Fall 2025 - Vol. 22, Issue 4

Life is what happens while you are busy making other plans.

John Lennon

Out there among the falling snowflakes, I look closely, but I can’t find myself. I am there somewhere. Billions of snowflakes showered down as I watched mesmerized through the bay window. They’re stunning and beautiful. I am one of those snowflakes, but I certainly don’t feel like I fit those descriptors.

Like the lacy ice crystals that branch out to form a flake of snow, there is a disease splintering into fragments within my body. Like a snowflake’s hexagon, I live with six sides. Six symptoms that take turns with me. Being a snowflake has blown away the woman I worked hard to become.

Chronic pain is carried with me in whatever I do. There’s nothing more to say about that.

Numbness makes it feel like parts of me have been amputated. And I think I’ve developed a club foot or a drop foot, either way it keeps me from running in circles like I used to.

To have a loss of balance that happens anytime, anywhere, for any reason, or for no reason, makes me hesitate to get up or go out. So, I have my dandy purple cane with me when I do. I truly can’t stand having a cane at my age, but it comes with me whenever I leave the house.

My cognitive problems speak for themselves or sometimes don’t speak. I open my mouth, but words escape me, or I start to talk and get all mixed up. I was an A student, but you’d never guess that if you talked to me now. That’s probably the symptom that gets noticed most by others.

I feel more self-conscious than ever, and I have no self-esteem where I used to ooze it. I find it impossible to see myself as sexy. That paired with my limited movement have caused dysfunction in the bedroom with my physical love life. It’s the emotional side of it all that I struggle with the most because I used to like me, like my body, and my energy. All of that left me so fast.

The depression over missing that woman sent me into the five steps of grief. I grieve for the woman I used to be. I continually get stuck on number four. I’ve survived the denial, anger, and bargaining. It’s the depression I continue to struggle with. And don’t get me started on number five. This condition is not one I think I can ever accept. At least not completely.

Those are the six symptoms shaping my hexagon. None are seen by anyone but me. They are all invisible to the naked eye, like the single snowflake framed by Multiple Sclerosis.

Multiple Sclerosis is the worst tattoo, because you’re stuck with it forever, but no one can see it to admire it.

Christina Applegate

After the massive attack on my spinal cord, I was told I’d had the disease for decades, and I had a dozen lesions in my brain and on my spine. How the hell is that possible?! It happened to me, and I didn’t even know it! I’d rather not know it now. My thoughts were spiraling. It felt like it all transpired in a split second. I knew I would never forget that day. You know those days. Graduation, your wedding day, the day your child is born. Only this wasn’t a day like that.

The neurologist had the worst bedside manner. He was stone-faced and just spewed it out there. Primary Progressive Multiple Sclerosis. “You aren’t going to get better. There’s no cure. We’ll try to manage it.”  Wait, did he say I’m not going to get better? So, this is it. This.

I went home, and I didn’t want to get out of bed. It meant more facing my new reality. I kept thinking, who cares if I get up or how I look? No one is coming over. I have nowhere to go. I’ll melt away, like snowflakes do. I walked into the restroom and caught a glimpse of myself in the mirror. I stared. I looked the same, so that was a plus. No one would ever know anything was wrong with me if I was sitting down.

I wondered how people would treat me. As I shared the news with family, they were sympathetic saying “What can I do?” My parents call me much more often than they used to. My adult children avoid the topic, and they prefer to keep our relationships the same as it was pre-MS. I find I like that approach.

My oldest daughter told me from the start not to expect her to look at me any differently. She reminded me of what I’d overcome in the past and said I was too motivated to sit back and let the worst of this come at me without fighting it. Knowing how independent I am, she knew I would want to do as much as I could myself, and if I needed her help, say the word. And in her always humorous way, she said “You, a snowflake? Well, you can’t be, because I hate snow. And I love you.”

Most of my friends had no idea what PPMS was, so they needed longer explanations. Since I didn’t seem any different to them, I felt like they doubted me. Sure, they’d act concerned and ask how I’m doing. They’d tell me I looked good. I suppose I should be grateful, yet often I find those comments annoying. I’ve become accustomed to telling everyone who asks that I’m feeling fine, whatever fine means. When the truth is, I’m not.

There are a million people in this country who have MS, but I’m the first one I know. And if they’re like me, they try to cover it up. Strangers look at me and don’t see it at all. A man asked me who I bribed to get a handicap license plate. Completely out of character, I burst out in tears. It happened again when a friend said I didn’t look like I was sick, so it must not be that bad. It was like that in the beginning, and now I can finally control my emotions, and I’m doing my own pity party behind closed doors.

Life is a journey that must be traveled no matter how bad the roads and accommodations are.

Oliver Goldsmith

I still find myself asking why. But we don’t really get to do that. I’ve often wondered if snowflakes realize there’s strength in numbers. Billions of snowflakes packed together form a snowball, strong enough to break a window. Rather than fall, I had to admit that for the first time in my fifty years on this planet, my snowflake needed someone to help it stay afloat. Besides, I do enough falling on my own these days.

I knew having this disease changed everything for me. But also, for my man. We’d made plans to travel across country by car, stop at every attraction. Go hiking and exploring. He’s the one who will be stuck with me like this. Secretly, I worry if he’ll leave me. I will eventually be unable to walk on my own. I wondered why he would want to spend the rest of his days with someone who’s incapable of even day-to-day cooking, cleaning, or shopping. He does all of that for me now.

As many times as my sweet man tells me how much he loves me no matter what, I am aware this is the ‘no matter what’ part. He couldn’t have expected such a drastic change. I know I didn’t. I can’t run, dance, jump, walk Boo-boo (my dog), wear high heels, drive a car, pick up my granddaughter – I could keep going, but you get the picture.

Hearing people say, “You’ve got a good man, good family, and friends to be grateful for,” “You are fortunate. It could be worse,” “Thank God as he must have a new path for you to follow,” or ‘Take it one day at at time,” only frustrates me. Yes, all of those statements are absolutely true. But I’d be dishonest if I said any of it makes me feel grateful or fortunate.  And what I think of the minute I wake up is that I have PPMS.

I feel alone sometimes in my feelings. But I’m not alone. My man is my snow blower. He refuses to let me let my snowflake fall. I’ve lost so much of myself, but he tells me I’m not losing him. When I begin to feel depressed or I struggle with things as simple as showering, he is right there. And he didn’t sign on for this.

The treatment I’m on helps, but it can’t cure me.

The woman I used to be was gone in a flash. I’m called a survivor, strong and brave. I’m only beginning to see me in that way. When I feel overwhelmed  remembering who I used to be, I pack all of those feelings into a snowball and throw it as far as I can. I will never again be able to jump on the trampoline, ride the roller coaster, or swing out on a rope with my grandkids and drop into the water, but they are resilient and found other ways we can have fun together. We play old board games, draw funny pictures, and I tell them the stories of my childhood.

It’s a different me – I didn’t ask for it, but I got it. And this is my life, my broken body, and my disease. Mine. It’s time to put away what I can’t do and unpack what I can. Each of us with MS is a snowflake, no two alike. In writing, I’ve found an outlet and a purpose. And in this storm, I’ve found shelter in my husband’s love. Because anytime I feel my snowflake falling, he will catch it, and together we will make snowballs. So, let it snow!

“In a time of drastic change, it is the learners who inherit the future.”

Eric Hoffer