This post is part of ChicagoNow’s monthly ‘Blogapalooza’ series where bloggers are provided a writing prompt and given 60 minutes to publish a post about it. This month’s writing prompt is: “Write about a decision you made that changed the course of your life, for better or worse.”
This one is easy for me. I remember back in 2011 when my return to the work force after leaving to care for my girl coincided with my decision to start my first blog over on Tumblr. I was adamant I was not going to write about cancer or grief. Pffft. We all know how that turned out.
A couple of months into it, a friend who worked at the Chicago Tribune encouraged me to move my teeny tiny Mary Tyler Mom blog over to the ChicagoNow blogging network. I liked the idea, found it intriguing, but had a few reservations. Would I maintain creative control over Mary Tyler Mom? Would ChicagoNow own my words moving forward? Would I be able to write more than once a week and still have something interesting to say?
I was curious enough to pitch my blog and the community manager there (yo, Jimmy!) responded to it quickly and enthusiastically. It was time for me to decide — would I move my little blog over to the big network?
I dithered, as Libras are wont to do. I imagined the worst and made the decision way more complicated than it needed to be. Choosing to blog on the ChicagoNow platform has literally changed my life, and only in positive ways.
After a few months at ChicagoNow working to find my audience and trying on different writing styles — was I snarky? hip? sarcastic?, I eventually made another decision to come out of the grief closet and reveal to my few but growing number of readers that I was a grieving mom. I introduced Donna and was warmly, fully, and completely embraced by you all Internet folks.
It turns out that moving my blog to ChicagoNow was one of the best decisions I have ever made.
Telling Donna’s story in serial format in September 2011 turned me into a writer.
Sharing the beauty and joy and sorrow and brutality of childhood cancer created an army of new advocates wanting to address the funding disparity that exists between adult and pediatric cancers.
In the past six years, between Donna’s Good Things and St. Baldrick’s, and Lurie Children’s Hospital of Chicago, almost a million dollars has been donated by people who have been exposed to Donna’s Cancer Story and were moved to help in a tangible way.
I have met amazing, incredible, generous, and talented bloggers from all walks of life that have enriched me in so many ways and who I now get to call my friends.
My blog posts have sparked enough conversation to get featured on Huffington Post, Fox Business Network, and NPR. For someone who considers herself an out of work social worker, that always tickles me.
Writing the story of Donna turned into telling her story on stage and now my own story at local storytelling events.
I authored an essay in an honest to goodness book, yo! Hardcover and everything. And it was published just a few weeks before my Dad died, and I will always and forever have the memory of reading him my essay in an ER room while holding his hand. You can buy that sucker HERE.
When I got a little bored and fidgety writing only about parenting issues, folks still bothered to read me when I wrote about gun violence, public education, aging parents, health care, politics, and race.
I started writing for hard, cold cash. People actually pay me $ now for me to write words. How crazy is that?
There is a Peter Lisagor journalism award with my name on it for writing this post.
You are here, reading my words.
Honestly, folks, I could go on and on and on about how writing Mary Tyler Mom has changed my life. But it’s after 10, so I am already late for my one hour Blogapalooza time limit. Long story short, deciding to write a little blog I named Mary Tyler Mom and moving it to ChicagoNow has changed my life. Humbled and grateful, always. xox, MTM
Health care. Unless you live in a cave without wifi, you’ve heard the familiar rumblings of our elected officials holding the fate of every American citizen in their hands while they decide what to do about it. I have a lot of thoughts about how something that impacts so many could be determined by thirteen white men in DC (and, yes, the fact that they are white men is relevant and worth noting), a lot of thoughts, but instead, I will share the story of my daughter being a Medicaid recipient.
Once upon a time, March 23, 2007 to be precise, my not quite two year old daughter Donna was diagnosed with a brain tumor. My husband and I both worked at the time, he at a job he had been at for five years and me at a job I had been at for nine years. I was thrilled to be able to transition to part-time hours after my girl was born and felt lucky most every day. Our family benefited from generous employer provided benefits.
I needed to exit my position when it became clear that the care our girl would require would prevent me from being available to work on any consistent basis. After diagnosis and her initial surgery to remove the tumor, our girl relapsed six weeks later. That resulted in another hastily scheduled brain surgery and the need for chemotherapy that would require hospital stays of 3-7 days twice monthy for an unspecified time. We needed to tighten our belts a bit, but we could and did.
