Ben (lifefromthesmallestroom) began his blog to bring a face to Crohn’s disease, with which he was diagnosed in 2009. He’s incredibly forthright about how life sometimes feels like it’s lived from “the smallest room” now, but his forthrightness isn’t limited to Crohn’s. His thoughts on facing cancer are equally difficult to read and empowering.
Recommended post: Learning Family Values
The Waiting Room
Someone once said, ‘Life is a roller coaster and you’ve just got to ride it.’
I don’t think of it as a roller coaster, but I agree you’ve got to hang on and ride it till the wheels come off, you’re blue in the face and you’re ready to throw up all over yourself.
Life isn’t a roller coaster. Life is a battle.
If there is one thing I know how to do, it is fight.
People call me stubborn, but there is a fine line between being stubborn and being determined, and I see myself as determined.
Cancer has shaped my life. In a way, it’s determined my life course so far. I wouldn’t be the person I am now were it not for cancer.
The first time I met Cancer, I was too young to really understand what it meant. I remember a needle in my arm, feeling sick and having my hair falling out. Apart from feeling like I wanted to throw up, I thought it was funny that my hair was falling out. (I still have that dodgy sense of humour!)
It was only when cancer took my grandmother that I really started to know what Cancer was and how it affected people. I was nine when I was told my grandmother had lung cancer and watched her slowly turn from a happy, semi-active older lady to one that ended up bedridden and uncommunicative in the space of two years.
Over my high school years, I saw two aunts fight cervical cancer and breast cancer and live.
Then it came closer to home again.
In the space of two years, I watched my mum’s hair fall out due to chemotherapy for breast cancer. I laughed when it grew back a totally different colour as she beat it.
I dropped out of university to help care for my stepfather as he was dying from pancreatic cancer, which ended up spreading to his liver, stomach and kidneys, and then sat myself in the oncology waiting room to be told I had testicular cancer. I was 20.
I told no one, not even my closest friends. I shaved my head and told people I was going traveling, when in fact I was going into the hospital for surgery and treatment.
Why? Because I didn’t want to be treated how I saw people with cancer treated—how people walk around on eggshells so they don’t upset you and they whisper in corners thinking you can’t hear them.
To the day my mum and brother died they didn’t know, and many people still don’t.
Over the intervening years I’ve had the pleasure and pain of raising money for cancer charities in the UK. I’ve ran marathons for Cancer Research UK. I’ve abseiled down some of the UK’s tallest buildings and walked across hot coals to raise money for Macmillan Cancer Support, which helps with palliative care, because in my stepfather’s final days they gave me the support I needed to help care for him.
Over the years, I figure I’ve raised around £40,000/EUR49,000/US$65,935, but that still doesn’t relieve that guilt that I’ve survived while those I’ve been closest to died from it. I don’t expect it ever will . . . .
Having cancer has made me determined and more than likely a little stubborn. I know that sometimes this makes people angry, but I live each day as if it’s my last given that one never knows when it could come back.
Three years ago, I was diagnosed with Crohn’s Colitis, an auto-immune gastrointestinal condition for which there is no known pharmaceutical or surgical cure. In a strange sort of way, dealing with cancer has enabled me to deal with this condition. It’s showed me to live for the good days, and at the moment I’m having good days . . . even though I’m again spending time in the oncologist’s waiting room.
“People are like stained glass windows; they sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light within.”
— Dr. Elizabeth Kubler-Ross
Many years ago, my brother asked me to picture a mutual friend of ours.
After I had her image firmly in mind, David asked, “Do you see her scars?”
I did not. Her face had seemed perfectly reconstructed in my mind before he asked; in light of his question, I felt ashamed, as if I’d been caught in the act of surreptitiously editing a work not my own.
My brother’s take was different. “You don’t picture it for the same reason you don’t really see it when you’re with her. It’s irrelevant. Her beauty shines from within, not from the specific arrangement of features on her face.”
The conversation was much more extensive than this, and my brother’s overall approach much more nuanced, but this is the part that has stuck with me. It was the part on my mind after I shaved my head for St. Baldrick’s last month.
