Twelve is a strange number. We gave it twelve apostles and twelve hours on the face of a clock. We gave it twelve months, twelve jurors, twelve inches to a foot. We even gave it its own word, which we have not done for eleven or thirteen. A dozen. Something about twelve made people want to name it, as if it were complete in a way other numbers are not.
Twelve years ago today, I was told I have multiple sclerosis.
I did not think of that day as the beginning of anything good. Nobody does. A diagnosis like that arrives as a subtraction. The first thing it took from me was the illusion that life comes with some certainty. I still go to bed most nights wondering whether today was the last day I will be able to walk, or see.
When I told Pete, he did not console me. He said, “Congrats. Your life isn’t what you thought it was going to be. You are one of the lucky ones who knows that.” I did not feel lucky. It took me years to understand he was handing me something he had carried since birth.
The second thing it took was time, or at least the belief that I had an ordinary amount of it. I am wired for numbers, and I did what I always do. I looked up the data. The largest American study I found showed annual mortality rates of 899 per 100,000 among MS patients against 446 per 100,000 in the comparison group, with a median lifespan 6 years shorter. A sixty-year study in Norway put life expectancy for people with MS at roughly 7 years below the general population. Most people read numbers like that and see an average. I read them and saw a distribution, and I knew I was somewhere in it without knowing where. I did not just know those statistics. I felt them.
But the numbers that frightened me more were not about death. They were about the years before it. Death is the last line of the table. The rows above it are about whether you can walk to the mailbox. Greater disability tends to come first, and then to shorten whatever time remains. In MS, the loss of mobility and the loss of time are not entirely separate things. They travel together.
When I was diagnosed, the textbooks still quoted the older odds: half of us developing progressive disease within ten years and needing some form of walking aid within fifteen. Treatments have improved those odds since. In one modern treated group, only 19% needed a walking aid fifteen years after onset. I have benefited from that in ways earlier patients never could.
Twelve years in, I can walk. I can see. I can still train hard and have run ultramarathons with MS, though for now I have chosen to set them aside and build strength instead. Somewhere along the way, the high schooler who was scared of pull-ups became a MS Warrior who loves them. I can do almost everything people without MS can do.
That is exactly what makes this disease so hard to explain. MS is invisible, and I may be its best illustration. I am an expert of hiding the reality. People have told me, kindly, that I look great and that I am lucky MS does not affect me. They say it while I am sitting at a five out of ten in pain, or while the MS hug is squeezing my chest, or while some muscle is twitching on its own. I smile and thank them. Both things are true at once. I am lucky, and it does affect me. I know I sit in the fortunate tail of that distribution. I also know a distribution does not promise anyone a place in it.
So I started subtracting too. If the disease was going to take things from me on its own schedule, I would take things from my life on mine. MS pushed me, and then it gave me permission. Permission to say no to meetings, obligations, and ambitions that only looked important. Permission to stop spending time as if I had an unlimited supply of it. What was left after all that subtraction was what mattered all along: my family, my friends, and the family mission statement we try to live every day. I did not get more time. I got more of the time I had.
What I did not see coming was what the disease would give me. It gave me Pete, in a way I did not have him before.
Pete, Ben, and I were three for most of our lives. Pete was born with cystic fibrosis. For decades I stood next to him while his body refused to cooperate, and I thought I understood. I did not. I understood it the way you understand weather in another city. It was real to me, but it was not mine.
Pete and I were never equals in this. He was the MVP of a league he had played in since birth, and I was still the rookie, short on skill, experience, and time. But a rookie in the league sees the game differently than a fan in the stands. For me, that changed in 2019.
For years after my diagnosis, the disease was quiet. I took the pills, I noticed the oddities, and I let myself believe the quiet meant something. In 2019, I had my first relapse, and so far my only one. Years of silence came back with a roar. It was the first time I truly felt that the disease was still there, that it had never left, that it had only been waiting.
Pete did not say anything to me when it happened. He did not need to. He had already told me, back when I was first diagnosed. Living with a chronic disease, he said, is like holding a glass of water with your arm fully extended, and never being allowed to put it down. For a while you can ignore it. The glass does not seem heavy at all. But the ache always comes. Eventually, you feel it.
In 2019, I felt it. And for the first time, I understood that Pete had been holding that glass his entire life, every day I had known him, while I stood next to him with both hands free.
MS made some of his world mine. Not all of it, and not perfectly. But I learned what it is to have a body that makes decisions without you, to plan around bad days you cannot predict, to be tired in a way sleep does not fix. The disease gave me the one thing I never would have asked it for: the ability to understand Pete a little better before I lost him and he gave me a path forward.
Pete passed away in March. He was almost 51. I am a few weeks from turning 50.
People look at me and assume the disease has not touched me. It has. It has made me more human, and more vulnerable, and I have come to believe those are the same thing. Vulnerability is not the opposite of strength. It is the part of us that lets other people in.
I am a better human because of this disease.
That is a hard sentence to write. It is also true, and twelve years seems like the right number of years to finally say it.