Chapter 6

Stresses, inside and out

Wednesday, July 9

My favorite blue bibs, again, and a simple tee underneath. I have good legs, might as well show them off. PT went okay, but Sarah was so tired from yesterday that she didn't push the envelope. I enjoyed working with another patient, a high school soccer player rehabbing from major knee surgery. He seemed disappointed that I had a top on under my bibs. He'd of been really disappointed to know that the top was hiding what I didn't have, rather than what I have.

After PT, I took Sarah for a walk along the path that follows the river. Actually she was in her chair, but we took the walker along so she could get a few steps in here and there. She had a lap robe to cover the leg while she was in the chair. When I had her up walking, she got several glances, some rude stares, and a few smiles and "thumbs up" signs. She seemed to handle the attention okay. One time when Sarah was up walking, a mother and her four-year-old daughter came walking from the other direction. I was concerned the little girl would be frightened, and that would make Sarah feel bad, but she looked Sarah up and down, and said, "That's a silly leg." Her mother turned beet red and tried to shush her up.

Sarah just smiled, and said, "You're right. It is. But it helps me walk. And I'm going to get one next week that doesn't look this silly." Sarah assured the girl's mom that the girl hadn't embarrassed or bothered her.

We ate lunch at a Mexican restaurant. Well, I ate lunch. Sarah was still a bit off her feed, so she munched on a tortilla and drank some iced tea. The lunch helped stop my withdrawal symptoms from Mexican food to have a hot pepper fix. The food at Hope Haven isn't bad, but it's pretty bland.

We stopped in a funky used clothing store to pick up a going-away present for Billy Yates. He's at the end of this course of treatments. Sadly, he's not in remission yet, so he'll be back for another round in a few weeks. Billy likes ball caps when he's out in public, and has quite a collection. We found a few that we thought we might enjoy. Sarah brought me a bright red skirt decorated with a bandana pattern. I didn't know why, since I only could wear it twice at the most before it was time to go home. Although we were wearing our wigs today, we found a few nice scarves to wear on chemo days.

After we went back, Sarah wanted to rest and encouraged me to go ride. Instead of my Spandex, I put on a tank top above my sports bra. My dotted, lacy skin showed through, but that was the idea. Maybe more sun would even out my tan line. Yes, the red and blue ribbons fluttered from under my pink helmet, even though I had to wear my wig so I would have something to attach them to. It was a good ride, and I clocked a bunch of miles before I got back at supper. Sarah, Billy, Billy's mom and I all sat around the table and talked after the others had left. It was going to be sad to lose the other of our original friends at Hope Haven.

Thursday, July 10

Yesterday was great. Today was off the scale in the opposite direction. Kevin was disappointed in me that I didn't follow through on having Sarah out in public more. We promised to work on it. Sarah's leg was sore from yesterday, so she didn't make much progress in PT. The pool time was good, though, for both of us–except that the lace pattern sunburn showed up above my swimsuit completely on my back, and about an inch in front. Everybody thought that was hysterical, but me. How much more hysterical would they find it if they knew it was on a boy's hide? Chemo hit Sarah hard today. She was sick even before I got her back to our room, so more cleanup. She was unusually grouchy and sensitive, but I guess I can understand why. She spent the rest of the afternoon and evening in bed or in the bathroom. Billy left. Oh, yeah. Just for the official record. Today I'm wearing white walking shorts and a pale green dragonfly print blouse, accented by 2 dragonfly clips in my hair. Four hoops and one green stud in my ears. Oh, well. We’re half-way through. Just three more weeks and I won't have to worry about accessorizing.

Saturday, July 12

The red bandana skirt made its debut today, along with a simple white blouse, a bandana around my neck, and red headband in my wig, as Sarah and I prepared to go out for lunch with her mom and dad. I looked myself over in the mirror. "Do you know what gets to me sometimes?" I asked as I adjusted my skirt.

"No, what?" Sarah replied.

"I’m supposed to be your sister. I’m wearing this steady diet of skirts, dresses, jumpers, embroidered tops, cute, cute, cute, and do you know what I bet your real sister is wearing right now?"

"Right now, probably her cotton nightie because she likes to sleep in on Saturdays, but yes, she’ll be wearing jeans and a tee shirt." She smiled at me. "So you’re Annie, not Julie. You’re a bit more feminine in your style. Tell me. If you’re going to have to be Annie, anyway, don’t you like the way you look?"

I looked at the mirror again. "Yes, I guess you’re right. I just have to sound off every now and then. I kind of like it. Thanks again for buying me the skirt, by the way–but don’t expect me to wear it to school next fall."

