"I love you," Kimmie's grandfather said, while gently releasing her hand and carefully pulling up the bedsheets around her thin shoulders.
"Well I love your eyes," she said back, and planted a kiss squarely on his jaw.
The grandfather gave her a wink, got up, and tipped his hat to me as he left the room. I felt a little awkward and concerned that I stepped into a personal moment, but Kimmie didn't say anything about it so we just quickly got to the business of therapy.
Kimmie was a nineteen year old young adult who had cystic fibrosis and spent many long weeks in the hospital. I got to know her pretty well because she was admitted to the hospital several times each year. She landed on my caseload after her first hospitalization and the way we divided workload kept 'repeat' patients like her with the same therapist each time.
She talked a lot about tranferring to an adult hospital but she knew her pulmonologist so well (and vice versa)that her family decided to stay as long as possible in the children's hospital where she felt more comfortable.
I didn't know a lot about CF when I started working with her; she taught me most everything that I know about the condition. My job assignment from the pulmonologist was relatively simple and straightforward: she had diminished lung capacity and frequent infections that limited her physical activity - so my job was to keep her as physically engaged as possible within the limits of her physical capacity to maintain oxygen saturation levels.
Sometimes that meant trying to get through self feeding in the ICU. Sometimes it meant playing air hockey in the playroom while standing and using wrist weights during the activity. She normally beat me in air hockey but one day I had an uncharacteristic winning streak. I assumed she was just having a bad day because the pulse oximeter was ticking down into the low 80s, threatening to alarm, so we decided to take a break and let her recover a little bit.
"I'm getting killed!" she said as she reached toward her chair. I had to steady her on the way down because she was a little winded. Kimmie's body was very frail and her trunk was stiff and rounded like a barrel. Her shoulders were in her typical position of being hunched up close to her ears and rounded forward. "Come on now Kimmie, let's not throw posture out the window," I answered back in a non-reply as I lowered her into the chair.
Then I continued, "Well usually you are the one who is killing me in this game, so it is about time I have a chance to beat you!"
I watched her O2 levels stabilize at 82 and I was glad that I wasn't going to have to get the nurse. "I don't think you understand Chris," she said. I looked over and saw that tears were in her eyes. Kimmie had soft round eyes with large lashes, and her cheeks were dimpled and puffy and always seemed a little rosy no matter how far down her O2 levels sank. "I'm getting killed. I'm dying and I can't stop it."
Kimmie's air hockey defeat apparently underscored her inability to stand and underscored her inability to maintain her focus because she had to concentrate every bit of effort on finding a way to get sustaining oxygen into some functional part of her lungs. She used to tell me that she wished she could control her breathing so she wouldn't waste time and energy sending air down to places where it wouldn't make a difference. She was pragmatic that way, but now suddenly everything in front of her became a blurred confusion of loss, and gigantic tears welled in her eyes, dangled briefly on her eyelashes, and then splashed down heavily onto her cheeks.
"I hate crying," she said as I frantically grabbed for some tissues and handed them to her. Her tears welled and lingered and overflowed and then bounced off of her cheeks in a repetitive pattern that she could not blink away. "I hate crying because I can't see and its bad enough not being able to breathe but I hate when I can't see and can't breathe at the same time."
This was probably something that she spent some time thinking about before, I figured, based on the specificity of her concerns. Perhaps the crying loosened up something in her lungs because her O2 levels ticked closer to 85.
"I'm afraid Chris, that someday in the ICU I won't be able to breathe. Maybe I will know I am dying. Maybe I'll see my Mom and I'll cry. What if I cry and can't see when I can't breathe? What am I going to do?"
When you work around people who are critically ill or even around those who are dying or close to death you can develop some very sophisticated defenses that may not be particularly logical, especially in consideration of all the scientific facts and knowledge that go into your training. I never really considered that Kimmie was going to die, because the ICU doctors could save any person's life. Besides, she could play air hockey so anyone who can play air hockey and teach me about CF wasn't close to dying any time soon. Besides, it wasn't my job to think about that anyway. It was my job to help her find ways to do things and to stay as healthy as possible.
Kimmie got worse. Then she got better and went home. Then she got worse again and was on a transplant list. Then she got better and went home. This reinforced the fact to me that Kimmie was not going to die.
Nineteen turned to twenty and even her pulmonologist was pushing her toward an adult facility. We still played air hockey. Her shoulders got more rounded and her chest and ribs became even more stiff and immobile. Air hockey was something that she could still do. It was a point of activity in a senseless disaster of steroids, IV antibiotics,respiratory therapy, and recovery from impossible metabolic imbalances when she got bad enough to require temporary intubation.
Crying after air hockey started to become something of a ritual. "I hate it, but do you mind, Chris, that I cry after we are done?" she asked me one day. I didn't know what to say - so I offered to stop our air hockey activities if they were just making her cry. "I don't want to stop beating you in air hockey! I just want you to be sure that I can see if I start to cry." I couldn't decline the request, so instead of handing her the tissues it became my job to wipe the tears from her eyes and face if I won.
People develop different points of meaning around all different kinds of things. Kimmie had a thing about eyes and crying and being able to see. She talked about wanting to be able to see constantly. She hated when she couldn't see things because of crying or oxygen masks. I accepted it, and wondered about it because it came up all the time with her.
As I dabbed her tears one day I had to ask, "Kimmie, why did you tell your grandfather that you loved his eyes? I always wondered why you said it to him that way."
"I want to be old," she told me. "But it won't ever happen. I want my eyes to crinkle around the corners when I smile. I want to experience enough to have those happy lines on my face. Then if I cry the tears won't get stuck on my eyelashes and they won't fall on my face. They will go where tears go when you have lived long enough to have riverbeds for them to flow into."
Kimmie died that year. She was 20. The doctors couldn't save her, because no one can save you from CF. She didn't live long enough to have happy lines. I hope she didn't cry as she was dying, because I know she wanted to see. I don't know because I wasn't there when she died. No one was. She died at home in her room at night, alone.
That was almost 20 years ago. It took me a really long time to write Kimmie's story down. I'm thinking about her now because I am 45 and at the end of a long day I take water into my hands and splash it onto my face, watching drops beginning to find small patterns that follow away from my eyes. It is a gift that she wanted desperately and could not have. It is a gift that I am only now beginning to be blessed with.