Jake Part 9 -- A
Day Week in the Life of Jake
By James Langille
Sunday April 21, 2002
I do not see my name written like my byline very often. I go by Jake instead of James. I have been Jake since I could talk because I could not say `James'.
My Dad asked me if I would write about me, so people see me from my point of view. You already know how Dad sees me. How do I see me? Differently than my Dad does.
I decided to write about one week in my life. Dad had asked for a day at random, but it was not enough to show him who I am. I want him to know everything I do. This is from Sunday to Saturday. This could be two pages or two hundred.
He said I should get a notebook that fits in my back pocket. You would be amazed at what his looks like. Maybe one day I will remind him to scan a page so you can see what he jots down I am going to have to get used to carrying a notebook everywhere. Writing about what I see or think is something new to me. You will see that I think about a lot of things. I think I will see that too. Dad says not to look at the world through a microscope, but be aware of what is around me all day. He says not to take anything for granted because we are not given enough time to treat our lives like we will just live and then die. His basic need is to `live in the moment'. It has become my need too, out of respect and love for him.
I remember the first time my Dad ever hugged me. I was hurting so bad. He knew it. He put his arms around me and pulled me up against him. I can still feel his arms holding me so tight. I put my arms around him. My first thought was that he was so skinny. My first words were "Aaron don't let me go yet." I wanted to be held like that forever. He said, so softly and so sweetly "I'm not ever letting you go, Jake."
He will not admit it, but he saved my life. He argues with me. He says Daniel saved me. Daniel just did what I told him to do. Aaron saved me. He can tell me I am wrong all he wants, but I am not wrong.
He loves me a thousand times more than anyone ever did. He is not afraid to hold my hand when I stuff it in his pocket. I know he loves me because he will tell me. I do not have to wonder, or assume. He holds me so that I know I am safe. Before I left for college, he would sit on my bed, every night. He would wait for me to fall asleep. He would wake me in the morning, especially after I first moved in. He was always afraid I would wake up afraid. If I woke at night, he was with me right away. I would have nightmares about my father hurting me. He would stay with me until morning if that happened. If Daniel slept over, he would stay with both of us. Daniel knows what Aaron's love feels like. I have seen him kiss Daniel on his forehead after he fell asleep. I know he did the same to me.
It is before sunrise. I used to sleep past sunrise on the weekends. Then I learned, because of Dad, what I was missing. He taught me how to watch the sun rise, and the sun set, and watch the moon for a month instead of just when it is full. You do not just look at it while you are busy doing something else. You stop what you are doing. You stand, hands in pockets, around someone you love, from a hilltop, or just some quiet place where nothing intrudes in your thoughts. This is God showing off his gift to us. You are supposed to pay attention. If it does not interest you, then you are moving too fast.
I looked out of my window just now. It is cloudy, so I can not watch the sun come up this morning. That does not mean I am upset at no sunrise to see. I see morning anyway, daybreak. This is the time of day Dad wishes to see. You have heard him say his only wish is to live to see the sun come up, or at least to see daybreak. It means that he has lived through the time period he dreads the most. My Dad does not like the darkness. I want to teach him to like it. I was a creature of the night when I was escaping my father's beatings, so I got comfortable with it.
I am sitting on my bed writing words in my notebook. They are only single words, or phrases. They won't be put into the online journal until later today.
I am deciding how to dress today. I do not dress up a lot. The last time I wore a tie was when Dad and I went to court. My favorite t-shirt has the Nike swoosh logo on it. It is navy blue. The logo is orange. I like blue jeans against my skin the best, so that is a no-brainer. When I help Pop (Jeff's Dad) with chores, I wear work boots. Dad bought them for me when I moved here. I like Skechers shoes, but they are dressier. I wear them only to school.
Pop was going to mow the lawn today but I did it Friday afternoon when I got home from class, before he got home from work. My favorite smell is fresh cut grass. I learned how to use the riding mower a few weeks ago. Mom and Pop's house is on 50 acres. I use the push mower in the front yard only. Pop joked that Dad can not have me back. I am not slave boy, but I am living here free. I want to pull my own weight. Dad paid a lot to put me through school this semester. He would have paid more if I lived on campus. This is better. I can study here. Better yet, I can be loved here. Mom and Pop show me a lot of affection.
I think about my Dad. I do that a lot. He says he thinks about where I am, what I am doing during the day, and wonders if I am alright. I am alright. Because of him, I am not afraid any more, not even afraid of my leukemia. I know what it takes to live with it. I do not know if I will beat it. I do believe I can fight it. It will not get the better of me.
I take a ten minute shower. I shave too, even on Sunday. My friends have hair on their chins, or longer sideburns, or moustaches. I do not like hair on my face. It would make me look older. I get picked on because I do not look 20. That is okay, I do not act 20 either. Guess whose fault that is? It is not a bad thing. I feel like a teenager again. Sometimes I feel like an innocent little boy again. I like that. I get something back that was taken away from me.
Okay, I am dressed and feel clean. I can smell bacon downstairs. Next to fresh cut grass, that is one thing that would always get me out of bed. I am in charge of toast or English muffins. Pop cuts up fruit or gets us fresh juice. Eggs go with bacon, but I can have pancakes too. I did not have chemo last week, so I have a good appetite. Like my Dad, I am too thin, but I weigh 114 to his 104. He should weigh 180. I should weigh 160. I am okay though. I eat a good meal when I can. Tea and toast is a standard fallback when I can not eat right. Mom Christian is very good about taking care of me after my treatments.
The lawn tractor needs an oil change. Pop says I can do it. I am okay with mechanical things. I change my oil in my car myself. Pop is going to work on the new garage. The framing is done. Mom will have a place to do her potting jobs when the garage is done in a few weeks. The old garage was one car. This will be a two car, with a second story to use as a four-season space. It will have a fireplace. It will allow us to enjoy the view down the valley. Pop worked all his life to give Mom a little piece of Heaven.
I envy that Jeff grew up here. I can see why he is like he is. I am treated like family here, not a guest. I have my own jobs to do. If I need something, I ask. I am not shy here. I do not need a lot though. Like Dad's home, this is a home, a safe haven. Jeff is the person who arranged for me to live here. He asked his parents, on my behalf. I have his room to sleep in. When he and Kellie and Jordan come home, I sleep on the sofa in my sleeping bag. Jeff feels odd about kicking me out of `my room' but it is cool by me. They were here last weekend. He is like a big brother to me. I liked him the first time we met, at the hospital. His sense of humor is priceless. He holds on to me like Dad does, since Dad can not. We went for a walk after supper last weekend. It was quiet under the stars. He slipped his hand into mine, and intertwined my fingers. I looked at him.
"My Dad does that."
"I know. Is it okay if I do?"
"Thank you. It feels nice."
"I love you too, you know. I worry about you."
"You don't have to. I'm okay. Um, I love you too, Jeff. You're a good man."
I am not starved for affection in his home. Mom gives me a hug and a kiss before I go to classes each morning. Pop is there when I get home in the afternoon. He pours me some fresh milk. We talk a lot. He goes with me to my treatments. Pop is not afraid of anything either. He has a lot of common sense, but is not distant. Neither of them care that I am gay. I know because we talk about it. I worried a lot about that. I knew how Jeff felt, but I did not expect the same from his parents. Daniel wanted to come visit me last month. Mom must be psychic. She asked about Daniel the same day I was thinking about him. I told her he would like to visit. She told me Daniel could come anytime he wanted to. He could stay in my room too. I must have given her a weird look.
"Jake, there is nothing wrong with you and Daniel being together. Pop and I know what love is. Yours is special, as it should be. We have no right to tell you that Daniel can't stay with you."
So I do not worry any more. Daniel did come to visit and we had a great time. Jeff's folks make anyone feel welcome. I took him to where we could watch the sun go down. We sat under the stars after that. I held him like my Dad holds me. We made out while the crickets chirped. Then he held me until it was time to go home. My Dad approves of Daniel. Better yet, my Dad loves Daniel.
Mom sent him on his way with a batch of chocolate frosted brownies, his favorite. He was surprised. But I had told on him. Mom says she has to keep all her boys happy. Daniel feels like family now, which is great. Jeff and Kellie invite him to dinner at least once a week. He still helps Joe with his massages. Joe probably will not ever walk again. I can not imagine what it must be like for him. I try to talk about Joe with Dad, but sometimes it makes him too sad. It will be easier to talk when I can be with him.
As you can see, my Dad is always on my mind. I think about him like he thinks about me.
I spent the whole day working with Pop on the mower, his car, my car, or on the garage. Mom brought us iced tea a couple of times. She was working on a wooden bench as a gift to Jeff and Kellie. It is supposed to be a surprise. By the time I finish my journal, it will be have been given to them. Mom is an incredibly handy person, especially at woodworking projects. She can use a router as good as any man I know; probably better than most. Do not let that fool you. She is a real lady. She does not look like she is almost 60.
These are self-sufficient people. The garden out back is over two acres. We will be planting soon. Name it, it will be in the garden. There is a farm up the road from us where they buy a lot of their dairy products. Pop and I walk up and back for the exercise. I need to do that to stay strong. I also use Jeff's workout bench and free weights that are in the basement. Mom does a lot of baking. She says she never grew out of it, even when it was just her and Pop here. She likes having me to cook for now.
After dinner I went to my room to work on a paper. I got my notes all into my journal. The notebook proved to be invaluable. I wrote it in a dozen times today so I could do my journal.
