“Making Money Off My Son’s Illness”? A response

This post started out quite differently.

I write another blog called Mental Illness in the Family, which appears on HealthyPlace.com, and though I usually keep these blogs separate from each other, I often wonder why.

Today’s post on Healthy Place has to do with a topic I often – sadly – must revisit: relapse, or the return of symptoms. in it, I write:

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities.

Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his

Fellow NAMI Parents at 2013 NamiWalk in CT

Fellow NAMI Parents at 2013 NamiWalk in CT

relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress – but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you’ll ever meet.

Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the “weird kid always singing to the music in his headphones” sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.

In placing links inside this post, I found I had a new review for the book on Amazon. Unfortunately (though I know that, despite mostly 5-star reviews, you can’t please everyone)  this reader wasn’t too happy.

“WAS DISAPPOINTED WITH AUTHOR’S STORY
I HAVE SUCH A SON ALSO…WITH MENATL ILLNESS.
AFTER I READ THAT SHE WAS A CELEBRITY … AND HALF OF THE BOOK IS TAKEN FROM THE NAMI SITE
WHICH I ALREADY BELONG TO – SEEMED LIKE I ALREADY KNOW ALL THIS .. SHE IS JUST MAKING MONEY OFF
OF HER SON’S ILLNESS.”

Now, a big part of me knows not to even respond to a review like this. I also expect that the reader wished I had more answers for her, and that she is as frustrated with schizophrenia as we are.

But I feel I need to say four things in response:

  1. I never claimed to have all the answers. I wish I did have them, believe me.
  2. NAMI is clearly cited as the source for much of my information. Still, to my surprise, many families and professionals that I meet still have never heard of NAMI. So one of my goals for the book was to increase awareness of it. I’m glad you’ve already found that resource.
  3. “Celebrity”? Wow. Simultaneously flattered  - and puzzled. Does being in the public eye (to a rather small extent, in my eyes, otherwise I surely would have been invited to appear on Oprah…) mean that my son’s suffering is any less real? Or my family’s journey?
  4. “Just making money off her son’s illness”? To that I must say: Ha! Ha to that as my motivation, and Ha to that as an income source. I wrote this to increase awareness, refute stigma, inspire change, spark empathy, and to help other families not feel alone. I wrote it for Ben’s courage, and his right to receive better treatment, a chance at a future, and the understanding of others.

Still, I do thank you for the three stars, and I wish you hope, support and love in your family’s journey. I wish my book had been able to give you what you needed from it. Since we are in the same boat, dear reader, I know your road isn’t easy.

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3 comments to “Making Money Off My Son’s Illness”? A response

  • Claire Phillips

    I find as the mother of a daughter with schizophrenia that there is so much I have to learn–and, thankfully, so much that I have learned. Ben Behind His Voices gives such good information and I learned so much from the book. I appreciate Randye Kaye’s ability to put into words the experiences she and Ben and family members had regarding their mental health journey. Wow! That helps all of us. Getting the message out in the open and talking about schizophrenia moves us forward step by step in our journey to de-stigmatize mental illness and encourage hope of recovery!

  • Roberta Burns-Howard

    Read your letter to editor in today’s Ct Post. Good for you! If you need help following through w/ this you can contact me by email.

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