MS isn’t a social disease

It’s mother’s day today and I feel like I should be writing about something pertaining to how much I admire my mother. Or how I feel about never having become a mother. Or something mother-related because…that’s what I should be thinking about. Instead I’m thinking about other things.

I’ve been kind of waiting for the magic to happen after infusion number 4. Hope is hard for me. Faith is even harder. But I was trying to allow myself to hope. It’s only been a few days since my infusion so maybe there is still hope but I’m not feeling much better. I’m so frankly tired of writing about how tired I am. So amazingly tired. So tired that I just want to sleep all of the time.  This past week I gave in to it and found myself in bed before 9PM. I’m not even watching my beloved television. I just go upstairs and get in bed. Sometimes I read. Sometimes reading feels like effort. Then I fall asleep and the next day I try to get through a regular day…before I plop myself into bed again and fall into blissful sleep. I feel like sleep is the only time I feel ok. I have always loved sleep. I just look forward to it now because it’s the only time I feel…ok.

I’ve read blogs from other MS patients and know this isn’t uncommon. The fatigue is one of the most common symptoms. I’m not sure that it helps me to read these things. What I read last night, for example, just made me sad.  The fact of this disease is that getting through a regular day – doing regular things like eating, getting dressed, going up and down stairs, walking from my car to wherever it is I am going like work or the grocery store  – those basic kinds of things are exhausting. I feel super proud of me when I can do them. I go to bed feeling accomplished. That’s super sad to me. It makes me wonder what the rest of my life is going to feel like.

I can hear my own advice in my ears. Don’t think about the rest of your life. Just think about now. Think about today. Remember the truth is, you’ve never been much about that active life! You love doing nothing. You’ve described the things you love to do in life in the past as “cerebral.” You live inside your head and that’s always been OK with you! Why is that a problem now?

I was thinking to myself this week – these past couple of weeks really – that the challenge of this disease is to get ok with the contents of your own head because that’s where you live a lot of your life. You can’t do a lot of the things regular people do easily so you have to get comfy with the furnishings inside your mind. You have to read books and listen to the wind and that has to be enough. You have to look at the outside, see the sun or listen to the rain from your bed and find contentment in that. You have to think about different ways to have adventures.

I believe this is possible. I really do. For example, I can travel the world if I want to. I just can’t do it the way other people do. I have to find a countryside in Scotland where I can sit and enjoy my experience. I have to find an Italian villa where I can take super short walks and have lovely places to sit when I am exhausted by them. I have to find cafes in Paris where I can sit and write and be content with sharing the contents of my head with others from a sedentary spot of beauty.  I have to find beauty in quiet and stillness. I have to find contentment in the purring of my cats or the sound of the wind chimes on my front porch. I have to not feel lesser because of this. I have to believe that an internal life is j just as good as an external one.

You also have to believe that being alone is OK too.

I’ve always written about and truly believed in my heart that alone is how I am at my best. I can never escape the pressure of trying to be what someone else wants me to be therefore choosing to be alone means the only person I am trying to be is myself. You can see this as self-protection or as the coward’s way out. I see it as the way I can live my  most authentic self.  If I ever find the person who lets me be my most authentic self while I am also in a relationship, I will be in a relationship. But I’m not sure I believe that exists.  If I were in a relationship now it would have to be about that relationship, not about having a goal like I did in the past. The goal was having  family. I think this saves many conventional relationships because it gives each person a practical place to focus when they can’t figure out how to fix their own selves. When you don’t have children to focus on, an external force to place your focus and energy, you have to be OK with what’s inside yourself. You can’t rely on distractions or activities to keep you occupied, you have to figure out what you really care about and what you truly believe. And since I’m probably too old now to actually have a baby, any relationship I would be in would have to have a different goal. The goal of just being. Just being for each other. I’ve never been able to do that with another human and not lose myself. I’ve only been able to do that on my own.

So why does it scare me so much now?

Maybe because I’m suddenly realizing that this is not a social disease. I just made myself laugh, but that’s the truth. This is a disease that makes you feel funny about being honest about the way you feel. You don’t  want to act this out in front of people. You try to act as normal as possible when in the presence of others because it’s how you want to be seen but damn, if that’s not the hardest thing possible to do. I think that’s why I fall down. When I stop paying attention to how bad I feel and try to act like I feel ok – and stop listening to my legs and my brain telling me to sit the fuck down it takes over and forces me down. Usually on my face. So that I realize that I don’t feel normal. I don’t feel fine. And now I also have a black eye to remind me of that, you’re welcome. But acting OK is much better than the alternative. Admitting that you’re not.

