I said I was writing my last post so I would remember things that I often forget that are kind of important in life, and in life with multiple sclerosis, in particular. And as I suspected, I had to go back and re-read that post myself again this week when things didn’t really go as planned. I’ll probably need to do it again and again and again.

The thing is, I had a good week the week prior. I went to work four days in a row. I slept well. I felt pretty ok (my standards are not high, I’ve learned this much at least). I liked being in my home. I liked being out of my home. I felt mildly optimistic. It was a good week.

But this week? My body was all about telling me, “Nah, sit down girlfriend you are diseased and useless. Slow your roll and do what you do best: Nothing.”

I had to work from home. I had to drag myself into the office on Thursday because there were people visiting from out of town who I wanted to see. The kids were having a birthday celebration for me at work so I kind of had to show up, right? But it was BAD. I felt bad. I looked bad. I stumbled to and from everywhere I went. The valets where I park nearly fell over themselves trying to help me get my things out of the car because I just looked NEEDY.

I was in bad shape. The end.

It didn’t get better as the week went on. Something is funny with my muscles. My leg muscles specifically. Spasticity is no joke, as it turns out. My legs feel heavy and stiff. Forget stiff, they feel hard like solid stone. I’d be moving my legs in my mind, like my brain would be telling my legs to move, but nothing much was happening down below the waist. I take baclofen 4X a day to prevent this kind of thing from happening, but it’s happening lately anyway and that’s not cool.

The next morning, I woke up and couldn’t  move my legs at all and my arms were completely numb. I had a full-on freak out while laying in bed telling myself “calm down, don’t be ridiculous, you are not paralyzed this is just a thing that will pass.” I took deep breaths and waited. Once I could feel my arms again about fifteen minutes later I pulled myself up using my arms on the top of my very strong wrought iron bed frame head board. I swung my legs to the floor and waited until they felt like legs again. It didn’t really get to that point but I had to pee so I frankenwalked to the bathroom, holding on to walls and furniture along the way.

The thing is, normally this wouldn’t have been such a bad thing on this particular day because I had taken a vacation day on Friday (the day I was temporarily paralyzed) and I had a slow day already planned but it centered around one important event: It was hair day!

I was going back to my platinum strands after a brief foray into natural hair. Don’t get be wrong. I didn’t hate my natural hair at all. It was kind of fun to see what color my actual hair really is since it’s not been 100% natural since I was maybe 17? I had no idea what color my real hair would be. I even liked the white streaks that were oddly artfully strewn across the front of my usual pompadour. People asked me, often, if they were highlights! I’d just burst into laughter. Yeh. Those were highlights alright and I’d earned every single one of them these last few years.

My hair appointment was at 2PM. I had to go to a part of town I’m not familiar with because my normal salon had been damaged in a flood and we’re still waiting for the work to be done. (Notice how I say “we” because I feel so personally invested in my salon friends, I think of that place as my own, which is hilarious but completely true.) I planned my departure. I knew I’d arrive early so it would be cool. Parking was right in front of the temporary spot, so that wasn’t hard either. It would be fine.

I misjudged though. I parked about 75 feet from the door – which should have been no problem and wasn’t a problem when I walked to the door of the salon. My legs felt pretty wonky but it was OK because I was going ever-so-slightly downhill and the girl who does my hair is one of the people I truly love most in the world. Even though she was watching me “walk” toward her, she knows what’s going on and I would never be embarrassed in front of her.

We’ve become friends in the years that she’s made my hair dreams come true. I’ve spent more time with her than I have with a lot of people in my life because I’d make it to hair day if I had to roll in on my belly. That’s how important it is to me. When my hair is blonde, that meant I’d roll into the salon every 5 weeks at least for several hours. When your hair is very dark, and you want to make it very light, you will be at the salon for some time. I love every second of the time I spend there. When my hair was natural I spent a lot less time there and it made me sad.

I guess what I’m saying is, my hair is probably a vestige of my old self that I thought I was ready to change when in fact it was something I really needed for more reasons than how much I love the way it looks. I love having cool hair! But it’s about more than that now. I wanted my hair back! I didn’t care how ridiculous I looked walking to the salon. I’d make it there if it killed me.

