En route to our nation’s capital to join my sister and (finally) bring our book club to a prison there, I watched the sun rise this morning from the Logan Express. Today, six years to the day I was first diagnosed, I was thinking a lot about paradoxes. It wasn't just nerdy English teacher thinking, but rather, an internal conversation spurred by one word that a kind person presented me with yesterday. Bittersweet.
A thoughtful man from the communications department at Dana-Farber wanted my patient perspective for a short publication, and we spoke over the phone for almost an hour. We covered the necessary details of my own treatment but more so, I told him about Kristin and Steve and Dr. Ng. I told him about our Jimmy Fund Walk team, my students, and my family.
Towards the end of our conversation, he asked me if my six-year mark was bittersweet. I have been thinking about that word ever since. Or maybe, about the two words, and the space, or no space, in between. Bitter. And sweet. I thought about that space this morning when I woke Annabel up to put her hair in a ponytail (despite a serious lesson yesterday, she insists Brian won't be able to do it in my absence today). I thought about that word and that space as the dog skipped back to our bed once she realized I was leaving. I thought about it as I drove by the restaurant in Braintree where I first met Marisa.
Now, waiting for my flight to board, I wonder, am I bitter? Actually, yes, I am. Not for myself, of course, but for others. I’m so deeply bitter that cancer is the relentless murderer and thief that it is. I’m bitter that Kristin is not in the passenger seat while her husband and kids travel north for a week of summer vacation. I’m bitter that this winter, Steve will not see his son play hockey nor his daughter play basketball. I’m bitter that the day after tomorrow a surgeon will remove a large tumor from my neighbor’s innocent body. I’m bitter for mothers and fathers who buried their children, for siblings aching for their brothers and sisters, for sons and daughters who no longer can call mom or dad, and for grandbabies who never got to be spoiled by their grandparents. I’m bitter because of the permanence and depth of a loss that I can only barely comprehend. I’m bitter, with deep fibers of my soul, at the enemy that is cancer.
Meanwhile, I don’t identify with the word “survivor” and I don’t feel a sense of victory today or any day. I hate my blog URL because really, I didn’t beat anything. I just got lucky. That’s it. In the words of the poet Wislawa Szymborska, I was closer or farther away (see poem here). Or maybe I survived because I was first or last, maybe because a shadow fell. Really, I have no idea why I’m here six years later and so many others are not. Maybe it was because somewhere a straw was floating on the water.
When I think of today, of six years, one word comes to mind. Humbled. I am humbled today and every day by life and by death. Maybe because of cancer or maybe just because it’s in my blood, I notice with sweet and with bitter detail the love and the loss that surrounds me. This week I am especially aware of those senses because right now, in my town, there is palpable pain.
Like countless others in my hometown and beyond, I remain shocked by the week-old news that a young man – a human being as good as they come – died by accident in a reservoir a mile from my childhood home. Cancer didn’t take Jimmy but water did. Why? No mortal could ever begin to explain it. A frame, a turn, an inch, a second. They are gone and we are here. Straws floating on the water. Full and broken hearts. Contradictions never to be sorted out.
I saw a billboard on the expressway this morning that read, “Real Christians love their enemies.” I can think of no better example of a paradox. But can someone ever love an enemy? If I love my enemy then that enemy is no longer my enemy, so doesn’t the statement swallow itself? Similarly, in this life, does the sweet swallow the bitter or the bitter swallow the sweet? Are we to expect Kristin’s family to cultivate a love for cancer or for Jimmy’s family to ever feel anything but anger and regret when they look out at the rez? That seems offensively absurd.
Rather, it seems to me that as humans, we are forced into a life of incomprehensible contradiction. Of fear that makes the night a ghastly monster, and of hope that somehow clears a passage to breathe when the air seems to have turned solid. Of love that, under the hot summer sun, forms a long orderly line down a small town’s main road, a line leading into a funeral home where a strong and kind 26-year-old rests.
