I am not proud of these days.

These are the days when I wander inside myself, knowing there is something I should be doing, something I want to do. But I can’t figure out what that is, cannot identify what I want. I am lost inside my head.

The children are hungry. They ask for a snack and I allow them to forage for whatever they want. I have no idea when was the last time they ate. Maybe they had some cereal a while ago? Yes, maybe.

They ask me a question. I know they are asking me something, know I should answer. I say “yes.” And then they are doing something that is not allowed and I tell them to stop and they look at me, confused. “But you said we could.” Did I? I guess so.

Dishes are stacked on the counter. The dishwasher is full of clean dishes, and I know I should empty it, know it would take just a few minutes. But I don’t. I don’t care. I just don’t, and dirty dishes multiply.

I cannot engage, cannot respond, and most certainly cannot initiate. The kids become clingy, seek my attention, misbehave. I know it is because they want me. But the more they want, the more obvious it becomes to me that I am inadequate. I can’t be needed. I turn on another movie and hope it will hold their attention for a while. So they don’t notice that I cannot pay attention.

I know now what this is. This is not laziness. It is not depression (though there is that). This is multiple sclerosis. While it slowly paralyzes my body, MS also paralyzes my mind. I cannot focus. I am distracted. Didn’t I want to make a phone call? Yes. To whom? I don’t know. Lost. I cannot make it through a recipe. Somewhere in the middle I realize I have no idea how to get to the end. I try to remember a word. Not a difficult word. But I cannot find it, anywhere. I need to tell someone my address. I tell them my old address. My in-laws’ address.

Meals lost. Words lost. Home lost. And I do not have the energy to care.

I am lost in my mind.

Fortunately these days are not frequent. The kids don’t regularly have to parent themselves and each other. Jeff doesn’t come home to apathetic disaster every day. Many days I remember that laundry needs folded, and I even have the motivation to do it. Most days I can attend to conversation without forgetting what I am discussing. Many days I can accomplish. I can care. But there are days when all I can do is wander from room to room, inside myself.

It is called lassitude. It is a form of mental and physical fatigue unique to my disease. And Jeff assures me it is much more apparent to me than it is to anyone else. He assures me that I am not dangerous to the children or to myself, and that it does not matter if I’ve haven’t found the motivation to shower or take the kids to the park or to eat anything but ice cream. He says that it’s okay. That I’m okay.

I tell him it is not okay. I do not want to be this wife, this mother, this person.

He tells me to forgive myself.

I can’t.

Because on days like this, I can’t find a self to forgive.

It’s not an excuse.

Actually, it is.

But I’m not posting today. I’ve got a couple of posts that I think I kind of like, and they’re waiting to be finished. But not today.

I’m having an MS relapse. Or attack. Whatever you want to call it. I had to start another round of IV steroids last night. And the relapse is making me tired. So tired that it is difficult to imagine moving. And the steroids make me not sleep. And every time I move I get an electric jolt that feels like somebody attached cables to my head and is trying to jump-start me. It hurts. A lot. It makes me black out a little, sometimes. And my balance is more than a bit questionable. I tip, I fall, I trip over the boys. My legs are bruised. And Jeff has a crazy schedule this week and won’t be home to speak of until Sunday.

No, no posting. Except I don’t want to not post because I don’t want you to think I’m dropping out again. No. But reality dictates. I have to focus on the kids and on sleeping and the rest will wait. I have to wait.

And I hope you’ll wait too.

It’s like gravity failing, just for a split second.

Maybe that’s not a good analogy. I struggle to explain it, try to force those around me to understand. The laws of my nature have changed. And the concept of gravity, and its failure, is the best I can do. For just a blink of an eye, the rule doesn’t apply, and the rule is so fundamental to existence that I don’t necessarily even comprehend what is happening. It is surreal, and it causes just a flash of panic before the world rights itself again. And then I have to deal with whatever might have gone wrong in that gravity-free moment when I floated without rules.

Last night my gravity failed. As we were leaving a basketball game, Jeff handed me a half-empty cup of soda. I grabbed it from him. Except that I didn’t grab it. I planned to grab it. I thought I was grabbing it. I didn’t grab it.

