things gone differently I would have labeled this “The Second Incident” but in fact I now refer to it as “The Non-Incident”.

I told you in the last installment about my interview with the nursing supervisor and the way I felt disrespected and maneuvered against my will by an impatient nurse. I also spoke with this nursing supervisor about this non-incident with the physical therapist. First I said that I didn’t appreciate them calling in the therapist without at least discussing it with me or my family. We could’ve explained to them a number of things that would’ve made the therapy visit unnecessary and certainly less risky. I would have preferred to have a friend or family member present during such an encounter. So I was pretty firm with my displeasure on how the therapist got there in the first place. But I countered that with the highest praise I could muster for the way those therapists conducted themselves. I told her how scared I was and then how relieved I was when they listened to my “no” and respected my wishes. I asked her to please thank them for their professionalism.

Shortly thereafter, dad showed up with my iPhone and that turned out to be a real game changer in my ability to communicate with people. The challenges were still huge but at least we were putting a pretty good dent in those challenges. More on that in the next installment.