I call my Dad around 10:00 p.m. We usually talk about a half hour. Sometimes it is longer, because I hate to hang up. Once we have talked about everything, he tells me he loves me. I wait for a minute. He knows what that means. I want him to hear what I say next, and believe it.
"I love you Daddy."
I can hear him smile. We do not say anything after that. I want those to be my best words of the day. Then we hang up. Why do I call him Daddy then? I am 20 after all. `Daddy' was a long time ago for me. I call him Daddy because someone stole his life from him 16 years ago. He was supposed to have a little son or daughter who would have called him Daddy for a lot of years. Every man deserves to hear that from their child. I may be 16 years late, but he should hear it. Other than that he is `my Dad'. Sometimes I slip and call him Aaron. He either does not notice or thinks it is okay. He was Aaron when I met him, but things have changed a lot since that one day in early October. It is weird to think that if I never got leukemia, I would not be the son of the kindest man I have ever known in 20 years. I still would have been beaten by my father. But it would not have been Aaron who rescued me.
Some say there is a reason for everything. Dad and I talked at length about that. Neither one of us like that, because what is the reason Katie died? What is the reason Aaron lost his unborn child? I think that I met my new Dad just because I needed someone to love me, and to have someone to love, deeply. I do. I am forever blessed that he is my Dad. He made me a promise that I will never be hurt again. I sleep well at night again believing that.
I am tired. It was a good day. I did everything I wanted to do today. No sunset to see either, since it was raining. That is okay. It will make tomorrow's that much better. The rain will put me to sleep in a short time. I love the sound of it on the roof. I turn off my light. I am not afraid of the dark. I can feel connected to my Dad in the dark. I pull the covers up and close my eyes.
Monday, April 22nd, 2002
I awake at 5:45 a.m. I still have fifteen minutes before I get up, so I lay quietly. There is no danger that I will fall back asleep. Once I am awake, I am good to go.
I wonder if my Dad had a good night. I miss him so much. I get tears in my eyes when I think about him like this. We talk almost every night, but it is not the same as being together. Everyone sees their son or daughters go off to college. He wants me to be happy in this. I am, but sometimes being over four hours apart from him is so hard. If he were home, we would be only two hours apart. Being outside of DC with Doc makes him twice as far away. We are still trying to get used to being dad and son. School is six days a week for me, plus I work six days, plus I tutor my peers several hours each week. I will not have a break until the end of my semester in June. Dad wants to be home by then, but we do not know. As stubborn and willful as he is, he can not manage on his own until he is out of the wheelchair. Then I will be back in classes again in September. First break after that is Thanksgiving. I like college a whole lot, but it is responsible for keeping us apart.
He and Doc are probably on their way to DC by now. It is about a 30 minute drive. I have never been there. Heck, I have barely been out of Pennsylvania in my life. Today is what he calls Day 1. He has his chemo in the morning now. Doc has found that he responds better that way, going on the natural rhythm of his body. My best time is late afternoon. I can do chemo every two weeks instead of once a week because my cell counts are down. I might be off chemo by summer. It is hard to imagine doing it three times a week. I have seen my Dad after his second one. He is beat to shit (pardon my language, I know that is not a nice word but Dad says to tell it like it is). Then he gets a day off and has to do it once more. It makes him cry. He would be so exhausted by the end of the week, but he still can not sleep much. I am scared he will not want to do chemo any more. He thinks that meeting me is what saved him from giving up, but I do not have enough faith that even I am enough to cheer him on. I do not want to see him give in. He would not be Aaron Langille if he ever did that. I would love him no matter what he did, but I would rather see him fighting, even when it is too hard.
I get up and take my shower. One way I can feel close to my Dad is to use the same soap he does. I like the scent of Irish Spring because then I smell like him. I used to use just Ivory soap, which had no smell. The water is hot and refreshing. I shave in the shower so I do not cut my face up too badly. I hate shaving. When I was a kid I thought it was so cool. Now I know it is just a pain. I wash my hair with Head and Shoulders. I do not have dandruff, but it is the only shampoo that does not frizz my hair. Since I started chemo, my hair is thinner. It used to be so thick I could barely brush it into place. I towel dry and brush my teeth, then brush my hair. I do not spend a lot of time primping. Who am I going to impress? The only one I want to impress is Daniel, but he is 2 ½ hours away. The way I look now is the way I look in the two pictures Pop took of me. My Dad surprised me with the first one. I did not know Pop had taken it. I liked it though.
I put on a button-down collared shirt, Dockers and my Skecher shoes. It is still cool this morning, so I pull on a sweater. I will shed it before my classes are done. Mom would cook for me in the morning if I wanted but I like just cereal during the week.
My first class is at 8:00. I leave about 7:15 since it is Monday. Monday means I need to stop at the ATM and get pocket cash. You want to know something amazing? My Dad gave me his Visa check card. I never expected to be trusted so much, even by him. He told me to take whatever I need for cash for the week. He trusts me enough that I am not going to go crazy with his money. I know how much is in his account because the balance gets printed on my ATM receipt. I tell him any time I get cash so he can balance his checkbook properly. I know that the quickest way to lose something is to abuse it. I can get by just fine on $10 a week. I do not need breakfast or lunch money since I eat breakfast at home and Mom gives me a good lunch. Usually I have leftovers from dinner the night before. She is a great cook so that is okay by me. Once a week I go out for pizza with someone from school at lunchtime.
I can not call them `friends' yet because we are not. I am pretty shy of making friends. Mine at home all backed off from me once they found out I had leukemia. I will not be rude to anyone, but if someone wants to be my friend, they are going to have to earn it. I could accept that a friend would say "I am afraid for you" and wanted to withdraw for awhile. But for even my best friend to leave me showed me how unimportant I was. It drew Daniel even closer to me. He was not competing against my best friend for my attention any longer. I finally realized that I was attracted to him. Then I knew that I was in love with him. I do not worry about Daniel ever leaving me. We do what my Dad told us to -- we talk. I can say anything to Daniel and he can say anything to me, without fear. If he ever falls out of love with me it would hurt so bad. But at least I would know because he trusts me enough to talk. I promised Daniel I would love him forever. He likes it and he believes it. What is even better, so do I.
No one would look at me and say "Oh, he's gay". I do not broadcast it. I will not come out to people at school. If someone asks, maybe I will tell them. I will not get hurt again because of what I am. What I am is not who I am. I do not look out of place anywhere I go. I am a simple and modest man. I do not like flash and phoniness and some of the `pride' that gay men or women think they have to show to get noticed. I am not proud that I am gay. Because I am gay I got the crap beat out of me regularly by my father. I do not like the word `homophobia' either. I do not think people are afraid of gay people, I think they hate gay people. Phobia has nothing to do with it. My father was disgusted by me, and ashamed. He beat me so I would not be gay. Aaron hated it when I called myself a faggot. But that is what my father called me. My Dad does not call me a faggot. He respects me, and loves me no matter what. People have called Aaron my father. He hates that, too. My father beat me. My Dad will not. My father told me I got cancer because I was queer. My Dad told me I got cancer because something misfired in my genes. Aaron is not my father. He is my Dad. He loves me deeply and I love him just as deeply.
As for me, I would rather know what is in someone's heart than know about their orientation. Having been judged, unfairly, I do not judge. The last thing I would do is walk away from a friend because he or she is gay. I would also find it stupid that a friend would walk away because you have a sometimes fatal disease. I am my Dad's son because of my disease.
These are the things I think about as I was driving the twenty minutes to campus. Nobody in my class knows I have leukemia. No one knows I am gay. It is going to stay that way for a long while. I am a guy named Jake who is easy to talk to, but who has some secrets.
My classes on Monday, Wednesday and Friday are at 8:00 and 10:00, one hour each. I work from 12:00 to 4:00 in a hardware store. I have my last class from 4:30 to 6:30 on Monday and Wednesday. I get home after 7:00. I do not eat dinner on those nights because I can not sleep with food on my stomach. With my new chemo schedule, I have to be at the hospital by 4:30. I see the professor during the day and get my homework assignments because every two weeks I miss his class on Wednesday. He knows why. If I do the homework and pass the exams, he will not be mad.
My classes on Tuesday and Thursday are at 8:00 and 9:30, 90 minutes each. I have to run between two different buildings that day. They are ½ mile apart. I work at the hardware store from 12:00 to 5:00. Pop gets home by 4:00 and Mom by 4:30. No matter how tired either one of them is, I have dinner waiting for me those two nights. Pop can hold his own in the kitchen. I am learning.
I have a Saturday morning class at 10:00, until 11:30. I work from 12:00 until 6:00 in the hardware store. I have not taken a sick day from classes or work since I started. I take only my chemo time off from my job.
It is still Monday. I walk into Mom's kitchen at 7:30 p.m. and put my backpack on a chair. The kitchen is the hang-out spot in the house. Pop is working on a project on his laptop. Mom is sitting with a cup of hot tea. She pours one for me when I come in. I get a hug and a kiss from her. I kiss her on her cheek. She is so kind hearted. Pop smiles up at me and wants to know how my day was. I sit at the table, put a little honey in my tea and let them know what I did since I left. I stay there to do some reading or to get my notes together for papers. At 10:00 the phone rings. I answer it because I know who it is.
"Love you Dad."
"Love you too, bud. You doing okay?"
"Probably better than you are. Are you sick?"
"Not too bad tonight. Just a headache, not too bad. You have E-mail waiting for you."
