Home | The Disease | The Beginning | The Diagnosis | The Children | The Medication | The Question | The Insomnia | The Face | The Body Language | The Letter | The Message | The Pregnancy | The Gift | The Pilates | The Infomercial | The Weight Loss | The Toddler | The Mess | Lauren Sue's Links
Personal Reflections...
The Letter

when my daughter's homework really hits home...

A letter I wrote to Michael J. Fox after a sentence on my daughter's homework made me realize even schools needed an education:

Dear Michael J. Fox,

 

A few weeks ago, my daughter was doing her homework for her 9th grade English class when she brought something to my attention that she found on the assigned Xeroxed sheet.  The assignment involved 20 fill-in-the-blanks questions using her vocabulary list.  Both of us were upset by question #20.  The sentence read:

“Michael J. Fox is not yet an invalid but he suffers from a disease he knows will soon leave him in a helpless state.”

My daughter was quite upset by this sentence. When she showed it to me, I told her that I wanted to contact the teacher, but Breezy is very shy and didn’t want me to draw any attention to her in that way.  I tried to explain that I wouldn’t be drawing attention to her but to educating the people who created the question about the realities of living with Parkinson’s Disease. While we both knew the sentence was wrong, I originally decided to respect her wishes and not draw attention to question #20.

Well, after tossing and turning over that homework the following night, I ultimately decided I really had to write a letter to someone regarding that sentence.  I know it's not her teacher's fault; it's whoever created the textbook for the Honor's English Program in the school. This is a textbook that is not only used by her class, but by every Honors English class in our County. Although my daughter did not want me to make this an issue, I was certain Breezy would eventually understand why I felt it was necessary.  I just felt so strongly about that sentence, I wanted to express my hopes that future classes would never have to see that insensitive remark and it would quickly be removed or reworded. 

So, I sat down the next morning and drafted a letter to the school regarding that sentence, which I hand delivered to my daughter’s Guidance Counselor, who agreed they were insensitive.  She said she is going to make sure not only the English Teachers are aware of the error, but also Calvert County Public Schools for having it in their text.  Here's a copy of my letter to the county:

“To whom it may concern:

Last night, my daughter was doing her homework for her 9th grade English class when she brought something to my attention she found on the assigned Xeroxed sheet.  The assignment involved 20 fill-in-the-blanks questions using her vocabulary list.  My concern lies in question #20.  The sentence read:

“Michael J. Fox is not yet an invalid but he suffers from a disease he knows will soon leave him in a helpless state.”

I suffer from that very disease and I found this sentence insensitive, upsetting and very incorrect.  I know it upset my daughter, as well; it goes against everything we’ve informed her about my disease.  I was diagnosed with Young Onset Parkinson’s Disease in 2001.  Since receiving my diagnosis, I’ve attended many support groups and I'm even a community leader for an online support group for People With Parkinson’s.  Through those groups, I’ve  had the pleasure of meeting many people who have lived with this disease for many years, some for several decades, and not one of them is in or near a “helpless state”.  My own neurologist, who is renowned for his treatment of PD, told me “people don’t die from Parkinson’s, they die with Parkinson’s”.

Even Michael J. Fox, as mentioned in the above sentence, is far from being in a helpless state.  He may suffer with visible symptoms (especially the dyskinesia, a result of his Parkinson’s medication), but he is nowhere close to being helpless.  He retired from his sitcom not because he was close to being helpless, but because new priorities made it the right time. He maintains a strong commitment to his acting career and running Lottery Hill Entertainment, but he has shifted a good deal of his focus and energies toward The Michael J. Fox Foundation for Parkinson's Research. His fame can be a useful tool in bringing a face to Parkinson’s, with hopes of not only drawing awareness to the disease but also funding for a Cure! I think a more appropriate sentence could have been:

‘Michael J. Fox will never become an invalid from Parkinson's because a cure is coming soon.’

Thank you, so much.”

I just wanted to educate those who are educating my children about this disease that has now become a daily part of my life, just as it has become a daily part of your life. Thank you, as well, for all you are doing to bring awareness and research to Parkinson’s.

Two months later...I get a phone call from the Michael J. Fox Foundation regarding my letter:
The phone call wasn't from Michael J. Fox, himself (shucks), but a representative calling from the Michael J. Fox Foundation in New York City "on his behalf".  He started off by saying how sorry he was that it took them so long to respond to my letter, but they wanted to personally thank me for bringing the Text Book to their attention.
 
He was also calling to gather a bit more information about the homework, as they were planning to contact the county (or State, if necessary) to make sure they've removed the sentence. My daughter had just come home from High school when he called and she still had the paper in her back pack.  I pulled it out and told him it appeared to be a text book made by the County for the Honors Program in the High Schools in our County. We talked about how WRONG the text book was and how it would make ANYONE with PD feel angry if they read such a thing.  I then told him about the article I read at CNN.com about PD being "always fatal" and how I got on my soap box again and wrote to them.
 
He told me several times how grateful they were for my efforts to bring awareness and education through letters such as this and through my work on our board (yes, he mentioned our board... the URL for our PD Board was included in the Footer of my Letter). He told me to continue the good job and to continue spreading the word about Parkinson's!  He apologized again for taking so long to respond to my letter, but he said they've just been very, very busy at the Michael J. Fox Foundation.  I thanked him for the call and told him that "all your time should be dedicated to raising those funds for a cure NOT answering letters from stay-at-home-moms". He said that just last weekend they had a GREAT fund raiser in NYC which raised over 5 million for PD Research!!

I told him that someone on my board (Dani) had recently posted that they saw MJF in an interview on Access Hollywood and how great/healthy he looked.  He said that MJF was doing VERY well and was responding well to that new dyskenisia medication. He said that there's a motto around their office (I wish I could remember it verbatim) where they say "We opened the foundation with the ultimate goal of closing the foundation" meaning that they've finally found THE CURE.  I told them what Jane on our board always says (and the rest of us echo) to "KEEP YOUR BAGS PACKED".  He agreed.  He said we should because they are bound and determined to have a cure soon.

I think, all in all, we talked about 15 minutes.  I thought it was very nice of the Foundation to call and follow up about my letter!

 

 

ÓLauren Sue