My 10 years with Multiple Sclerosis

Grief, gratitude and everything in between.

That’s me on Feb. 16, 2014, in the emergency room. Photo: Julie Olson Rand

The worst I ever felt was before I even knew.

I had what I suspect were my first significant symptoms of multiple sclerosis in December 2012. I had just turned 36. My wife and I had just bought a house. I was otherwise healthy and had, in fact, run two marathons in the previous six months.

But the winter hit and I had a massive energy drain. Few of us love the worst of Minnesota winters, and this was a bad one.

I started developing unusual headaches and light sensitivity. A doctor suspected migraines; the treatment didn’t really help, but the unpleasantness wasn’t constant and it essentially subsided by spring.

After feeling great for a few weeks in May 2013, I remember gleefully walking down a sidewalk one day, remembering how I had felt during the winter. I said quietly to myself: “I’m glad I never have to feel like that again.”

If I only knew.

By late fall, I was feeling lousy again. But I was also about to become a new father. My wife was pregnant and due in late March – on her birthday – with our first child. We were nervous about a lot of things.

“I just can’t shake the feeling that there is something terribly wrong with my body,” I confessed to her one night that winter. Clearly this wasn’t migraines.

I remember getting dizzy while walking through my office a couple of times. I remember feeling like I was talking too slowly while recording a video. I remember sitting at my desk and wearing sunglasses sometimes because the glare of the computer screen bothered my eyes so much.

I would work for a while, then I would feel something: a little numbness here. The onset of that day’s headache. Any symptom would send me scurrying to Google, looking for some magic combination of things that would crack the code. Maybe if I type these seven things I will know what’s wrong with me.

I’m sure I looked up my symptoms hundreds of times over the course of several months, the anxiety building within.

I would come home exhausted at the end of the day, needing immediately to lie down in a dark room with my eyes closed for 20 or 30 minutes.

My body would enter this strange dream-awake state, where it felt like my limbs were paralyzed and I was technically awake but functionally asleep. I hated the feeling but also loved it because I knew that when it subsided, once I felt like I could move again, I would generally have enough energy to make it through the rest of the evening.

This is how I managed my days for most of the winter. It was enough to get by, and some days were better than others. By February, the winter was still brutal but it felt like spring was close. We were climbing out of the darkest days, tilting toward the light, and I could remember what a difference it had made a year before.

Then I woke up on Valentine’s Day 2014 and couldn’t really feel my legs.

---

I still have a hard time explaining exactly what the sensation was. Thankfully, I’ve never felt it anywhere close to it again. The best I have been able to do is to say this: It felt like I had iced down my legs from the tops of my thighs down to my feet. If I touched them, I could barely feel anything.

I also was developing a strange and very tight pain that seemed to squeeze me all the way around the middle of my stomach and back – something I would later find out is not-so-affectionately called the “MS hug.” The tiny muscles in my ribs were spasming, though I didn’t know that.

I tried to ignore it. I made lasagna for Valentine’s Day dinner. My wife went to her baby shower two days later, about six weeks out from her due date. I stayed home, miserable, getting worse. When she returned, she asked for what was probably the millionth time if I needed to go to the emergency room.

Finally, I said yes.

The strange thing about MS is that it often presents as a set of vague, ever-changing symptoms. As I tried to explain what was going on at the ER, I felt a little crazy. Your legs feel like they’re iced down? They did a CT scan of my abdomen because of that strange pain, which was clean.

They were pretty sure I would benefit from an MRI, but that wasn’t a task for the emergency room.

Five days later – I don’t remember the timeline exactly, but my medical records do -- I had a spinal MRI. Three days after that, an MRI of the brain.

Both of them showed lesions — evidence that “inflammation or the immune system (was) attacking the myelin sheath on (my) nerves” — a telltale sign of multiple sclerosis. I was given a massive dose of steroids to bring down the inflammation in my body.

I remember it was a scramble to find a pharmacy that could handle the steroid order on short notice. A regular pharmacy said they could, but that in the dosage they had on hand the order would be more than 1,000 pills.

Thankfully, a specialty pharmacy was able to fill the order.

Several tests and about a month later, five days before the due date for our first child, I had a pretty clear diagnosis: multiple sclerosis.

But I knew in mid-February once the tests started. It all made sense as soon as I pieced everything together.