"I know. I read it already. I sent you back a reply."
We stop so he can read it. He laughs.
One of Dad's friends had asked him to tell about me, in a few words. This is what he said:
My Jake is my son, loves to be called "my Jake", is my miracle, is my buddy, is my dream of what perfection is, is my hope for *my* future, is my boy, is in my thoughts 25 hours a day 8 days a week, is funny and thoroughly engaging, loves to tease, loves to laugh out loud, loves to giggle, is the greatest joy to behold, shines brightly in my heart, lives for me, makes my heart warm, brings peace in the utter chaos (like today; though Day 2 is worse, and then Day 3 is unthinkable), worries even when he says he won't, feels what I feel, loves his life again, cries when he's missing me -- without shame, says "I love you Daddy" with the softest voice and most sincere of hearts, and is the highest high I could ever want to feel.
I wrote him back and told him to tell me what he really thinks. Geez, the way he hides his emotions never ceases to amaze me. I showed it to Mom and Pop. They smiled and asked me how I felt about it. I have to be honest -- this made me cry. I know I mean a lot to him, but to be able to see this is so impressive. I am going to print it and put it in my wallet so I can read this when I miss him. Dad says he is glad I will carry him so close to my heart. I did not get it at first but then I laughed a couple minutes later.
"Oh, you finally got that, huh?"
I love his sense of humor, even if it takes me a while to get it.
I can tell he has a headache. I tell him to go and rest. I will talk to him again on Wednesday. I do not call him on Tuesdays or Thursdays because they are too awful for him. Well, sometimes I do call him, just so he knows I love him.
We say goodnight. I sit holding the phone against my chest for a moment. I love that he loves me so much.
Mom and Pop have gone upstairs already. I go up to the bathroom, wash my face, brush my teeth and get into bed. "I love you Jake" echoes through my head as I close my eyes and fall asleep in the comfort of his devotion to me.
Tuesday, April 23rd, 2002
My Dad is sick. He is in the treatment room. The needle is in his hip and he is shivering from being cold. He has dark circles under his eyes because he does not sleep well. He hurts. He reaches up and touches my arm. I want to lie beside him so he stops hurting for a little while. His sad eyes overwhelm me. I kiss his cheek. I tell him I love him. He is telling me goodbye.
Someone pulls me away. I fall away from him into the darkness.
I am disoriented. I do not know where I am. I swear I saw my Dad two seconds ago. I know I did. I could feel him touch me.
"Where's my Dad?"
"Jake? It's alright, honey. You're with Mom and Pop Christian."
"I was with my Dad. He is so sick. Where did he go?"
I look all around frantically. Then I bow my head, embarrassed. I now realize I was having a nightmare. Mom takes my hand. I must have woken them up. I feel awful. I look up at Mom with tears in my eyes.
I must have cried out because Mom is sitting beside me. Pop comes in. He turns on the small lamp on the dresser near the door. He hands Mom a glass of water and she helps me sit up. I drink it all before I can say anything.
"I'm sorry, Mom, Pop. I didn't mean to wake you. Please forgive me, I'm sorry . . ."
My voice cracked and tears rolled down my cheeks. It is pretty unforgivable to wake someone up in the night. I do not know what time it is yet. It is still dark outside.
"Sshhh Jake, don't worry. You didn't do anything wrong, son. Your dad is okay."
Pop went for more water. Mom pulled me to her and put my head on her shoulder. She held me while I tried to stop crying. I felt worse that I woke them up than I did about the nightmare. I focused enough to see that my clock read 2:40 a.m. Pop gave me the glass of water. I drank it down and handed the glass back to him, my hand trembling.
Mom fluffed my pillows and told me to lay back down. She told Pop to go back to bed. She would stay with me until I slept. She looked at me with sad eyes.
"I'm sorry you were scared by your nightmare, hon. Your dad is fine. Do you want to call him?"
"No. Thanks. I think I've woken enough people tonight. I'm so sorry."
"It's one of the risks of loving someone. You know Pop and I love you very much. We're here for you day or night. Don't worry."
She tucked my blanket and comforter over my shoulders. She sat quietly with me while I went back to sleep. I do not know what time she went back to bed. I was awake around 5:30 again. I lay quietly until just before 6:00. Before I get in the shower, I get on to my PC and send my daily message to my Dad's pager. It is nothing fancy. Usually I tell him "I thought of you today". Those are his second favorite words. I showered, shaved, brushed my teeth, dressed warmly and went downstairs. Mom had pancakes waiting for me instead of cereal.
"Did you at least go back to sleep?" I asked her.
"With no trouble. Seeing you sleeping again helped me go right back. Are you okay?"
"Yeah. Dad always worries that I will wake up disoriented. Now I know why. It's scary. Thank you for staying with me. Thanks for the pancakes too. You don't have to do this, you know."
"You went back to sleep quickly. It was nice to spend the quiet time with you. I always made Jeff a little something special for breakfast when he had trouble sleeping, or if he was fighting a cold. It wasn't often, but it's a mom's job to take care of her boys."
I smiled. I knew she loved me. Pop too. Pop tells me in words and with his heart. I feel like their boy. This is my home while I am in college. I might have to stay here when the semester ends if my Dad is not home yet. But I hope he is. I can take care of him. He is stubborn enough to fend for himself, even in a wheelchair, but it would be so hard. Doc and Mrs Doc do not think that he should have to struggle so hard.
I rinse my breakfast plate and glass. I load the dishwasher before I put my jacket on. I am not expected to do anything in the house, but I do things anyway. I keep my room clean. I clean my bathroom every Sunday. I do my own laundry because Mom works too. She does things to spoil me, but I like being independent too.
I have two classes this morning back to back. My homework is done. My Dad is going to be happy about my grades. I promised him no worse than five B's. I have 3 A's and 2 B's at the start of this week. I need to remember to tell him that. I know he will be proud. My success at school is as much for him as it is for me. The day I saw him pay for my semester was the day I knew I had to be respectful of what we was doing for me. He will not let me pay him back, and he already told me that my college costs are covered. He says it is what a dad does for his son. I took a job anyway so that he does not have the full burden. I would not feel right being on a free ride. If I pay part, then my grades will be better.
I have five classes and I work 28 hours per week at a hardware store. I am up at 6:00 a.m. and in bed by 11:00 p.m. The hours between are full.
It takes me 25 minutes to drive to school. It takes 15 more to walk to my first class. I am taking notes. I have the kind of notes that people ask to borrow.
My pager fires off before my first class ends. It vibrates against my right hip. There is a message from Pop that my doctor wants me to come to the hospital at lunch for a bone marrow test. Like my Dad, my doc will not tell me too far ahead about that. The anxiety level we feel is so high. I have to have only one, and usually on some random day during the month. My Dad has two because of his type of cancer, and where it is located, usually every 2 weeks. Since mine is in my blood, one poke tells all.
I put it out of my mind for a while so I can focus on my classes. Dad says one of the things he loves about his work is that he can spend 8 to 10 hours a day thinking about something else besides his cancer. I have learned how to do that too. It takes a lot of work though. In the beginning I was frustrated that my mind just kept going back to my cancer. I would rather think about my classes because those I can control. My classes need my attention if I am to do well.
Both classes go quickly, a total of 3 hours. They seem to do that based on what I have to do for the afternoon. I wish they had gone a little slower because now I have to drive to the hospital. I wish my Dad was here. It would be easier to take. I park in a spot at the outer edge of the parking lot and walk for about five minutes. They can not start without me so I take my time.
Pop is standing outside the treatment room door. I wonder how he knows, but then I remember that he paged me earlier this morning. Bless Pop.
"Do you want me to go in with you?" he asks me.
I shake my head. Like my Dad says, it is too personal. I do not want Pop to see. He gives me a hug because he knows this is hard.
"I'll be right here when you're finished."
I nod. He sits down and waits.
I go inside and take off my shirt. I lay down on the table. There is no place to hold on to. My Dad taught me to put my hands under my butt so I will not push back. The impulse to push the doctor away is strong. I close my eyes. I have to relax because tensing up just makes it hurt more. I turn my head too, so that I will not see if I open my eyes. He cleans my chest. It takes effort for the needle to go into my breastbone. Since there are few nerve endings for the needle to pass through, it does not hurt much. Withdrawing the marrow is what hurts because it creates an air pocket. It burns, super hot and then feels like I got kicked hard. I can feel the sweat on my face. I feel like I am standing outside my body, watching what is going on. I know, even though I do not look. The pressure makes it hard for me to breathe. My eyes pop open and I cry out. I focus on a painting hanging on the wall. I keep my hands under my butt so I will not push the doctor away. All the while my mind is screaming `take it out, take it out!!'. I get dizzy. I have to turn my head up toward the ceiling because I am disoriented. I turn my head again and close my eyes hard. I sweat so badly. I feel like I am falling. It turns dark for a while. I do not know how long.
Pop is standing beside me. He holds my hand and talks to me softly.
"All done, Jake. What can I do for you?"
The nurse is coming back already with a pitcher. Pop pours me some. He holds me up so I can drink without drowning myself.
"You didn't see, did you Pop?"
"No, son. I have to respect what you say. I heard you cry out."
"I'm sorry, Pop. I tried so hard not to. Don't ever come in until after. Promise me?"
"Jake, I . . ."
He nods. Not even my Dad can see. I can not see his either. It would be too hard for outsiders if it is too hard for us.