Many cancers are understood adequately enough to follow a treatment protocol. If you have a boy with leukemia, you know that he will be in treatment for three to three and a half years. A dear friend who cares for a daughter with a brain tumor learned a couple of years post diagnosis that her girl would need to receive a new regimen of chemotherapy once a week for 52 weeks. Now, none of these protocol are set in stone, as at any time, something could happen that would require changes — the cancer could return, metasticize, infection could set in, the chemo could stop working.
For the cancer my daughter had, papillary meningioma, no such treatment protocol exists. Not enough research has been done to understand it — actually, nothing more than anecdotal studies have been published about this particular type of brain cancer and no research or funds are devoted to better understanding it. As the docs explained, that was both good and bad. Bad because, well, there was no plan, and good because, well, they could try what they had and hope for the best, as nothing out there suggested it would not work. Donna’s doctors chose hope and we did, too.
Initially, Donna’s cancer responded to treatment incredibly well. Lesions in her lungs were erased (Donna’s cancer had metasticized) and there was no sign of any returning tumor growth in her brain. The joy and relief we felt compensated for the days of suffering Donna experienced using a chemo cocktail an oncologist friend described as a “sledgehammer.”
Each cycle required a five day inpatient stay followed by discharge to home followed by the onset of neutropenia followed by a second monthly hospitalization for IV antibiotics to combat any chance of infection setting in and wreaking havoc. Two weeks of the month were spent inpatient, one week spent post-chemo feeling like hell, and one blessed week a month where we could enjoy relative good health and engage in things two year olds like to do — parks, zoo, playing outside.
We did this for six months, not knowing month to month if we would keep doing it, as we never knew if it would stop working or if it would become too toxic. After six months it did. Donna’s kidneys began to fail, hit particularly hard by the chemo. The treatment team advised she stop the protocol, extract healthy cells via harvest, then have a stem cell transplant (or two, depending on whether or not she survived the first, and no, I am not joking) to provide what they hoped would be the final blow to her cancer.
A stem cell transplant is to chemo what a marathon is to a 5K.
Donna during her stem cell harvest in 10/2007.
All of this happened prior to the Affordable Care Act and an Obama presidency. My husband and I, despite being grateful for the insurance we had, were running a silent tally in our heads. Each hospital stay came with a mental $ CA-CHING $ echoing in our heads. Each home health visit to access her port, each surgery, each pink plastic bowl used to catch toxic vomit was adding up. It was a pressure we lived with but didn’t share. The health of our girl was consuming, so we back-burnered the worry of Donna’s $2 million lifetime insurance cap, but knew we were inching closer to it every day.
In a collective fog, we marched towards Donna’s stem cell transplant, only to come to a screeching halt when it was denied by our insurance carrier. In December of 2007 our family was lucky enough to live in a state and in a time that insurance was mandated for children. When our employer provided insurance denied the recommended stem cell transplant and then denied our appeal, the hospital suggested we apply for Medicaid for Donna under Illinois’ All Kids program. They walked our upper middle class, naive selves through the process.
Each month a little slip of paper came in the mail that allowed Donna to access her oncologist recommended treatment. It was her Medicaid slip that held the particular sequence of letters and numbers that acted as a key to her potential health and well being. It was used exclusively during the time of her stem cell transplant and recovery, as our insurer made clear nothing related to a stem cell transplant would be eligible for coverage.
Donna’s single stem cell transplant cost well over $600K. We were grateful that Medicaid covered the transplant for a couple of reasons — 1) simply because it would be paid for without us losing our home or financial stability, and 2) because that $600K+ would have taken Donna dangerously close to her $2 million lifetime insurance cap. The short period that Donna was on Medicaid acted as a reprieve to our worries about Donna maxing out her lifetime insurance cap before reaching the age of three.
I remember the day the Affordable Care Act passed and the day the Supreme Court upheld it. While it no longer impacted our girl who died before it was passed, I celebrated for the hundreds of children and families I knew who lived with pediatric cancer and its devastating impact, both emotional and financial. I celebrated that these kids lucky enough to survive their cancer could never, ever again be denied for having had the misfortune of having a pre-existing condition. I celebrated that they would be allowed to enjoy their parent’s insurance coverage until age 26. I celebrated that they would be relieved of the burden of a lifetime cap. These are good, important measures for quality of life that have nothing to do with whether you vote red or blue.
