It’s been a while, huh?

Life has gotten in the way of my writing. So much life! Life with MS, on top of that. Most of you know that I lost one of my kitties a week or so ago rather suddenly. I foolishly had no idea how hard that would hit me. He was my youngest. My most social. My shadow. The house feels empty without him and there are three more kitties here every single day!

It’s strange to me, the nothingness that is left behind when someone or something dies. It’s like a vacuum. An absence of there-ness that feels like a tangible thing creating an oxymoron out of thin air. It’s been weird for me to be back in the place where I am randomly bursting into tears. I’ve gotten so good at controlling my tears that it always throws me off when they defy me and start falling anyway. I’ve decided, after much pondering and much great advice, to let the tears fall. It’s not fun, but it’s reality so I’m trying to embrace it.

I was given two more days of high-dose oral prednisone last week as well, which were enough to get me through one work related nighttime concert extravaganza but not enough to get me through four consecutive days of work topped off with a client dinner for which my CEO was in town to attend.

Day one through three of the work week I was kind of afraid to talk out loud about how well I was walking. I may or may not have allowed myself to forget how crappy I felt before those steroids. It felt so good to be back in the office!

On Thursday, the day of my dinner event, I woke up and everything was just wrong. I felt shaky and off balance. Not dizzy so much as unsteady – like I was walking on a boat. I managed to get myself dressed (such as it was…it was not my most inspired outfit) and out the door very carefully. But when I started to walk across the lawn to my car my legs were not right at all. I was trembling, nearly falling at least three times in less than 20 feet.

I got in the car knowing that I would need help getting into my office from the valet across the street if I wanted to make it to my office without face-planting. I texted a few folks who weren’t available. I tried a third and thank god, someone answered my call. Lindsey, one of my team, was more than happy to meet me at my car to help me into the office without eating pavement. When she got to my car, she asked (as most people do in this situation) what I needed to help – did I want to hold on to her arm, her shoulder, her waist. I asked her if we could hold hands. For some reason holding hands feels the most secure to me. How funny is that? Me, walking around downtown Pittsburgh holding hands with random people who are kind enough to act as my personal walking assistive devices.

I haven’t held hands with anyone in a long time, before these last few months. Now, I’m a hand holding fool. With Stanley on one side and someone’s hand in mine on the other, I can usually make it where I need to go. As long as it’s not much further than a few feet, of course, but in a pinch, a handy hand is the difference between being there and not being there. Wherever there happens to be. To be honest, I’ve started to enjoy this whole hand holding thing. I find it comforting. Me! The loner of loners has become a rogue hand-holder. Be careful if you see me on the street! I might randomly reach out for your hand.

I had to ask our CEO to drive to the dinner (in my new car!) which he thoroughly enjoyed. He obviously could tell I was having a hard time. For the first time, on the ride to dinner, he asked me what it was like for me having this disease.

As I started to explain, my litany of strange things that are now my only reality, I could see his face get tight. His face looked concerned. His face looked sad. It’s funny how sometimes all we MS’ers wish for is to be understood. We just want one person, some normal person, to understand that this shit is so fucking hard. It’s so hard because it is completely invisible and it is completely unpredictable. I literally never know what my day will be like – not until I try to function do I know whether or not functioning is going to be a success on that day. It makes plans difficult. It makes work commitments a challenge. As I talked and I watched his face change as my voice explained the pervasiveness of this disease, how it affects every system in my damn body, how it is affected by extremes in the weather (hot, cold, rain or sun), how there is almost always pain and how some days I don’t even believe this is even happening – it hit me.

What hit me is that being understood is almost as bad as not being understood. I will never be like other people ever again. Nothing in my life is normal. Everything normal people do, that they take for granted and do without thought, requires military-level strategizing for me. Even dinner conversation is strange.

At one point during our dinner, one of my favorite clients asked each of us for our top three bucket list items. Jesus. Really?