I stand, then grab the wall for balance. I am still dizzy. Pop holds me. The test results will determine what my doctor will do tomorrow for my chemo. I watch my cell counts like a broker watches stocks on Wall Street. For him it means prosperity or financial ruin. For me it means a life, or not.
I look at Pop, suddenly embarrassed. He sees my strange look. I wipe at the black fabric of my crotch. It is wet.
"You okay Jake?"
I shake my head. I look down, doing damage assessment, pulling at the fabric. I look back at Pop.
"I wet my pants."
I look down again, then up at him. I do not know what to say.
"Come on, son. I'd wet mine too if what you go through is even half what I imagine. I'll follow you home."
Mom is not in sight when we get home. Sometimes she comes home for lunch. I take off upstairs and hope she will not see me. I do not want her to know what I did. I get out of my clothes in the bathroom and get into the shower. I make the water as hot as I can, trying to clean away what I did. When I am done, I wrap the towel around my waist and walk across the short hallway to my room. I am glad I have my own bathroom and I am glad I know how to do my own laundry. I wrap my wet Joe Boxers and my Dockers up in the towel. I have enough laundry to do now. I get dressed then head to the laundry room on the back side of the first floor.
I ask Pop if he will throw my clothes in the dryer when they are done. I do not want to miss work. He understands and is happy to help me. Before I leave, he hugs me.
"Are you okay now?"
"Yeah. Don't tell Mom."
"I won't. Call if you need anything. Are you up for chicken for dinner?"
"Yeah. I'll be home around 5:30."
I look at my watch. It is just past 1:00 now. My boss knew I would be in later today. He also knows why. He watches out for me at work without babying me. He likes that I am good with customers. I like it that he gives me freedom to do what I like. I do work hard, but that is because I believe in an honest wage for a good day's work. He pays me $12 an hour, at 28 hours a week. I have no clue how my Dad worked 2 full-time jobs and carried a full course load of 4 or 5 courses every semester, including summers. Five courses and one full-time job is about all I can handle. Know what? I would not change a thing. My grandpa would say a little hard work never hurt anybody.
My car knows only a few paths -- home to school, school to work, school to the hospital, hospital to work, and work to home. Rarely is it hospital to home. Today was by necessity. My chest aches terribly as a reminder.
The afternoon goes great. Once a week I do orders, walking around the store with a barcode reader taking inventory. It takes three hours just for that. I process the orders in the store's PC and print them out for my boss's office manager. She cautioned me my first day that she would reject anything that was sloppy. I bought a custom t-shirt that says `Rejects' with the universal "No" symbol on top of the wording. I wear it on days I do orders. She either likes my t-shirt or my work, but Jake has "No Rejects" each week. Some day I am going to slip up and I told her so. She says `fat chance' because of my attention to detail. I will not try to prove her wrong as long as I can.
I wait on customers at the counter for my last two hours. The hours do not drag by in this store. I am constantly busy, and not with `busy work'. My boss gives me stuff to do and lets me tell him when I am ready for something new.
I think about my Dad late in the afternoon. I know he is home by now, or close to it.
At 5:30 I pull into the driveway and park behind Pop's pickup. I leave before him every morning and he rarely goes out after supper. I give him my car keys when he wants to drive my car instead of having me move it.
Pop has hung my shirts on coat hangers and folded the rest. I take my laundry basket to my room and put my clothes away. I check for E-mail. My Dad either replies back to my page from around 6:00 a.m. or there is a journal-length E-mail waiting for me. Today I get the long E-mail. That is the best. He writes to me one-on-one no matter how sick he is. He started today's note while at the hospital. He finished it when he got home. I know pretty much what he did from sunrise to sunset.
The kitchen, as always, smells great. Pop is out back sacrificing the chicken to the charcoal gods. Failure means pizza delivery. Papa John's would go broke if they were waiting on Pop. Pizza is, however, the Friday night treat. White pizza and Hawaiian pizza are the usual fare. Unlike my Dad, I think cold pizza for breakfast is a bonus. Dad would make a face. He can not describe my "Jake face" but I can describe his "cold pizza for breakfast is gross" face.
I come back downstairs after changing into `street clothes' -- blue jeans and a sweatshirt. I run around the house barefoot most of the time. I help Mom make salad. She is tending to the potato pancakes and steamed green beans. I pour three tall glasses of milk. There is a homemade blueberry pie on the counter. Mmmmm. Life is good.
After cleaning up and loading the dishwasher (we rotate turns), I go outside to shoot hoops. I am lousy at it. I need my Dad to show me. Still, I can see why he loves it so much. I can shoot just fine. Hitting anything but the backboard would be great. "Nothin' but net" would be awesome. Dad can. I can not. Yet.
Homework, E-mail to my Dad, and an 11:00 p.m. bedtime. I am, officially, oatmeal. I hope tonight will be better than last night. Mom checks in on me when she comes upstairs. She kisses me on my cheek. A few minutes later Pop pokes his head in. Another kiss on my cheek and a `I love you Jake'. I sleep with my door open because I like the comfort and smells of the house. The rules are the same here as at home; a closed door is respected. I do not need privacy much.
I fall asleep hoping that my Dad is okay. It is `Day 2' for him. I would like to hear his voice, but I will be fine until tomorrow. He will want to know how the bone marrow went today, and how I did with chemo on Wednesday. I hope he knows I am thinking about him. He seems to know. I feel him, even four hours away.
Wednesday, April 24th, 2002
I wake up just after 5:00, an hour early. The first thought on my mind is chemo today. I think back to when I met my Dad, how he measures Day 1, 2 and 3. I have Day 1 every two weeks now, instead of weekly. I remember Jeff sitting beside me while I had mine. He would get a blanket and cover us both up so I would not be cold. He would hold me, let me fall asleep against him. If I could not sleep, he would talk to me and we would watch my Dad sleep. His chemo takes over two hours with three meds. Mine was one hour with one med. Once a month I have an injection in my spine to make sure the leukemia is not traveling to my brain.
I put on my sweatshirt, jeans, and socks. It is still dark outside but I know the sun will be up soon. I can see a few stars from my window. It is clear outside. Mom and Pop are not up yet so I put my boots on downstairs. I get my jacket from the closet beside the front door. There are birds chirping and I see a robin on the front lawn. I go left off the front porch and walk to the top of a hill.
Dad and I have not been here together yet. Jeff and I have been. Jeff would do what my Dad does. He would sit behind me and put his arms around my chest and stomach. The last time he did that, I felt like my Dad was with me all over again. Jeff takes care of me like Dad does, like I am the most important person on Earth. He is not afraid of touch, whether holding my hand or holding me. He is not afraid to say he loves me, and mean it. I tell him I love him, and mean it. He is such a good man. He makes me laugh so hard I will cry. He knows when I am sad and makes me better. He is not afraid of my tears and has cried with me, when we think about my Dad. He loves my Dad so much. You can see his face light up when we talk about him. I can tell he wishes, as much as I do, that Dad would come home. We would find a way to take care of him.
The sun is orange and red, sitting under thin clouds. The morning sounds seem to grow louder as the sun comes up. It feels warm on my face. I close my eyes for a few minutes so I can feel it. Dad is outside too. I can feel him. This is how we share our lives apart. I do not have to wait for him to tell me he saw the sunrise this morning. I know he is seeing it. Today is not a chemo day for him. He has been outside as long as I have. I did not understand what he meant about feeling me, feeling connected to me, when he first told me he could. I understand now. I think about him, I see what he sees, almost at the same moment. He is inside my head and I can almost hug him because he feels that close.
"I love you Dad" I say out loud. The breeze will pick up my words and carry them south. He will hear me. It is not mystery or magic or wishful thinking. He will hear my words and then feel them in his heart.
"I love you my Jake" floats back to me a while later. I so love being `my Jake'. He loves me and I know all the reasons why. In six months my Dad has done more for me than my father did in 20 years. Dad has even undone all the lies that my father told me about why I got sick, and that I am a disgrace for being gay. I know I did not get leukemia because I am gay. I am not a faggot or a queer. I am my Dad's son, loved for all the world.
I hate to leave the comfort of this hill. I have to. I stand up and take a good long look across the fog in the valley. If I had an ego, I would feel like king of the world from here. I am just Jake. I have no ego. I am humbled by the wonders that I can see. Thank you God, for letting me live today.
Mom is sitting in the kitchen with a cup of tea when I come in. She pours one for me to take upstairs. Pop is in the shower. I can take a shower at the same time without bothering his. The hot water tank is oversized.
I stand in front of the mirror in my bedroom. I have a new lesion on my skin since yesterday. It is purple and soft, on my right hip. It is the size of a quarter. I will remember to tell my doctor this afternoon. I have a second smaller one that is a few days old, on my right shoulder above my collarbone. I remove the large band-aid from my chest. The site of my bone marrow yesterday is almost black, the size of a half dollar. It is still tender to my touch.
I shower, shave, dress, have a bowl of cereal and an English muffin. Mom and Pop give me a hug and I head off to school. I arrive for my 8:00 class five minutes ahead. I take notes and I make doodles in my notebook. I have an hour off at 9:00 so I find a sunny spot on the quad and read. My 10:00 class is in the same building. I am a little distracted and have to force myself to pay attention. I keep thinking about the new lesion on my hip. It means the leukemia is active. I am expecting to hear that my cell counts are higher than the last time.