I expected to be a wreck during the actual shaving. I also expected to be mildly chagrined by how baldness emphasized my already prominent forehead. What I didn’t expect was that I’d feel more beautiful than I ever had before.
I also didn’t expect the staring.
The day after I shaved my head, I caught a couple dozen—yes, a couple dozen—adults staring at me with eyes wide and mouths agape. I felt confident and gorgeous with my newly fuzzy head, so it was easy for me to smile back at strangers even while my discomfiture grew.
I wondered: What if I had lost my hair to cancer treatments? What if I were struggling to feel beautiful and strong in the face of the fight of my life? A fight for my life?
My stomach knotted at these thoughts, yet despite my initial chagrin, I quickly stopped noticing the stares. I even forgot that I’d shaved my head. A neighbor asked, “What did you do?!” following which I launched into an explanation about how she’d heard my son, Li’l D, screaming because I’d forced him to get off the elevator. (The nerve!)
My neighbor gestured to my hair and said, “I mean, to your hair!”
I laughed and said I’d had it shaved for a charity. With her hand to her heart, my neighbor said, “Thank God. I thought you were going through chemo.”
Once in a while, though, someone’s attention is so obvious it’s impossible not to notice. In these cases, I’ve continued my strategy of simply smiling back, an astonishingly effective means to get someone to stop staring.
Out to get lunch in the middle of a recent workday, I caught a woman staring at me with a mixture of sadness, dismay and pity so blatant, it totally disarmed me.
After a moment, I smiled at her and she looked away. For about two seconds. She then resumed staring, looking away again for only as long as I gazed and smiled directly at her.
The scenario played through my head for hours afterward. I wished I’d piped up, as recommended by blogger Counting Caballeros, “Thank you for staring. I shaved my head to raise awareness for childhood cancer, and since I obviously have your undivided attention, would you like your donation to pediatric cancer research to be cash, check, or charge?”
I don’t know what it’s like to fight cancer firsthand. I don’t know what that encounter would have felt like if I were fighting cancer right now. All I have is my imagination, and in my imagination, the feeling was horrible.
The feeling wasn’t about the hair. It was about what hair, or the lack of it, seemed to automatically represent: the presence of illness. The reminder of human mortality.
I felt an invisible wall of “otherness” being built around me as I recalled the emotions reflected in that stare, and those I witnessed right after I shaved my head.
I wondered: Would I be so different if I were fighting cancer? Would I somehow be less human, or less worthy of the common courtesies afforded someone with a full head of hair? Or would I still be me, Deb, just trying to enjoy a bite of lunch without being reminded that I’m not only fighting cancer but that I’m also now set apart in the eyes of those around me?
I can’t go back in time. I can’t redo that lunchtime encounter. But the next time I experience this, I’m going to say something. I don’t know what, exactly, or if it will be inspired by the above recommendation from Counting Caballeros, but something. Something that reminds others that I am human. That we are all human, whether tall or short, skinny or round, black or white, bald or hairy, fighting cancer or cancer-free.
And now, here, I’m going to ask you to say something if you find yourself caught in the act of staring. If you’re curious, or concerned, or just want to say, “I’m sorry, but you’re so radiant, it’s impossible to look elsewhere,” please do. Say hi. Embrace the awkwardness, for words like these connect even as they potentially embarrass us. Instead of building invisible walls between people, they are part of our building bridges of understanding.
I’m glad my neighbor asked what happened to my hair. Her words opened a dialog that brightened my day. In both asking and the way she asked, I felt that no answer I gave would’ve scared her or inspired her to treat me differently, apart from perhaps to share words of support.
If the thought of talking to a stranger terrifies you, consider offering a smile. The power of a smile is enormous.
It’s that smile that shows the light within, and all those beautiful lights within reflected outward that brighten the world for all.
© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.
Growing up, four out of seven people I perceived as family shared blood with me, but three did not.
When my sister’s high school boyfriend came to feel more like a brother than “my sister’s boyfriend,” my family-member scale was balanced numerically between those of blood and those strictly of love.
The scale hung in the balance for only a brief while. Soon enough, my new brother’s mom became family, too, confirming to me what I’d suspected all along: blood didn’t make family.
