I used to hear that you only live once. That isn't true. You only die once. You get to live every day.
--Unknown
------------------
"You can still live a full life," my new neurologist told me. Maybe that was reassuring to hear at some level, but I was too distracted to fully take it in. I was distracted, that is, by the fact that I suddenly had a neurologist.
I didn't want to have a neurologist. Healthy people don't have neurologists. I couldn't have told you what a neurologist even did, at least until I needed one.
I learned the hard way that people with MS, among others, have neurologists. Mine would tell me that on average people like me would probably go about two years before my next attack. My first attack took out my left eye and hip, my ability to tolerate heat or cold, my ability to function without excessive amounts of sleep, and to calm down when I get agitated. Once the second attack hit and took even more, I had assumed that any semblance of life as I knew it would be over.
But I was thrilled by the idea of getting two years of life to the fullest. There was so much I could do in two years if I was intentional about living, I thought. I vowed to travel while I still had one good eye. I pledged to take less for granted. I promised to savor the moments when I felt normal. I swore that I'd taste my breakfast every morning instead of wolfing it down on my way to the office. I was going to stop assuming that I had the rest of my life to do the things that I really wanted, and just go live my life.
That pledge worked for a little while. I did some traveling; I ran some half marathons. I was extra thankful for sunny days and days when I had normal energy. If there was a sporting event or concert in town that I want to see, I bought a ticket and didn't worry about the cost.
But I learned that life gets in the way of living. If you are healthy enough to work, the job gets in the way of travel. It's hard to live your best life when you don't feel well. You can't be self-actualized while going in for a colonoscopy. There is no joyous way to spend an hour on hold with customer service about a mistaken bill or take a loved one in for an emergency medical visit. That bathroom doesn't clean itself.
Somewhere along the way, I realized that living every moment to the fullest wasn't realistic.
Still, MS has still changed my outlook on life for the better in some ways.
I celebrated my five-year MS anniversary last month. When I say "celebrate," I mean that literally. Every anniversary I hit where I can still function is a happy day. It marks another year of life that I wasn't promised. I didn't expect to still be working full time and walking unassisted. I'm thankful for that.
I try to remember to be thankful for things on this side of my diagnosis. Recognizing that the great things are fleeting in a weird way makes them better. That person close to you might move away, so enjoy the moments you get with them. Your boss might retire and be replaced with a jerk, so appreciate having a good office environment. You might be a healthy 30-something one week, and then go blind and have MS the next. Don't take things for granted. Thankfulness is joy.
I've learned to expect less from people, which sounds like a bad thing but is actually a healthier outlook for me. Since my diagnosis, I've been surprised by the unexpected people who turned out to be supportive, those who turned out to be critical, and those who've tried to ignore my diagnosis altogether. Sometimes those turn out to be the same person in the course of the one conversation. I've learned that I can't expect anyone to fully understand what living with my weird disease is like, so I just have to speak up for myself more often. That's true for diseases, I think, and life in general. You can't be afraid to take care of yourself when others don't know how. And sometimes even when they think that they do.
I've learned to be less critical of myself too. Years ago, I blogged about losing a court case that I thought I could have won within a handful of tries if I would have had a cheat code to argue multiple times. There is some emotional truth in that idea, but the thing is that most of us could be near perfect if we had limitless do-overs. But nobody actually does. No one can carry around their "A Game" all the time. The best we can hope for is someone who will realize our flaws and love us anyway, and that we have some moments where we shine too. Instead of beating myself up for imperfections, I am more likely to celebrate successes now. There weren't inevitable.
Maybe the most important thing I've learned is that everything will be ok. That doesn't mean everything will turn out how we hope, that life will be full of blessings, or our souls won't get crushed. But what I've learned is that life will keeps going as long as we are here, even when we don't feel like we can go on with it. Five years ago I told God that I couldn't live with MS. I said that I couldn't live with the loss of the life I used to know, with the idea of future blindness and paralysis, of injections three times a week, and of stabbing pains at random intervals as my body destroys itself from within. But then the sun came up, and I had clients to represent, a play to act in, or a friend I like who I wanted to see. I found that life just keeps going, even if you can't fully engage in it, it often pushes you forward somehow. Bad days come too, and sometimes life (or MS), might knock me down for a day or two to recoup. But eventually, there will be something worthwhile to get keep getting up for, even in the midst of sorrow.
A few days after I told God that I couldn't handle MS, I offered God a compromise. I couldn't be one of those people who pretended to be happy about misfortune, so I wouldn't ever say that I could handle MS. But, I promised I would at least keep moving forward to whatever life had for me, no matter what MS brought, even if that meant figuratively moving instead of literally. Whether I can handle MS or not wasn't what mattered, I realized, only that I kept moving ahead toward my life's next purpose.
I don't know whether or not God accepted my offer, but I'm trying to do my part regardless. I'm thankful for five years of moving forward, even if it isn't always as quickly or in as straight of a line as I would like. The last five years have taught me that there is still joy on the other side of pain, if we just keep going.
I'm thankful for that lesson too.
