Eye to eye

Greg was pushed into my office, sitting in a wheelchair, and he didn’t make much eye contact. “Hi Greg,” I said, trying to find a way to elicit some response. He still didn’t look at me, but nodded his head in acknowledgement to my greeting.

Although Greg had limited eye contact he willingly shared the details of his story. Greg had hopes that he could make sense of things. Talking helped him, and he had hopes that things happened for reasons. He told me that he struggled with this on a daily basis. From my vantage point, at the time when we first met, I didn’t have many answers for him.

Greg joined the army when he was 18, hoping to find some structure and discipline in his life. He was a part of the wild crowd in a rural high school. In his opinion, the army was a form of escape - and an opportunity to change things. It was a blank slate, a do-over. Most importantly, he would earn money so that he could continue his education. It was never important to him in high school, superficially, but his heart told him that he needed an education in order to achieve the happiness that he was looking to find.

I am not sure how the army decides what ‘jobs’ or tasks a person will be trained for, but Greg was trained in transportation. There were many different kinds of ratings and rankings of what he could and could not drive, all of which escape me at this time. Greg was responsible for driving some General’s car. I am certain that he spent hours upon hours learning about safe transportation. how to escape safely if under attack and how to ensure personal protection of his occupants in the event of an attack. He performed his job well while in the army, and aside from occasional run-ins with MPs due to “having a little too much fun” as he would put it, his was a successful army career.

Greg knew that the army was not his place: it didn’t ‘speak’ to him, and he knew that all along. However, he was correct in seeing the army as a bridge: an opportunity to grow up, change his behavior, become more responsible, and make some money for college. And, while he was there, he did a good job and served an important function. He mattered. What he did mattered. Now it was time for him to go home.

There is a freedom associated with the removal of old roles. It is an excitement of being able to begin again. It was coming home after the army that was what he really looked forward to. Greg was free. After his wild days through high school that dead-ended his possibilities for college, he set himself up to succeed and had finally arrived at a point of change.

Speeding down the back roads of the rural area where he spent his entire life, rushing into his new future, Greg misjudged the degree of curve in the road. He was a skilled driver, no doubt trained in how to keep a car under control in adverse conditions, but training couldn’t supersede the laws of physics. And he had just broken the rules.

His car left the road at over 70 miles per hour, crashing headlong into the trees. Greg was free that day, also free from his safety belt, and although the car came to a stop his body did not, and he became a human projectile out of the front window.

Fast forward six months, after being in the hospital and treated for a C7 spinal cord injury, and after undergoing extensive rehabilitation. Greg was pushed into my office, ready to continue his outpatient rehabilitation now that he was living at home again. In the medical world, this would have been a real step toward independence, but in very real terms the farther Greg got from that last day of freedom, the more restricted and limited he perceived his own life. The medical people think that going home is progress. Greg saw going home as a cruel reminder of all the things that he would never be able to do again.

Functionally, Greg was restricted to the wheelchair. He only had limited use of his arms, and his hands were not fully coordinated. He did not have any ability to control his trunk, and he was developing strong and painful spasms in both his legs. Whatever future he thought he might have, whatever vistas he imagined his freedoms would bring him, now had to occur at the wheelchair level. Greg was not going to be able to face the world eye to eye, and so he didn’t want to face it at all.

Medical professionals are generally competent and caring individuals, but sometimes ‘professional training’ gets in the way of learning how to work with people. The people who receive services become body parts, each piece neatly divided among professional disciplines based upon traditional mythologies of what constitutes medical science. Of course Greg knew what to expect out of therapy; this was old hat to him. The occupational therapist would strengthen his arms, the physical therapist would stretch his legs, and the social worker would poke at his soul – as if all these parts were somehow really disconnected from each other. This is what he knew ‘rehabilitation’ to be. Patients buy into this model and tend to be quite cooperative with the medical tradition.

Lynn was his physical therapist, and she followed the plan of care that came from the rehab facility. It said that Greg was to work on lower extremity range of motion and wheelchair mobility. So that is what she did. The physical therapist depended upon me working with Greg on upper extremity strengthening, as this would allow him the strength to maneuver the wheelchair with greater skill – to pop wheelies over curbs and so forth. We began to have conflicts, because I wouldn’t follow the treatment plan.

It all started when Greg came into therapy quite excited one day, and told Lynn that he tried to stand up. Apparently, he wheeled the wheelchair up to the washing machine, waited until he had strong extension spasms in his legs, and then pulled himself so that his trunk was lying on top of the machine and his feet were in partial contact with the floor. He was standing. STANDING.

“Well that is the most foolish thing I have ever heard of,” Lynn told him. “You are likely to fall and break your neck all over again. That is NOT standing; that is playing with the extensor tone in your legs. You are lucky you didn’t kill yourself.” Sandy, the aide who worked in the therapy departments, relayed this story to me as she wheeled a dejected Greg into occupational therapy.
We sat alone in the room and I stated, “So I hear that you’ve been trying to stand at home?” I like to hear things from the source and was interested in his motive. Greg replied, “Don’t worry, I was already yelled at about it, so I won’t be trying that again anytime soon.” I thought for a moment, and considered the implications of contradicting a colleague’s instructions to a patient and replied, “You know what Greg? I can’t believe that you were able to do that. And it obviously made you feel good to try. So why don’t you keep on doing it, and if you fall and break your neck at least you will kill yourself on your own terms.” I was half-serious, trying to make a point to him and offer him some opportunity for control. In that life of his that spun madly out of control, I tried to give him a choice. For the first time ever, he raised his head and looked me in the eye, and with a broad smile on his lips he said, “Thank you.”