I arrive at noon at the hardware store. I change into a t-shirt and jeans in the men's room because I will be working outside this afternoon. A new shipment of shrubs arrived this morning. I unload them from the trailer of the 18-wheeler parked in the back lot. The plants will need to be stored where it is cool. I put a dozen at a time onto palettes and haul them to storage using a fork lift. I make sure the soil is moist, give them all a drink of water, and get cases of seedlings into the greenhouse. All that took three hours. Once all the heavy lifting and moving is done, I take a shower, change back into my school clothes, and wait on customers at the counter. My boss reminds me to take care of my cash drawer a half hour early today and makes sure I get out on time to get to the hospital.
The hospital is 15 minutes away. I get there on time. I have no desire to arrive early. Even once every two weeks, this can be the hardest part. I try to keep a decent attitude about this. Dad does it three times a week, six times to my one. But then again, he has been doing it a long time. I have been doing it around six months. When he is home, he has Jeff to help him. Since he is in DC, he has only Doc. I like my oncologist well enough, but I am not here to make a friend.
I do not know why I am surprised, but Jeff is sitting outside the treatment room. I see him from down the hall. He stands up when I get closer to him. He gives me a world-class hug like we have not seen each other in years. It has been only 10 days.
"I was in the neighborhood, so I thought I'd make sure you weren't alone this afternoon."
"In the neighborhood? From two hours away?"
"Yeah, well, you know."
"You didn't have to come."
"Yes I did. You would be on my mind all afternoon and I wouldn't get anything done. I can't help it. If I'm here, I won't worry."
"Thank you, bud. It means a lot."
"I love you, Jake. This is my only way to prove it."
"You've proven it a lot of times, Jeff. I don't doubt it a minute, ever."
He opens the door and puts his hand on my shoulder as I go through. Before we got started, I remembered about the new lesion. I opened my jeans and pushed my boxers down enough to show my doctor. I also showed him the older one that was on my shoulder. He poked at them gingerly.
"Your counts are up. I saw that when I looked at your bone marrow. There are small pools of blood behind them both. You work yourself very hard at your job, no?"
I nodded. It did not occur to me until just now that I could be doing this at work. Even a minor bruise could turn into a lesion. I wondered if I made them worse today.
I introduced Jeff to my oncologist.
"This is my brother, Jeff."
Jeff is my brother and considers me to be his own. I wonder if I make him sad to think that. I asked him once. He says that every young man deserves to have a brother. He has been an `only' since he was young because his brother died. I too am an only. I have a real Dad now, and I have my Daniel, and I have Jeff and Mattie. Mattie has six brothers and a sister, plus me. He too tells me he loves me, and means it.
Jeff gets the blanket off a chair in the treatment room. After my doc hooks me up to my IV, Jeff covers me up and eases into the lounge chair behind me. The meds drip into my vein as he holds me. He holds me close, kisses me on my forehead, and tells me to sleep for a while. He will watch over me. I am glad he came, despite traveling two hours out of his way.
"Are you going home when I'm done?"
"What's your wish, love?"
"For you to stay."
"Then that's what I'll do."
"Really? Wait. No, you can't. Kellie ... and Jordan."
"Kellie's mom came today. I worked all this out last night. Even your Dad knows I'm here today."
"It's not fair to them. You have a wife and son."
"Yes I do. And I have you, too. You are as important to me. Do I have to tell you again?"
"I can't be. Not compared to what you have at home."
"You are as important. Believe me, bud. I love you every bit as much as my own family."
"Sshhhh. I'm telling you. Hear me and believe me."
I did hear him. I believed him too. He looked me right in the eye when he said it. A man who lies will not look you in the eye. He was with me on the worst day I would have all week. How could I not love him back?
I kissed his cheek and then I closed my eyes.
When I woke again, the needle had been replaced by gauze and an oversized band-aid. It would keep the butterfly from clogging with blood. Jeff was watching me.
"How long have I been done?"
"A half hour. You were too peaceful to disturb. My only job today is to take care of you, so I'm in no hurry. Do you want to sleep more?"
"Nah. I'm okay. Mom and Pop think we're overdue."
"I called already. Mom has soup for us for dinner."
I made a face again. Eating is not something I wanted to do on chemo day.
"Never mind the face, Bozo. You have to eat."
"I know. But I'll just throw up."
"Better than dry heaves."
He was right, of course. I have had dry heaves and they hurt. My Dad has broken his rib because of that.
Jeff follows me home. He takes his duffle bag out of his truck. We both get hugs from Mom and Pop. They are so pleased he came to be with me through my chemo. We sit down as Mom dishes up two bowls of homemade chicken noodle soup. Jeff has two bowls to my one bowl, but even one was pushing it for me. He looks at me, sad to know I am already very nauseous.
We rinse our dishes and put them in the dishwasher. Mom and Pop are out on the back porch.
"Let's go for a walk. The moon should be almost full."
I nod. I love this time of year. The night is cool so he hands me my sweater and a jacket.
"Yeah man, you need to be warm."
"I will be if you hold me."
"I will. But let's not take chances. I saw the lesions, remember? I know your defenses are down."
He too puts on a sweater and jacket. I like that he says something and then pays attention to it.
I do what I like to do when I walk with my Dad. My hands get cold so I put my right one in my jeans pocket and put my left one in Jeff's jacket pocket. He closes his hand around mine. He looks over at me and smiles.
"You really do love me, don't you?"
"I do, bud. It's easy to because you let me. I do worry about you too."
"You don't have to worry. You mom and pop love me. I woke them up the other morning, too early."
"What happened? Nightmare about your father?"
"No. Nightmare about my Dad. Mom brought me out of it and then stayed with me for a while."
"She's good at that."
We were at the top of the hill where I watched the sun rise this morning. The moon was almost straight overhead. It would be officially full on Saturday. There were stars shining so bright except where the moon washed them out.
He was going to sit behind me, like last time.
"Let me hold you this time. I want you to feel what it's like, since I already know. Would that be okay?"
"Yeah, that would be okay. Your Dad holds me, but it's been awhile."
I sat behind him, up against his back, holding him like my Dad would have, or how he holds me. It feels good and I bet Jeff misses that. I put my left arm around his chest and my right arm around his stomach. He wraps his arms around my arms, intertwining my fingers. I put my chin on his shoulder. We watch cars come and go down in the valley. It is too far away to make any sound. We listen to the crickets and frogs. There is an owl in some distant tree and we see a bat fly across the moon. I am startled by that.
"It won't hurt you, bud. It just picked up our scent and it's curious."
"Wampire bat," I say jokingly.
Jeff turns his head to me, showing me his `fangs', then gets into my neck. I giggle because he tickles me. He keeps it up and I giggle harder. He turns around completely, pretends he is Dracula, and makes me laugh out loud. Then he starts tickling me under my sweater. I laugh so hard. I have to wrap my legs around his waist to pull him off. Tears are running down my cheek from laughing. He leaves me alone and lies beside me.
"You know, that's the best sound of the day."
"You laughing. It was worth the trip, just for that. I wish I could bottle that and send it to your Dad."
"Will you come back?"
He puts his arm around me and tells me he will be back in two weeks again.
"Awww, I feel bad to make you come every two weeks. Once a month, then you don't have to travel so much."
"What would you do on the off weeks?"
"Fend for myself. I can you know."
"I know you can. But I couldn't. I need you."
"Yeah, like a headache."
He looked at me very seriously.
"No. I need you. You are my family. It's been too long since I had a younger brother."
He was so sad. I could tell that even in the dark. I put my arms around him and I kissed him. I put his head in my neck. I felt his tears.
"Tell me about him?"
He sat up on one elbow and wiped his face. I do not remember seeing him cry before. He put his head on my arms. Tears still fell.
"I will. Some day. I'm supposed to be taking care of you, not sitting here crying like a baby."
"I made you cry."
"It's okay. I love you is all. You're worth driving two hours for. It makes me feel better too. I really would be worrying about you if I was at home tonight. I would call you, but it wouldn't help much."
"Like my Dad says `No worries'. I'm okay. I like that you came, though. I like it that you could make me laugh. I'm sorry I made you cry."
"We need both, love. If we never knew tears, we would never know how good things can be."
He looked at me. He smiled, probably to make me feel okay. I smiled back at him and kissed him on his nose. We sat between each others legs, facing each other. I held him in my arms as he held me in his. I loved that he let me be his brother. I do not know, yet, how his brother died, just that he did. He would tell me when he wanted to. I would not ask Mom and Pop. I know they would talk to me, but I wanted Jeff to do it when he felt ready.
"Take your shirt off for a minute?" I ask him.
He knows what I want. He pulls off his jacket, sweater and shirt. I take mine off. He sits in front of me. He spreads his legs so I can sit a little closer. I put my legs over his. He knows this is serious. He waits for me.
I put my hand on my heart. I wait until I catch my breath. I do not want to cry. This is important to me. It has to be done with the greatest of sincerity. Otherwise it will not work. What I am going to do is not just words. This is the most profound thing you can do with someone.
"From my heart ..."
I move my hand slowly to his bare skin, on top of his heart.
". . . to your heart."
He closes his eyes. He takes a deep breath to draw in my energy.
My right hand is warm. It begins to tingle. He has accepted what I have given him. His energy swirls around my hand. He opens his eyes. He looks into mine.
"From your heart . . ."
I move my hand slowly back, careful not to lose what I took from him. I put my hand on my bare skin, over my heart.
". . . to my heart."