"I won’t," she smiled. "But if you did, nobody would guess you were Mark, unless you told them. The other boys wouldn’t hit you, they’d hit on you."

The Holdings came early, because they wanted to take us over to Westland to spend time with Julie, too. We stopped on the way for an early lunch at a big western-theme restaurant that served chuck-wagon style dinners. "That's why I brought Annie that skirt," Sarah told her folks (and me–this was the first I knew about it). "You told me on the phone that we were coming here, and when I saw that skirt, I knew Annie would make a great-looking cowgirl. Too bad she doesn't have any boots, though."

Since the Holdings now had a handicap sticker, we were able to park next to the door. Sarah decided to walk in, so we left the wheelchair in the minivan. The nonsmoking area was a down a couple of steps–there was a ramp, but you had to walk a long ways. Sarah had worked a little bit on steps in PT, so she was willing to give it a try. She was almost down on the floor level again, when a waiter with a tray bumped me from behind. I stumbled and bumped Sarah. She lost her balance and fell, face-down.
"Are you okay?" We all shouted at once. Mr. Holding, I, and about three waiters all started to reach down to help her up. People from all over the area were watching us, concern on their faces.

"Please, get back. Give me some room," Sarah pleaded, as she started to roll over.

"Are you sure? We can help, sweetie," Mr. H said.

"Dad, everybody, please. I've fallen in PT several times, and other times they've gotten me down on the floor to practice getting up from a fall. Now let me do it, I need to do it myself," she said as she set her collapsed walker upright and pulled herself up on it.
The restaurant staff was apologizing profusely. "Please, just go away," Sarah said, now back on her feet and catching her breath. "You're embarrassing me. Let's just find our table. No, wait. My right leg isn't sitting quite right. Let's go to the bathroom, so I can readjust it." And we did, while Mr. H waited outside.. This was the kind of incident that earlier I was afraid would shatter my shy Sarah emotionally. Now I admired her grit more than ever.

"At least my leg didn't fall off," she chuckled as we talked about it. "That sometimes happens, they tell me. The extra belt around my waist keeps this one a little more secure. Now wouldn't that be embarrassing? 'Pardon me, would you pick up my right leg for me?'" she giggled. We went back to the table. Mr. H informed us that we were going to have top-of-the-line steaks instead of the BBQ sandwiches and beans that we'd planned, and the restaurant was paying for it. The Holdings said we could cancel the trip to Westland, but Sarah said it would be okay to go. She did agree to have us bring the wheelchair back for her, though.

Julie was wearing Saturday grubbies, faded jeans and a tee. She frowned a little when Mrs. H made some comment about which twin was the more nicely dressed. "You always did like Annie best," she tried to joke it off, but I could tell that the remark had hurt. Julie showed us around the gym facility where she worked, helping with the summer sports camps.

Back at the dorm, Sarah laid down on Julie's bed for a rest. Sarah and Julie's parents had left to gas up the minivan. Julie pulled out two tees, one tan, one mint green. They proclaimed 'Westland Woman Power' and had silhouette images of women participating in sports on them. "You can have one," she said. "Which one do you want?"

"I guess the green one. It'll go nicely with some shorts and a scarf I have back at Hope Haven. Thanks."

"I might have guessed you would pick the most feminine. I know we set you up a little by giving you more feminine clothes than you had anticipated, but sometimes I'm worried that you're into this a little too much–that we've created a Bride of Frankenstein monster."

I was hurt and a little angry. "Julie, you're right, you did set me up. I'm sorry about what your mom said earlier, and I know you’re sensitive about people not seeing you as feminine. Well, I'm kind of sensitive about being seen as super feminine all the time now. Yes, Annie has developed as a more feminine girl than either of us ever thought she would be–I would be–whatever. You have no idea how much I'd like to spend just an hour without the big blue nails, without the makeup, without the dress, and just be Mark again. It is so tough trying to live as something I'm not, always worried about being discovered, 24 hours a day. It's worth it, I'd do it over again, but it is tougher than you or I ever imagined."

Julie sighed. "Mark, please don't get me wrong. If you weren't doing this, I wouldn't be here, and I'll always be grateful to you. I feel guilty, too, because I'm not there with Sarah. And I know it's tough on you being someone else all the time. I've tried to imagine what it would be like if I had to pretend to be a guy like you're pretending to be a girl. I imagine it would be fun at first, but I don't think I could handle it–anyway, not like you're handling it."

