Monday, August 26, 2013

Well, Eff You Too, Famous Charity for Sick Chidren

OK, I should probably never wield a pen (or keyboard) while pissed off. It usually results in something I deeply regret an hour later.

This one I don't think I'm going to regret.

A couple of days ago I read in our local paper about a girl who suffers from a disorder that causes cognitive disabilities. There was no indication that this disorder is progressive or life-threatening but it may be. I have to dig out the article and do some research.

In any case, this child and her family have no doubt suffered quite a bit from living with this disability, and I was thrilled to read that she received a very lovely and generous gift from a charity I will not name here, but whose mission is to comfort children with progressive or life-threatening illnesses.

All good. I felt great reading about that. And then I had a thought: what if this charity we all know about and admire does not simply help children with cancer or other medical diseases that offer very poor prognoses?

What if, through all these years that Benjy has been suffering, his small shoulders bowed under the weight of a sadness so vast I doubt it will be sustainable over a lifetime, we could have appealed to this good charity for something that might have eased his burden just a little and made him smile?

Like that trip to Disney World most of his classmates seemed to have made multiple times? I always had to tell him no, and while it was mostly about money, it was also about Ben's inability to do some of the things that come so naturally to "typical" children. How on earth would he survive the trip and the crowds and the noise and the stares of other children?

There was no way we could make it happen. So again and again I grasped for a way to say it that would not hurt. "I'm sorry, Ben. We can't do it this year. Maybe another year."

I could not keep this horrible thought at bay: Maybe when you are grown up, or pleasegodno, no longer with us.

Anyway, even though Ben is living at his school now, and doing better, my interest was piqued. (Besides, I wasn't born yesterday. I know "better" is usually followed by "helluvalot worse.") I went on the website of this vaunted charity and read up. Turns out your kid does not have to be at death's door to qualify. In fact, many of their recipients go on to live full lives. They just have to have a diagnosis that COULD result in death.


So I wrote a little query to our Massachusetts chapter:

Good evening!

I am wondering whether a child with severe psychiatric disorders (including suicidality) and a history of frequent psych hospitalizations would ever be considered eligible for [your program]? I did not notice anything on your website that addresses the issue of mental illness.

Thank you so much for whatever information you can give me -- and of course for all the wonderful work you do.
Best wishes,

Deborah Vlock
Here's what I heard this morning in return:

Good Afternoon Ms. Vlock,
Thank you for contacting us regarding a child with mental illness.  I am not sure if you are familiar with the mission of Charity X.  We [are concerned with] children between the ages of 2 ½ and 18 with life-threatening medical conditions, that are progressive, degenerative, or malignant.  I am sorry to share that we cannot help you and your family at this time.  If you have any questions, please feel free to contact me...
 OK, great. Awesome. Will you bear with me, Readers, while I exercise my super-duper lit crit skills and parse this response just a little?
The part I'm interested in is the part I bolded -- especially the words "life-threatening," "progressive," "degenerative," and "malignant." Apart from the fact that "progressive" and "degenerative" are pretty much redundant (yes, I can be a language bitch if I choose to), all four of those descriptors -- or at least the first three, and I would make a semantic if not medical case for "malignant, because Holy Cow is this crap malignant -- can and often do apply equally to such conditions as bi-polar disorder, schizophrenia, major depressive disorder, and any other mental illness that induces suicidal impulses in a child.
Let me inform you, Kind Representative of Vaunted Charity, that a child who has a long history of wanting to die, who repeatedly hurts him- or herself, who is on a revolving door into the hospital, has a progressive, degenerative, and life-threatening illness --  except for the lucky ones whose symptoms can be controlled or at least maintained through medication and therapy.
What I would like to ask this well-meaning, but perhaps not so well-educated person, is this:
Why is the misery caused by progressive cancer more worthy of your organization's attention than the misery caused by illness that originates in the brain? And does the non-eligibility of illness that originates in the brain take brain cancer out of the running? Or do you just discriminate against brain diseases that are nebulous and confounding to patients and doctors alike, and whose prognoses are harder to quantify. Illnesses that are not treated with surgery, radiation or chemotherapy, but treated with medications and hospitalizations that may help and may not, and which can wreak no less havoc with a child's body and spirit than chemotherapy drugs?
There is a problem here. It's that people do not understand mental illness as a real illness. And that has GOT to change.
Or else, people believe that every boy or girl (but especially boy) with a psychiatric disorder is going to shoot up a school or a movie theater.
Let me assure you, this is far from the truth. The vast majority of people who suffer from mental illness will hurt themselves before they hurt anyone else. My boy would not hurt the smallest insect, but he has injured himself many times. And many times he has wished he could summon the courage and the resources to end his life altogether. He has even begged me to help him do it.
So, I had this fleeting joy at the thought that there is a charity out there that wants to help kids at risk of dying. Just in case this new school does not work out and Benjy's misery returns to the old endless capacity.
How wonderful, that fleeting hope -- that maybe something could be done to bring him some pleasure in his darkest days.
Boy, what a let-down.
I think it's time to get active. I'm going to arm myself with statistics and get back to these folks. Not just for Benjy, but for all the children in this country whose illnesses are routinely stigmatized and brushed off. Whose suffering is compared negatively to the suffering of those with "medical illnesses" -- and really, I MUST take exception to that distinction, as psychiatric illnesses are very often due to malfunctioning brain chemistry.
So I'm going to get back to them, and if they blow me off I'm going to really get mad.
And then, they'd better watch out. I've been seeking a purpose since Benjy left us and my own medical issues have been keeping me down. Maybe this is it.
I'll let you know if I need your voices, and you can let me know if you're in. I know you will be, Readers.... you've been "in" since you started reading this blog -- and for that I love you.
#forBenjy  #forALLthekidswhoneedhelp


  1. If the vaunted charity you are drafting a response to is in the business of granting "wishes" to ill children, then their Canadian affiliate has granted MANY MANY wishes of Canadian kids with serious psychiatric conditions (depression, anorexia, severe anxiety/PTSD, schizoaffective disorder, etc), i.e. at least half the kids who've had long-term stays (more than a week or two) on the adolescent psych ward of the Hospital for Sick Kids in Toronto. I'm willing to bet that if you called them, asked to speak to a childlife specialist (who are licensed social workers) for the psych unit, they'd be happy to tell you about the wonderful work the "wish" folks do for kids with BRAIN ISSUES THAT ARE NOT CANCER. If you asked really, really nicely, maybe you could even get them to write you a letter saying the Canadian "wish" affiliate has brought joy to the the kids on that particular unit.

    1. *Gasp* Thank you, Stacee, for letting me know! Wow. That's really interesting. I will absolutely check into the Canadian branch -- and the Toronto hospital. You are an angel -- thanks again! I feel like I want to push this as hard as I just seems heartless and unconscionable to hierarchize illnesses that way. What a bunch of B.S. And I honestly believe that in the case of kids with certain psych illnesses, a "wish" granted could even be life saving.

      I'll report how it goes on the blog so stay tuned. Hugs, Deb

    2. I hope it works out! My baby sister had five, maybe six long stints in the adolescent psych unit in high school --- they saved her life. Literally. She'll be 33 this year!

      (Our family didn't get a wish but many of sis's fellow "frequent flyers" did :-)

  2. Ohhhh man!! I hadn't read this until I read your follow-up post. No way. You have every right to be upset. I'm so glad to read Stacee's comment above too. All the best!

    1. Ah, Megan! My role model. ;) Reassurance coming from you is REASSURANCE. Thanks, Grrrl! xo