I had made a commitment to a course of action that could have gotten me into serious trouble, and I spent a lot of time praying that Greg wouldn’t fall at home. So I asked him to only try his standing maneuver when someone else was around. I instructed him quietly in how to wear the transfer belt while he attempted it so someone could easily grab onto him in case he fell. We developed a code for it, as he knew that the PT would never concur with his home activities: we called it the ‘GSHP,’ for ‘Greg’s Secret Home Program.’ He was supposed to be practicing wheelies, but the last thing in the world that Greg wanted was to become proficient at using a wheelchair. He tried a few more times to convince the PT that his goal was to stand, as did I, but it fell on deaf ears. “Greg has a C7 spinal cord injury, and he will never stand again. We are not doing him any favors by allowing him to think that he might.” Talking to that therapist was like talking to a brick wall, although I know that she was doing what she believed was best for him.

That, perhaps, was the crux of the matter. What she believed was best for him. It didn’t matter what Greg thought was best for Greg. But I knew that I could give that to him, easily. “How’s that GSHP?” I would ask as I watched him roll through the hallways. “Better every day” he would tell me.

Diligently, several times a day, Greg pulled himself up against that washing machine and ‘stood.’ And each day it became easier for him. After a week or so he told me, “I notice that when I stand the spasms in my legs seem to go away, and I think I am able to move my left leg a little bit.” The MD noticed that the spasms were decreasing also, and ordered a decrease in the amount of Lioresal he was on. That was it; I knew that I would have to come clean.

I held a conference call with the PT, social worker, and the MD that day, telling them what the ‘GSHP’ was. I went into detail on how I thought Greg might have some residual function underneath all of that muscle tone, and how he derived significant psychological benefit through his efforts. The MD and social worker were guarded; the PT thought I was nuts. Although I was not told to cease and desist, I was certainly told that I was on my own, at least until there was some more concrete evidence that what I was saying was true. They did not want to participate in what was perceived as possible cruelty in unrealistically building his expectations. From their standpoint, professionals always know more than patients. And people who have spinal cord injuries like Greg’s don’t stand.

Now that the proverbial cat was out of the bag, I put Greg into a device called a standing box. It is like strapping someone into a standing position. I would have preferred to use the standing table, which would have been more appropriate at the level he was functioning, but that was a piece of PT equipment, and they wouldn’t let me use it. So Greg got strapped into the standing box, his knees blocked into an extended position. As he lacked the trunk control to maintain himself upright, he simply leaned forward onto the tray in front of the standing box. It was crude, but effective.

“You are eye to eye with me, Greg. You better look at me when we talk!” I would yell at him when he came into therapy. And he did. And each day that he stood in that box, the spasms in his legs decreased and the atrophied muscles of his trunk came back to life. Soon he was able to prop himself up on his forearms, and then his extended arms. And then with only one arm. Greg was tall again.

What did we do while he was in that standing frame? In the beginning we just played cards, as all he could do was support his upper body weight against the tray. But as his trunk strength improved, he started doing other things that he enjoyed: putting together models, and even playing catch. It took months, but he was eventually able to participate in some dynamic standing activities, reaching away from his body while he was catching and throwing.

During this time, he was discharged from PT. He had achieved his “maximal functional potential,’ according to the discharge note.

“I’m sick of this box,” he told me one day. “I think I can stand without it.”

“Go for it, Greg, who am I to tell you what you can’t do?”

That day we stole a walker from the PT gym and with help he pulled himself to a standing position, with an erect spine. We practiced transfers from a sitting to standing position and back to sitting. On and off a toilet. In and out of a car. “That’s it,” he told me. “I just have to get a car.”

I went car shopping with Greg later that week, and we found him a car and had it adapted with hand controls. We also had a device installed that stored his wheelchair on top of the car and would bring the chair down to the ground with the touch of a button. “Don’t get all excited about the technology,” he would tell me. “I don’t plan on needing that stupid chair forever.”

Greg came in excited one day and told me, “I’ve been working on a new GSHP. Watch this!” I was amazed, but he stood up with the walker, and ever so slightly raised each leg and marched in place. The right leg was dramatically weaker than the left, but he was doing it. “Time to go to physical therapy again Greg. I shouldn’t be the one to teach you how to walk.” I asked the physiatrist to write an order for a right AFO – ankle foot orthosis – so that Greg could try to walk. She hadn’t seen Greg in a while, and thought it would be a waste of time. So I made one myself, and sent him up to her clinic with my crude example. It was ugly, but it worked. Seeing that it had benefit for him, she ordered the AFO, and re-referred him to PT for gait training.

Greg started PT soon after that, and before I knew it he was walking up and down the hallway in a walker. When it turned to Spring, he would walk from the car to the waiting room. It was arduous, but he could do it.

“I’m going to college,” he announced to me one day. “I have all that army college money sitting there; I might as well use it.” Greg didn’t need me any more. He was doing the things he needed to do. And the things he wanted to do. His body wasn’t the same, but he wasn’t restricted to only being in the wheelchair. All of the occupations that he thought he lost were found again, and he finally was able to see the freedom that he thought he lost forever. And he was able to see it eye to eye.