"Thanks, Julie. This kind of situation stresses us all out a bit. And please, don't be jealous of my wardrobe. Just remember that in a few weeks it will be yours, and you can play cowgirl, too. Thanks for the shirt, by the way–or did I say that already?"
The Holdings came back, and wanted to hit the road. They weren't spending the whole weekend with us to save on motel costs, so they dropped us off at Hope Haven after supper.

Sunday, July 13

I had hoped to take Sarah to church today, as part of my efforts to get her out more. But between the busy day yesterday and the wearing effects of chemotherapy, she spent the morning in bed. I didn't feel like going by myself, so I went down and read the Sunday paper in the living room, and went back to help the weekend cook. I hadn't bothered to put my wig or scarf on, but I was wearing the Westland shirt that Julie gave me yesterday, white shorts, and short lime green socks. Since so many of the kids didn't spend weekends at Hope Haven, meals were light. They still took some careful planning because of the different dietary needs.

"It's kind of lonely around here without Billy," I remarked.

"Yes it is," Sarah said. "I like his mom, too. She has had so much to deal with through the years. Did you know her husband left several years ago? He couldn't take it. Chronic severe illnesses like that really take a toll. Oh–did you hear about Roberta?"

"No, what?" I asked. I had assumed that she was home for the weekend.

"She's back in intensive care. They're very concerned." I was shocked. Sarah and I had been working on another set of silly earrings for her, and we assumed that we'd be able to give them to her tonight. That poor kid. I wanted to go see her, but the cook said that they allowed immediate family only. I might want to go and spend some time in the ICU visitor's lounge with her mom, though. "We have some new kids scheduled to come in this afternoon, by the way. A little boy with a blood disease, and a teenage girl, 14, I think, with childhood leukemia."

Later that afternoon, the new girl and her mother did come in. Sarah was downstairs by then, and we had just commented on how we had gone from being the new kids at Hope Haven to being the old hands. We talked about ways that we could be helpful and friendly to the newcomers, like Kelly and Billy had been for us. Neither of us had any head covering on, and weren't even thinking about it, when the newcomers arrived. We went to greet them. The girl, Wendy, had long, dark hair. We introduced ourselves, and both mother and daughter looked stricken. The girl began to cry. We realized why. She was seeing us as her future, and she was right. We apologized, and went upstairs.

We were both stressed as we sat in our room. Sarah told me that she had heard parts of my conversation with Julie yesterday, and asked if I were sure that what we were doing was okay. "Yes," I said, then I burst out bawling. Sarah cried, too, and we hugged. I couldn't stop crying, and the male voice in the back of my head was scolding me for it.

"Sarah Beth, I keep worrying about what Julie said, about creating some kind of monster. Sometimes I worry that I won't be able to get Mark back when all this is done. What if this changes me into some kind of sissy or something? Would you still love and respect me? I mean, I don't think that will happen, but I worry about it."

"Poor, poor Annie," Sarah Beth said as she hugged me. "I know this is confusing to you, and hard for you. But it'll be okay. You'll get Mark back again, I'm sure."

A nurse's aide poked her head in the door to see if everything was all right.

"It's all right," Sarah smiled. "Annie's just worried that she hasn't heard from her boyfriend lately." Then she whispered to the aide, "A little PMS, too." I couldn't help but giggle, but then I cried some more. The aide left.

"You've given up so much to be here for me, Annie." She whispered to me "You can't be Mark just now, since the walls seem to have ears." Then louder she said, "You are the kindest, gentlest person I know, and you've been strong for me. I can be strong for you, too." I realized that as tough a time as I was having being someone else, that Sarah Beth was facing a whole life of not being who she used to be: the sweet, shy, happy girl who always blended in, who didn't worry about cancer coming back, whose body was lithe and graceful. Yes, we could keep on being strong for each other.

We talked a little longer. "Annie?" she asked. "Is there anybody else you could talk to about this? I'm glad to hear you out, don't get me wrong. But I'm concerned that you are dealing with some feelings you may not want to talk about to me, or even think about to yourself. It might help."

"Who?" I asked. "It would be a relief to talk with someone, but if we give away our secret, we'll all be in trouble, and I can't stay with you any longer."

"Maybe a counselor, or a minister," Sarah thought. "They're supposed to keep things confidential, aren't they? Maybe Reverend McGrail at the Presbyterian Church here. She seems like the type who would listen without judging." I agreed to think it over. I really did need to be able to spill my guts to someone, and it was unfair to Sarah that I keep dumping on her.

Finally we made our way downstairs, hair in place, and tried to reassure Wendy and her mother.