Today feels especially bitter because I can’t shake the injustice of lives lost too soon. I am also especially grateful because soon (God willing) my plane will land, I will see my sister, and we will spend the evening talking about books with a group of men who may enjoy the pages we hand to them. But really, I am once again humbled. I’m humbled by the worry that still haunts me – that I could eat something (a strawberry?), breathe something (air near a turf field?), or do something (use deodorant?) that could cause another tumor to grow. Every day I know that death’s net could catch me or someone I love and, despite my daily anxiety medication, the realization of that vulnerability makes some moments feel unbearable. Indeed, the mesh of death’s net seems ever so arbitrary and suffocatingly cruel. For some reason, I squeaked through the mesh to be blessed with this day. But I will be forever humbled knowing that really, it may just be because somewhere a straw was floating on the water.
Wednesday, August 8, 2018
Wednesday, April 25, 2018
Book by Book
Just before my double mastectomy in 2012, I introduced the blogosphere to my sister, Rachel, in a post entitled, Page by Page.
My sister shares my love of books and, if I'm being honest, reads much more than I do. In the last year, our passion for books met in the most unlikely of places, and we set off on a mission together.
Rachel began working in prisons when she helped two inmates at different facilities (both convicted of nonviolent federal drug distribution crimes) apply for clemency under the Obama Administration. This program was designed to rectify the inconsistency between past and current sentencing guidelines. One of Rachel's two clients, a young father of three, had his sentence reduced by 10 years and was released earlier this month. Her other client, who we will call Joe, was denied clemency and will remain in prison until 2025.
I got to know Joe through Rachel. Rachel would tell me about her client and how much he loved to read, so I sent him some books. He read the books and we would discuss them over the prison email system. I immediately saw that Joe's intellect and passion for reading was something special.
Since Joe loved reading, I assumed he may like writing, too. Turns out he did, and he is great at it. In the last few years, Joe has sent me stacks of lined paper with perfectly printed stories about his life. I've been compiling and editing them, not knowing exactly what will come of the effort. One such excerpt is here:
My infatuation with money began at a very young age. As I reflect back this strong interest was more about the things that money could buy and not the currency itself. Growing up poor and not having things that other kids have and being told by my mother, “I can’t afford to get you certain things,” or, “I don’t have the money right now,” intensified my desire to have money.
I always saw other kids with cool toys, bikes, clothes, and shoes that I knew my mom didn’t have the money to buy me things. The thing I wanted most back then was a new bike. I never had a new bike. All the bikes I ever had were put together from the parts of other stolen bikes. We would use an old frame and take the parts from stolen bike tires, handlebars, seats, pedals, and even the chain. The chain was probably the hardest because you had to find the special link in the chain. Sometimes we would spray paint the frame. We could fix anything on a bike at a very young age. ...
My desire for money started when I was young but grew stronger as I became older. My older cousins and their friends who were teenagers at the time were selling drugs and they would give us a few dollars. I was always fascinated by the large wads of money that they often carried in their pockets. Any time I had a few dollars I would go to the convenience store and get a Thrifty Nickel newspaper. This was a free newspaper with local ads. I would cut the paper in the exact size of a dollar bill and place the real bills on the top of the cut up newspaper to make it look like I had a wad of money like the dope boys had. ...
The dope boys in the neighborhood I grew up in were good people. I know some might find this hard to believe based on how TV and movies portray things in the ghetto. But these were not guys that used kids to do their dirty work. They encouraged us to go to school. They brought all the kids ice cream when the ice cream truck came around. They gave us money for getting good grades on our report cards. I remember our schools would give kids boxes of chocolate candy bars to sell for a dollar each. And at the end of a certain period the people who sold the most candy would win prizes. I remember a brand new bike being one of the prizes. You had to sell a ridiculous amount of candy to win the bike and I never came close. But a few times the dope boys in the neighborhood would buy the entire box of chocolate candy bars and let us have them for ourselves.
My infatuation with money and the things it could buy eventually became an infatuation with the only people I saw with money – drug dealers. My dreams of becoming a lawyer as a young boy was just that to me by the age of 11 or 12. I didn’t know any lawyers or even believe it to be possible by that age.
Less than a year ago, Joe had an idea: a book club for inmates at his prison. He found that he was lending his books to other inmates and they were all talking about what they were reading. He brought the idea to Rachel and they brainstormed. Then they set out to put their ideas into action. They decided they’d need to form a non-profit organization. They wanted to call it “Books Beyond Boundaries.” Joe thought of the name.
