The Writer Who Doesn’t Read

This post is part of ChicagoNow’s monthly Blogapooloza Hour where a writing prompt is given at 9PM and bloggers have one hour to complete a post.  This month’s prompt is:  “Write about something in your life you’ve given up, but that you wish you still did.”

I used to be a reader, but now I’m a writer.  That sentence doesn’t makes any sense, but it’s my truth.  My sad and shameful truth.

A few years ago, wow — it might be ten years now, or even more — I met one of my writing idols at the Printers Row Lit Fest.  Jane Hamilton.  It felt like I was meeting a rock star / celebrity / idol all at once.  She had written some of my favorite novels (The Book of Ruth and A Map of the World among them) and was just so good.  So damn good.

I remember working up the courage to ask a question during the Q and A period after her reading.  I was talking to Jane Hamilton.  Me.  And Her. Talking.  It wasn’t actually a conversation, but, you know, we were communicating.  I made a comment that I wasn’t a writer, but that I was a reader and asked her a question about her process.  Pfft.  Kind of pretentious, but I didn’t care.  She received my question so kindly and remarked that most writers hoped for readers like me.

Afterwards, she signed my copy of The Book of Ruth.  It still sits on my shelf.

Evidence from the not to distant past that I was, in fact, a reader.
Evidence from the not too distant past that I was, in fact, a reader.

Reading was something I was always, always around.  My mother was a voracious reader and worked at the local library.  She literally read a book a day.  Even as a child I was a bit awed by her appetite for books.  My Dad read, too, though less frequently, as he was often trashed from the work day.  His tastes tended towards Irish history, Chicago history, and non-fiction.  Books were valued in our home.  We often took family trips to the library and lingered for a few hours.  I grew up knowing the value of the written word.

Somehow, after my daughter’s cancer, I lost my capacity to read.

I can’t concentrate.  I lose interest.  I feel burdened and overwhelmed by all the words on the pages.  At first, it was books.  Magazines like Vanity Fair and The Atlantic were still in rotation.  Now, even those sit on my bedside table, mocking me while they gather dust.  I am so sick of waking up to Angelina Jolie’s eyes staring at me from across the room every damn morning.  But I refuse to recycle that issue of Vanity Fair because I choose hope.  I choose to believe that someday the ability to read, to escape, to learn from another’s words will come back to me.

The eyes that stare at me, accusingly, every damn morning, "When are you going to actually read me?" Angelina asks, with a smirk in her voice to match the steel of her gaze.
The eyes that stare at me, accusingly, every damn morning, “When are you going to actually read me?” Angelina asks, with a smirk in her voice to match the steel of her gaze.

Do you know what a sham it is to be a writer who doesn’t read?  I feel like a fraud every damn day.

I miss it.  I miss it a lot.

Every six months or so, I pump myself up, head to the Barnes & Noble, and look for the book that will bring me back to the reading fold.  The relationship porn novel that will seduce me and bring me to that place that I neglect my kids because I must keep reading, turning the pages, hungry to learn what happens next.  I want to lose myself in the words.  I want to submit to the knowledge that this book and these characters own me for just a little while.

Yeah, I miss it.

Last month I read a book.  It was good, too, but not so good that I jumped into another one.  Me Before You by Jo Jo Moyes.  Solid relationship porn, which always tended to be my favorite genre.  It was recommended by a few Facebook friends after I made the also bi-annual plaintive wail of “I no longer read, but I have the urge, what do you recommend?”  I was raised by Catholic readers, you see, so I feel the need to confess, clearly, my non-reading ways.

Like right now, I am imagining a huge confessional that hold thousands of you, dear readers, behind a metal cutwork screen.  I enter the tiny, tiny room, and I say to you, “Forgive me, readers, for I have sinned.  It has been 27 months since my last book.”

I miss reading.  I hope it comes back to me.  And fuck you, cancer.  Oh, yeah, and fuck you, too, Angelina.

Modern Day MS: A New Resource for the MS Community

I would be hard pressed to find another person more excited than myself to use a blog platform for a health awareness campaign.  Today, that person just might be my blogging friend, Beth, who writes at Ups and Downs of a Yoga Mom.

Beth is awesome.  A calm island in a sea of blogging chaos.  She is positive, supportive, good natured, generous, and gentle — things I love in friends and bloggers alike.

I was worried for her two years ago when she bravely announced her new diagnosis of Multiple Sclerosis (MS) to her readers.  The symptoms were scary — terrifying, really, for someone with a history and awareness of brain tumors like myself.  Beth approached her MS in her writing with the same calm manner she approached most of her topics.  I choose hope for her.

Two years later, frustrated with the lack of current information and resources she and other folks diagnosed with MS needed, Beth did what Beth does — she opted to create it herself.

The result is her new campaign, Modern Day MS, with a new web site that goes live today, and active profiles on the Facebook and the Twitter.

Modern Day MS

The website is fantastic.  If you or someone you know has an MS diagnosis, head over there directly.  There are links to news stories and resources about the disease, first person accounts of having MS (Beth is very open to guest bloggers, so connect with her if you want to tell your story, too), a Q and A section, and a page dedicated to families and caregivers of someone with MS.  It is a crisp site, easy to use and navigate, and feels like a community as well as a resource.

The tagline for this new venture is “You are not alone,” something that Beth felt herself soon after diagnosis and the days leading up to it. While I’ve never been through a health crisis myself, I’ve cared for family members who have.  The isolation of living with chronic illness is one of the most difficult things to cope with, after the shock of diagnosis wears off.  Not everyone understands how or why a change in health status impacts day-to-day life.

Beth knows this.  And having missed the resources she herself looked for, she went and created it for others in her community.  See, that is what I love about Beth.  So many strong women I know, despite whatever crosses they bear, understand the importance of community and the comfort it brings.

