I have been telling myself to stay in the moment and not think too far ahead so constantly that it’s almost funny how much work it is, this whole staying in the moment thing. The moments are hard. One day, a mere 24 hours, is full of so many moments! Some of those moments are good. Some of them are awful. Some of them are just plain old ordinary moments.
The last few days were both awesome and horrible all at the same time. I let myself knit those many moments together into something that freaked me out a bit. I really try hard not to do it, guys. I really, really do. I don’t write about this to beg for encouragement or uplifting words – you’ve all been amazing at helping me keep on the bright side when the days look dark. It’s just that sometimes, even the words don’t help. Sometimes I get frustrated by the mere fact that I can’t muster enough optimism because I should be able to do that, goddammit, I have so much to be thankful for! But some days all I can think to myself is, “Degenerative…no cure…this will only get worse. Face it.”
An overnight work trip on election day nearly did me in this time. It was the normal stuff. A dinner date with new clients, followed by a 6 hour meeting to kick off our new relationship and get the work started. The debacle that was the presidential election kept me awake throughout the night so I guess I didn’t get my minimum of 8 solid hours. I probably got more like 4 hours of sleep when all was said and done.
I held it together. I felt in the moment. I felt like I was in my zone. I was doing what I do well and it felt good. But throughout the day I could feel myself going downhill. Every time I got up to use the rest room (kind of a walk from our meeting area), I could feel my legs not wanting to move. I did some Franken-walking through new client HQ hoping in my heart that nobody would notice. I tried to ignore it and life went on. I sat when I needed to sit. I got up and moved around when that was what my body needed. Things were going pretty well. I was happy I didn’t have to walk more than I had to but when I did, I told myself it felt worse than it looked and maybe nobody cared anyway.
Later in the day I was talking one-on-one with my new client, the senior client, about budget and legal stuff and details I needed to get in her head so we could talk about them later. As I was looking at her, I noticed that I was seeing two of her. I was seeing double. I tried to ignore it, and kept up with my spiel of things I needed to get on the table, and I believe I did that but the simple fact was that I was talking to two of her at the same time and it was hard to know where to focus. I cannot tell a lie. It shook me up.
When we left the office and headed to the airport, I was pretty much done. Fresh out of spoons. I knew I’d probably have no spoons for days after this trip, but I had to finish up some things. Regroup with the team. Talk next steps, decide on some details before we all went off to our various airline gates. I think that went ok? I mean, when I asked later, the people I was traveling with told me they had no idea I was in the shape I was in. That made me feel both better and worse at the same time! But off I went to my gate, headed to security telling myself that it might have sucked but it was almost over and I’d almost made it.
One of my best traits is that I am an excellent faker. I guess it’s kind of funny to admit here in public and all but when I don’t want to do what I have to do, when I need to show respect when I have none to give, when I have to play along even when that’s the last thing I want to do – I can usually pull that off. I think it might come with the territory of being an account guy in an advertising agency. You learn early on that you play the game or you fail.
The events of the day left me with the realization that even when I could pull it off to the degree that others were fooled into thinking nothing at all was wrong with me, my body was going to find a way to make me pay. The new normal means faking it results in pushing myself physically to the point where my eyeballs stop working properly (or my legs, or my knees or whatever it is on any given day) and my body sends me a clear message, “You will pay for this.”
I also did something I almost never do. I broke down in front of two co-workers while sitting in an airport restaurant gasping and sobbing while I panicked about what the hell was happening to me. Thank god my co-workers are so much more than your run-of-the-mill colleagues (thanks girls). It could have been a whole lot worse. But I was so far from being home and I was completely out of spoons! I was overwhelmed with thinking of all of the things I’d have to fake my way through in the coming months just to get this new account up and running; To keep things moving at work; To get our new office off the ground; To make sure my team has what they need to get the work up and moving; To keep my regular life moving in the direction that it needs to move. What even IS my regular life anymore? My spotted brain was swimming.
I pulled myself together. I made it to the gate. I sat in my seat on my American Airlines non-stop flight to Pittsburgh feeling like every muscle in my body was on fire. The four ibuprofen I took didn’t even take the edge off. I couldn’t see so well to read anything, so I just closed my eyes. I didn’t sleep – I was obsessed with wondering if I’d make it off the plane before I had to pee (again) because the damn seat belt sign was on again and we had already begun the longest ever descent. I couldn’t stop thinking to myself, “Traveling sucks when you don’t have a disease. Traveling sucks even more when you do.”
I got myself home safely even though my vision was a little wonky. I was grateful to the universe for arranging for me to come home to a house without cat pee anywhere where it wasn’t supposed to be (thank god, because I was quite literally on the edge by the time I walked in my door). I fell into bed knowing I had a 10AM conference call but I could still get some good hours in and maybe that would be enough to make me feel normal again.
There’s not enough sleep possible to make me feel normal again. I think I need to accept that there is no more normal. Until this thing falls into some kind of rhythm or pattern or routine, nothing will be normal anymore.
I was talking to a friend who also has MS and she said that she was diagnosed at 45 and had three or four really bad years before she felt like it evened out and she stopped feeling like the world was going to end every single day. That made me feel better (and worse…again) because I have to keep reminding myself that this has only been my first official year. I was diagnosed on December 1, 2015. Things started getting shitty about a year or 18 months prior to that. Maybe I’m two years in? Maybe I only have another year of two of this hell? Maybe?
Maybe I loved my life out loud once too many times (again). Maybe it was always going to get hard. Maybe hard is what life just IS. Maybe I’ll be spending a lot of time over the next few days sleeping in my happy place (shown above..the view from the best bed ever), trying to collect as many spoons as possible, so I have enough energy to face it all again. Maybe I’ll be able to fake it long enough to make it.