I close my eyes and feel his gift flow into me. He does not move. He does not speak.
"I will love you always dear Jeff," I say as I open my eyes.
I take my hand away from my chest. He takes both of my hands.
"I will love you dear James, always, in return."
We sat in silence for a while. We watched the moon. We saw falling stars and I made a wish, for my Dad.
"Thank you for coming to stay with me."
"You're welcome. I will come for you again. Are you ready to head home?"
"Yeah. Can I ask you something?"
"Will you stay with me, in your room, tonight?"
"In YOUR room. Yes, love, I will. Don't forget your Dad wants to make that a law some day."
I remembered. He said that no one would die alone in the night any more. We walked home, my hand in his jacket pocket with his. People would think I am weird. I feel better this way. It is just one more way to show him I care about him, and let him care about me too.
It was almost 11:00 by the time we got back. Mom and Pop had gone upstairs. Jeff and I went upstairs. We brushed our teeth, fighting over the sink and the toothpaste. We got undressed, down to our boxers, and got into bed. I put my head on his chest as he put his arm around my shoulder. I think I fell asleep in mere seconds.
When I woke up again I was kneeling in the bathroom. I do not know how I got here. Then I felt a cold wash cloth on the back of my neck. I must have woken Jeff up. I threw up again. He flushed the toilet and held my head. My head hurt so much. I felt dizzy and hot. Mom's wonderful soup. We knew it would end up this way but I kept hoping it would not. Jeff talked to me quietly. Every couple of minutes he would rinse out the wash cloth and put it back on my neck. He washed my face with a second one.
When I was done, he picked me up. He carried me back to bed. I was too weak to do anything more than fall asleep right away.
Thursday, April 25th, 2002
It was 5:30 when I woke up. Jeff was sleeping so peacefully beside me. My alarm would wake him up in a half hour. It was set on a top 40 radio station so I would wake to music if I slept that late. Most of the time I woke up before it went off. I left him alone. I do not know what time it was that I was sick, or for how long. My head still ached but I was no longer dizzy. My forehead felt hot. I must have a fever. I know my Dad would hit as high as 104 after chemo. I could still think, so I was not that hot.
I reached over to turn my radio off at 5:45. I would rather wake Jeff up myself. I waited until 6:00. I shook his shoulder gently and called his name. He opened his eyes slowly over the next couple minutes.
"It's a little after 6:00. Come outside with me?"
He nodded. We got dressed in jeans and sweatshirts for now. It was a cool morning. Fog again lay on top of the valley. The sunrise was pink and red. Jeff and I stood, holding on to each other, listening to the bird sounds of morning. We each had a cup of coffee to warm us up. We toasted each others cup. We toasted the sunrise. Then we walked back to the house.
He showered first and then got dressed while I showered. He had a site survey to do this morning, about an hour south. Something tells me that Jeff is well organized. He says he would be home again by early afternoon. He and Mattie usually took Friday afternoon off all year.
I had tea and an English muffin for breakfast. I did not dare eat more. Jeff ate cereal. Mom made me a peanut butter and jelly sandwich for lunch. She told me I had to eat at least half, but would rather I eat the whole sandwich. She gave Jeff two. He stood a better chance of eating than I did. I would eat. I did not guarantee it would stay down.
Mom took my temp before I left. It was 101. Maybe I should stay home today. I made a face so she put that idea away. I would be home by 5:30 today and I was not going out tonight. She was glad for that.
Jeff and I left. He said he would call on Sunday. He gave me a final long hug and told me he loved me. I hugged him back, and told him I loved him too.
I would have two classes from 8:00 to 11:00. I would work at the hardware store until 5:00. That is about all the effort I would put in to today. I found my concentration level to be down. The headache would not go away until after 2:00. The nausea did not pass until Friday morning.
I look at my entries in my notebook for today. Slim to none is about how to describe it. I lost interest in seeing what was around me today. I could not focus on anything. It sounds terrible to say but all I wanted was to go home. I did listen in class and I did take notes. I worked five hours but it was hard. My boss watched me struggle. He asked me twice if I wanted to go home. I was the only other person in the store with him today. I had no desire to leave him alone. I did okay though. I got shelves restocked, I waited on customers who could tell I was sick. They did not know why. I do not want pity. My boss and the office manager both knew my story. If I had said I wanted to go home, I could have gone. I wanted to prove to myself as much to my boss that I could do this job. It was not just for the money. My Dad would pick up any shortfall in cash. It was about being stubborn like you know who.
When I got home at 5:30 I sat in my car, drained. How could my Dad do this three times a week and not miss a day of work (before he lost his legs that day at work I mean). Even being stubborn, he had to have been so empty by the time he got home. I did not ever see him whining or not willing to take care of me after work. He gave me full attention even when it was painfully obvious that he was sick beyond anything most of us could ever feel. I love the man even more. He must be Superman.
These are lyrics from a group called "Five for Fighting". They are about a reluctant Superman:
Five For Fighting - Superman (It's Not Easy)
I can't stand to fly
I'm not that naive
I'm just out to find
The better part of me
I'm more than a bird
I'm more than a plane
More than some pretty face beside a train
It's not easy to be me
Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I'll never see
It may sound absurd
But don't be naive
Even heroes have the right to bleed
I may be disturbed
But won't you concede
Even heroes have the right to dream
It's not easy to be me
Up, up and away
Away from me
It's all right
You can all sleep sound tonight
I'm not crazy
I can't stand to fly
I'm not that naive
Men weren't meant to ride
With clouds between their knees
I'm only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me
It's not easy to be me
Even heroes have the right to bleed. Even heroes have the right to dream. My Dad tells me that. It means I can be strong, but I can still be human.
Pop pulled in beside me. I sat there and looked at him but I could not move. He got out of his truck and came to my side of the car. He opened my door slowly and squatted down.
"You okay son?"
I shook my head. No, I was not. He put his hand on my forehead.
"Wow. You got quite a fever."
He reached in and lifted me out of my car.
"Oh Pop, don't hurt your back!"
"I'm okay Jake. You don't weigh enough to make me put it out of whack."
Pop carried me into the house. He was not winded or struggling. I guess I really was a lightweight. He put me down on the sofa and then knelt beside me. He felt my forehead again. He had to think where Jeff had put the ear thermometer this morning. He went looking for it.
"I think it's in my bathroom."
He came back a few moments later.
"103. You're right, you don't feel good."
He went into the kitchen. I heard him draw water from the tap and put the kettle on. Tea. Tea seemed to be the great reliever of most things in this household. I drink it every day. I had found some favorite herb teas in the store, including green tea. Mom kept them on hand for all of us. Earl Grey is what my Dad likes the best. English Breakfast tea was second. I like both.
He pulled up an overstuffed chair and sat beside me. "What can I do for you, Jake?"
"Tea will do. Being here is enough. Thank you Pop."
"It must have been a long day for you. I could have stayed home from work for you today, you know."
"I know, Pop. But I won't know what I can do until I try. I could have listened to Mom but I don't want to give in so easily."
"I know. You're like your Dad. He won't slow down for anything."
Pop does not disapprove of my Dad. I think he stands in awe of him like we all do. The water was about to boil. Pop went to get two cups of tea.
"No sugar, right?" he yells from the kitchen.
"Just a half teaspoon. Same as you take."
"Oh yeah. I forgot. How do you remember that anyway?"
He is probably smirking out there. He makes me laugh. He can run a construction business with 20 or 30 people on a couple dozen projects. He can not remember where he left his head at any given moment. God love Pop. I think he married Mom to keep his personal life together. Actually I think he does it on purpose. It is just to make us feel we are necessary in his life.
He sat down again and put his feet up. He put my tea on a small table between us. I drank it slowly over a half hour. I tried to sleep a little, but I was dizzy again. The peanut butter sandwich Mom gave me for lunch was not settling well. Pop said I was very pale. Before long I was in the half-bath between the kitchen and laundry room, throwing up. Pop was about two steps behind me. He got a wash cloth and cleaned me up. I was sweating badly.
He carried me back to the sofa. He was putting me down just as Mom came in.
"Oh baby, please don't tell me you're sick again."
I looked up at her. I did not need to say anything. She felt my head and pulled her hand off right away. Pop told her I was 103 on the Richter Scale. She saw the tea cups so she knew Pop was trying. I curled up on my side. A wave of dizziness made the room spin. I ran for the bathroom again. I did not make it this time. I tripped and fell, then threw up on the hallway floor. That was enough to set off tears. I had made a mess on Mom's floor.
"I'll clean it up Mom. I'm sorry. I'll clean it up!"
"No, baby, you won't. Come into the bathroom. Don't worry about it. You're sick, love, don't worry."
She held my head while I puked again. I could not see straight. I put my head on the toilet seat and threw up yet again. This time nothing came with it. My chest hurt from doing that. I cried out from the pain. She took the wash cloth from earlier and rinsed it out again. She cleaned my face. My stomach was empty. I was so dizzy and my head ached worse than I had ever felt.
Pop had cleaned up the floor. I stood but teetered. Mom grabbed me but I fell again. Pop picked me up, brought me back to the living room sofa, and sat beside me. Mom got a plastic bucket with a little water to put beside me. I could throw up in it if I had to. I wretched again but again it was empty. I grabbed at my stomach. Mom was in the kitchen this time, making me a slice of toast. She brought it in and made me eat it. Just dry toast. But at least it would give me something to puke up. Pop pushed my hair off my forehead and put a wash cloth there. It felt so cool. I did not want to be this sick in their house. I did not want to make them have to take care of me like this.
