I first noticed it in the way she ate. It was as if the the food was trying to escape from her fork and she had to bite it before it leapt away. She pounced on it. She would bite the fork so hard that I was afraid that she was going to break her teeth. At first I just thought it was a bad habit. I would say to her, “You sure did bite your fork hard.”
“I did?” she would ask.
I was more frustrated by her obliviousness than by her horse habit.
“How can you not hear that? How can you not feel that?”
“I don’t know what you’re talking about. I’m just eating. Did you have a bad day?”
I used to hate when she did that. It was true, people irritate me more when I’ve had a long day. I heard some stupid saying when I was younger, “Withdraw from people when one of these things is happening. HALT.” It was an acronym for reasons to not be a jerk. When you’re Hungry, Angry, L-something and Tired. It was stupid. I hated when she would remind me that it was time to HALT. How about I is for Irritating, why don’t I go watch baseball by myself when you’re being Irritating.
But then she would smile. Some days it made me mad, some days it melted away every ounce of contention. There was a levity in her smile that couldn’t hide her innocence. Her eyes and ears surrendered to her mouth and paid homage by sliding back just right toward the back of her head. It was the most pure emotion indicator that she had. It was jarring the day that she told me that she had a hard time smiling.
“What do you mean?”
“Watch, I can’t smile anymore.”
“You mean you just don’t feel like being happy?”
“No, my face won’t smile.” And she tried.
How do you tell someone the truth when you hate it as much as they do? How do you tell someone, “You know you’re right. Your face isn’t smiling? This disease is encroaching on every area of your life?”
So I lied. “What are you talking about? You have just as beautiful of a smile as you ever have.” But it wasn’t true. The corners of her eyes didn’t budge, instead they simply became a fulcrum for a squint.
I met Tiffanni at summer camp. I was a camper and she was a counselor which was odd because I was older than she was. I gladly obeyed her, but only partially. My schoolboy attempt at keeping her attention.
The first day, she went over the rules at the lake. “To ride in a paddle boat, you must always wear a life jacket. To swim in the lake, you must always wear a life jacket. To ride the zipline across the lake, you must always wear a life jacket.”
So I wore a life jacket. I just didn’t wear it the way it was supposed to be worn. The first day she whistled at me because it looked like I was swimming without a jacket. “Hey you,” WHISTLE, “You without the life jacket,” WHISTLE. I played dumb. “HEY, you without a jacket,” WHISTLE. I finally looked at her to see what all of the commotion was about. She was staring right at me.
I looked behind me, playing dumb. With my eyebrows raised I mouthed, “You mean me?”
“Yes you! You can’t swim without a life jacket.”
“I’m not. I have a life jacket on.” I then turned upside down in the water to reveal the life jacket upside down, legs through the arm holes like a diaper. A sumo surprise.
“You have to wear it right,” she screamed.
“Oh…sorry.” And then she broke. The smile. She didn’t smile with her mouth, but her eyes and ears betrayed her. I had won. She noticed me and I would make sure that she noticed me all week at camp. We played the game of counselor and ignorant camper. She constantly correcting my half attempts at following the rules. My ploy, her yielding. My scheme, her give-in. Our first dance.
I debated for several days if I would ask her or not. It felt weird. When I was younger, the entire goal of camp was to ask a girl to the banquet on the last night. Of course, the banquet required dressing up and smelling good. It was the final year that I would ever be a camper. I had just graduated high school and felt the formality of a banquet would define this blossoming relationship in a way that I wouldn’t like. The back and forth of the schoolboy romance was so much more fun. It was light, simple and nonchalant. It was giddy. Banquets don’t have the ability to be giddy. They require thoughtfulness, but not the stay up all night talking on the phone constantly reassuring that you slept plenty the night before kind of thoughtfulness. Banquets require definition and posturing- a barrage of thought, distracted by thought, “Am I being a gentleman? Is my shirt still tucked in? Is she bored? Should I carry her tray?”- full of thought, just not thoughtful. So I debated. Or maybe I was just nervous.
I didn’t ask her to go to the banquet with me. I didn’t dress up. I found out later that Tiff was on a break with her long-time boyfriend. I think if I would have asked, the need for definition would have necessitated the conversation and I wasn’t confident enough to handle that love triangle.
We exchanged glances all night. Mine held expectation and heat. Hers seemed to hold whimsy and carefree. Thoughtfully, I was falling in love.
