Once the time came around back then when I was able to leave my house without falling to pieces at the first pity look from a stranger, I started to notice some patterns. At first, I thought I was imagining things. But no. It turned out I wasn’t. Objective outside sources verified my perceptions over and over again at the time but it didn’t make me feel any better about it. There would be the walking into a work meeting or worse, some social occasion from a birthday party to happy hour, when there would be an audible gasp when people looked up and saw me standing there. GASP. There she is. The unluckiest girl in the world! Don’t get too close! Tragedy is catching and you do not want what she has, no, no you do not.

When people couldn’t physically avoid me, I’d get awkwardly touched, hugged or just nudged and a mumbled, “You look great it’s so great to see you, it’s just great that you’re out and about. Really, really great.”

Great.

Sometimes people would openly burst into tears. I always found myself feeling like I made people feel badly just by showing my face but how could I blame people? Not only did a terrible thing happen to a pretty decent person, but it was a tragic thing. A thing you don’t like to think about happening in a good world where good things happen to good people. I understood how they felt. I felt the same way. So, I got very good at being almost inappropriately upbeat. I was ready to make people feel better by proving to them on sight that I was surviving this no good very bad but random and unexpected thing that had happened to me. I WAS OK. And I would prove it to you by being so happy and positive you couldn’t help but believe me.

I find myself slipping back into Widow Mode lately and I really, really don’t like it.

Not only is it not honest but it’s also really exhausting. I don’t have the energy for it. I don’t have it in me anymore. I guess that’s the difference between 30 and 52 years old. Maybe it’s just me thinking that this current situation – my diagnosis shift/change/sentence whatever it is we want to call it – this current situation is not the same as that other one. This is terrible. It is not what I wanted to hear. It’s not what any of us in this MS Club ever want to hear but it’s not tragic. I’m not going to die, so much as I’m just going to keep living this weird new life I’ve been living for the last three years. In some ways? This is a relief.

I’m so tired of pretending I’m going to get better.

I mean, waiting for some great white medical miracle took a lot of energy. Not finding a way to will it to happen made me judge myself 100% of the time for not trying hard enough. I did nothing every day of the last three years if not propel my entire body and soul into a giant brick wall over and over again trying to knock it down with all of my strength and energy and not only failing but beating myself up in the process. This should go without saying, but doing that kind of self-damage is not positive. It’s a horrible way to live.

So, let’s get this part out of the way.

This sucks. I know it does and I’m not even going to pretend it doesn’t.  That said, I’m still the same conflicted, sarcastic old lady going through a major life evolution that I was three years ago when I started writing all of this down. This is more of the same. It’s just suddenly a whole lot clearer. Suddenly I know I’m not crazy (about this anyway). Suddenly I know what I have to do and how to do it (for the most part). Suddenly I am no longer in limbo. This is bad, no doubt, but I can’t let myself see this as tragic. This could be some kind of next-level denial going on right here, but it’s where I am (today) and I’m trying really hard to let myself get comfortable in this space. It’s time for me to get on with it. I have some readers of this very blog who so kindly commented on my last post to thank for my mind shift. I needed those messages. I can’t express how grateful I am for the time it took to reach out and help a complete stranger in her time of need. People with PPMS are some awesome folk chock full of wisdom.

Getting on with it is going to take many forms, for me.

First off, there is the 200 units of Botox I had injected into each of my calves and behind the toes of my right foot. This is a ridiculous amount of Botox and yet my doctor doesn’t think it will be enough. She’s already lobbying my insurance company for 400 units/each next time so we can also shoot up my hamstrings on both legs. Turns out I’m a spastic mess. Like off the charts spastic. It probably has a lot to do with how hard it is to move my legs and why I can’t lift my feet high enough off of the ground when I take a step so that they kind of drag along trying to trip me with every step. I cannot tell you that it was fun getting needles stuck into my foot. It took three nurses to hold down my hyper-reflex afflicted right leg while the neurologist injected the ball of my foot behind three little toes. Holy crap. That hurt a lot.

The other cool thing about going to the Botox neuro is that she used a machine called an EMG to locate the muscles that were spastic. The machine made a noise that sounded like baby whales under water. That sound was my muscles spasming. It was one of the freakiest things I’ve ever heard. Listening to your own muscles freak out is both disturbing and oddly soothing. I asked her if she could Botox my entire body and she told me that would be a bad idea because, well, poison. So not an option but it was worth asking. I should feel the effects in 5-7 days and I’m to call if I think I need a bit more. Just like they used to tell me at the medi-spa where I got Botox in my face for a while a long time ago. Irony is everywhere, people. To be honest, I had a night without spasms in my calves preventing me from sleeping so if that’s the result of the placebo effect, I’m not going to look that gift horse in the mouth.