Sure, my parents seemed to feel bound to the other kind of family, but in my mind, those biological families had little to do with my own family.
Most of the time, I had no desire for more family. I figured I was abundantly blessed with what I had.
Occasionally I’d find myself wistful, but never wistful enough that I let wishful thinking rule over circumstance.
When a Monster in Your Closet reader, Katrina, mentioned in February that she’d be visiting Disneyland in April, I noted her middle name–my mother’s maiden name–and state of residence and figured we probably had an ancestor in common somewhere. I said as much to my honey, Anthony, but was otherwise focused on the thrill of meeting up with an online friend in person.
The day before Katrina and I met up, I got a short Facebook message from her. Her husband, she wrote, had suggested she should make sure I knew our relationship.
Namely, that we were cousins.
I wrote back instantly to ask the specific connection, though there was really only one option. I then called Anthony, crying with joy I couldn’t explain.
When I looked at Katrina’s profile picture, it was like looking at a younger version of my mom.
The next day, Katrina, her family and I met for lunch at Disneyland.
As I waked back to my car a little while later, I wrote this on my phone:
The next evening, I brought my son, Li’l D, to the park. We spent a couple of hours wandering and taking DCA (Disney California Adventure) kiddie rides with my cousin and her family. When Li’l D refused to ride any animal on the carousel, Katrina took the bench with him while I held her son.
One word replayed over and over in my mind: family.
Watching Katrina’s kids not only play with but instruct and tend to Li’l D filled me with wonder. I’d had many a fun Disneyland trip together, but never one so merry as this!
Heading out of DCA, Li’l D alternately shrieked with glee while darting between my cousin’s sweet, spirited children and dance-walked to the music, occasionally stopping without notice and jamming foot traffic.
“You’re so weird!” one of the kids said to Li’l D with a kindly laugh that inspired my own.
I would bet you just about anything that’s how my siblings and I sounded when we visited Disneyland two and a half decades prior!
When we parted ways a couple of minutes later, I was reluctant to leave. I only did so knowing Li’l D would soon enter meltdown territory if we didn’t. And that family wouldn’t end just because the evening did.
Today, Li’l D and I went back to the park solo. There was much laughter, and much messy enjoyment of ice cream.
There was something else, too: a sense of connection, as we strolled hand in hand, not just to each other, but to the little Deborah who’d once held hands with her own mom at the park, and to the new generation, whose interwoven hands and hearts might reach so much further together than they ever could apart.
This was among posts accidentally deleted from this blog.
Mackenzie (Brights Strange Things) means many things to me: late nights listening to Gary Jules and Common Rotation at the Hotel Cafe. Long drives up and down the Pacific Coast Highway in which we talked about everything under the sun. Improvised text message verses to the Common Rotation song “Fortunate.” Awesome book covers for my novels. The goodness of knowing–through having been there and done that, countless times over–I can safely tell her anything without her thinking less or more of me because she already sees and loves me exactly as I am.
It’s been eight years since we lived in the same town and a year since our last visit, but Mack is an ever-present feeling of love in my heart. I think you’ll see why as you read her words below.
Recommended post: Born to Be Free
The Pogues and Parcheesi and afternoon strolls through IKEA
There are many things which have come easily to me, in the course of my life. I took pretty effortlessly to drawing things, and writing, and getting through school with an absolute bare minimum of effort, and I am also, for the record, pretty good at knitting potholders. Things that I am not so much good at include talking, telephones, arguments, coping with ghastly color schemes, and anything to do with relationships of any kind.
It’s not like I was a feral child raised by particularly unsociable dingoes, but it is fair to say that my family could’ve formed our own local chapter of Hermits United. During my formative years, when my classmates were learning how to strengthen or destroy friendships, fomenting drama amongst themselves, and taking every opportunity to practice their fornicating (I’m rather sad I missed out on that part), I was lost in my own mental worlds, for the most part content to completely avoid any sort of human interaction. I had a few friends, certainly, and was on good terms with pretty much my entire graduating class, but I had made a strong and early habit of keeping everyone at arm’s length. I also had what I then would’ve called “quirks” and my mom called “moodiness” which I now would probably classify as an amount of anxiety verging on clinical disorder. These and other factors are why, when I decided to move away from home and across the country after high school, things did not always go well.