Dana, my hair girl, knows more about me than most people. You might say she knows everything. Maybe Cheryl and Sandy (my long time best friend and work partner) know more but only because Cheryl is my therapist and Sandy has lived most of it right along side of me.

Dana reminds me of myself at her age, which is of course much younger than me because pretty much everyone is these days, but her age in particular was one of the ones I liked best and least at the same time. The thoughts she has now – about being a mom, owning a salon, wanting to be competitive at her sport – might seem like things I wouldn’t relate to that much on the surface but 35 is a magical age for a woman. You start asking the right questions. You finally start figuring things out! You begin to grasp how important loving yourself really is. Talking to Dana is like a walk down memory lane to one of the favorite phases of my life so far. That she makes my hair look awesome while doing it, is the icing on the cake.

So I made it to the salon. We did that bleach thing that I love so much. The feeling of white goo tingling on my head was reminding me how much I missed my ever-so-processed ‘do. I love the way it smells. I love the way it feels. I might be a more than a little out of my mind (but you already knew that). It took little effort at all to get my virgin medium brown hair back to blonde which surprised me. I had planned a longer stay but I got out of there in a mere two hours.

When it was time to leave, I knew my legs weren’t entirely operational but I had to get back to my car a few short feet away (and slightly up hill) to get myself home. I had Stanley with me, thank god, but I barely crawled back to my car. As I walked out, I hoped Dana wasn’t watching me because I never want people to feel sorry for me. In 75 feet or less I felt the breath on the back of my neck and  heard the conversation more than once coming from fast walkers, mostly in pairs, coming up behind me on the street. I just stopped and let them pass, both times. I got to my car by some miracle of the universe. I sat there a few minutes, catching my breath, thinking about how much that sucked.

That’s when the machinations begin. What’s different? Why was last week good but this week such a fast slide to suck town? Did I do something different? Am I progressing? Is this how Ocrevus works, that you just run out of gas two months before your next infusion? Is baclofen not working? Why isn’t my CBD doing the trick loosening up my limbs like it usually does? What was that paralysis thing about? Is that going to happen again more often now? Should I not go to sleep because I might not be able to move when I wake up? I have things coming up at work where I have to be present at meetings outside of my office. How will I do that if I can’t walk? How will anything happen in my actual real life if I’m immobile? This isn’t about using  a cane or assistive device, this is not being able to move your damn legs! What is happening? Am I causing this? Will it stop? Is it only every two weeks that I have some good days? What makes those two weeks different? How can I plan meetings around that? And on and on and on…

STOP IT.

I went back and I re-read my last post. The simple truth that I was forgetting (again) is that none of this has any rhyme or reason at all! I can’t plan for this. I can’t do things or eat things or think things that will make this any different. This is just how it is! When you have MS, you get what you get each day of your life whether it’s convenient for you or not. That’s just the way it goes. Stop using so much precious brain power trying to figure out the magical equation that will suddenly make it possible for you to increase the number of good days and decrease the number of bad days. I cannot control this. I can only control how I deal with it.

This is the speech I am still giving myself today, on Sunday, looking ahead to a new week. What will this week bring?

I literally have no idea at all. But one thing I do know is that I will be doing it with my awesome new (old) hair. My hair is back! I have a new, slightly different hair cut, and I love everything about it. Dana did her magic again in more ways than one.

I was going to wait for a good shot, with makeup and all that, before I debuted my new hair. But it’s been days since I’ve thought about putting makeup on my face or donning anything but my comfiest clothes. But that’s the great thing about this hair! I love it even when I am the bare-faced, old-lady who doesn’t try very hard anymore, out of fucks to give person that I am becoming. So here is my new (old) hair:

I can’t wait to be back at the salon every 5 weeks come hell or high water. It feels good to have my hair back even when I feel not-so-good. As Doris Day used to sing, “Que sera sera!” What will be will be. I’m going to try and make that my soundtrack in the coming weeks and see if my poor, tired brain can get a little break from all of that constant noise.

And I will do all of that with cool hair. Thanks to Dana.