Thursday, December 21, 2006

Folie à deux

Folie à deux is a psychological term referring to the situation when two or more people share the same delusion. Delusions are funny things, and difficult to disprove, particularly when more than one person starts seeing them.

This all relates to Mary, who taught me about love, and trust, and delusions, and perceptions - and ultimately what matters most.

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It seemed strange that the doctor didn't request physical therapy as well, I thought, as I watched Mary limp down the hallway in a traditional hemiplegic gait pattern while using a quad cane. I remembered practicing that Trendelenberg gait in college with my classmates, accentuating the weakness of the hip abductors. The difference here was that Mary certainly wasn't faking or pretending with her newly acquired gait pattern. A serious look was on her face, and her arm was clenched tightly to her side in an angry and tense position. In college I guess we really didn’t stop to think about the people behind those gait patterns as we pranced around late at night to study for a neurorehabilitation examination. It wasn't real then, but now Mary was very real.

Mary was 23 years old and studying to be a rehab counselor. She found that to be quite ironic: that she had studied to counsel people who were in her exact situation. Of course none of her knowledge gained could be applied to her own situation. The things you study in school don't seem real - at least not until they happen to a person.

Mary was engaged to be married, almost done with school, and then she had the CVA. Her CVA, or cerebrovascular accident, was caused by a burst blood vessel in her brain - a branch of the middle cerebral artery. The blood vessel supplied areas of her brain responsible for control of the right side of her body. As a result, she had significant weakness of her right leg, and her right arm was positioned in a reflexive position tightly held against her body. Her hand was fisted, and essentially not able to be used functionally for any purpose.

Mary’s fiancé never wavered, never stopped loving or supporting her - and although she found this unbelievable, all of her wedding plans went hurtling on to their conclusion. She felt as though her life had stopped, and that all these events were continuing along with her, but without her. She was not the same person.

At least she didn't feel like she was. Mary’s disability pained her deeply. One day, after returning to the therapy room following a bathroom break, I noticed that her eyes were a little glassy and red. "Mary, what is wrong? You seemed to be in a good mood earlier. Is something bothering you??" Mary broke down, crying. She told me, "In the bathroom, the paper towel dispenser says to pull down on the towel with both hands. And I can't." I didn't say anything as she leaned forward and cried into my shirt. I just held her. Sometimes that is all you can do.

Well, later that day I pulled off all the labels on the towel dispensers that said to use both hands. I still do, when I see them in public restrooms today. I know that Mary doesn't go into men's rooms, wherever she is. But I still always do it anyway.

Mary’s goals were relatively simple: she wanted all of her wedding videos and wedding pictures to look "normal." She did not want to have to wear an arm sling. She did not want her arm contorted and flexed violently against her beautiful wedding dress. And she did not want to limp or have to use a cane when walking down the aisle. She wanted her wedding to be "normal." "If my family and my fiancé are going to continue to treat me as if there is nothing wrong with me, and that all these plans are naturally going to continue on, then I am not going to be the one to burst the bubble." Mary wondered why everyone acted as though nothing had changed. Was this folie à deux? Or something more?

"When I walk down that aisle, I just want my arm to be relaxed. I don't want my shoulder to be hiked up. I don't want my elbow bent. And I don't want my wrist and hand to be so bent."

God bless Bobath, and Brunnstrom, and all the other therapists who designed the treatment techniques that are commonly used to decrease the muscle tone for a patient who has hemiplegia. Mary was intent on achieving her goals, and she wanted to achieve them badly. Every day we worked on activities that would meet these ends. We designed home programs. We made splints. We did everything I could think to do to help decrease the muscle tone in her arm.

Over time, a muscle that is in a constant state of contraction will begin to naturally shorten. Mary would have none of that. "Please stretch out my hand," she would ask. Please help me be sure that it will never get contracted, and stuck in that horrible position." Day after day we worked toward these goals, and over time, the muscle tone in her arm decreased. She didn't gain a lot of voluntary movement back in her arm, but she was pleased that it did not look deformed.

There were other issues that she wanted to address, and she would bring them to my attention. "Do you know how hard it is for me to put on a bra with one hand? Or to take care of my period? You just don't know!" She would laugh at me about this. "Well Mary, I am out of my league, and I think I need to have one of the other therapists work with you on that stuff." I was the only male in the department, and we commonly swapped patients for training when it came to such issues. Mary was very close to my age, and I was a guy, and most patients have some sensitivity about such things, so we of course would always accommodate for these kinds of situations.

Mary had a hurt look in her eyes when I told her this. "But you are my therapist. And I trust you." I didn't know what to say to that immediately, and she continued, "I'll tell you what. I'll teach you how to do it with two hands, and then you can help me learn how to do it with one." And that is what we did.

The spring turned to summer, and Mary's wedding date was fast approaching. She came to therapy one day and immediately blurted out, "I had the strangest dream last night, and you were in it. We were stretching my arm and my hand, and I remember so desperately wanting it to look normal. You looked at me and said, 'I think I know what I can do to help.' After stretching my arm, you told me to hold it over the table, and that you would climb up onto the table and jump down onto it. In my heart, I knew that this maneuver would break my arm, and that it would hurt tremendously. But I put my arm out over the table, and closed my eyes waiting for you to do it. I knew it would hurt, and I knew I would cry, but I trusted you. I knew that I could trust you. Anyway, the dream never finished, and that is all I remember waking up to."

I just looked at her. What are you supposed to say to someone who tells you that they trust you that much?

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The last I saw Mary was at her wedding, a couple weeks after her dream. I took lots of pictures, and her left arm is hanging loosely at her side, hand open. For those that didn't know her intimately, they would not know the severity of her disability from the way she looked.

There was no cane as she walked down the aisle. I never fancied myself as a wedding choreographer, but I suggested that both her Mom and Dad walk her down the aisle to present her to her future husband. With the support of her parents to the right and to the left, there was no side on which she could limp.

Mary met her goals. She looked beautiful in her wedding dress. No one could "see" her disability. So was this all folie à deux? I don't think so. Instead, it was all about love and all about people placing trust in a goal and caring for each other. And really, what is ‘reality’ and ‘disability’ when you remember to see through that kind of love?

2 comments:

Anonymous said...

that is a beautiful story and a great thing to be able to do. i came to your blog because i wanted to know what an occuupational therapist did. inspiring, i will continue reading. melmax

Anonymous said...

folie a deux? - no
client centred practice? - yes

linda