I never used to have a bucket list because the straight up truth of the matter is, if I wanted to do something, I usually just did it. I guess it’s a good thing I did? Because now, when posed with this question over antipasto I literally went blank. My boss’s list included going to Australia, attending the Oscars and attending his daughter’s wedding some day (she’s 4 now I think? I thought that was sweet)…My clients also had travels and adventures on their lists. When it came to me, I was thinking to myself, “Holy shit, make something up! Don’t tell the truth for the love of god!”

But of course I told the truth. I seem to be incapable of imaginative lying when it comes to how I think about my life now.

My bucket list? I want to be happy. I want some kind of quality of life. I want to keep working because using my brain is the only thing that I can still do really freaking well no matter what and it keeps me going. I want happiness and health for the people I love. Beyond that? I’ve got nothing. The mere idea of traveling right now fills me with dread. Adventures? I wasn’t very adventurous before I was diagnosed with MS. Attending big glamorous events? Sweet Jesus. If I can’t wear my yoga pants and a black t-shirt it’s probably too much work for me. At least it would be right now. And in the middle of a terrible MS day where my body is moving through the world full of normals at the pace and posture of a 200 year old woman, it’s hard to come up with  lofty goals.

My goals are simple. I guess I’m ok with that but that doesn’t make regular dinner conversation any more comfortable or effortless for me. Normal things aren’t normal anymore. I’m not normal anymore. I wonder if I will ever be able to fake it again?

We had a lovely evening. I am incredibly lucky to have clients who are friends, and a CEO who I truly like, admire and feel comfortable around. He’s a big important guy, no doubt, but he’s also a human being and he’s not afraid to let that show. It’s rare in my business for bigwigs to have that quality and I admire it a whole lot.

Once I got done trying to explain my life with MS 101, he said to me, “I don’t even know what to say. It seems like you’ve taken the hit and you’re determined to keep going and that’s pretty amazing.” Or something to that effect, which was super kind and meaningful to me. And yet, I had the urge to protest and explain, “But don’t you see? I have taken the hit. But the hits keep coming. It’s all one hit after hit after hit and jesus christ I’m tired and I just want to feel normal again! For even ten minutes, I want to feel normal again! I want the hits to stop coming.”

But I didn’t say that because that’s too hard to grasp. It sounds hopeless and I’m not hopeless I’m just overwhelmed – another feeling that used to be foreign to me.

It’s like I want to be understood and ignored all at the same time.

I want to hold your hand, and I want you to ignore me, simultaneously. I need your help but I resent needing it. This is a challenge where none of my expertly honed professional survival skills is even remotely useful. Not anymore. When I wake up on a random Thursday where I have regular life things on the docket, there isn’t a damn thing I can do about it if my body refuses to cooperate. I just have to stumble through it – no matter how awkward, painful and embarrassing it might be. This doesn’t make me feel accomplished. It makes me feel like a fraud.

I got home after my dinner around 10pm and I knew I didn’t have the energy in me to feed the cats AND scoop (taking all the steps down to the basement and then back up to the second floor where my bed is) so I texted my nephew, Alex, who is literally my life line. The kid saves me on the regular. He also makes me laugh and lord knows I need that.  I was in bed when he showed up after his shift ended. He sat next to me on my bed and listened to me tell him about my night and how much it sucked but didn’t suck and how confusing that was and how incredibly DONE I felt.

And he said, “But you did it, AB. You did it. You killed this day and you should be really proud of that.”

When did almost-21-year-old kids get so wise? I went to sleep feeling sad, missing Roger (my cat), feeling bone tired and physically incapable of getting out of bed even to pee – but I felt peaceful too.

I will probably never get used to the extremes of this disease. How one minute things are almost OK and the next minute I’m standing in my front yard trying to stay on my feet long enough to get to my car. I will probably never get used to not having a normal bucket list or pithy comebacks over friendly dinner conversation. I will never get used to not caring about things that used to be so important to me.

But I will figure out some new way to be. That is the commitment I need to make to myself. I can’t be who I used to be but I will work out who I am now and try to be OK with that in spite of everything.

And for the next three days, I will rest, recover and try to think as positively as I can even when my body is failing all around me. I still have this brain. I’m gonna focus on that. Even if it’s kind of broken.