We tried to take a picture in which we weren't laughing. We failed. Back in the fall of 2005, I’d just moved back to the mainland after spending ten years living on an island. I was starting a new job at an ambulance service, and I was nervous. After all, I’d just left a community where everybody knew everyone, and I was walking into a workplace in which I knew not one soul and had zero experience in EMS. I had some concerns that I’d forgotten how to socialize like a not-crazy person. Also, I hadn’t gotten a real haircut in a couple of years, and my wardrobe was largely “island practical” and not “office professional.” I was proud that I’d remembered to shave my legs that day, like that was a big “normal” achievement.
Renee was the one who trained me that first day. She had an easy smile and a bubbly personality; I liked her immediately. It was her easy acceptance of the weird lady from Block Island that made me think I might do okay back in the real world.
Three years later, Renee was one of my bridesmaids. And believe me, if you’re going to get married, you need a woman like Renee in your corner. She would call from Walmart when she found do-it-yourself invitations in the clearance aisle; text me when she found a garter in the bargain bin at Party City; and even sewed my wedding veil, hand-stitching seed pearls and ratting, while she was out of work after surgery.
Another thing happened the day of my wedding. Renee noticed that she had numbness in her palms and feet. It was weird, but didn’t stop her from dancing all night at the reception. A few weeks later, she was diagnosed with multiple sclerosis.
Some people would feel sorry for themselves, but Renee is not “some people.” She immediately formed a team to walk in the annual MS Walk, and started fundraising for the National MS Society. I agreed to join the team, mostly to support her, plus I needed the exercise.
Renee’s family’s reaction to the MS Walk was amazing. She has four sons, who all walked that year, and brought their buddies, too. Her oldest, Chris, got a tattoo of the MS team’s name (Walkin’ Myelin and Myel-Out) across his forearms. Her youngest, Patrick, asked his friends to donate to the National MS Society instead of giving him birthday gifts. Renee’s mother made MS pins with little orange roses to give out to the team members. Everyone in the family pitched in to make food for a post-walk barbecue. Quite frankly, I felt like I slug compared to all of these people who were cheerfully working their butts off to support their daughter/mother/wife/sister/friend. I chomped on the chocolate mustache lollipops her son Matthew had made and thought about what I could do.
I’m not particularly talented when it comes to baking or tattooing or getting people to donate money. But I could do this one thing. See, I’m a writer. I could . . . write.
In 2015, I released My Mom Has MS, a children’s picture book intended to help young kids understand the illness. We used it to help fundraise for the MS Walk, and I continue to donate a portion of the net profits to the National MS Society. The book stars Renee’s family, and really focuses on Patrick. (What a good sport he is!)
Whenever I do events, I have My Mom Has MS with me, and it’s led to a lot of interesting conversations. So many people have been affected by the disease, and I’ve met the newly diagnosed, the long-coping, the relapsing-remitting and the secondary-progressive. All wonderful people. I met a young man at an event once who told me about an unusual MS treatment that involved parasites. For a horror writer like me, it was fascinating.
Now it’s 2017, and Patrick’s gotten older. (A lot older. Remember: I wrote the first book about seven years after Renee first found out she had MS, but set it when she was first diagnosed.) I’ve had a lot of parents ask me at events if I’d consider writing another book, aimed at an audience that was a little older.
Well, sure I would. After all, we’d need something to help fundraise for the 2017 MS Walk, right?
I’m proud to announce the release of My Mom, MS, and a Sixth-Grade Mess, available now on Amazon, Barnes & Noble, and in select retail stores. But I did say I wanted to use the book to raise money for the National MS Society, didn’t I? If you visit my MS Walk page at http://main.nationalmssociety.org/goto/staceylongo and donate $20 or more, I’ll send you a signed copy of My Mom, MS, and a Sixth-Grade Mess to thank you for your donation.
A final note: I cannot emphasize enough how awesome Renee and her family are. Patrick hasn’t grumbled once about being cast in the starring role in both of these books. This fall, while writing this book, I had Renee texting her son Jonathan while he was deployed overseas to make sure I got his character details exactly right. Renee’s husband John, all of her boys, their wives, and even their former cat have all been rendered as crudely drawn cartoons and given dialogue and storylines at the mercy of my whim. I wrote these books for them, but the gift they’ve given me—their unconditional trust, most of all—means the world.