As if reading my mind, Pop reassured me.
"Don't fret Jake. Mom and I have taken care of Jeff when he was sick. We knew there would be days like this for you. You're not doing anything that will make us care any less."
"He's right, love. Jeff took care of you last night. It's our turn. We're not going anywhere tonight."
"Thanks. I love you. I'm sorry."
"Rest, love. You did just fine today. We're proud of you. Don't give in to it now."
I heard the words. I could accept them. I had been sick and my Dad had taken care of me. Jeff did. Mattie did. No one made me feel bad that I needed someone. Mom and Pop were doing the same. Thank you God for giving me people to love, who love me back.
I fell asleep with Mom holding my hand. When I woke up again, Pop had my hand and Mom was sitting quietly with my feet up in her lap.
"What time is it?"
"No. Please go to bed. I'm okay here. You need your sleep."
"Not now, love. You've been very restless. We don't want you alone. I called off tomorrow already. Pop says he'll go to work in the afternoon."
"But I don't want to miss classes tomorrow."
"You don't have to. You'll just have guardian angels with you. I can visit a friend near campus after I drop you off. Then I'll take you to work if you're up to it. Pop will pick you up after work. But you don't have to go at all."
"Thank you, then. I do have to. My Dad does this. I need to, for me."
She looked at me with sad eyes again, concerned for me. There was no way to make me change my mind. I did not want to be disrespectful. I also did not want my leukemia or the chemo to bring me down so much that I could not have my life.
My Dad refuses to give in to his. I have seen him become so focused on his work, or kids in the neighborhood, or me. His pain was secondary. He told me it could bring him to his knees, but his life was going to be his, not the cancer's. He is not a workaholic. He is driven. Even in a wheelchair now, he teaches, he coaches a new set of kids, he fights Doc's peers. He is what I want to be, when I can be. Right now I feel beaten. Maybe I got cocky today. This is my lesson. It is not a fair fight. Dad and I have talked about him not making it, and me not making it. We want to live. I want him with me always. I do not want to leave him alone. He deserves me. He worked very hard to make me his son.
"I'm tired Mom. Please go to bed. You too, Pop. I just need a blanket."
She listened, reluctantly. A good mother would not go to bed. That is what she would think. Mothers have always been the rock. I like that, but I also like that a good mom can rest too. She would not love me any less just because she was toast from taking care of me all night. They went to bed. They left the small lamp on near the front door.
Friday, April 26th, 2002
Pop came down at 4:00 a.m. to sit with me.
"You worry too much. Pop, you should be sleeping. I'm sorry."
He did not say anything. He took my hand into his. He closed his eyes and fell asleep five minutes later. He would not stir again until 6:00 when Mom came down. I turned my head and looked up at her. She nodded toward Pop. I smiled and nudged him a little. There was tea for the three of us in a few minutes.
They love me, you know? I like it here because I can feel like Jeff did when he was growing up here. I am 20 but I still can grow up. Sometimes I feel like a little boy, like when I got sick today. Nobody was mad at me though. My father would hurt me when I got sick. He said it proved that I was a faggot because only faggots deserve to get cancer. I believed him once. I do not believe it anymore. My Dad says I got leukemia because something misfired inside. I think I got leukemia so I could meet my Dad. I needed someone to love me for real. He is the VERY best thing in 20 years. (Sshhhh, do not tell Daniel.)
These are lyrics from a new Celine Dion song. A year ago I did not listen to her music. Now I listen to all of it, including the French albums. My Dad owns all her CDs, except one. If I can find it, it will be a Dad's Day gift. The songs on her CD could be about me and Dad, or me and Daniel. Dad says this is what I did:
Where it was dark now there's light
Where there was pain now there's joy
Where there was weakness I found my strength
All in the eyes of a boy
I see the light in the sky
Oh, it's almost blinding me
I can't believe, I've been touched by an angel with love
Let the rain come down and wash away my tears
Let it fill my soul and drown my fears
Let it shatter the walls for a new sun
I am not the angel. I have touched the angel. I have been touched by the angel. And held warmly and lovingly in his arms. I have the love of a lifetime.
I am going to classes today. I knew that last night. I want to go. If I stay home, I am giving in to the cancer. I will not do that. Nobody knows I am sick except one professor, because my chemo schedule affects his class. I have nothing to prove except to me. Mom and Pop would rather that I stay home. They understand that I will not.
Same as every morning, but not because it is routine. It is important. I go outside to watch the sun. My Dad is out here with me. I thought he was kidding me when he said he could feel me. I know he was not kidding. I feel him. Today I do not care that he is four hours from me. I do a lot of things because I love him. He does a lot of things because he loves me. I do not want him to be sad, so I will go to school today.
Shower, shave, a small portion of cereal for breakfast, and two migraine-strength Excedrin for my chemo headache. It will pass soon. Class #1, a break, then class #2. My pager goes off near the end of class two. Mom is going to pick me up at lunchtime for an errand.
My Dad had a bad time of it overnight. Doc and Mrs. Doc took him to DC very early. Dad had an adverse reaction to his third chemo day. Doc says he was `empty' for a few hours. I think he turns in on himself. I call Mrs. Doc at noon like she asked. She talks to me for a couple of minutes. She assures me Dad is okay now. When she told me that she would put the phone up to his ear, I said the words he loves the most. "I love you Daddy." I hope he understood.
Mom drove me to work and picked me up four hours later. My boss let me work in the greenhouse all afternoon. I love to put my hands in dirt.
We stopped at the market on the way home. I am not good at cooking yet. I made rice, following Mom's instructions. She bakes some fish. Pop is roasting potatoes on the grill. I eat a little bit of everything. If it stays in my tummy I will be happy.
Pop and I go for a walk after supper. We do not talk a lot at first. Silence is comfortable. We keep each other company. To him I am important. We watch the sun set and see the sky turn from blue to purple to black. We see shooting stars. I make a wish to have someone to love, and someone to love me back always.
"Did you make a wish on the stars, Jake?"
"Yeah Pop. Will it come true?"
"I believe, son. I've wished on those stars enough to know I believe."
I tell Pop about my wishes, and what is going on with those that I love. I sit with Pop beside me. We are silent again. I have a lot on my mind.
I love my Dad first and best. He loves me so much. I think it is equal between us. Equal, but very profound. I miss that he holds me. Only Jeff has held me like my Dad does. He is not afraid to touch. He is not afraid when I have cried.
I love Daniel differently than I do my Dad. Daniel is my friend first, but Daniel is more. Sometimes it is romantic and sometimes it is sexual. He always treats me like I am the most important person in his life. His family does not care that we are romantic and sexual. His mom will hug me like she means it. Daniel is not an outcast in his family. He says he told his parents that they do not have to like that he is gay. How they feel would not change what he is, only who he is. Nobody wants their son or daughter to be gay. It is just the way it is.
Jeff loves me because he has a younger brother again. I love him because I never had an older brother to look up to. Jeff protects me when my Dad can not. There is a magical fire between us. He surprises me by showing up for my chemo. I think he would come even when he was not going to be in the area for the day. Kellie is friend and older sister all at once. When she is being serious, she will call me James.
Mattie feels sad for me. He is a little shy about talking to me. He has never lost a family member that he loved. Six brothers and a sister meant someone would always keep him in line, or that it would be his job to do so. Mattie and Jeff have been friends since they were young boys. Ginny is the comic who wants my sadness to turn into a magic butterfly so it can float freely away when it is done with me.
Even though he is not my doctor, Doc takes good care of me. He helps my Dad write E-mail. He talks to me when I call home. He gives me advice about making chemo easier to swallow. Mrs. Doc is my counselor and I am her patient, professionally. Personally she is my conscience. She is the one who told me to talk to Aaron. She told me he would teach me more than anyone could. She also makes from-scratch chocolate chip cookies better than anyone (and Mom C. makes the best brownies. I know her secret).
"And to add to what you are thinking about, please know I love you too, son."
"Thank you, Pop. That means a lot to me. I worry sometimes. I know what Mom thinks, but what do you think about me and Daniel?"
"About you in love? Being in love is something no one should take for granted. You're asking me if I approve of you and Daniel?"
"Do you need my approval?"
I thought about it for a moment. I nodded.
"Would it change anything if I did not?"
I lowered my head. I could not say anything. Pop did not approve.
He put his fingers under my chin and lifted my head up. He was searching my eyes. He knew what I was thinking.
"Jake. Do not let anyone's opinion about who you love make you change your mind. You would not love Daniel if I disapproved?"
"Yeah," my voice cracked. My bottom lip quivered.
"I respect you. You let me live in your home."
"You don't need my approval to be in love with Daniel. Or Mom's, Jeff's, Mattie's, anyone's, not even your Dad's. No one has the right to tell you who you can love. Who you love comes from your heart. Your choices, your life. If anyone tells you it is wrong for you to love Daniel, walk away from them forever."
"But . . ."
"I approve of you and Daniel. If you have to hear how I feel, then that's how I feel. I think that Daniel is a down-to-earth young man who is pleased and amazed that you love him. He knows your love is sincere because you've taken beatings for what you feel for him. You should have told him sooner so it wasn't so hard on you. I think Daniel would have protected you against your father."
"I think my father would have murdered Daniel."
This surprises Pop. He turns to look at me, grave concern in his face.
"My father has a collection of guns. They are for show. But I think he would have used one to keep Daniel away from me."
