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Have you checked the children? How MS Affects Your Family

"Dear Abby,
When I woke up this morning my mother was not here. Pap and Uncle Jimmie were sitting at the kitchen table with their heads bowed over what appeared to be empty coffee cups. When I asked where my mom was, Pap’s eyes filled with tears and Uncle Jimmie jumped up to give me a half-hug and pat me on the head. (I think he’s as uncomfortable around me as I am around him.)
            I guess Mom got up in the middle of the night to go to the bathroom and fell when she stood up. She had no feeling in her right leg and went straight to the ground. At first she just thought that her foot was asleep, so she sat on the floor rubbing the circulation back into it. After several minutes, nothing happened and she realized that she couldn’t feel the right side of her face. She called Pap who in turn called Aunt Katie who then took Mom to the hospital. She’s going to be okay, but she needs to stay there for a few days and will be treated with some type of steroids to help her overcome this “attack”.
            It’s just not fair, Abby. She finally found out what her problem is and has been religiously giving herself shots. She’s covered with bruises because of the needles and I know it has to hurt. She’s even been trying some “gentle yoga” that we are learning from a book she got from the Book Mobile. She is having trouble with the exercise because some poses put pressure on her bladder and she has actually peed herself a couple times. (That’s NOT something I want you to repeat. She cried when it happened and I felt so sorry for her. She says she sometimes can’t help it.)
            The point is, Abby, she’s TRYING SO HARD to not let this disease ruin her life and her reward is going to the hospital for more embarrassment? Aunt Katie is staying with her right now and Pap said we would call after while to see if she’s up for visitors. Joey and I are not going to school today. I’m glad. I don’t think I could concentrate." (page 59, Abby,)

Even the most attentive parents find themselves at a loss for words when introducing their children to a disease as inexplicable as multiple sclerosis. Children want concrete answers. MS rarely offers that indulgence. Multiple Sclerosis does not offer a clear cut black-and-white, not questions asked explanation. We as adults cannot even understand the workings of MS. Do we really expect our children (especially the young-young ones) to understand why Mommy cannot walk today.

In my young adult novel Abby, the main character, Abigail Van Buren Masterson, discovers (by reading her mother's mail) that her mother has made an appointment with a "NE-ROE-LO-GIST" concerning some mysterious medical symptoms she has experienced. Even though Abby can red the concern in her mother's eye, single mother Elizabeth Masterson tells her daughter not to worry because this is just another "adventure in life and that we can turn this into a learning experience."


Wow. Is that not straight off the pages of a fiction
novel, or what?

The reality of the situation is that Elizabeth Masterson has no idea how to break the news of her multiple sclerosis to her young children. The poor lady is in the learning stages as well.  And she's already been through h-e-double-hockey-sticks in the last few years. Her husband died in freak accident on the WV Turnpike while she was pregnant with their son. She is estranged from Abby's grandparents and hasn't been "home" since she and husband married against their parents wishes eleven years before. She must swallow her pride, tuck tail, and return to her hometown when she realizes that whatever ails her is serious with a capital S.

But this novel is not about Elizabeth. Abby, is all about seventh grader Abigail (named after the advice columnist Dear Abby) who has attended five different school in seven years. Before discovering her mother's medical secret, Abigail is more concerned with the exciting news that her mother has taken she and her little brother to meet and live near grandparents she never knew existed. Until this point, Abigail's only friend has been her diary she named Dear Abby. The prospect of possibly making a friend she can speak with face-to-face, attend the same school every day, maybe even go to church with grandparents like she had only read about in her library books was overwhelming.

And now she has to share all of this new-found wealth a beast named Multiple Sclerosis...

Abigail learns as her mother learns about the disease. They learn about the injections and little Joey is fascinated with accompanying instruction VHS that the home health nurse leaves with them after the first home visit. The attitude shred by all concerned is that multiple sclerosis is an inconvenient visitor, but that it can be tolerated, just like the common cold.

