Hooked on Hope

“The art of medicine consists of amusing the patient while nature cures the disease”

---Voltaire

Arriving early I park on a side street. I’m grateful for the deep shade of trees this hot August morning. An NPR story about New Orleans five years after Hurricane Katrina is background accompaniment to my whirring mind. Am I doing the right thing seeing a camper outside of camp? How do I break down teaching crochet into small enough chunks so a brilliant nineteen year old who is recovering from chemo can absorb it? Amanda wants to make cozy hats for other teens who are newly bald. Nearly always she wears one that was given to her when her own hair fell out.

I reach for my practice yarn on the passenger seat and let my hands remember the steps for chaining and single crochet as I listen to the radio and muse. Out of the corner of my memory I see a glimpse of the cover of one of my favorite memoirs: Totto Chan: The Little Girl at the Window by Tetsuko Kuroyanagi. This book has spurred my passion to empower kids since the 1980’s when I read it to my daughters. 

Totto Chan wants everyone she meets to be happy. Born just before the bombs were dropped over Hiroshima and Nagasaki she lives life at full speed. In one chapter she helps Yasuaki, a nine-year-old boy in her class, whose polio stricken legs are in braces, to see the view from her favorite tree. She pushes, pulls, shoves and coaches him up the tree. Though the adventure necessitates much problem-solving, is precarious and exhausting, the two children are delighted with the outcome. I want my young friend Amanda to see the view from the tree which I’ve named, “Capable Crocheter.” I want her to feel empowered to catch her dream.

My husband and I have a running theme in our marriage of 38 years. Like Totto Chan we seem compelled to champion folks who’ve been dealt a difficult hand. We feel extraordinarily lucky and we want to give back… much the same way Amanda wants to give back - making and distributing chemo-caps. 

“Pun,” as my husband is called at camp, does magic for kids in hospital and has done so since he was sixteen. We both volunteer at multiple kid venues including Camp Ronald McDonald for Good Times, Padres Contra el Cancer and The Painted Turtle Camp. He’s much more active than I- volunteering hundreds of hours each year and earning Volunteer of the year awards. In his shadow I do what I can. I’m better one on one than with big groups. 

So many of the young cancer survivors we meet at camp are inspiring heroes to the rest of the world – like Totto Chan and Yasuaki – trying new things and challenging preconceived notions of limitation. My personal goal is to level the playing field where ever I can. Life isn’t fair. It takes so little to give a smile to someone who hasn’t worn one for a long time.

Ooops! The radio signals me it’s ten o’clock, my appointed time to be at Amanda’s. I pull around the corner and park in front of her house.

Gathering my stuff, I’m recollecting what I know about Amanda. Her leg is gone. I am outraged for her. I have dreams – nightmares – about what happened to it. Burial at sea? Burned? Buried with other amputee’s best beloved limbs? Her equanimity shames me. There ought to be a ceremony. All I know for sure is that she had two legs and was vibrantly alive. Now she’s a one-legged wonder with a lot of spunk and a mission.

I get out of my car. On the short walk from my car to the front door I remember January, when we shared a cabin for her very first session of camp… 

I see her perched on her lower bunk while her ten cabin-mates bustle about – in tank tops and shorts - arranging their stuff on their bunks and shelves in the over-heated cabin. This is where we’re all sleeping during our four days at Camp Ronald McDonald for Good Times.  

Reliving this first night of winter camp I can almost feel how freezing cold it is outside – a welcomed body memory as I approach Amanda’s front door. It’s already 90+ degrees in the shade here. 

In my memory… 

Amanda is wearing her coral-colored crocheted gift-hat. There’s a perky flower on it with a yellow center. 

 “I’m afraid I’m not going to fit in here,” she confides to Charice. She’s squirming on her lower bunk, shoulders hunched, head down –almost sheepishly futzing with her baby-doll night dress in an effort to hide the fact that her right leg has gone missing. She reaches out to pull her walker out of Kate’s way.

“I don’t want to be a downer or a burden and I sure don’t want anyone feeling sorry for me… I can’t trust that kind of friendship,” she continues, sighing deeply. She pulls off her fuzzy hat and pokes at the flower.

“What?!” Charice is wide-eyed. “You SOOO belong here, girlfriend!” She plops down on Amanda’s cot. “Oh, may I sit on your cot?”

“Of course.” Amanda looks up. Her smile is radiant.

Heather comes over and sits on the floor in front of Amanda and Charice. “I had part of my brain removed,” she says. “I had a walker for a long time. Hey! We can decorate yours at Arts & Crafts!”