“You look comfortable,” the server said. I hadn’t even noticed that my legs were criss-cross applesauce. However odd it is for a grown man to sit so comfortably in a restaurant booth, it had been lost on me. I had kicked off my flip-flops and sat leaning forward. My shins had been kicked so many times over the last two years since her diagnosis that I had to figure out a new way to sit.
I’ve found that the body will adjust to comfortable once it realizes that this is going to be a trend. When I was sixteen years old, I thought that driving with both hands at two and ten was lame, so I learned to drive with one hand at 12 o’clock. I usually propped the other arm out the window. For the first week my entire right side was sore, but my body adjusted. It became easy and even comfortable to drive lean-cocked with one shoulder floating in mid air in order to portray cool while the other shoulder sat against the backrest. So, after being kicked in the shins and accidentally grimacing every time, I had to come up with another plan. Tiffanni apologized each time. It was painful, not the kick, but that she couldn’t control it and yet felt the need to apologize after each infraction. Why did she have to apologize? I hate that feeling.
“I’m so sorry.”
“I kicked you. I saw your face.”
“No you didn’t. What are you talking about?”
“I hate this. Why don’t we just go home. You didn’t have to take me out. I’m embarrassed to be out anyway. Let’s just go.”
“No, you’re doing great. It didn’t even hurt. You know that I have no pain tolerance. You’re the one who had all of the babies. I think I would have just had Addyson and given up.”
“No you wouldn’t, you love our kids!”
“Of course I love our kids… because you had them.” We laughed. It was always my sense of humor that she was attracted to anyway. If you ask ten girls what they want most in a man, nine of them will say a good sense of humor. She had to like my sense of humor. What else would she have done with that perfect smile?
We stayed and we laughed and I sat criss-cross applesauce and she was none the wiser.
We sat across from our friends. This was our very first double date and Brad and Leslie had asked us to go out. “You two have so much fun. Come show us how to have fun,” Leslie had asked Tiffanni. Coincidentally, Brad and Leslie had been dating the same amount of time that Tiffanni and I had- one year.
When Tiffanni told me, I said to her, “How in the world are we supposed to train that boring couple how to do anything?” Leslie was as bland as a communion wafer and Brad a sex fiend. Either they had a secret life of raucous religion or this wasn’t going to last anyway. I agreed.
Chili’s is a place for lovers. It was mine and Tiffanni’s first date ever and our first double date one year later. Something about the guacamole. Brad and Leslie stared at us while Tiffanni controlled the conversation. She was brilliant at any party. I’ve always found it odd that she, an introvert, could be so mesmerizing in a social setting. Maybe it was the Mango Iced Tea. Leslie finally inserted, “Tell us how to be fun. You two are so fun. Tell us.”
There are moments when you know that you’ve made a great decision about your future and then there are these moments. They stand sublime in a trophy case of the mind. Markers that one can recall and use as energy and determination in harder moments. Rarely are they planned or expected, but they present themselves with such clarity that even in the very same instant, the significance is obvious. Tiffanni looked at me and I at her. I saw her eyebrow raise the very slightest and then her nose flared. It was too much for me and we both laughed at each other. She laughed open mouthed that started with a muffled “Ha”. It sounded like a Wynton Marsalis muted trumpet. It got me so tickled that I blew out a laugh between my lips. They flapped, with the fully air-loaded cheeks, just like I could have played her trumpet. Somehow I spit in her face and she laughed even more. The question, the moment, the laugh, the spit- Wynton would be hard pressed to create a more beautiful song.
We sit across from her neurologist. Our general practitioner recommended him when Tiffanni finally said, “Something has to be wrong. I can’t keep my balance. I shake at weird times and keep forgetting things.” He talks in a language that he somehow expects us to both understand. At this point, we only understand shock. There are words that are impossible to explain without an experiential frame of reference. This is one of those words- surreal. A surreal moment is a moment that plays back the same way that it is experienced, in slow motion. Behind the doctor is a bookshelf filled with periodicals. There is at least one hundred Journal of Neurological Sciences. Today they are as useful as giving a starving man a picture of food. There are six certificates on his wall and a picture of what seems to be the doctor forty years younger. It is in black and white. He is a handsome man and smiles as if he has accomplished a lot in the picture. He poses as he shakes the hand of someone in pristine regalia, yet he can’t even get Tiffanni’s hand to stop shaking. All of the letters and all of the certificates, all of the Journals and the fancy office at the end of the hall- crap.