When Rachel shared their plans, we quickly realized that their mission aligned perfectly with that of Writing Saves Lives, a non-profit organization that I had created back in 2013 to promote literacy and encourage writing as a form of coping and discovery. And so Rachel, Joe, and I continued to plan.
From prison in the South, Joe arranged for a graphic designer to create a logo for BBB (see below) and brainstormed ideas for book discussions. From Virginia, Rachel arranged for a prison in Joe's area to host BBB for a book club and drafted lesson plans for the two days we would spend there. And from Boston, I did my little part: I used my English-teacher skills to tweak the lessons.
Rachel and I coordinated our trip south. We raised money and were excited to bring something new to the 40 men who had signed up and had the grit to read all 1200 pages of our chosen book: The Way of Kings.
My sister shares my love of books and, if I'm being honest, reads much more than I do. In the last year, our passion for books met in the most unlikely of places, and we set off on a mission together.
Rachel began working in prisons when she helped two inmates at different facilities (both convicted of nonviolent federal drug distribution crimes) apply for clemency under the Obama Administration. This program was designed to rectify the inconsistency between past and current sentencing guidelines. One of Rachel's two clients, a young father of three, had his sentence reduced by 10 years and was released earlier this month. Her other client, who we will call Joe, was denied clemency and will remain in prison until 2025.
I got to know Joe through Rachel. Rachel would tell me about her client and how much he loved to read, so I sent him some books. He read the books and we would discuss them over the prison email system. I immediately saw that Joe's intellect and passion for reading was something special.
Since Joe loved reading, I assumed he may like writing, too. Turns out he did, and he is great at it. In the last few years, Joe has sent me stacks of lined paper with perfectly printed stories about his life. I've been compiling and editing them, not knowing exactly what will come of the effort. One such excerpt is here:
My infatuation with money began at a very young age. As I reflect back this strong interest was more about the things that money could buy and not the currency itself. Growing up poor and not having things that other kids have and being told by my mother, “I can’t afford to get you certain things,” or, “I don’t have the money right now,” intensified my desire to have money.
I always saw other kids with cool toys, bikes, clothes, and shoes that I knew my mom didn’t have the money to buy me things. The thing I wanted most back then was a new bike. I never had a new bike. All the bikes I ever had were put together from the parts of other stolen bikes. We would use an old frame and take the parts from stolen bike tires, handlebars, seats, pedals, and even the chain. The chain was probably the hardest because you had to find the special link in the chain. Sometimes we would spray paint the frame. We could fix anything on a bike at a very young age. ...
My desire for money started when I was young but grew stronger as I became older. My older cousins and their friends who were teenagers at the time were selling drugs and they would give us a few dollars. I was always fascinated by the large wads of money that they often carried in their pockets. Any time I had a few dollars I would go to the convenience store and get a Thrifty Nickel newspaper. This was a free newspaper with local ads. I would cut the paper in the exact size of a dollar bill and place the real bills on the top of the cut up newspaper to make it look like I had a wad of money like the dope boys had. ...
The dope boys in the neighborhood I grew up in were good people. I know some might find this hard to believe based on how TV and movies portray things in the ghetto. But these were not guys that used kids to do their dirty work. They encouraged us to go to school. They brought all the kids ice cream when the ice cream truck came around. They gave us money for getting good grades on our report cards. I remember our schools would give kids boxes of chocolate candy bars to sell for a dollar each. And at the end of a certain period the people who sold the most candy would win prizes. I remember a brand new bike being one of the prizes. You had to sell a ridiculous amount of candy to win the bike and I never came close. But a few times the dope boys in the neighborhood would buy the entire box of chocolate candy bars and let us have them for ourselves.
My infatuation with money and the things it could buy eventually became an infatuation with the only people I saw with money – drug dealers. My dreams of becoming a lawyer as a young boy was just that to me by the age of 11 or 12. I didn’t know any lawyers or even believe it to be possible by that age.