If you have MS, if you know of someone with MS, please look into the Modern Day MS community.  It will help.

 

Brynlee and Ryan’s Story: A Second Chance at Life

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Melissa Davis

“Sometimes being a brother is better than being a superhero. “- Marc Brown.

For our family,, my daughter’s superhero is her brother.

Our daughter, Brynlee was born January 20, 2011.   She was our little miracle. It had taken me two years to get pregnant. I can honestly say I didn’t take a second for granted with her. I was fortunate enough to  be able to take off from work her first year of life. I was there for every first moment — first smile, rolling over, first laugh, first crawl, first food, etc.   I dreamed of all the things we would do together as mother and daughter when Brynlee got older; manicures and pedicures, prom dress shopping, wedding dress shopping, becoming a grandma. I didn’t think I would be able to have anymore children, but to my astonishment, eight months later I was pregnant with another little miracle, our son, Ryan.

Life was nearly perfect.

Then, on August 26, 2013 our nearly perfect life was shattered.  We brought Brynlee to our pediatrician because her eyelids had been swollen and she was sweating at night. Her doctor did bloodwork and 10:30 that night we received a phone call no parent should ever get. We were told to bring Brynlee to the hospital immediately. Her bloodwork was abnormal and it could be leukemia.

I went into shock. It had to be a mistake. Not my baby girl. I remember my husband carrying Brynlee to the car. Tears streaming down my face as I followed, thinking not my beautiful baby girl. I sat in the back of the car with her as my husband drove. I held her hand and stroked her face and hair while singing her back to sleep.  I prayed to God to make it be a mistake.

That night our baby’s innocence was taken away. She was poked more times than I could count as they tried to get a vein for more bloodwork and an IV line. After being in the ER for about three hours, a doctor came into our room to confirm our biggest nightmare, “Your daughter has cancer, but the good news is…” – yes, she said there was good news, “…if she was to get cancer this is the one you want her to get. This was the good kind.  She has the most common and most curable form of leukemia, an 80% cure rate.”

Let me tell you right now, there is NO cancer you want your child to get and there is NO “good” cancer.

We were admitted that night. My dreams of Brynlee’s future fell to the wayside as she began the fight of her life. About two weeks later Brynlee was discharged from the hospital and we were reunited with Ryan. He was so excited to see all of us again. Around that time we also learned that Brynlee had some rare chromosome issue that could cause her leukemia to be resistant to chemo.

On day 29 of treament, every leukemia patient gets a bone marrow biopsy. It is part of the protocol. 95% of children go into remission the first month of treatment and then continue chemotherapy for approximately another 2-3 years.  Unfortunately, Brynlee didn’t go into remission. She failed the induction phase. We couldn’t believe our daughter failed a test.  We joked around that this is the only test she is ever allowed to fail in her life and it better not happen again, but in my mind, all I kept thinking about is what the doctor said the first night. That this was the “good” cancer and now we were receiving more bad news.

Because Brynlee didn’t reach remission she went from high risk to very high risk and would need a bone marrow transplant, but she would need to reach remission first. I couldn’t believe only a month into this and our baby was going to need a transplant. We began the process of looking for a donor. Myself, my husband, and Ryan were all tested.

A few weeks later, the nurse practitioner told us the good news that Ryan was a match. There is a 25% chance of a sibling being a match. Tears of joy streamed down my face. Finally, some good news.  It was better than good, it was amazing. There was a reason God sent Ryan 17 months after Brynlee and we had even saved his cord blood, which the doctors said we would use to spare Ryan surgery. Now all we needed was Brynlee to get into remission.

The next month, Brynlee still wasn’t there. By the fourth month, we were told that we had done all the standard chemo and if she didn’t reach remission our options were running out. Can you believe it? Only four months into treatment and we were running  out of options. Four months of getting bad news when this was the “good” cancer. Brynlee’s second chance at life was right there, waiting for her, yet if she didn’t get into remission we couldn’t do the transplant.

Thankfully, five days before Brynlee’s third birthday we received the news that Brynlee was in remission. I dropped to the floor with such relief and just cried. Our son was going to give our daughter a second chance at life.

Brynlee and Ryan -- connected by blood in more ways than one.
Brynlee and Ryan — connected by blood in more ways than one.

On March 20, 2014, Brynlee received Ryan’s cord blood, but the doctors weren’t confident it had enough cells, so the next day Ryan went to surgery where the doctors took bone marrow directly from his hip area. About three hours later he was walking all over the hospital as if nothing happened.

Today, we are 6 months post transplant. Brynlee is doing very well and we are adjusting to our new “normal.” Brynlee and Ryan will always have a special bond. Neither one of them comprehend how special their bond is, but when they grow up, they will. Ryan has accomplished more in his two years of life than most accomplish in their whole lives.

Superhero Ryan

He will always be our superhero!

September Brynlee2

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And from me, a note of extreme gratitude as we wrap up this 2014 September Series.  Those of us in the childhood cancer community know it is not easy to witness our pain, sadness, and devastation, and we are grateful that hand in hand with those things you also see our hope, our wishes, our efforts to fund research specific to childhood cancer.

If you were moved by these stories, please consider matching the awareness you have now gained with some tangible action.  There are many national and local organizations dedicated to funding research to better understand and treat childhood cancer.  Our family supports the efforts of St. Baldrick’s, the number one funder of pediatric cancer research in America.  On March 28, 2015, we will host our 4th annual shave event in Chicago.  I will post a link as soon as it is live for folks to register to shave or volunteer.  

Other organizations whose work we support is Alex’s Lemonade Stand and Cookies for Kids’ Cancer.  

Thank you, as I say, from the bottom of my broken heart, thank you.