Living with Multiple Sclerosis – What I’m Telling My Sons in Five Minutes

I’m going to start with this: I’m not dying. That’s the most frightening part. The thought I might not be around. I have to get that out of the way.

Then I’m going to back up.

I was overweight. It was 2011, and we had a toddler and a newborn. I wasn’t sleeping well, but I was eating well. Really well. All the food.

Time to make a change. I’d been fit my entire life, so my dad bod didn’t compute. I started running obsessively, often making it over to Bernal or up to the estates on Foothill. Upwards of ten miles five times a week.

It worked. I was 175 lbs. Down from a 225 I hadn’t thought possible. The diet was cleaned up, too. An annoyingly portion controlled routine of grass fed protein and vegetables, with the occasional dip into ancient grains for variety.

Dublin High School History Teacher Michael Ruegg

I just rolled my eyes as I read over that. Think about how my wife Sara felt.

Back to it. One morning in October of 2012 my right knee buckled as I was running by the old Trader Joe’s. I guess it didn’t buckle. It felt more like a spring in my knee had popped loose. I could still walk, but that’s all I could do. I spent the next forty five minutes limping home, convinced I’d pinched a nerve or something.

Then it felt better. Completely better.

A few days later I was doing laundry, bent down in a catcher’s stance with a basket of my sweat soaked running clothes. My ankle gave out. I fell. The dirty clothes fell, too. On me.

You had to laugh, right?

I told Sara what happened. She didn’t laugh. She told to me to call my doctor.

I waited. It would get better.

It did not. My ankle wasn’t working right. No pain, just a lack of function, like a watch that needed winding. The next day I did what you shouldn’t: I Googled my symptoms.

Rabbit hole.

According to Google, I either had an inflamed bursa sac or bone cancer. I immediately ruled out an inflamed bursa sac and scheduled that doctor’s appointment Sara had suggested.

X-rays and MRIs. No structural damage. Bone scan. No cancer. Electromyogram. Inconclusive. Blood work. Inconclusive.

I went to a doctor who specializes in physical therapy. Have you been experiencing any numbness? Fatigue? Why yes doctor, both. Should I have mentioned that?

She poked me with a needle a few times and ordered some more tests. MRIs on my thoracic spine and brain. More blood work. A spinal tap.

I went to work the next day.

My poor students.

I basically sat at my desk Googling more illnesses. Thankfully, my students were working on a project, so I wasn’t being completely irresponsible. Unfortunately, some poor kid walked up to me right as I had convinced myself I was suffering from Lou Gehrig’s disease. He asked about presentation length, and I bit his head off. Then I apologized profusely. He seemed more weirded out by the apology than the overreaction, so I dropped it.

I had a phone appointment with my neurologist that afternoon. He told me there was no reason to think I had Lou Gehrig’s disease.

Sure. What did he know?

A week passed, and results were in. I used a personal day so I could receive the bad news in the privacy of my own home. I didn’t think I’d break down, but what if I did? Sara offered to stay home and wait with me by the phone. I told her she should go to work. I’m a fortress of solitude type.

That morning was agonizing. I can’t frame it any other way. Waiting, and waiting, and waiting.

9 o’clock. No call.

10 o’clock. No call.

11 o’clock. No call.

I decided to get the oil changed in my car.

Yes, I decided to get an oil change. I can’t explain that decision.

As you probably guessed, my phone rang as I was waiting for some air filter to be changed out. I was so nervous my phone flew out of my hands when I went to answer it. I dove to the ground, retrieved my phone, and stumbled outside.

My doctor told me I didn’t have ALS…again. Not exactly good news though. I had some kind of demyelinating disorder.

A demyelinating disorder. Oh, thank goodness. I only have multiple sclerosis.

Yes, that’s what I actually said to my neurologist. Just MS.

I find myself annoying sometimes.

I could go on and on. Maybe someday I’ll write down a personal history, but not today. Today I’m telling my nine and six year old I’m sick.

Now, obviously I’m going to change some of the language. What will a kid do with rabbit holes and old baseball players? I’m going to change my story’s language, but I do want to make my message clear to them.

ONE: I always thought there was a vain of weakness running through me. Now I know better. I hurt every day. I feel strange. I feel awkward. I feel off. Light hurts my eyes. I have trouble walking a straight line. Cold temperatures make me feel like passing out. Frankly, it can be miserable.

But it’s not. I have a real enemy to overcome, and I do.

TWO: share your stories. Your narrative is critical to other people, and by helping others, you will feel more control. My AP Seminar students shared their stories this year, and for the first time in half a decade I spoke publicly about my diagnosis. We all fight individually, but we need to understand we are not alone.

THREE: define yourself. You are not one aspect of your world, but one aspect will swallow you if you allow it. My sons need need their father. My wife needs her husband. My mother needs her son. My sister needs her brother.

Self-pity cannot have me. I’m booked.

In many ways, I’m lucky. I wouldn’t be thriving if I didn’t have my family and friends. I have a huge support group, which allows me to lean on loved ones in times of need. But that makes it all the more important for me to share my story. Other people have much less than I do.

And now I’ve come to the end. I’ve written down what I want to say. Now comes the hard part. I need to look into my sons’ eyes and tell them their dad isn’t invincible.

But they can handle it. They can handle it because they have to, and if I’ve learned anything, it’s how strong we are when there are no other options.

Michael Ruegg teaches World History, US History, Freshman Seminar at Dublin High School.