Terri says, “You know… my brother was so sick... I remember tiptoeing around. I thought there was no love left over for me. I felt so guilty to tell my parents when I needed anything… you know, like for school. I felt angry, and guilty for feeling angry and needy. But he needed mom & dad’s attention. I was so confused.”

The eleven campers - eight patients and three siblings of patients - settle-down and make an impromptu circle around Amanda’s bunk. Each of these amazing seventeen to nineteen year old women tells her story. My co-counselor, Tanni looks at me. We are both awed by the depth of conversation initiated by Amanda’s near apology for arriving here less than perfect. We gather the few girls still milling around.

“Let’s continue our closing circle, girls… so we can hear from everyone who wants to share,” I say.

Gretchen says, “After my surgery I had a stroke. Now I limp and I’m like totally numb on my right side.” 

Laurel says, “I know my illness totally messed up my brother and sister’s lives but I couldn’t do anything to change my parents’ behavior. Like your brother, Terri, I really did need all that extra attention just to get through the effects of surgery and chemo. Still…,” she tells us through her tears, “I felt so guilty for taking all the attention.”

Tanni and I each take some Kleenex and pass the box.

I found out later that Bethany went unsupervised at the height of her sibling’s illness and during our camp session she was six months pregnant by an abusive boyfriend. She felt so alone and so horribly “bad” she still hadn’t told her mom or grandmother. She sat silent through the entire out-pouring of heart-felt reality as each girl shared. I only found out later from a counselor, who had Bethany in her cabin the previous summer, about her situation. Bethany up-dated her summer counselor because she already knew the story. All we can do at camp is to shower them with unconditional love. Still… I wish I could have followed Bethany home to smooth the path for her. 

Camp is magic. Cancer is an equal opportunity destroyer. Surviving it and the effects it has on family life creates bonds that run deep as the Mariana Trench. These kids did not ask to be in this special club. But each understands intimately what membership brings… and what it costs.

Camp has strict rules governing interactions between kids and counselors outside of camp. The firewall is there for a good reason and on a few occasions my husband and I have gently pushed through the firewall to be of service to particular kids or families whose needs match our skill sets, but only when we’ve been invited to do so by the parents. My husband “Pun” is great at lifting spirits of patients, siblings and parents; I’m good at teaching crafts and some simple techniques to ease discomforts related to treatment. My name at camp is “Moose.” “Pun” (king of the bad jokes) named me long before our camp involvement. He joked that I was too big to call “deer” (dear). Moose stuck and has been my camp name since I started in 2000.

Amanda’s mom invited me to come today. Still, nearly at their front door, I suddenly feel a bit shy. I don’t want to be misunderstood in my follow-through of a promise to teach mother and daughter how to crochet - a promise made while visiting Amanda in hospital. She was undergoing chemo therapy for the cancer that ate away half her pelvis before being correctly diagnosed. The necessary surgery left no place to attach her right leg – which was healthy – so she had to lose it.

I hate cancer. I hate the suffering it - and the treatments, Slash, Burn, and Poison - visit upon vulnerable patients… especially when those patients are children. 

My jaw clenches. I look at my sandaled feet, take a deep breath, squeeze my yarn bag and clear my throat knowing that as I ring the bell and step over the threshold I may also be stepping over a line.

*********

“Moose! Come in, come in… Amanda is just here in the living room,” says Lynn, Amanda’s mother.

There, at the end of the couch, stands Amanda’s walker – the one she and her cabin mates decked out with feathers and flowers at camp. On the low coffee table I see the bag of yarn I brought to Amanda’s graduation party last June. She celebrated a double graduation: from High School and from Chemo! Pun and I were honored to be invited and got to meet family members, long-time school pals and her new friends from the teen cancer-support group.

Her yellow sundress is fluffed expertly around her, carefully concealing the gap where her right leg should be. She brought her prom pictures to camp to show us what she looked like before her diagnosis and amputation. We all oohed and aaahed over her beauty, her waist length wavy black hair, the gorgeous dress, sexy shoes and the cute guy on her arm. Today her face has a grayish-green cast. She’s got new, soft fuzz growing back in on her head. Her eyebrows are carefully penciled on. 

“Hey, Amanda! I’m so glad to see you!” I put my purse and yarn bag down and hold out my arms.

“Hi, Moose!” Her smile is still radiant.

I’m leaning down to hug her. She reaches for her walker and stands up to hug me tight, then moves to the center of the couch nearer the coffee table to sit. 

I sit to her right. 

“How’s your summer goin’?” I ask.

“I had a blast at summer session and I’ve been in touch with Heather and Lindsay and Laurel from our cabin in January…” she begins, then urgently Amanda gets up and goes quickly with her walker down the hall. Click, clack, slide, click, clack slide. She’s so fast!