* * *
Less than a year ago, Joe had an idea: a book club for inmates at his prison. He found that he was lending his books to other inmates and they were all talking about what they were reading. He brought the idea to Rachel and they brainstormed. Then they set out to put their ideas into action. They decided they’d need to form a non-profit organization. They wanted to call it “Books Beyond Boundaries.” Joe thought of the name.
When Rachel shared their plans, we quickly realized that their mission aligned perfectly with that of Writing Saves Lives, a non-profit organization that I had created back in 2013 to promote literacy and encourage writing as a form of coping and discovery. And so Rachel, Joe, and I continued to plan.
From prison in the South, Joe arranged for a graphic designer to create a logo for BBB (see below) and brainstormed ideas for book discussions. From Virginia, Rachel arranged for a prison in Joe's area to host BBB for a book club and drafted lesson plans for the two days we would spend there. And from Boston, I did my little part: I used my English-teacher skills to tweak the lessons.
Rachel and I coordinated our trip south. We raised money and were excited to bring something new to the 40 men who had signed up and had the grit to read all 1200 pages of our chosen book: The Way of Kings.
Two days before we were set to fly out, our plan fell apart. The warden cancelled our workshop because he learned that Books Beyond Boundaries was largely Joe's idea and that we had named him a co-founder of the program. The prison explained that it could not "promote any one prisoner's agenda" and starting a book club was seen as Joe's agenda.
Obviously Rachel and I were heartbroken. Rachel did everything to try to get the warden to change his mind but he wouldn't budge. The workshop never happened.
Clearly, it was time for Plan B. When we learned that the men had gotten together on their own to prepare for the workshop (one inmate had even drafted a pre-test for workshop participants), we realized that our physical presence was not totally necessary; the men had already taught each other without us.
To acknowledge the inmates' disappointment (and ours), Rachel then sent individual letters to our readers. She apologized for the cancellation and gave them her email address if they had any questions.
To acknowledge the inmates' disappointment (and ours), Rachel then sent individual letters to our readers. She apologized for the cancellation and gave them her email address if they had any questions.
Last week, Rachel received email after email from these men, including this one:
Good morning and God bless you and your family. My name is --- and I was so happy to hear from you. Thank you for your time and also for believing in me. I also want to thank you because I have never been a reader and you have inspired me and encouraged me to read more and further my education. I really loved the book and I'm not going to lie at first I wanted to give up, but just looking forward to being a part of your book club and simply a part of something positive is what got me through. I was really looking forward to our meeting but it's ok .... Thank you for everything ...
Good morning and God bless you and your family. My name is --- and I was so happy to hear from you. Thank you for your time and also for believing in me. I also want to thank you because I have never been a reader and you have inspired me and encouraged me to read more and further my education. I really loved the book and I'm not going to lie at first I wanted to give up, but just looking forward to being a part of your book club and simply a part of something positive is what got me through. I was really looking forward to our meeting but it's ok .... Thank you for everything ...
And this one:
Hi, I just got your letter yesterday and I really appreciate you taking your time and resources to do a program for prisoners. For some of us, we have little to no outside support so anything that people do that can help us very far and is very much appreciated. I signed up for the book club because I am an avid reader but I was kind of shocked when The Way of Kings showed up. I'm really not into fantasy books and stuff like that so initially was kind of skeptical. However once I forced myself to read it, I found it to be a very good book. I like the leadership lessons and the lessons about thinking, strategy and self control. Especially in the face of conflict. These things can be applied to so many different things but to me as a person thats going back to the free world soon, these things are paramount and thats why these things resonated in me so much.
On the one hand, the emails broke our hearts, but on the other hand, they are one of the most hopeful things we have ever seen.
On the one hand, the emails broke our hearts, but on the other hand, they are one of the most hopeful things we have ever seen.
* * *
Rachel and I grew up surrounded by books. We read them, talked about them, and even as kids, wrote our own. As we grew up, Rachel and I did what we saw people around us do: we went to college and then to graduate school. As Joe grew up, he did what he saw people around him do: he skipped school and started to deal drugs. There but for the grace of God go I. And so we went.