It wasn’t that I was stupid. It was just that I was about as well-equipped for independent adult life as a penguin is equipped to survive in Death Valley.
Luckily, I had T. T was my first roommate, and probably my first truly close friend. T is older than I am, and to say that her experience of the world is somewhat broader is a vast understatement. She was well traveled and had gone to college and for some reason random strangers really liked to just walk up and talk to her, whereas I’d never even eaten at a real Mexican restaurant. T invited me to parties, towed me along to dinners, got me out of the apartment and generally did her best to socialize me. It was a fairly thankless job. I was walking social strychnine and I wasn’t always easy to live with, either. I was largely oblivious to everything from basic social cues to table manners to flatsharing etiquette. And yet, somehow, even at her most exasperated, T managed to gently cajole me toward adulthood without making me feel like I couldn’t also be myself.
When Deborah started this guest post series on thankfulness and gratitude, and asked me if I’d be interested in writing something, I thought of T first. Although we’d lost touch over the years, I still thought of her often, and by crazy random happenstance, right around the time I started writing this post, T tracked me down and got in touch again. I was delighted to hear from her, though everything I’ve had to say seems inadequate while “you’re my hero” kind of sounds like an invitation for a restraining order. Hopefully she still knows me well enough to know that if this blog is the best I can do for love letter and apology, that it’s only because I’m still a little emotionally stunted.
In those years of relative silence I’d often contemplated writing T to tell her how much she changed my life, and that I couldn’t think of a single thing I was more intensely grateful for than the friendship that she — and her own very gracious friends — had extended to me at a time when I needed it most, when things could’ve gone either way, when my choices really were to join the human race or to shut myself away from it. The changes she began laid the foundations for the person I became and am in the process of becoming. Because of T, I began to learn the tentative skills that helped me build all of the friendships that came after. And each of those people has also helped to shape me as a person in large and small ways. I carry some little piece of each of them with me, in the form of a memory, a song, a moment, a lesson, a turn of phrase, a regret, an old pain, a fresh joy.
So when you ask what I’m thankful for, I’ll tell you that I’m thankful for friendship and the way it grows, taking root in each part of a person and holding the center together. I’m thankful for The Pogues and Parcheesi and afternoon strolls through IKEA. I’m thankful for sweet potato fries, Hard Core Logo and impromptu cooking lessons. I’m thankful for cold drinks on the deck and a quiet conversation in the hay loft and messages from people who are half a world away but still so close by. I’m thankful for crashing on couches and laughing so hard I couldn’t breathe and knowing what it feels like to miss somebody when they aren’t there. I’m thankful for long meandering conversations from the driver’s seat and the crush of a crowded club and feeling that I can say anything, anything at all, and still be loved, always be loved, because there is no end to a thing that becomes a part of you.
I’m thankful for every minute of every day that another human being, motivated by nothing but kindness and love and camaraderie, reminds me that the only way to fail at life is choosing not to live it.
Katy (k8did)’s a teacher and nurse,
Full up of compassion.
She also writes verse
I’ve got no hope of matchin’.
Her blog’s oft good for a giggle,
A dream, and a sigh;
Others, you’ll sniffle,
And think, “What a guy.”
The poem’s k8’s realm,
And I h8 to defile it!
So I’ll hand her the helm,
At least for a bit.
Recommended post: Give up the peanut butter cup and nobody gets hurt
A Poem, if You Please – I am Thankful for These
A hug before sleep
Awaken to a kiss
Without a doubt
I am thankful for this.
Trust in my marriage
Strength from each other
I’m so thankful that
We have one another.
Sons raised and launched
With kids of their own
My hardest work – done!!
Such joy I have known.
The body I complain about
It’s fluffy – not fat!!!
Is sturdy and strong
And I’m thankful for that.
My home, solid and cozy
Filled with laughter and love
I’m so grateful to be
A proud owner of.
Five healthy grandkids
Whose hugs I adore
Their pure child-love
I am so thankful for.
