What It Means To Me

"Ehh, whatever" was my somewhat cavalier reaction to the diagnosis of MS. "No big deal, life goes on, it'll be fine." Three years on, my cavalier and flippant view has diminished along with my physical capabilities.

What it means to live with MS

I don’t look all that different, although the stilted walk is starting to give me away and force me to work on my MS Elevator Speech. The 15 seconds in which I can succinctly reveal that I have MS, what it is for the uninitiated and then move on.

I was asked recently by a close friend what it means to live with MS. This was a true, good friend and someone willing to listen and deserving to hear more than the elevator speech.

Social events are primarily a logistical concern

What does it mean? It means that I’ll often decide not to attend social events because I’m tired and just don’t feel up to the effort. And whenever I do go somewhere I wonder how crowded it will be, how far will I have to walk, should I bring my cane? Rather than how fun it will be, my first thought is always a concern for logistics.

Drive-thru, delivery, or don't is my new motto

It means I park in the handicapped spot and wonder if anyone is judging me as I walk away. It means I have my groceries delivered and if we run out of something that can’t be purchased at the drive-thru dairy, we do without until the next big order. Walking into a store is only done on rare occasions. Drive-thru, delivery or don’t is my new motto.

Shoe purchases taken over

MS has even taken over my shoe purchases. Shoes with a heel, nope. Rubbery sole that easily catches on the floor, nada. Open back slides or clogs, uh,uh. Flip flops? Appropriately named because that's what I'd be doing if I tried to wear them.

Constant battle with a world trying to bring me down

MS has made me think about every single step I take, especially if there are curbs, stairs, cracks in the sidewalk, slight inclines or declines in the ground, gravel or... well, you get the idea. When I’m out in public, my brain goes into hyper-vigilant mode and I am constantly scanning my surroundings, like a video game character, trying to figure out how I’ll get from here to there safely. It has made a simple outing for lunch feel like a carefully thought out walk through a minefield where each and every step could pose a danger. I'm in a constant battle with a world that is trying to bring me down. Literally.

A hard fall

I went down hard once. Dark, rainy night on an uneven driveway with a slope. There might as well have been a flashing neon Trip & Fall Here sign. Maybe if there had been I wouldn’t have gone from upright to the ground in a split second. Thankfully, I came out of it with just a scraped up knee, nothing broken. Well, my heart was broken because I saw the look on my 14-year-old's face as he stared down at his mom lying on the ground. It was a mix of shock, astonishment, and fear all at once.

Later, I asked him if it scared him. “No, yes, I don’t know,” was his teenage response. I hugged him close and whispered, “It scared me too.” Then from him, “I just never know when it’s going to be the big one.” I didn’t ask what he meant, I didn’t want to know. Or maybe I did know because in the back of my mind I have the same fear.

Accepting the need for help

MS means accepting help, accepting that I cannot do simple things like before. Allowing others to help me, the bags carried, the arm offered. It is getting easier and quite frankly more necessary to let others lend a hand. The difficulty and hesitation to accept help is not so much embarrassment at having to take the offered hand as to admit that my MS has progressed to the point of needing the help.

This journey has taught me to be grateful for what I CAN do and I try to count those blessings each and every day. A lofty goal and let's face it, some days are harder than others. Some days I alternate between sad, pissed off and defeated.

Becoming more engaged with my kids

I've found myself being more engaged with my kids whenever there is an opportunity. "Hey, can you come throw the ball to me on the trampoline?" might have met with, "I need to start dinner, maybe later." Now, dinner can wait. This happened the other day and the joyful "Yippee!" exclaimed by my 14-year-old when I came out to the backyard made my heart smile.

I am grateful for my boys and their willingness to help without a complaint. I know they see me struggle at times and they are trying to figure it out in their own way. "Does it hurt? Is it just your right leg? Why won't it move?” I'm glad they ask the questions, my hope is that knowledge will make it seem less scary.

It's impossible not to hear the whisper of MS

So, what does MS mean to me? It means my life is filtered through the MS lens. I do not make a move, literally or figuratively without MS whispering in my ear, “Hmmm, well, maybe or maybe not.” It is an ongoing balancing act of body, mind and spirit.

As much as I'd like to pretend otherwise, it is impossible not to hear the whisper. The ongoing challenge is to keep the possible at the front and center while keeping my physical and mental balance. I may not be able to mute the MS dialogue completely but my goal is to be able to turn down the volume.