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The Invisible Disease My Mother Lives with

image source: dresden shumaker
image source: dresden shumaker

The car I drive has a handicap placard hanging on the rearview mirror. The placard isn’t for me, it’s for when I’m driving my mom or she is driving the car. If you saw my mom park in a handicapped parking space and get out of our car, you may think, “Hey! There’s nothing wrong with that lady!” She doesn’t have a cast or a wound. Some days she forgets her cane, so you wouldn’t see any indication that there was a reason for her to park in a handicapped space.

My mom has multiple sclerosis (MS). We are lucky in that it is a relapsing, remitting, variation of MS, so the progression of the disease has been very slow. So slow that some days I forget she even has it. I’ve snapped at her to hurry up because we’re going to be late or teased her over her handwriting. In those moments, I’ve forgotten that some days fastening a button can be painful and time consuming. Some days there are tremors in her hands that will make her penmanship jumpy.

I live with a person with MS and don’t always know what she is suffering through, so how could I expect a stranger to know? MS and many other diseases like it are tricky. Sometimes there are no outward symptoms. They call diseases like this invisible because so many of the symptoms are not obvious unless you are in the body of the person dealing with the disease.

The National MS Society has a list of some of the invisible symptoms of MS, which include:

  • fatigue
  • pain
  • cognitive problems like memory loss or trouble solving problems
  • weakness
  • blurred vision
  • numbness
  • prickly or tingling sensations
  • heat sensitivity
  • dizziness
  • balance and coordination problems
  • bladder or bowel problems

While my mom doesn’t suffer from all of these, she suffers from many, and sometimes all at the same time. Sometimes a sharp change in temperature will be the domino that triggers a series of symptoms. Other times there is no obvious reason, it’s just Tuesday.

I take my mom’s strength for granted nearly every day. She is a Wonder Woman to me, a Julia Sugarbaker, the ultimate champion for everything I have ever wanted to do in my life. When I turn to her and notice that she is just a bit slower, just a bit out of breath, just a bit off balance, just a bit shaken — I panic.

She has called me or texted me on the way home from work, “Heads up: I stumbled on the way to the train.” Or even worse, “Not sure how it happened, but I fell down the stairs.”

I’m terrified I will pick her up at the train station covered in blood, and sometimes I have. But she has no time for my fussing over her. She’s pissed off. Embarrassed. My mom is strong, capable, able, brilliant, vibrant, and awesome. MS is her nemesis, and most of the time the world has no idea she’s fighting it.

A few years ago realty TV star Jack Osbourne revealed he had been diagnosed with MS at the age of 26. Recently someone asked his sister, frequent celebrity fashion commenter, Kelly Osbourne, how Jack was doing. She replied, “He’s amazing. He’s unstoppable. It’s like it’s not even there.”

Which begs the question: How do you talk about something you can’t see? How do you help?

Last year everyone and their kid and their neighbor and their boss and their supermarket manager dumped a bucket of ice water on their head and raised awareness for Lou Gehrig’s disease (ALS). The Ice Bucket Challenge was HUGE. Despite how you feel about the challenge itself, you can’t deny that more people now know about ALS because of the initiative. According to the ALS Association CEO Barbara Newhouse, the challenge raised over $220 million globally.

Considering the previous year their fundraising efforts yielded $1.7 million, you could say the challenge did a LOT for the ALS Association.

This year no one will be pouring buckets of ice water on their head. (I hope not!) Instead they will be asking you to listen. Neurological diseases are not pleasant to talk about, but until we hear, until we are reminded, we won’t be able to help. Brigham and Women’s Hospital reports that “collectively, multiple sclerosis (MS), Alzheimer’s disease, Lou Gehrig’s disease (ALS), Parkinson’s disease, and brain tumors affect more than 50 million people worldwide.”

Last week, a social media campaign was launched by Ann Romney, Jack Osbourne, and Montel Williams to start the conversation about the impact of these five neurological diseases. From a press release from Brigham and Women’s Hospital, the goal of the 50 Million Faces campaign (#50MillionFaces) is “to have those affected by these brain diseases — patients, families and caregivers alike — share their stories on social media.”

Explaining why he joined the campaign, Osbourne said, “There’s so much power in one person communicating to another person about what’s going on.”

I’ve written often about what it was like to be a caregiver for my grandmother who suffered from Alzheimer’s disease. When she was lucid, my mother and I spoke to her about the disease. I know she found it incredibly isolating and infuriating, but as much as we suggested she speak to others with memory disorders, she was too embarrassed to even consider it.

She was such a social woman, I do wonder if she would have found more comfort in being able to share her story with others. While I was her caregiver, I wrote (with her blessing) about the experience. Being able to share what went on in our day-to-day life helped us. Reading what other families were going through also helped my mother and me a great deal.

My mother is open about her health battles (she has given me permission to write about them), and she often tells me about conversations that have happened on her daily commute to work. She carries a beautiful lucite cane that people like to comment on, and it’s a good starting place for conversations about health.

My mom shares:

“I’m always amused watching people decide how to ask me, ‘What’s wrong with you?!’ I usually look pretty healthy and I get teased a lot by how I can use my cane to propel me along as I hurry to catch the bus or train. Sometimes I just drop the info so that they don’t dangle on the rudeness hook too long; sometimes I just watch them.

More importantly, I listen when someone tells me they have issues they don’t understand.

And then I share the broad symptoms I’ve dealt with over decades that no doctor could put together because they hadn’t all shown up at the same time. I had no idea they were connected and thus didn’t know to lay out the whole laundry list for medical consideration.

It was one great friend, listening to me over several years, who pointed out that my collection of ills sounded a lot like her neighbor’s, who had recently been diagnosed with MS.

‘Go back to your doctor and ask her to rule out MS.’

And when I did, we finally identified that this was my probability. I could finally have a conversation about ‘what’s wrong with me.’ I’ve never missed a chance to share this lesson – connect everything, ask questions, don’t sit quietly.”

I liked the bucket campaign last year; it was fun, creative, and a break from a standard “please give me money!” plea. So far this #50MillionFaces campaign is all about storytelling and story listening. I can get behind that, but as a person who has a connection to neurological disorders, I’m surprised not to see a way to donate.

Yes, please DO talk. Yes, please DO tell me what it is like living with your disease or living with a person who has a disease, but also provide me with a way to help. What was so wonderful about the bucket challenge last year was that it allowed people to get involved, learn, and then help with donations. I’d love for the people behind #50MillionFaces to provide a way for us to more directly donate to research.

I’m a listener, but I’m also a giver.

Do you or someone in your life have a story to tell? Join the #50MillionFaces campaign or help share the stories that resonate with you.

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Article Posted 4 years Ago

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