I Thought My Mom Was Angry and Cold, But She Was Just Keeping Her Multiple Sclerosis Diagnosis a Secret

4 years ago
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When I was a young child, I always thought my mom was angry most of her life because she didn't want us, wished she hadn't had kids, didn't like being a mom. Then, when she passed away five years ago, I had the chance to read some of her old journals (she made an entry every single day for most of her life) and began to understand that in actuality, she embraced motherhood and her kids with a huge amount of enthusiasm. In her early entries, she was giddily happy about having kids and a family, and wrote long entries about how wonderful it was to be a mother and how happy she was, being married with kids.

It wasn't until she was diagnosed with Multiple Sclerosis that my mom started to become the rather complicated woman that I knew, growing up.

When he diagnosed her with Multiple Sclerosis in her mid 30's, my mom's doctor told her that she must never gain weight, because one day the MS would cause her to become bed-ridden. He told her that the disease was progressive and that she would gradually lose the ability to care for herself, let alone care for her family.

What a horrible thing to have looming over you, especially when you had four young children all under the age of ten to care for (my brother came along five years after I was born). And, my mother being the stoic that she was, decided then and there not to tell anyone. Not my father, not her parents, not us, not her best friends. No one. She kept the diagnosis a secret for over 25 years.

When she told me on my 31st birthday that she had something to tell me that she'd been hiding from all of us, including my dad, the very first thing I said to her after she told me about the MS was, "That's why you wouldn't go with us that day at The Cloisters in New York."

My mom was a big history and religious buff. So, you can imagine my surprise and confusion the day our whole family went on a special visit to The Cloisters, when as we got out of the car, she proceeded to pull out her book (she was a big reader, and always had a book with her), sit herself on a nearby park bench and announce, "You all go on without me, I'm going to stay here and read my book."

I was dumbstruck, and couldn't figure out why she always seemed to withhold herself from us, and especially from something which she had seemed so excited about. I mean, this was the holy grail of family trips for the Schmidt family -- religion, history, education, and literature all rolled into one -- and for no apparent reason, my mom was refusing to join in with the rest of us.

At dinner that night so many years later, she nodded and said, "Claudia, I could never have made it up all those steps with my MS." The disease made it very hard for her to walk for long distances, and stairs were always a big challenge. If you've been to NYC to see the very beautiful and historic Cloisters, you'll know that there is a very windy, steep staircase up the side of the hill that they are poised upon.

My dad couldn't find a parking spot up top, and so parked the car on the street down below, at the foot of the stairs. When my mom saw the staircase, instead of asking my dad to drive back up and drop her off at the door of the museum, she just sat herself down on a bench to read her book, rather than tell us the truth about having Multiple Sclerosis.

Such a small thing: If she'd only been able to ask for help, we would have jumped to support her. She had a hard and lonely life, I think. We all would have loved to have been able to help her if she'd only been willing to share her "weakness," which is what I think she considered it to be.

My mom passed away five years ago. During this year, as I went through the various stages of my breast cancer journey, I would think about how glad I am that she's not physically here to have to deal with this. If she were here in body, she would only feel helpless and unable to help me, since she couldn't travel at the end of her life, and was in fact bed-ridden those last two years.

But since she's not here in body, I believe that she's able to see what's actually going on, in spirit. I'm not a particularly religious person, although I consider myself to be very spiritual. My theory is that my mom can see and know what's going on with me, in its totality, from where ever the heck she is in her current form. So, she can see all the physical difficulties I had this year but could also see my spirit and strength throughout, and has that sense of knowing that I'm able to handle it.

Mary Elizabeth McClafferty Schmidt was a strong woman. She raised 4 strong kids, and I'm proud to be one of them.



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