Joe is now working on earning his college degree through a mail program. He loves his classes and meanwhile, he keeps reading. He has creative ideas and inspiring ambitions, and he writes poetry that is so good neither Rachel nor I feel we can adequately provide feedback. He has been in prison for 13 years and will remain there for seven more. Twenty years for non-violent crimes committed when he was in his early 20s. There but for the grace of God go I. And so he went.
Joe won't give up on the book club idea and we won't either. We all still believe that reading and writing save lives. We believe that books can break down boundaries and that conversations about books can change a person.
And so Writing Saves Lives will support the Books Beyond Boundaries program not only by leading in-person workshops in prisons, but also by helping to connect volunteers outside of prison with inmates so that the pairs can discuss books over email. If you would like to be matched to an inmate to read and discuss a book, please visit our website. Because sometimes healing happens page by page and sometimes it happens book by book. There but for the grace of God go I. And so we go.
CLICK HERE to learn more about Books Beyond Boundaries
CLICK HERE to learn more about Books Beyond Boundaries
Sunday, January 14, 2018
My Person
From what I've seen in the last five years, when suddenly faced with a cancer diagnosis or another serious health issue, many patients end up finding their "person." Their person is someone who recently faced the same (or similar) thing and is somehow generous enough to guide another through it. Their person provides advice and comfort like only someone with similar firsthand experience could do. Their person provides hope -- hope that since their person survived it, they will, too. I was so very blessed to have my person. Her name was Kristin.
I know that Kristin was so many things to so many people. She was the loving wife to one of Brian and my dear friends, Corey. She was a mother to two beautiful young children. She was a sister to four siblings, a teacher to countless students, and a friend to so many others who were blessed to know her. She was Peach, Kiki, Hen, Mommy, Kris, and I'm sure many more nicknames I don't even know. I would never attempt to try to sum up the life of this most incredible woman here, and indeed I don't know enough about her to do so. I can only do the smallest thing and tell you about who Kristin was as my person. I realize that it may sound terribly selfish -- to look at her through only my eyes. But these are the only eyes I have. And they are full of tears. So please forgive me if, for now, I attempt nothing more than to see through those tears.
Think about it for just a second ... How many people can you name who have saved your life? I don't mean metaphorically; I mean literally. Well, Kristin is at the top of my list. It is because of my visit with Kristin in August 2012 that I found my tumor. She was going through cancer (for the second time) and when I got home from seeing her, I did my first self-exam and found my tumor. Five days later I was diagnosed with the same type of breast cancer that she had -- triple positive invasive ductal carcinoma. Same stage. Same hospital. Same medicine. Both with husbands who taught social studies in the same department and coached hockey at the same high school. Both with an older little boy and a beautiful baby girl. Both full of hope that if we had our breasts removed and sat through the infusions they told us we needed, we would survive.
Kristin was a teacher -- beginning in Brooklyn, New York and landing in Westwood, Massachusetts. She taught kindergartners and whenever I asked her how she did it, she just laughed and told me she loved those kids. I say the same thing when people ask me how I teach juniors and seniors in high school. It's the best. I love those kids.
Since Kristin was several months ahead of me in her surgeries and treatment, she was also my teacher. She told me what to expect before my bilateral mastectomy. My doctors had warned me that after surgery I wouldn't be able to lift anything, including my arms, and I remember asking Kristin what to do given that Annabel was still in a crib and needed to be lifted out every morning. I don't remember exactly what Kristin said, but I know how she made me feel -- like somehow it would all be okay. And it was.
When it came to chemo, Kristin was also my teacher. Unfortunately, in some ways, she taught me by telling me what she wished she had done differently. When it came to shaving my head before my hair fell out, she recounted how traumatic it was to have Corey shave her head in their kitchen, so thanks to her, I went a different route. A kind and gentle woman from a salon in my town shaved my head on an afternoon I don't remember as traumatic. (I took Kristin to Monique last year when she had to shave her head again.)
When it came to biotherapy -- the Herceptin to be precise -- Kristin kept on teaching me, mostly about resilience. She was dealt blow after blow with that drug -- haunted by heart failure despite that only a small fraction of patients ever experience that side effect. When I was hospitalized during treatment Kristin gave me faith that I would get out and get better. She was right.
