I love being alone.

This seems very odd to many people, but I’ve established a sense of comfort in the solitude that I’ve been given. I treasure it. I hardly ever wish for another human to be here, in my home, entertaining me. I cannot remember the last time I had a thought like, “Gee, wouldn’t it be nice if someone else were here? Wouldn’t it be nice if there was someone to do things with?” The simple reason is that I prefer my own company under most circumstances. I find comfort in my solitude. It took me a long time to get to this point where I don’t jump out of my skin thinking about being alone. But I got here, and I am happy I did.

When I’m asked what I like to do, I usually start with how much I love to read, watch good television or movies, write in my journal. Even before I had trouble getting around and walking very far, I still had that same response. I have traveled all over the world for both work and pleasure but the truth is that I really prefer being home. I’ve never gone on a trip where I wasn’t ready to come home at least two days before my trip was over. I force myself to travel because I feel like I should see the world and explore and such. But the real truth is, I like the idea of seeing cool places more than I like the reality of what’s involved in doing it.

The simple truth is, I live a pretty internal life and for 49 years now that’s been enough for me. But lately? I can’t stop thinking about the word lonely. I feel lonely. And it has finally dawned on me that loneliness has nothing to do with a need to not be alone. They are two very different things! I mean, why didn’t someone tell me this before?

I’m most lonely when I’m in the company of others. I struggle with this because it seems like such an oxymoron, but I feel more lonely than I’ve ever felt before when I’m in a roomful of people. This is probably why I avoid parties now. Or socializing in larger groups. It’s not just the physical limitations, though those do certainly make partying a challenge. It’s not about my frustrations with my wardrobe limitations, though that also irritates me more than I like to admit. It’s much more about my inability to feel truly a part of any group no matter how big or small.

This disease makes me feel completely separate from most of the world. I find myself in the company of people I love without anything to say. I don’t have anything of interest to add to many conversations. When people talk about normal-people things – like things they want to do, places they want to go, events they want to attend or exhibitions they want to see – I find myself shrinking into myself thinking, “I probably couldn’t do that. I’d get too tired too fast. I wonder if I could walk that far? I wonder how long it would be until I just lose interest because I’m just so fucking tired?” These generally aren’t fun, upbeat thoughts to contribute to conversation.

Topics that are usually top of mind for me include things like how to describe my latest leg problem. Is it a pain? Or is it a vibration? Is it tingle? I might be thinking about how long it’s going to be until I need some kind of walking aid. Will a cane help? Probably not but what about some kind of walker? Well that won’t keep my legs from getting tired. How do you use a wheelchair when you CAN walk? What do you think?

You probably don’t. You probably don’t think about things like this at all nor do you want to think about things like this. You probably don’t want to hear about my latest bizarro symptom or the fact that I slept for 12 hours last night but I still feel like I could sleep for days and days. You might find it less than entertaining to hear about my greatest fears (not being able to work anymore) because who the hell wants to talk about things like that in polite company? You definitely don’t want to know how many times a day (and night) I pee.

I know I don’t.

I have friends. I guess I have a lot of friends. But I’ve fallen out of touch with some because I’m hardly ever feeling up to going out at night these days. I don’t make many plans. I realized last week when I was out to dinner with clients on Thursday night that I haven’t been out at night in the past 6 months more than a handful of times. My family makes fun of me for my tendency to want to have dinner super early. I’m the queen of the blue plate special. Not only does this allow me to avoid the “scene” wherever I happen to be, it also means I can probably get home before my whole body just gives out. Who wants to go out to dinner at 5PM? Not many people, it turns out. (Some of you do, though, and I love you for it. You know who you are.)

I see people I know doing things with each other that I think I would like to do…eating out, having drinks, going places in public, traveling to places I’ve always wanted to see. I feel sad when I see these things because I wonder if I don’t get asked anymore because people don’t want to make me feel bad or because maybe, just maybe, I’m kind of a downer to be around. Truth be told, I’d probably say no if I were asked. Why do I want to be asked to do things I probably can’t or won’t do?

I’m impossible to placate. I want to be included. But I don’t want to be included. I want to want to do things. I want to be normal. I want to feel like you feel and live like you live. I want to think about fun things and be a fun person. I’m funny! I want to be funny again.

I want to stop being pissed off all of the time. I want to stop envying your ability to walk so gracefully (even when you think you’re not graceful, you look like a goddamn ballerina to me). I envy your ability to make plans. I envy your optimism. I envy your ability to be interested in things. ANY things. Especially things that have absolutely nothing to do with my broken central nervous system.

What I don’t envy is the fact that you aren’t alone. If you aren’t alone, I mean. If you are alone and happy, I envy that most of all because that’s what I used to be.

My discovery about loneliness is this…it’s not about being alone. It’s about feeling separate. Not a part of anything. Not a part of normal life. Because your life isn’t normal anymore. I never felt lonely being alone before because I really wasn’t lonely. I felt like an important part of a very many things.

Now I don’t feel part of anything, really. I still feel a part of work. Maybe that’s why work has become so central to my idea of who I am.  I feel almost normal there. But I feel mostly normal there because I have things to say, issues to resolve, ideas to participate in. I can be useful. Until I have to travel anywhere!  But I can not think about that until it happens.

Being lonely is about feeling separated from the world by a thin translucent film. You can see what’s happening and hear the voices but you don’t feel a part of them anymore. You feel encapsulated in the shell of your circumstance, whatever your circumstance happens to be. Mine is MS. Yours might be chronic pain, or depression, or a million other things. It probably still feels the same.

I resent this disease for ruining so many things but mostly because it’s taken away my ability to be happy alone. It really ruins weekends since weekends seem to be when I have my most uplifting, happy thoughts.

That was a joke. At least I’m still funny.