“I’ll be right back, Moose.” She calls over her shoulder.

I hear muffled conversation in the hallway. Several minutes later, she returns looking pale.

“Sorry, my tummy feels crummy today.”

“I’m sorry too, Lovely. Remember there’s nothing here you have to do. Just like camp… this is challenge by choice. I can come back another time.”

“No. I want to do this.” She says, plopping down next to me and I believe her. 

Lynn returns with some glasses of water for us and sits to my right.  Lynn, a veteran knitter, shows me how she tried to figure out crochet using a book, a hook and some yarn I brought to the party. 

“It’s beautiful!” I say. “I have no idea how you did that!”

We giggle over the purple and green woolen caterpillar-like creature attached to the hook.

I set up mother and daughter with practice yarn of their choosing and appropriate-sized hooks. 

Amanda wants desperately to master this skill. I want to empower her with the basics. I teach her to make the first loop which she practices several times. Her hands are shaky and her comprehension is wobbly. Maybe it’s the new rounds of chemo. Maybe it’s just that she’s feeling distracted by the nausea today. I hate cancer.  She works on her first chain of twenty or so loops.

“Ooooh, I can’t do it!” her hands shake more with the effort of trying to squeeze the hook through too tight a loop.

“Do me a favor,” I say lowering my own hands to my lap and looking into her eyes. “Pun taught me this: Say, ‘Moose, I can’t do it – yet.’”

“Moose, I can’t do it - yet.” She mimics, lowering her hands to her lap.

“What you’ve got here is a pretty even chain of loops,” I say holding it up. “Can you see how uniform they are?”

“Yeah… but…”

“That’s veeeery goooooood.” I interrupt. “AND, yeah… you’re right, it’s hard to do when the loops get too tight. That’s where tension control comes in really handy. Remember you can make the loops tighter by lifting your pointer finger up - which pulls the yarn – making tighter loops, and you can lower your finger – to give more slack to the loop - making it looser.”

She practices the tension adjustment for a dozen more loops and her eyes light up.

“I get it…” She looks up at me.

We smile into each other’s eyes.

I sense Lynn smiling next to me. 

“OK… here comes a fun part. Are you ready?”

Amanda nods.

“Just by pulling this here - your working thread - you can undo all your work and start fresh!”

“What?!!” she looks horrified.

“Well… you could continue as you are, but I think it will be easier if we start you off with a lighter color yarn so you can see more clearly what you’re doing and if you use your new found tension control skill from the very beginning. It’s all just practice… the more you do the better you get.”

“Ooo Kaaay…” Doubt drags out her response. “But I want to save this one… to remember what I did.”

“Gotcha! Great idea… then you can look back and see your progress… like a mountain climber looking down the mountain to realize, ‘Wow! I’ve come a long way!’”

She puts the navy blue starter chain carefully on the coffee table. We start again with light-pink yarn and already I can see her progress.

“Wooo hoo! Remember how long it took you to make that first loop a while ago? Now you’re a pro! No sweat! Look at you go!”

“Here’s another one to remember…” I say, “Anything worth doing is worth doing badly at first!”

Lynn laughs and adds, “I learned to knit when I was twelve. I was terrible at it. Finally, after lots of practice I got the hang of it and it got easier and I got better… but it took a while.” 

I look over and help Lynn with the crochet chain she’s working on. I show her the next step. When I look back over at Amanda’s chain she’s beaming and the stitches are even and loose enough to start her second row. She gets the action of looping back into the chain and practices a few stitches. She’s shaky.

“I’m tired. I’m going to lie down.” Amanda gets up and walks around the table to the shorter couch. She parks her walker and curls up with a well-worn pillow under her head and a chenille throw over her.

“Feeling woozly again?” I ask. “May I show you acupressure points for nausea?” She nods. “I’ll show you on your mom first, OK?” To Lynn, “May I?”

 “Sure, Moose… how do you know all this stuff?”

I move to sit on the floor in front of Lynn and next to Amanda.

Here it comes, I think to myself. At camp we counselors don’t talk much about our personal lives with our campers – unless it comes up organically… it’s all about the kids. Outside camp I’m a yoga teacher and body worker with 25 years experience in many modalities.

I demo on Lynn the points to hold. She holds her own toe and cheek and I question Amanda with my eyes for permission to do it on her. She nods, holding her cheek bone while I hold the only big toe she has.

“It’s my job…” I answer Lynn’s question. “I’m a body worker and trauma specialist. I help folks who’ve had ‘big owies’… like accidents and surgeries.”