While Vice President Pence extols the virtues of “personal responsibility” and Kellyanne Conway advises people to get a job with employer provided benefits rather than rely on Medicaid, too many Americans know the reality of why that approach to health care does not scratch the surface of reality. That approach deems to separate the “deserving” poor from the “undeserving” poor. That approach does not take into account the reality of average Americans living with catastrophic illness, working jobs that do not provide a living wage, let alone health benefits, or the often random nature of illness, unemployment, and falling on hard times. My upper middle class, white lady, married, respectable, employed self needed and benefited from Medicaid when it covered our daughter after our for profit insurer denied her.
We are at the cusp of moving backwards on health care in America, dangling over a proverbial cliff that will put so many fellow Americans in harm’s way. Medicaid benefits vulnerable people that you know and love — parents and grandparents in nursing homes, veterans, children, 50% of every baby born here, people living with mental illness, people living with addiction, people living with catastrophic illness not covered by their insurance. You may never have used Medicaid yourself, but you can never claim you will never need it because, well, life.
Call your senators. Today. Now. You can find their number HERE. Tell them Donna sent you.
Maybe you’ve seen the shaky phone videos pop up in your Twitter and Facebook feeds, or you’ve heard folks talking about them in the office kitchen — evidence of white folks behaving badly. Really badly. Like truly despicably. They are all the rage in this age of America reclaiming its greatness.
It feels to me that hate has come out of the closet. People are feeling emboldened and justified in spewing their ugliness, tossing it around like confetti at a parade. It makes my stomach turn. I miss the days when folks knew enough to hide their hate and censure themselves.
Over the weekend a Facebook friend posted about this exchange she had while running into her local 7-11:
See, now, this ain’t right. None of this is right or okay or acceptable in any way, shape, or form. And I think it is happening more and more. Somehow presidential politics has opened up Pandora’s box of hate and it shows no signs of closing anytime soon.
Full disclosure, I have wondered more than once what I might do if I saw something like this happen in front of me. Would I whip out my phone, record the hate, then use my platform to shame the person? Would I avert my eyes and go about my business, embarrassed and ashamed about what just happened? Would I reach out to the victim of the assault? Would I find my nearest soap box, hop on it, and exclaim, loud and proud, that hate and bigotry are unacceptable?
What I love about Tyra’s suggestion about how to address racist behaviors in your presence, is that it requires action and participation. It’s not enough to think racism is wrong. It’s not enough to not engage in overt acts of racism yourself. It’s not enough to apologize and sympathize with those being targeted. Say something. Do something. Own that shit. “Racists should feel uncomfortable, not the rest of us,” says Tyra. She’s right.
And check your own prejudices. Tyra points out that the racist man who called her a “n-gger b-tch” was not a “hillbilly confederate” rolling coal in his American made pick-up with a southern flag waving behind him and a wad of tobacco in his cheek. Nope. This was a middle-aged dad and his young daughter, well dressed, white, and driving a late model SUV in 2017 Chicago. Not exactly the first stereotype of a racist that comes to mind. Hate is everywhere, folks.
The advice Tyra gives is to reclaim the space around hate. Call it out. Make it clear that hate and bigotry are not acceptable. Tyra wants us to “Require [racists] to be better people.” I don’t know if that is possible, but it is possible to put a light on hate and state clearly, loudly, openly, and without shame or fear, that hate and bigotry have no place in our presence.
And, as a white gal, I want to say this so other white folks get it. Racism is our problem to solve. White people need to take ownership of racism and how it impacts all of us in ways big and small, overt and covert. We need to listen, see, absorb, and acknowledge. We need to understand how we benefit and have benefited from racist systems, practices, and institutions. Real estate, public education, the criminal justice system, and our health care system are perpetrators of racism just as much as that white dude with his daughter and his SUV calling Tyra a “n-gger b-tch” was.
Tyra presents a challenge when you see someone acting overtly racist — see it, acknowledge it, own it, feel a responsibility to change it. And I would suggest that we don’t have to wait for some hating, SUV driving, mouthy, bigoted dad to spout off before we start, because racism is all around us all the time. Own that shit.
Mary Tyler Mom 