One thing I love about blogging is that I'm part of the ChicagoNow community. Our bloggers are a wonderful, diverse assortment of saints and sinners, dealing with life from its joys to its sorrows. And then writing about it. I'd venture to say that most of us think of ourselves as advocates, whether for parents or rescue dogs, for children or schools, or for cancer and other diseases.
We have several bloggers with MS, and I want to introduce you to one of them, Beth, who writes the blog Ups and Downs of a Yoga Mom. Go to her blog here and read her story. It will move you and it will encourage you.
Beth has taken advocacy to heart and has started her own web page called Modern Day MS. It's a site for people with MS and for their caregivers. It offers ways to get involved, ways to be heard, and ways to learn. Beth is providing what she was looking for when she was diagnosed.
In celebration of her newly launched page, I wanted to let a friend of mine, Terri Pantuso, tell her story about being the daughter of a mom with MS. I'm so grateful to Terri for sharing it.
I find it ironic that the acronym for Multiple Sclerosis is the same as the feminist form of address for a woman (MS and Ms) except, of course, for the lowercased letter. The irony for me lies in the fact that this horrific disease, MS, has robbed my own mother of her power as a woman.
I am the very adult child of an MS survivor. I say ‘survivor’ because my mother was initially diagnosed with the disease nearly 30 years ago. Given that I am almost 47 years old, it’s easy to do the math and realize that I have been robbed of that natural mother/daughter struggle for control for my entire adulthood.
Please don’t take this as a cry for a pity party. Those who know me well also know how fiercely independent I am. In part because I am an only child, and in part because I’ve had no other choice. For me, independence is a method of survival. And, oh yeah, let’s not forget my mother.
As a child, I spent many nights dancing and singing along with my mother to various hits of the 1970s. My mother absolutely loved to sing and to dance. And since she was a teenaged mother/high school dropout, she spent long hours working for little money to support me, but that never stopped her from dancing.
My mother always had the most beautiful voice and smile and they lit up any room while she was dancing. When my first daughter was born nearly 19 years ago, Mom couldn’t wait to dance with her granddaughter to whatever music delighted the toddler.
Unfortunately, those dances were very short-lived and typically consisted of my mother cheering on my daughter from the couch. This, again, is not a plea for pity because I assure you that my daughter absolutely loved being the center of Grandma’s universe.
But when daughters number two and three came along, my mother’s stamina and good mood diminished, and in turn they were robbed of the same delightful grandmother that their oldest sister adored.
Here’s where I return to the “my mother is an MS survivor” part. You see, although she has been able to maintain minimal mobility for the past fifteen years, my mother has merely done nothing but exist. Her constant battles with depression due to the fact that she is a very young 65 year old woman trapped in a body that seems determined to fail have taken their toll on our relationship.
And over the past 10 years I have said some things that I regret to my mother in moments of sheer exhaustion and desperation. Why? Because I can’t let her give up. If I allow one ounce of doubt to creep into my psyche, she’ll spot it – because she’s my mother. So I have to never give up…and that battle is exhausting.
So, yes, my mother is a survivor in this MS war; but she is also a casualty of that war. Her body bares the scars of numerous injections, infusions, and experimental treatments. It also suffers the slings and arrows of the outrageous fortune of surviving in the form of permanently tightened muscles, unexplained bruising, stitches from slips and mishaps, a lack of sensitivity in her extremities, and diminishing vision.
So when asked about my experience as an MS caretaker, I have one cliché response – I’d rather be dancing.
Take a moment to visit Beth's page and bookmark it for your friends and neighbors. So many of us are touched by illness, and Beth's page gives folks with MS a place to start and place to return to. Maybe it will give you the space to dance. Modern Day MS is here.
UPDATE: (1:13 p.m. on 10/1) Terri's mom read her words and posted this message on FB that they wanted me to share with you.
Yes, if only I could dance again. Dancing was always something I loved and could do quite well. There a four reasons I try to keep going: Terri, Kelsie, Natalie, Renee. Without them, why keep struggling. Everyday is a struggle but I want the girls to say " she never gave up. She tried her best to keep moving". What role model would I be if they said " She did not even try, just gave up". I want them to never give up, keep climbing the mountain. When they get to the top, go down the other side and climb another mountain.
This disease really will cause you to doubt your faith in God. But I know God did not do this to me therefor, I ask him everyday for strength to carry on. He has never let me down. Yes, I do get depressed because this disease will take me is down and someday I may be completely incapacitated but I will not stop fighting.
I am extremely proud of my girls and tell people about them all the time. They are very busy and sometimes I feel like they just don't have time for me. But I hope they know I love them all very much and they are always on my mind. I absolutely want no pity. I look around me and realize there are worse diseases than MS, so I am really blessed.
Terri, you are now the wind beneath my wings. I love you baby.
Brenda, I'm sending you and Terri all my love! Thanks for sharing your words.
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