He wishes us well as we follow him down the hall. He hands us five prescriptions and three starter sample packs. We leave the office, hands filled with a concoction of hope. “We’ll try different combinations of these until we get it right,” he says.
I want to scream at him, “She’s not a lab rat. This is our life that we’re trying to ‘get right!’” But nothing comes out. I smile in response and shake his feckless hand with my own. A duo of death. We will accompany her to the end with little more to help than our smiles.
We lay in bed that first night. Not the first night of our lives together, the first night of the rest of our life together.
“I’m gonna die.”
“No you’re not, don’t say that.”
“I am going to die.”
“Stop saying that.”
“I can’t play games with you tonight. I’m going to die and I need you to say it back to me.”
“I won’t say it because it’s not going to happen. I mean it. Don’t say it again.”
“I’m not scared. Don’t be scared.”
I don’t know how to respond to this. Does she need me to be strong or does she need to be strong for me?
She’s so kind to everyone. We can’t go anywhere that she doesn’t say something nice to someone. I hate that it embarasses me. I used to pray for a miracle, but what’s the point? The truth is that I’ve seen a miracle. This disease not only affects movement but it also affects mood, yet somehow, she is as bright and positive as I have ever experienced her. It doesn’t make sense.
“You sure look pretty today,” she says to the lady wiping the table next to us. I look over my shoulder and see her nametag that reads, “Betsy”.
Betsy turns around and then realizes that Tiffanni is staring right at her, her face brightens with curiosity. “Thank you baby, you look pretty yourself.”
“You’re doing such a great job. Thank you for working so hard.” Tiffanni’s broken speech dismisses any interpretation of insincerity and I can tell that Betsy is warming. Faces are undeniable. Words, actions, and even tone have this chameleon quality of control. But faces, they give away the lot. Betsy seems to have that look of being on candid camera, but Tiffanni’s erratic movements are surprisingly disarming. Betsy’s closed-mouth smile now reveals her teeth and I now know that Tiffanni has melted suspicion.
The darkest thing this disease has determined to do, to be, is eradicated by a gentle exchange between two humans. It’s funny what being stripped of dignity does to a person. It would seem that there is a finite amount of dignity in the world. The more Tiffanni loses, the more she discovers in others.
“Wait, I can’t breathe, you’re going too fast.” She brings her hands to her face and cups around her nose.
“I’m so sorry, I got caught up daydreaming.” I chuckle and she smiles.
“No big deal, you’re just going to drown me.” I finger through her hair to see if all of the shampoo has been rinsed. When it’s been a long day, I don’t allow this time together to be special. I hurry through. The routine never varies, just my timing. Shampoo in the hair, I let it sit to do its work, although, I’m not sure what it’s doing. I then squeeze body wash onto the loufa, the washcloth we first used would never lather enough to feel like she was getting clean. I begin to wash her back, then her arms. For some reason, everytime that I begin to wash her arm, it flies into the air. It is an unforced reflex. It reminds me of a baby being awakened from a nap and throwing his hands into the air. Balance, disorientation, I don’t know, but Tiffanni’s hands always fly when I wash her arms. I sometimes think that her body believes that it has to constantly remind me of its lack of control. “Wait, we’ll do your armpits next.” And she looks at her arm like it is detached from her body. “I didn’t do that on purpose.”
“I know sweetie.” The soapy water runs down her back.
“Ok, now your armpits,” and I run the blade down her underarms. My knees usually begin to hurt about this time. My legs cramp and I hurry the process. “Close your eyes.” I rinse out her hair and skin and now her body matches her soul.
Dressing is always interesting. I towel her off and she stands exposed. There was a time this was a sensual moment. I never noticed the transition from companion to caretaker, it just happened one day. Her beautiful body, once exciting and erotic now feels like the other parts that are exposed throughout the day.
Because I didn’t register the biting the fork as anything more than a bad habit, I wasn’t looking for her coordination to fail either. She had always been clumsy. Those legs had marks all over them. I used to ask her if she shaved with a machete. Now I towel them off. On my knees, she stares down at me as I dry off the bruises on her legs. Too many to remember the how. The light from the ceiling fixture behind her casts a silhouette. I look up at her and from the light beyond her I see a prism made up of the colors of beauty and pain, loss and grief, helplessness and love, hope and death. And she smiles.