But this is not the case and the public ridicule that her mother faces on a daily basis really hits home when the school bully targets Abigail as her latest victim.
"On my locker I found... a photograph of mom taped to the center with the words “or is it drunk walking” written on it. The picture was taken outside Pap’s house and clearly showed my mother stumbling across the lawn.
I told you that Mom has something called a “dropped foot” and combined with the every day balance difficulties of MS, she isn’t real steady on her feet. Whoever took the photo obviously didn’t know this or didn’t care. In fact, whoever was responsible for this was just down right MEAN." (p. 136 Abby,)

I know that we have a bucket load of manure with which to deal as
host to this MonSter, but often we forget about what our family must face.
I have been fortunate. My MS hasn't landed me in the hospital after the initial diagnosis period. I am still ambulatory. I am still capable of caring for my son and husband. But I n longer wish to attend public gatherings and my adventurous soul is quite content to roam via novels and internet. I do not want to put my family in the role of sympathy/pity survivors. I've lived in a small town long enough to understand how one little innocent comment or action can spark creative wagging tongues of those anxious for the next chapter of neighborhood drama.

Sure, I want to keep my reputation intact, but I am more anxious to protect my son against unnecessary ridicule.

When writing my Purple Dragonfly Award winning, Readers Favorite 5-star finalist YA novel, I really didn't think about the true reason for my actions. Actually Abby, was written on a dare issued from the first and only seventh grade RLA class I ever taught. While my students and I "tried one another on" we discovered a shared passion for writing; especially first person narration. Every Friday was journal day, and the teacher had to share her writing as well.

By the end of the school year, I had collected enough student-advised pages to pull together an entire manuscript. I was thrilled with possibility of finally publishing something. The students were excited about returning to school in the fall (I was the only 8th grade RLA teacher at our small-town middle school) to the possibility of a published book dedicated to them.

Going through the publication process over the summer, I realized that my writing was just as much for those children as it was for me. I needed that outlet and they needed to hear it. (That particular class of students is responsible - directly and indirectly - for the publication of the subsequent novels Raspberry Beret and Opening Pandora's Box.) This is how I dealt with the corresponding publication of my disease; and my students (son included) shared in the public intolerance of the handicap nation.

This may sound as cookie cutter in its approach to MS as what my novel characters describe.

Tolerance begins with our children. Tolerance of racial distinction. Tolerance of religious differences. Tolerance of the physical and mental handicapped. 

Dealing with a disease is not easy. My son knows about my disease. I don't hide it. So far MS has not alienated him from society or placed him in a "let's make fun of that kid's mother" stigma at school. We live a relatively normal life.

But there is always that ? hanging over our heads.

What is Mom going to be like today? 

During this month of Multiple Sclerosis Awareness, really set back and reflect on  your disclosure of your MS. I do my best to laugh off public reaction for the sake of my son. But there have been times that frustration truly gets the best of me and I am left in a mushy puddle of tears, leaving my son at a loss for words and a fear that his mother is no longer the adult in control.


During the month of March, I will personally pay the postage for your purchase of Abby, and donate a portion of the sale to the National Multiple Sclerosis Society. All you need to do is e-mail me LisaAnnetteMcCombs@yahoo.com.
I will either mail your copy ASAP or even drive it to your house (if you live relatively near me).
Writing Abby, changed my life. In November 2015, I had the distinct privilege of adding another life-changing event to my life with the publication of I Have MS. What's Your Super Power?: A Common Sense Guide to Living with MS. 


Readers Favorite five-star review recipient and Honorable Mention at the London Book Festival, this is my story. I do not discourage you from finding my books on line, but for MS Awareness Month, I urge you to directly purchase through me to ensure that a portion of sales goes directly to NMSS at the end of the month.
Abby, $15.00
I Have MS. What' Your super Power? $12.00
Bundle them and save! Both books $25.00
The sun is out in WV. Have a blessed day!
Lisa



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