"Maybe it's a blessing he hurt you that last time. I wonder where you would be if . . ."
Pop did not say anything. I did not say it to scare Pop. I said it because I believed my father would have hurt me enough, one last time. If Daniel had not taken me to Aaron's place that night, I would not be alive. Aaron had felt, early on, that the abuse was coming from home. I knew he would not get me fixed up and return me to my parents. Everything I knew about him told him he would save my life.
"I miss my Dad."
"I know you do. Let's go home so you can call him."
Saturday, April 27th, 2002
I wake while it is still dark. The clock on my nightstand says 3:55. I lay there and wonder what woke me up. It might have been a dream, but I do not remember it. I roll on to my back and immediately get on my side again. My back aches badly. My hip too, on the left side. The pain is from lesions inside my bones. They are different than the lesions on my skin. Only X-rays show the bone lesions. They are small tumors inside. Chemotherapy is making them smaller. Painkillers will not work on that type of pain. I have to live with it.
I lay quietly and think about my Dad. He manages pain by taking his mind away to places he has been to. I can not do that easily. I have not been further than New York state. My Dad has been all over the United States and to Canada. I think about him, hoping he is sleeping okay. I think about the first time I ever saw him. I remember how little Ben climbs all over him looking for a candy bar. I remember how embarrassed I was when he caught me kissing Daniel. I remember his advice to be good to Daniel. I remember the day legal papers arrived in the mail. I knew that my name had been changed. He surprised me by showing me signed adoption papers instead. I know what it is like to cry in pain and to cry in joy, and to be held by him no matter what. I know how he loves me. Sometimes I feel like I am going to lose him.
I wake again at 7:30. I do not have to be up early today because it is Saturday. There is no sun rise to see because the sky is overcast. I shower and dress in school clothes.
I have my final class at 10:00. It goes until 11:30. I fill four pages in my class notebook and one in my journal notebook. I now understand how my Dad does this.
I will work from noon to 6:00 today. It is pay day. After taxes I make about $300. I will put it in my checking account. I will pay for books or part of my tuition. I wanted to pay rent to Mom and Pop but they would not hear of it.
My back still aches. I get up and get in the shower. Heat feels good so I make the water as hot as I can stand. I do not wash yet. I stand with my hands against the tile wall. I rub the heat into my back, and then into my hip. The purple bruises on my skin are fading. The bone marrow site on my chest is now yellowish. It no longer hurts to the touch.
Mom waited until she heard my shower to start my breakfast. That meant that she had 15 or 20 minutes before I arrived in the kitchen. When I was getting dressed I smelled sausages cooking. Saturday meant a good breakfast. I could smell pancakes as I walked down the stairs. Pop was making a fresh pot of coffee.
Lunch was optional, but I packed some fruit to take to work. Sometimes my boss would treat for lunch. He routinely brought things that his wife made.
I ate two sausage patties , a scrambled egg, an English muffin and two pancakes. I had two cups of coffee. My appetite was back, which pleased Mom. She would plan dinner based upon my appetite.
Dinner was too far ahead to think about. Anything could happen from a quiet dinner for three to Jeff, Kellie and baby arriving before I got home. Today I was wishing for a weekend visit, even though I had seen Jeff on Wednesday.
Saturday morning was the busiest part of the week. Contractors had orders to fill for the next week. I spent from noon until 5:30 taking care of about 35 contractors and subs. This included Pop. He came in at the end of the day and gave me my second largest order of the day. I spent the last half hour cleaning up. I told Pop to tell Mom I would be home by 6:30. I would stop by the bank to deposit my paycheck. When I took the receipt showing the balance I almost passed out. Then I realized I had put my paycheck in my Dad's checking account. I must have been on autopilot. I still held Dad's ATM card in my hand. I even keyed in his PIN number, which is different from mine. My mind works in really strange ways.
Note to self: tell Dad Jake had a stupid moment. And do not spend my paycheck.
The driveway has one more car in it then normal. I smile about a mile wide. I got my wish. Jeff is sitting on the front porch alone. He comes over to me and gives me a hug like he has not seen me in weeks. I love that about him. I hug him back and he gives me a kiss on my forehead.
"Love you, bud. Nice to see you."
"Love you too, Jeff. Guess this means I gotta sleep on the sofa again, huh?"
He knew I was kidding. But he surprised me. He pulled out a sleeping bag from the back of his car.
"Really?" I say, all smiles.
"It's going to be a nice night. You and me under the stars. How would that be?"
"Come on, let's go see what Mom has for dinner."
The kitchen was moving at a furious pace. You would think we were running a world-class restaurant, not a family kitchen. It was not chaos, but everybody was doing something. Pop was grilling a roast outside. The two ovens were in use. Four burners were lit, all on low flame. I took over watching those. Jeff manned the ovens. Mom was making salad. Kellie was finishing her dessert. All the while I am thinking it is a good thing I skipped lunch.
By 7:00 we were seated at the table. I sat at the head of the table. Mom and Pop started doing that my first day here. They did not want me to feel like an outsider. Pop sat to my right, Mom to his right. Kellie sat at the other head of the table. Jordan sat in the highchair, and Jeff sat to Jordan's right. The family circle began and ended with me. That was a special honor.
By 8:30 we were having tea and dessert. Kellie had made a chocolate pound cake. All baking in this family was done from scratch. The recipe belonged to Kellie's grandmother, who was from Germany. Kellie put the baby to bed and stayed with him until 9:00. Jeff and I picked up the counters and loaded the dishwasher. Jeff ran water to wash the pots and pans. I got a fresh towel out of the drawer. Mom started to get up but Jeff waved his finger at her. She was not needed here. We dismissed everyone to the living room. We finished washing and drying. We put everything away and started the dishwasher. We wiped down the counters and the table.
By 10:30 Mom and Pop headed upstairs. Kellie took a bath and got into bed. Mom had already changed the sheets. She was the only one, as usual, who knew the kids were coming for the weekend. I went into my room long enough to get a sweatshirt and clean gym shorts. Jeff dug his clothes out of his duffle. We both got good night kisses and passed them on to Jordan Matthew.
Jeff and I set up camp at the top of the back yard. The hill sloped nicely. We zipped our sleeping bags together and set up a Coleman lantern. Jeff said it had a full charge so we could leave it on while we went for a walk. He took my hand. I wrapped my fingers around his.
"You cut up your hand," I said to him.
"Yeah. I lugged bushes around all day today, at one of my landscaping projects. Kellie calls `em `cactus hands' because they are so rough. I forgot the hand cream."
Even rough, it felt nice to hold his hand. If someone else saw us, they would think we were queer. To us, it is brother holding brother. I would not care what someone else thought. I am important to Jeff, therefore he holds my hand. I like being connected. His touch means I am not alone.
We sat down. He got behind me, wrapped his arms around my chest, and kissed me on my neck.
"You've had a busy week. How do you feel three days beyond chemo?"
"Like myself again. Thursday was bad. I puked in the hallway behind the kitchen. I was scared. My father would beat me worse if I got sick. I knew better this time, but I didn't want Mom to be mad."
"She wouldn't be."
"No. She held my head. Neither one of them slept good. Pop spent a lot of time with me."
"They love you, you know. Just as much as they love me."
"I know, but . . ."
"Sshhhh. No buts. They took you in because they love you. You don't have to be alone. They both know you are going to be sick from chemo. That is part of loving you, caring about you."
"Pop cleaned up my mess."
"He cleaned up mine too."
"My Dad had a hard time early yesterday. He spaced out. Doc says it was like a body with no soul."
"He's okay now. I talked to him at lunchtime today. He and Andy Jr. played ball all morning."
"I can't picture him playing ball in the racer. I would have to see him for myself. He's so stubborn."
"I have a friend who is a paraplegic from a car accident. She is in a racer too. I've seen her tool around like she was born in it. Your Dad probably does the same thing. He keeps saying he doesn't want to live that way, but if he had to, he would."
"What an indignity."
"No, love. He would hold his head high. He would manage. I hope he doesn't have to, but we don't know about the tumors on his spine."
"They make me scared. I wake up in the middle of the night being scared for him. It happened earlier this week again. It was the night I woke up your folks."
"They weren't mad. Mom stayed with me and then went back to bed when I went to sleep again. How come they really love me so much?"
"Because you are Jake."
"That's not a reason."
"Then how about this for a reason. They know you hurt sometimes. They know everything that your father did to you. It's appalling to them. I never got spanked. If I was bad I had to take a time-out. Jordan will never know what my hand feels like raised against him. Your father should be in jail, but your Dad thinks he has put him in his place. I still remember that day like it was yesterday."
"I can push my father out of my mind so easily. I can't do that with my Dad though. I think about him all day, when I first wake up, and last thing at night. I want him to hold me so bad."
Jeff held me tighter. He knew he was not my Dad, but he knew how to hold me so I knew I was loved. I put my head back against his shoulder. He turned my head a little and kissed me on my cheek. I returned the kiss. My big brother loved me very much. I got all the affection I needed.
The full moon peeked in and out of the clouds. There was no sound out here except crickets. The air smelled so clean.
I folded my arms around Jeff's. He held me while I fell asleep. I woke long enough to see that he had carried me from our overlook to the makeshift campsite. He put my sweatshirt on me and took off my sneakers. He put me inside our sleeping bags, and then lay against me, holding me. I tucked my face into his neck and slept, safe and content under the night sky.