Enough of the mushiness. Donate HERE to get your signed copy today!
Renee was the one who trained me that first day. She had an easy smile and a bubbly personality; I liked her immediately. It was her easy acceptance of the weird lady from Block Island that made me think I might do okay back in the real world.
Three years later, Renee was one of my bridesmaids. And believe me, if you’re going to get married, you need a woman like Renee in your corner. She would call from Walmart when she found do-it-yourself invitations in the clearance aisle; text me when she found a garter in the bargain bin at Party City; and even sewed my wedding veil, hand-stitching seed pearls and ratting, while she was out of work after surgery.
Another thing happened the day of my wedding. Renee noticed that she had numbness in her palms and feet. It was weird, but didn’t stop her from dancing all night at the reception. A few weeks later, she was diagnosed with multiple sclerosis.
Some people would feel sorry for themselves, but Renee is not “some people.” She immediately formed a team to walk in the annual MS Walk, and started fundraising for the National MS Society. I agreed to join the team, mostly to support her, plus I needed the exercise.
Renee’s family’s reaction to the MS Walk was amazing. She has four sons, who all walked that year, and brought their buddies, too. Her oldest, Chris, got a tattoo of the MS team’s name (Walkin’ Myelin and Myel-Out) across his forearms. Her youngest, Patrick, asked his friends to donate to the National MS Society instead of giving him birthday gifts. Renee’s mother made MS pins with little orange roses to give out to the team members. Everyone in the family pitched in to make food for a post-walk barbecue. Quite frankly, I felt like I slug compared to all of these people who were cheerfully working their butts off to support their daughter/mother/wife/sister/friend. I chomped on the chocolate mustache lollipops her son Matthew had made and thought about what I could do.
I’m not particularly talented when it comes to baking or tattooing or getting people to donate money. But I could do this one thing. See, I’m a writer. I could . . . write.
In 2015, I released My Mom Has MS, a children’s picture book intended to help young kids understand the illness. We used it to help fundraise for the MS Walk, and I continue to donate a portion of the net profits to the National MS Society. The book stars Renee’s family, and really focuses on Patrick. (What a good sport he is!)
Whenever I do events, I have My Mom Has MS with me, and it’s led to a lot of interesting conversations. So many people have been affected by the disease, and I’ve met the newly diagnosed, the long-coping, the relapsing-remitting and the secondary-progressive. All wonderful people. I met a young man at an event once who told me about an unusual MS treatment that involved parasites. For a horror writer like me, it was fascinating.
Now it’s 2017, and Patrick’s gotten older. (A lot older. Remember: I wrote the first book about seven years after Renee first found out she had MS, but set it when she was first diagnosed.) I’ve had a lot of parents ask me at events if I’d consider writing another book, aimed at an audience that was a little older.
Well, sure I would. After all, we’d need something to help fundraise for the 2017 MS Walk, right?
I’m proud to announce the release of My Mom, MS, and a Sixth-Grade Mess, available now on Amazon, Barnes & Noble, and in select retail stores. But I did say I wanted to use the book to raise money for the National MS Society, didn’t I? If you visit my MS Walk page at http://main.nationalmssociety.org/goto/staceylongo and donate $20 or more, I’ll send you a signed copy of My Mom, MS, and a Sixth-Grade Mess to thank you for your donation.
A final note: I cannot emphasize enough how awesome Renee and her family are. Patrick hasn’t grumbled once about being cast in the starring role in both of these books. This fall, while writing this book, I had Renee texting her son Jonathan while he was deployed overseas to make sure I got his character details exactly right. Renee’s husband John, all of her boys, their wives, and even their former cat have all been rendered as crudely drawn cartoons and given dialogue and storylines at the mercy of my whim. I wrote these books for them, but the gift they’ve given me—their unconditional trust, most of all—means the world.
Enough of the mushiness. Donate HERE to get your signed copy today!
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