I’ve found that moving around helps me not get so stiff and pained. So, I’ve taken up pacing. I am pacing around my house and pacing back and forth on my front porch. I can’t pace very far before I run out of strength and nearly collapse so I can’t pace like to work yet or to Target, say, but I figure if I start small I will build my strength and distance little by little. You guys know when I say little, I mean little. My step totals have been nearly negative since my last phantom-UTI downturn. I mean really low. Like under 200 a day low. I would tire so quickly I could barely do the steps in my own house.

Monday I did 674 steps. Tuesday I did 784 steps. Today I did 910 so far – this included 10-minutes on my living room exercise elliptical, my Cubii. Before the last MS nose dive I had gotten myself to about 2000 steps in a day. It takes about 3000 to get to work and back home and everywhere in between without depleting my central nervous system’s functional reserve. I will get back there but I’ve learned the hard way that I need to pace myself. Pace myself like I’m in a foot race with a family of turtles. I’m living on both floors of my house these days. I’m still rationing steps and accepting help for the basement litter box scooping and laundry doing when it’s available but I’m not stuck on one floor anymore. I can’t get greedy. Slow and steady wins the race, right?

The point I’m making here is that even though I have primary progressive MS, I am trying to keep proving to myself that even if the fancy swiss cheese that is my spinal cord cannot be repaired (thanks Dr. Cleveland Clinic for the tough love) that doesn’t mean I can’t find ways to make improvements. I’ll never get better. I know this. I’ll probably get a lot worse. But between here and there, between better and worse, I can make small changes. I can improve. I can’t be cured but I can improve. I’m improving right now – just so slowly it’s imperceptible to the naked eye but you can’t deny the numbers of my Stepz app.

You might be asking yourself about now who I’m trying to convince, me or you.

I’m totally trying to convince me! No doubt about that, folks. I need to believe this. I need to believe it with my whole heart or I don’t know how to go forward and there is only one option available to me and that is to keep going. Keep going until I can’t anymore – then maybe find a new place to go where I can go in my mind using that brain I am going to work like hell to protect. I am also 100% aware that I may not be able to even do that! I may have zero control over how long it is that my big beautiful brain remains such but I can’t let myself think about that. It paralyzes me instantly. I much prefer to be paralyzed slowly, over time, the way I am right now.

I know I’ve got horrible days ahead of me. I’ve had a few already, if I’m honest. I spent a few days where I burst into tears at random fifteen-minute intervals. One morning as I struggled to stand up straight at the sink while rinsing cat bowls because of the intense pain in my back and legs, I accidentally knocked a large glass pot lid off of my counter on to the stone tile kitchen floor. It exploded into so many pieces in so many directions I could do nothing but cling to the kitchen sink in my bare feet and reach as far as I could for the electric stick broom knowing I was either going to cut my feet to ribbons or fall over and cut the rest of me, too.

It took every ounce of energy I had to clean up that disaster. My entire body was on fire when it was over. I wanted to sit on the floor and cry but I knew if I got down there I might never get back up and I really didn’t want to call for help while I was in that condition. Not at 6:45AM.

I got the cats fed. I got myself to a chair and THEN I cried until I couldn’t breathe. I cried and cried and cried. I noticed sparkling little shards of glass that I’d missed through my tears. I didn’t have the energy to get the real vacuum from the basement (stairs were not an option at this point) but once I collected myself a little later in the day I called my mom and told her what happened. And as luck would have it, she had a tiny cannister Hoover vacuum just perfect for the task. She came over a little later that day and we cleaned it all up. Disaster averted. Breakdown complete. Mom saves the day. Again.

This is all to say that I don’t want to be the Widow again.

I don’t want people to be afraid to talk to me or worried about upsetting me or thinking tragic thoughts on my behalf. I don’t want to think that way about myself. If it’s denial, then I will embrace denial with both arms and give it a big sloppy kiss. I have to keep going because I see no other choice! Way back then when I became a young widow who appeared to be holding her life together like a pro, people would ask me how I pulled it off. “How do you hold it together? How do you not fall apart? How do you do that?” And the answer was quite simple.

I didn’t. I didn’t hold it together at all.

I allowed myself to fall apart over and over again. I usually did that in the privacy of my own home, but it was better for me that way. I was crazy worried about me but I didn’t want to worry about you worrying about me too. I held it together in public because I had no other choice. There is no other choice! You do what you have to do. And I’ll do the same thing this time with one big change. I will be more honest. I will talk about how much this sucks and I will let myself be human in front of other humans. Maybe THAT is the real difference between 30 and 52.

It’s the realization that super shitty, really bad things happen in life and if you’re lucky, people will want to help even if that help is lifting my legs manually up on to a step, or doing my laundry or riding me to yet another doctor appointment or letting me do a meeting by phone or planting me some pretty flowers or just sitting and watching me cry (like Adrienne and Kara did via the most amazing group video chat ever the night of my Cleveland Clinic appointment).

I have decided to be a human with primary progressive MS. That’s pretty much all I can do.