MS had come up as a possibility during my months of furious googling, but maybe I didn’t want to believe it. Now that it was here, I was terrified and confused. But I was also determined and strangely relieved.

I no longer needed to alarm myself by consulting Dr. Google.

Finding out what it was – giving a name to a set of symptoms, understanding what might be done to feel better – brought a strange sense of hope.

The unknown was the worst part. Finding out terrible news was somewhat paradoxically the beginning of a journey to get better.

---

I’m a North Dakota native, and we tend to be pretty stubborn. That doesn’t always play out to the best results, but in the case of my diagnosis I like to think it gave me a certain amount of resolve.

Now we know. What can we do about it?

There’s no cure for MS. That was made clear from the start. A very difficult thing about it is that outcomes and symptoms can vary widely.

At a basic level, the same thing is happening to everyone with MS: Something triggers their immune system to attack their central nervous system. That damages nerves and “disrupts signals to and from the brain.”

This can cause vague but persistent mild to moderate physical symptoms like numbness, tingling and fatigue. It can also cause more serious problems: blindness; weakness or paralysis; mood changes and memory problems.

Early on, MS tends to present in a “relapsing-remitting” stage. You have an attack, a new lesion or lesions show up as evidence, and you might experience some of those symptoms. Or you might not.

My MRIs were showing evidence that some of my lesions were new, which is almost certainly why I was having those symptoms I described.

Given all that, there was an element of the unknown even after being diagnosed. How would I feel in a year? When would I experience another attack or flare-up? How much would it progress in five years?

One particular comfort is that MS is not fatal. It can shorten lifespan by a handful of years, but even that gap is shrinking. It tends to affect quality of life more than quantity, but in both cases treatment is helping.

Information is more plentiful. Testing and new medications are evolving. Awareness is greater. Lives are improving.

(Here is where I shamelessly remind readers that I made a pledge at the beginning of the month to donate 50% of any money from new paid subscriptions through the end of February to the MS Society. I already made a $100 donation with your help at the start of the month. There is also a sharing link at the bottom of this post, and I would be grateful if you would spread this to anyone whose life has been touched by MS or even anyone who you think would like to read it).

Soon after diagnosis I started taking glatiramer acetate, an injectable drug that was one of the first approved treatments for relapsing-remitting MS. It had been around for more than 15 years when I started taking it, and it has been shown to decrease both the frequency and severity of relapses — essentially slowing down the progression of MS.

My wonderful doctor at the University of Minnesota made a point of emphasis at the outset of treatment: We know this particular drug is safe because it’s been around for a while. It’s up to you, but maybe let’s start here?

I’m still on it now, which is great. That means it’s working.

Initially it meant giving myself a shot every day; pretty soon after, it switched to three times a week. Math tells me I’ve given myself at least 1,500 injections in the last decade, but I barely even think about jabbing myself with a thin, half-inch needle anymore. I don’t even flinch when one of our three kids, out of curiosity, asks if they can watch.

For me, though, medication is only one part of the treatment plan. As I talked more to my doctor and investigated what was working for other people my age with MS, it became clear that I could make other changes that might help. That brought a sense of empowerment, even if it wasn’t outright control over my destiny.

MS is associated with poor sleep, and I had sure become a terrible sleeper in the year-plus leading up to diagnosis. We found a safe medication to help with improved natural sleep quality and quantity. That was a game-changer.

I altered my diet to cut out gluten, given that there was some indication that the inflammatory properties of gluten can be an MS trigger. I’m still gluten-free a decade later.

Exercise was already a part of my life, but now it became more intentional and consistent. Studies have shown that it’s essential for a variety of reasons, which represents a change from past thinking.

I tried to be more mindful and alleviate stress in my life. That is … ah … sometimes easier said than done. Our lives are busy. My wife and I have three kids now, meaning we’ve had two more since I was diagnosed. But I think over the years I’ve become better at managing stress.

Almost immediately after diagnosis I started to feel better because I was taking actionable steps and because we had a wonderful baby daughter as a distraction. My wife and I even ran a marathon together in June 2015, not long after our daughter turned 1.

But I also know this now: Even as my physical health was improving, my mental health was still not where it should have been.