Maybe that’s why it’s easier to be alone. You don’t have to explain it to anyone. You don’t have to act like you’re ok. You can just be honest and let it be what it is. Maybe it’s possible to find a person who you can share that with but I’m not sure I believe it.

This disease is not an active disease. It’s not about being ABLE it’s about listening to your body to figure out when you are able and when you’re not. It’s about slowing down and not pushing too hard. Do you know how hard that is when you live in OUR world? The entirety of life is centered on trying to do things. Accomplish things. Make things. Be things. Doing is a fundamental way we live. Trying is inherent in who we are. Think about the times in your life when you’ve decided to be active or to get fit. When your body feels exhausted – just push out 5 more. TRY harder. Do a little bit more. Just TRY.

But this disease forces you to stop trying. It forces you to listen to your body and know when it’s time to stop trying and rest. It force you to understand what you are able and not able to do. When you try to ignore it, it shoves you down on the sidewalk and gives you some lovely road rash around your eye socket. It makes you lay on the ground until someone happens to come by and help you up. Trying is not the goal. Staying upright is. Or maybe it’s trying to stay upright. It’s all pretty confusing.

I just have this overwhelming feeling that I have to accept this. I have to listen to my body and accept when I have to move slowly. I have to accept that some nights I have to go to bed at 8PM for an entire week and even when I do that I may still feel tired! It has to be OK because fuck if that isn’t how it just IS whether I’m ok with it or not.

When I read the writings of my fellow patients I can hear them trying so hard in their words. Trying new medications. Trying to fight the torpor. trying to be among the living and trying to be a normal – not an MS patient. The fact that they lose time after time is daunting to them. They feel like the fight is futile and exhausting but the idea of the alternative is even more horrifying. Just not trying! Just being this version of the person you are. The slower, quieter version. The one that doesn’t feel compelled to do everything but is OK with just watching, listening, feeling and experiencing life in a quiet slower way. They feel frustrated when they can’t be part of the activity of life. They feel lesser and wonder to themselves, “how can I live the kind of life I always thought I would live? How can I accept so much less than what I thought I could do?”

But what if it’s not about what you can do, but who you can be, how you see, think and feel – as opposed to how much you accomplish, strive for or do. What if it’s about finding quiet in your soul and living there in that place where calm and serenity isn’t frowned upon but is embraced.

What if your journey means you can only take a few steps at a time before you need to rest? Does that make what you see or experience any less than those who move more swiftly? Maybe in your ability to contemplate and look around, you get to see more. Maybe it’s not about living the life I thought I was supposed to live, is what I am trying to say.

Maybe it’s about living a different kind of life, the kind I am able to live not the kind I think the world wants me to live. Maybe the only judge of how great my life is that matters is me.

These are the things that are on my mind. I know it might sound like I’m giving up. Or that I’m considering allowing this disease to win. Maybe I am. I’ve always said, I’m not that great at things that are hard. Cheryl, my therapist, calls bullshit on me when I say that because she constantly point out that I do hard things every day at work. And I always say, well those things are easy for me, therefore they don’t count as being good at the hard stuff. These conversations we have can go on and on for a long time while I try to get her to see things my way. She usually doesn’t. But my point remains. What if the hard thing I’m supposed to do now, is figure out how to slow down? To live differently – not the same. What if it’s too hard to live the same? What if that’s just not possible anymore…

I’m talking out of both sides of my mouth here, I realize. Is it easy or is it hard? I think what I’m saying is that I thought my job was to figure out how to live with MS and be normal, like other people or like how I thought I was supposed to be when what I really need to figure out is how to live with MS and be OK with having a different kind of life. To find solace in rest and quiet. To not feel lesser because I can’t move very fast. To not feel worthless because I can’t keep up. I have to find my worth in other ways. Which is how I’ve always found my worth, really, isn’t it?

Any time I’ve ever tried to be like everyone else I have failed. Any time I’ve ever tried to keep up, I’ve fallen behind. Maybe this is the lesson of this disease. Keeping up isn’t the goal anymore. Just being OK with where you are is the goal.

Maybe the Buddha had MS?

Tell me what you think...