And I dropped it on the head of the woman sitting in front of us.

Jeff, with his arms full of our whiney and wiggling children, flashed me a quick look of fury. The people around us stared. And the woman was angry. Very understandably angry. I apologized. I apologized again. She tried her best to wipe herself off, and I told her that there were no words to express how sorry I was. And I apologized. Again. And then there was nothing else I could do. We left.

I cried all the way home. I cried out of embarrassment for what I had done to a stranger, out of hurt for Jeff being angry with me, out of loneliness that nobody else recognized what had happened, out of sadness that such humiliations are my reality now. I cried myself to sleep.

My intent to take that cup from Jeff was so automatic that it wasn’t a conscious thought. I don’t know if it was even an unconscious thought. It was a fact that I was going to take the cup. But that fact wasn’t a fact. With the drop of that cup, I understood that how I function now is different than anything I have ever known. The laws of my body that I learned as a baby, as a toddler, as a child learning to exert my will on the world around me: those laws that have dictated my physical experience don’t necessarily apply anymore. I don’t know how to understand this.

But I woke up this morning. My eyes were more than a little puffy and I had a hangover from the crying. But I was awake and happy and the kids were awake and happy and Jeff had made me coffee, which I didn’t drop, and I cautiously tested and everything seemed to be securely anchored down to the earth. I understood that we had fun last night and then something bad happened, but it didn’t change the fun we had before it happened. Today has gone on and I have recognized most of it. And I can live with that.

It’s Friday. Shot day.

Friday evenings used to be for football games or cooking out or going to movies or something equally banal and fun. Now it’s the time I jab an inch-long needle into my own thigh and inject the medication that makes me just short of miserable for the next 24 hours.

Also: it keeps my immune system from creating holes in my brain.

I want to ignore this disease. I want to live my life like I always have, and be a football mom and clean my house and exercise to the point of madness and joyfully chase my kids around.

I can’t.

Because last week I fell for the first time. And I drop things several times a day and I get pins and needles or my feet and legs get numb or I get painful muscle spasms in my calves and feet and forearms and hands or I get a faint electric shock down my left arm and spine or my hands and arms tremble or there’s the faintest specter of depression beckoning me or when I walk I list to the left a little bit, or to the right, or I just straight-up run into things or I get confused trying to do something that used to be easy or I get vertigo or maybe bright flashes of light in my eyes. Or maybe some other stuff.

It’s never all of these things. But it’s always one, or maybe several. I cannot ignore them. They demand to be recognized. I want to ignore the disease, but I can’t.

I was initially scared of my future, of the horrors this disease might exercise on my body. But I was able to put those fears to bed. I am completely at peace with the fact that I don’t know what is coming. I have to live right now.

That’s the problem: the right now isn’t very fun. It’s been a rough couple of weeks physically, and the right now? It hurts, just enough to be bothersome. It prevents me from doing what I want to do in the way I want to do it. And I’m struggling with this. I want to be at peace with it. I’m not. Not yet. Will I ever be?

I do not know.

But: the shots. They help.

Because I can control them. I give them to myself, even though my husband obviously could. I want to do them. I want to be scared of the needle, and then overcome that fear and puncture my own skin and feel the needle slide through the fat into my muscle. I want to feel the pain and then continue. I want to be the one who injects the medicine that will keep me strong.

That weekly sense of accomplishment I feel after I do it? I look forward to it. I need it. It pulls me to Friday even on days when I’m not sure I want to be pulled.  

And so it’s Friday. Two hours and 20 minutes until my shot. Not that I’m counting.

I have these friends.

But first, some background. My family has a habit of kind of “adopting” people. Every once in a while we come across someone that we adore so much and who fits so well with us, that we claim them as our own. Call us imperialists, if you want, but I prefer to think we’re big-hearted.

Anyway. These friends. I’ll call them S & W, because those are their initials (I’m subtle that way). I guess we adopted them. They live quite far away, so I don’t get to see them often. But we have plenty of fun, regardless of the distance. For instance, W started an insane NFL football pool that we all play together every fall, and on the message board we write football haiku and post retouched photos of each other in cheerleader attire. Because S & W are (gasp!) Canadian, we’ve had a couple of fun/inebriated  Fourth of July parties when we have subjected them to hilarious and perhaps cruel US citizenship tests. W is my official Blog Tech Support Call Center. They welcomed my little nephew to his home with open arms. I heart them.