On February 13, 2014, Kristin got the devastating news that her breast cancer had returned in her liver. From that day forward, Kristin lived with metastatic disease. I have not experienced that crushing reality and am not qualified to speak about how hard it must be to do so. All I know is that Kristin lived with that cancer in her body for just about four more years despite that her doctors anticipated it would be half that. She didn't start dying that February day, as I had so feared that she would. Instead, Kristin kept hoping. She traveled with friends and family. She raised her family, moved into a new house, celebrated holidays. She was forced to stop teaching but she never lost touch with her students. In the face of the scariest reality, Kristin lived.
All the while, cancer ravaged Kristin's brain and her body, causing her to have seizures and multiple brain surgeries, among many other challenges. Without complaining, she endured. With grace, selflessness, and faith, she endured. With hope, she endured.
All the while, cancer ravaged Kristin's brain and her body, causing her to have seizures and multiple brain surgeries, among many other challenges. Without complaining, she endured. With grace, selflessness, and faith, she endured. With hope, she endured.
On Wednesday January 3, 2018, around 5:20PM, my dear friend Kristin passed away at home in Corey's loving arms. I have written a lot since then, but nothing that I will share in this space. What I've written is raw. It's dripping with anger and tears. It recounts the experience of watching Kristin slowly and ever so peacefully stop breathing. Of listening to the man from the funeral home carry her down the stairs. Of seeing her body for the very last time.
I always asked Kristin before I published anything about her and since I can't do that, I don't feel comfortable sharing such intimate details. But I do wholeheartedly believe that she would be okay with me sharing what she meant to me as my person.
As my person, Kristin taught me how to fight, how to adapt, how to surrender, and how to fight some more. She showed me that despite tremendous personal pain, a person can still be compassionate to others. She taught me that real teachers never stop teaching and that the most important teaching happens through a person's actions. Kristin, my dear sweet person, showed me how a mother can live even when she knows that death is fast-approaching. She showed me that death, while horrifically tragic beyond all measure, also -- for the luckiest -- reveals the purest and deepest forms of love.
I am so angry at cancer for what it did to Kristin and her family. I am so angry at how it stole her soul from her body and left only a skeleton in her bed. I am so angry that it hurts. So sad that my heart feels a heavy physical ache.
There are no words, no last paragraph, to make any of it better. So I'll just end it simply -- with a thank you and with an apology.
First: Kristin, thank you. Thank you for being my person, my friend, and my teacher. Thank you for making me less afraid to live and less afraid to die. Thank you for saving my life.
Finally: Kristin, please know that I'm sorry. So so so deeply sorry that the medicine didn't work for you. That the dozens upon dozens of pill bottles that we emptied into the trash with the hospice nurse didn't help. That your hope for a cure never came to be. That you saved me, but no one could find a way to save you.
I always asked Kristin before I published anything about her and since I can't do that, I don't feel comfortable sharing such intimate details. But I do wholeheartedly believe that she would be okay with me sharing what she meant to me as my person.
As my person, Kristin taught me how to fight, how to adapt, how to surrender, and how to fight some more. She showed me that despite tremendous personal pain, a person can still be compassionate to others. She taught me that real teachers never stop teaching and that the most important teaching happens through a person's actions. Kristin, my dear sweet person, showed me how a mother can live even when she knows that death is fast-approaching. She showed me that death, while horrifically tragic beyond all measure, also -- for the luckiest -- reveals the purest and deepest forms of love.
I am so angry at cancer for what it did to Kristin and her family. I am so angry at how it stole her soul from her body and left only a skeleton in her bed. I am so angry that it hurts. So sad that my heart feels a heavy physical ache.
There are no words, no last paragraph, to make any of it better. So I'll just end it simply -- with a thank you and with an apology.
First: Kristin, thank you. Thank you for being my person, my friend, and my teacher. Thank you for making me less afraid to live and less afraid to die. Thank you for saving my life.
Finally: Kristin, please know that I'm sorry. So so so deeply sorry that the medicine didn't work for you. That the dozens upon dozens of pill bottles that we emptied into the trash with the hospice nurse didn't help. That your hope for a cure never came to be. That you saved me, but no one could find a way to save you.
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