Work that I love
Where I stretch and I grow
I’m more grateful for
Than you’ll ever know.
Good friends I have made
Both virtual and real
I’m so thankful that
They understand what I feel.
Sisters who love me and
Always have my back
My heart fills with love
No gratitude I lack.
A dog true and faithful
Whose love knows no bounds
I am thankful for Shelby,
The most loving of hounds.
Writers and readers
Hours of pure blogging bliss
Enriching my life
And I’m thankful for this.
My life’s filled with blessings
Of that there is no doubt
My heart’s full of gratitude
My thanks I do shout.
May I always know what I have
And carefully tend to my gifts
In pure gratitude and joy
My thankful voice lifts.
last: The Strongest Woman I Know | The Waiting Room (4/27/12) : next
The newest (and tastiest!) approach to parenting
Before I was a parent, I had certain ideas about parenting. “I’ll definitely do this,” I’d tell myself. “And I’ll never, ever do that!”
Then I became a parent.
With so many debates raging about proper parenting, I assumed parenting would be . . . different. You could even say I envisioned it being complicated. Unwieldy.
Turns out it’s a little bit messy, but certainly not hard!
If you excel at parenting (like me), you undoubtedly read those four types and wondered, “Where’s the fifth?”
The fifth style, “RPBC,” reflects a much more nuanced and sophisticated approach to parenting. It acknowledges that each of the other styles has its merits, but that they all work better in complement to each other. And with a hefty dose of Reese’s Peanut Butter Cups.
Why limit yourself to any one of the other styles when you can pick and choose as circumstances necessitate?
RPBC authoritarian: YOU DO NOT GET PEANUT BUTTER CUPS, BECAUSE I SAID SO.
RPBC authoritative: I trust you understand why I’m withholding peanut butter cups from you.
RPBC permissive: Oh, sweetie. It’s okay that you wrecked the neighbor’s car. You know what helps me feel better when I do stuff like that? That’s right. Third drawer on the left.
RPBC uninvolved: [silent as to location of the peanut butter cups]
When my son, Li’l D, has been good, I like to reward his behavior with a peanut butter cup. If he’s been really, really good, I’ll offer him nineteen or twenty.
If the sugar makes him a little wild and he does something displeasing, I tend to take a firm no-peanut-butter-cup stance with him. “Li’l D, I would have given you another peanut butter cup, but Daddy’s going to miss his computer now that you’ve thrown it over the balcony!”
I say “tend to” because the RPBC parenting style affords the busy parent—and aren’t we all busy?—the ultimate in flexibility. There’s no situation that can’t be resolved with the proper application or withholding of peanut butter cups.
You’ll have to sort out the exact balance for yourself, but there’s even more good news here: you can’t get it wrong!
The RPBC never judges. Not even when you eat it.
Try competing with that, other parenting styles!
© 2012 Deborah Bryan. All rights reserved.
Duplication in whole or substantial portion is explicitly forbidden.
*** TODAY’S SPECIAL ***
On this historic day, otherwise known as Wednesday, 19 of your favorite humor bloggers are staging a WordPress coup. We have banded together to address the important topic, Better Living Through Reese’s Peanut Butter Cups.
Yes, you read that right. Your eyes are fine. Well, they may not be fine – I really don’t know. But it does say “19 of your favorite humor bloggers” (or who SHOULD be your favorite bloggers). We are all presenting the same topic, each from his or her particularly unique perspective.
Why this topic? Why now?
Click on the Reese’s Pieces link to gobble up the entire, yummy bag of 19 posts.
The Big Sheep Blog ☺ Childhood Relived ☺ Go Guilty Pleasures ☺ Fifty Four and A Half
Fix It Or Deal ☺ Play 101 ☺ k8edid ☺ Lenore’s Thoughts Exactly ☺ Life In The Boomer Lane
Peg-o-Leg’s Ramblings ☺ Refrigerator Magnate ☺ Running From Hell With El
She’s A Maineiac ☺ The Byronic Man ☺ The Good Greatsby ☺ The Monster In Your Closet
The Ramblings ☺ Thoughts Appear’s Blog ☺ Unlikely Explanations