“I think so much of Amanda’s stomach trouble is from anxiety…” Lynn begins… 

Turning and speaking directly to Amanda so that she may feel included in the conversation, I say, “Yeah, well… just because you’re anxious doesn’t mean there isn’t good reason to be!” I laugh. 

“Your body is sooo smart it’s always going toward health. When it feels threatened it automatically goes to the Fight/Flight/Freeze responses.” I pause and ask, “How’s the tummy feeling now after holding these points?”

“Better.” She says.

 “One way to slow down fear, which is the root of anxiety, is to notice the sensation of the fear – like constriction or shallow breath, sweating or nausea… Name it.” I say. 

“Describe it in detail to your reptilian brain.” I gesture to the back of my head. 

“That’s where the fight/flight/freeze lives. Then find a place in your body that feels alright and describe those sensations to your reptilian brain,” I continue. “It speaks the language of sensation… like hot/cold, prickly/smooth, constricted/expansive.”

“Nausea definitely feels tight.” Amanda puts her free hand between her ribs.

“And where do you feel less tight?”

“I guess my hands… even though they’re tired my hands feel loose.”

“Cool. Tell that same reptilian brain of yours how you know your hands feel loose…”

“Well… they’re warm and relaxed and… well, comfortable.” We pause to let that sensation register.

“That’s it,” I encourage her as she takes a deep breath, “and how does the tummy feel now? Worse? The Same? Or Better?”

“Better.” She says – with a little more oomph.

“That’s all you have to do to slow down the anxiety… name the truth of how it feels… how you know it is anxiety… and then describe how an easier part of your body feels. Your nervous system begins to understand that right here, right now there’s relative safety.” I pause and she lowers her hand from her cheek bone and I let go of her toe.

“The uncomfortable sensation is like a postcard from the past… your body remembering a time that felt scary. The ease you feel lets you know that right here, right now, you’re OK. It helps that reptilian brain calm down to know: oh, that was then… this is now. Now is relatively safe. No need to prepare for battle or run away.”

We practice moving her attention back and forth between the mid-tummy-nausea and the easier feeling  in her hands a few more times. Then she rests a bit while I support Lynn working on her scarf.

“Moose, will you show me the finger weaving that Bethany got so good at in January?” Amanda asks.

“Sure thing! It’s fun! AND it doesn’t require any hooks or needles… just your hands!”

I think about Bethany and her motivation to keep her hands busy and her thoughts to herself. She was so alone with the secret growing in her belly. I mailed her some yarn, hooks and a book through the camp office. She Face-Booked me a “thank you” and sent photos of her beautiful, tiny baby.

We chit-chat while they practice finger weaving. Lynn is doing really well; Amanda is getting it, but I can tell she’s tired.

“In a minute, not yet, I’m going to go. Do you have any questions for me?”

“Yeah, Moose… how do you save it so you can put it down and come back to it later?”

“What? You don’t want to sleep and shower with it on your hand?” I tease and look around. 

I see something Lynn put on the table.

“Aah… you’ve got this great safety-pin-clasp-thingy… let’s try that.”

Together we lace the giant safety pin through the loops so she can return to the finger weaving when she has more energy. She’s looking peaked. She lays her head back on the pillow. I squeeze her hand.

Bags in hand, I hold out a book to Lynn, which I brought today.

“Lynn, please keep this book for now. You’re both doing great! Maybe we can all meet at Stitch Café in North Hollywood one day soon. It’s so much fun to sit and stitch and….”

There’s a commotion on the couch. Amanda is sitting up facing the back of the couch and gesturing with her arm. In one swift move mama Lynn springs into action. She gets a basin under her daughter’s chin. Poor darling… the nausea is so unpredictable and so forceful.

“Sorry Moose… not a great way to say good-bye.” Amanda is speaking from the couch with her back to me and tissues in her hand.

“Hey, as my mother-in-law used to say… ‘better OUT than IN!’”

She attempts a laugh but wretches again instead. Lynn is walking me swiftly toward the door.

I’m not uncomfortable with what’s going on but I sense they are and I don’t want to intrude. They’re accustomed to this dance. They’re not used to being witnessed.

My mantra as I’m homeward bound is, “I hate cancer. I hate cancer. I hate cancer.” I’m pounding the back of my passenger seat. My eyes are brimming. How unfair this disease is. How brave and spunky this young woman is. How grateful I am to know her and try to empower her to catch hold of her dream to crochet hats. I’m glad we’ve had this time together. 

Amanda and her mom learned some crochet basics and body-work techniques today.  

I witnessed the look, the sound and the feel of courage under fire. 

I’m hooked on hope. I hope their playing field has fewer pot-holes ahead.

(Written in 2010)