But now they’ve gone and done something else. Something that took my breath away.

Maybe it seems like a small thing, but after I was diagnosed with MS, W quietly went and got a bunch of bracelets. You know, the kind that Lance Armstrong made famous:  the LiveStrong ones, the yellow plastic bracelets that everyone wore a few years back. Except these are red and they say, simply, “HOPE MS.”

He didn’t even tell me he did it. My sister, who is  their neighbor, told me. And then she told me that W & S are wearing the bracelets. My sister wears hers. My son wears three or four of them, and proudly tells everyone they’re for his mom.

I wear mine when I can. Because, ironically perhaps, it makes my MS symptoms worse sometimes. Some days just wearing the bracelet is enough to stimulate unbearable nerve pain. But I try to wear it every day. I’m wearing it right now.

I’m new at this whole MS thing, and I’ll admit that sometimes I get lost in the idea of the disease and the fear of what it will do to my body in the unknown future. Sometimes my knees buckle when I’m walking down stairs and it’s enough to make me wonder if I’ll be able to walk when Caleb graduates from high school. Sometimes I forget something on my grocery list and I spend hours terrified that dementia has set in. Probably every day, I wonder when I’ll have an exacerbation and will have to endure another round of steroids. And sometimes it’s time for another shot and its nasty side effects and I just don’t know if I’ll be able to take it every week for the rest of my life.

But when I get overwhelmed, I look at this bracelet I am wearing on my wrist here and now. Here and now, this disease has a much better prognosis than it did 15 years ago. Here and now, I am having a very good today. Here and now, I am not alone, because someone else is wearing the same bracelet and thinking of me. Here and now, I have friends and family who care about me and support me and do things that are so kind I get tears in my eyes. I do not use this word often or lightly, but I would go so far as to say that I am blessed.

So. I have MS. And I have these friends, S & W. Except they’re more like family. And I don’t know if they’ll ever know what an amazing gift they have given me in these bracelets.

And also, I’m gonna kick their butts in the football pool this year. Just sayin.

Today is our wedding anniversary.

But this isn’t a frilly tribute to my perfect husband or a romanticized memory of myself as a princess on our wedding day or a rose-colored description of our marriage. That’s not who I was on the day we got married. That’s not who I am now. I tend to be a little more understated than a Hallmark card.

My anniversary gift to Jeff this year is accordingly quiet. This year, I am giving him my remission.

A month ago neither of us believed remission from multiple sclerosis was possible. A month ago I was losing function daily. I couldn’t write. I couldn’t carry our toddler. I had exquisite nerve pain almost constantly. I spent the majority of each day in bed. And when it seemed things might be getting better, I started to lose my vision. We prepared ourselves for a rapid decline and a drastic change in our lives.

But I saw my neurologist last week. His optimism forced me to recognize that I was feeling better. I was improving.  And over the past few days, I have felt, almost, like the self that I recognize. I didn’t want to say it out loud. I didn’t want to write about it. Not for fear of jinxing it, but because I just wanted to keep this knowledge to myself. It is so beautiful, so precious, that I can only compare it to my newborn babies. Or my marriage. I just wanted to hold it close for a while.

MS remission isn’t like cancer remission. It doesn’t necessarily mean that the signs and symptoms go away . My legs are still tingly, and sometimes a little weak. I still have crushing exhaution. But what remission does mean is that things aren’t getting worse. It means that, right now, my body is not attacking my brain. It might last a few days. It might last a few years. There is no way to know. But right now, my disease is quiet. I am strong.

Last night we went out to dinner to celebrate our anniversary. I asked Jeff if he would still love me if I am in a wheelchair. He looked stunned that I would even ask. “Of course,” he said. If I slur my speech? Of course. If I can’t see? Without a doubt. He is a rock.

This isn’t what he envisioned when he married me. It isn’t what I envisioned. But it is real, and it is good. Very good. Better than I ever imagined.

Happy Anniversary, Jeff.