I didn’t want to talk about my diagnosis. I told close family and friends about it, but I also gave a lot of them explicit instructions: If you can, please don’t ask me about it. Just let me deal with it. Let me do the things I think I need to do to get better, then watch me have the same life I was living.

I didn’t want pity or special treatment – I still don’t – but I also was closing myself off from the process of grieving and allowing others to help me on that path.

I equated talking about it with dwelling on it. Some compartmentalizing is necessary to get through any trauma. But not 100 percent.

I think I only started to realize that several years later – and I am particularly reminded of it now. I haven’t ever written about any of this or talked about it in such detail, and I feel a certain lightness in the process.

For a while, I think it was superstition – not wanting to jinx my relative good health by talking about it too much. But what is superstition other than an attempt to gain a false control over the things we can’t control.

Is that healthy?

I’m appreciative now when my wife senses I need a break to reset and urges me to take one. I’m thankful when people ask how I am.

I hadn’t really thought about the worst days in years, until I dove into this reflection. Maybe it’s just the benefit of time, the distance that heals wounds. Maybe I wasn’t ready until now.

But it feels OK now. I feel OK.

---

Ten years later, gratitude is at the forefront of my emotional journey. I try to pull that in close whenever I feel something else.

At times I experience something akin to survivor’s guilt. Since my initial diagnosis, I’ve had 10 years of clean MRIs. I haven’t needed another trip to the ER or a hospital stay.

Once a year I see my specialist. He asks how I’ve been doing, performs some tests and reads the results of the latest MRI (though even those are every two years now, as long as I’m feeling OK).

I tell him pretty much the same thing every time: I feel pretty good. I try to get him to tell me that feeling good for this long must be a good sign. He agrees, but also reminds me that there are no promises.

There are days that aren’t as good, but that doesn’t mean they’re bad. Just times when I feel remnants of those old symptoms: some numbness, some fatigue, a little weird light sensitivity, a twinge of the MS hug.

Usually it happens when my stress is up and my sleep is off. It’s seldom bad enough to take over my day — just enough to move from the background to the foreground of my body and mind for a spell until it fades again.

It’s never completely gone, but I can handle its presence. My life has been altered, but my days are not fundamentally changed. I know that is not everyone’s experience with MS, that other people have it much worse.

That’s the guilt, and I struggle sometimes to re-frame it as gratitude.

I also know that just about everyone on this planet is dealing with something. Maybe it’s physical. Maybe it’s emotional. Maybe it’s short-term. Maybe it’s sustained. Maybe it’s less than what I’m carrying. Maybe it’s much more.

It’s not a point to compare my experience to that of others, nor does it give me any comfort to think of how someone else might be struggling or coping. But it does give me some perspective.

This is my unique challenge, but the process of struggling is not unique at all.

In recent years, I’ve also had this challenge: How to disentangle what might be a symptom of MS from what might just be a symptom of … life in 2024? Getting older?

I was 37 when diagnosed. I’m 47 now. Between then and now life has become more stressful in general and specific ways.

We have three kids, one of whom had significant health challenges early on (but is doing great now). We went through COVID, which turned a lot of lives upside down and ravaged our collective mental health (mine included). A lot of things just feel heavier now.

When reading before falling asleep at night, I use “cheater” glasses. That’s not MS. That’s just getting older.

I haven’t done a marathon since that one in 2015. I haven’t signed up for any sort of race in at least five years. When I go for runs now, I generally only want to go a few miles. I’m a little slower and heavier than I used to be. That might be MS. That might just be getting older. Maybe it’s some of both?

I very rarely go out late anymore, preferring instead to prioritize quieter activities and sleep. Maybe that’s just personal evolution. Perhaps it’s an internal compass fine-tuned to the understanding of what my body can and can’t handle without consequences.

How much is the medication helping? Do I really need to avoid gluten? Do winters seem harder with MS because of the disease or just because it’s winter? How am I going to feel tomorrow? What will life be like in another 10 years? How much have I adapted to a new normal? How would I feel now if I never had MS?

It’s a complicated swirl of unknowable, uncontrollable elements.

So, in short, it’s life.

All I can do is try to focus straight ahead on what I do know. There is no other reality, and fortunately this one is pretty good.

I feel better now than I did 10 years ago. I feel just as good physically now as I did 18 months ago, and I’m in a much better place mentally.

For that, all I can be is grateful.