The thing is it doesn’t really matter how fed up I am. When you go through something like this last relapse, you tell yourself that it’s a minor set back. It’s just a hiccup. It can’t last forever! But then 6 weeks go by and you’re still feeling it and you start to think maybe it will indeed last forever.
There’s a lot of waiting involved when one has multiple sclerosis, particularly if one is young in their MS. Like me. I’m about 21 MS months old. I’m practically a MS baby but I’ve had my share of waiting in those 21 months.
First I waited to get approved for Tysabri. Then I got approved and I was waiting for the 6th or 7th infusion when I was told I’d feel better…and didn’t. Then I went through the 2-month flush before starting ocrevus, two months of feeling like such utter excrement, I could barely get myself out of bed. But once again, I got through it by telling myself that this amazing new drug would be the one that gets me back on the road to feeling more like myself again, but the thing is, it didn’t. I had about a month of feeling suddenly energetic and it felt awesome. Then, out of nowhere, I had a relapse two and a half months after my first Ocrevus infusion. I landed in the hospital for four days. Then I was waiting again, entirely focused on when I could get out and get back home so I could feel better. Then I got home, finally. But the feeling better part didn’t really happen.
I mean, it did. It did get better but when “better” just means occasionally throwing up as opposed to every time I ingested food and feeling like I’m drunk only 75% of the time versus 90% of the time but you could argue (and you would be correct) that I am better than I was. But better, better? Nah.
I’m back to waiting for the next great hope. That would be November. I find myself looking forward to November when I get my second full dose of Ocrevus hoping that maybe that will be the magical dose that helps me feel better once more…But the little voice in the back of my brain whispers, “Then again it might not…”
This disease requires a long game that I have never developed. To have this disease you have to be OK with your entire life being turned upside down over and over again, with more promises of “better” that come and go without the relief you were told would be coming.
So you focus on the next milepost. The next thing that might get your “overly active” disease under control for the first time since this whole crazy ride started so you can maybe not get back to “normal” (normal is probably never to be again) but maybe establish some new normal where this disease doesn’t affect every part of my every breath of my every second of every day. I have the experienced MS-er friends. They, who are much older in MS years than I, assure me that this is coming. I believe them! But sometimes it just makes me feel stupid for believing in fairy tales.
I did make it back to work last week. I made it to the office two days in a row. It felt awesome to finally leave my house but I’d be a liar if I didn’t admit that it was hard as hell. I practically had to force myself out the front door. I don’t look like myself. I forgot how to wear real clothes. Putting on makeup (which I usually enjoy) felt like putting on a disguise, someone impersonating the old me, not me at all.
I was so very happy to be out there, I really was, but I was also scared to death. What if I’d used all of my good hours in those days getting myself out of the house and into the office? What if I ran out of good hours before I’d make it home again? What if I had to use one of my handy portable puke bags but this time not in the privacy of my own home but in public among people who look to me for leadership? I’m supposed to be inspiring, the inspiring leader of the office! I was afraid for every minute of every hour I was outside of my home. Who have I become?
I’m back home now for a week of rest taking a long-ago scheduled week of vacation because I think I obviously need more rest. Ya know what gets tiring after a while? So…Much…Rest. Rest is wearing me out. Resting a faulty body that never feels rested no matter how many hours I’ve been able to stay unconscious, though I know it’s the best and only thing I can do, it feels anything but restful.
Nobody is pressuring me. Everyone, from my peers to my team to my colleagues and bosses is being as supporting as you would expect them to be in a situation like this. The one person who isn’t cooperating is probably me. I have higher expectations for myself. I’ve not allowed myself to believe that THIS life is my new life. This is just one of those waiting periods, another thing that I need to deal with, wait out or get beyond. I tell myself that I love my quieter, slower life but much like anything else I’ve had imposed on me, I might like it but I don’t really want it. I only like being quiet and slow when I’m doing it on my own terms. These are decidedly not my own terms. I’m not sure who’s terms I’m working with but MS and its terms are not acceptable to me.
I struggle with the whole phases of grief thing. I remember it well from when I went through this after my husband died almost 20 years ago. It used to frustrate the hell out of me to realize, as I was going through it, that those phases didn’t happen in a nice, planned, consecutive order. They happen all at once. All at the same time, sometimes completely out of order. When you think it’s over, those phases start happening again all willy nilly. Once you’ve experienced grief, you know that nothing about grief is at all tidy. You cannot control it. You just have to let it do its thing and wait.
People will tell you that you will be able to see the other side when you’re grieving but you really can’t. When it has moved on and you have a new life, it’s almost like a surprise. When did that happen? You really can’t put your finger on it. Once it happens, you wonder how you never noticed it as it took over. The feeling of seeing grief in your rear view mirror is more shocking than that. It’s like an old childhood friend who suddenly moves away. You’re sad because you’ve spent so much time together that it started to feel comfortable, but you guys were never really very good friends. You know you won’t miss your friend, grief, not as much as you thought you would, but then again, it will never really be gone. You will always feel it. Lingering on the edges of your life that is mostly happy it will be back there to remind you that it could all go away. Poof. Just like it did once before.
There is a silver lining to all of this. It’s a pretty obvious one, really. The silver lining is that I’ve done this before. I can do it again. I thought I’d never get any sort of normal life back after the one I had went POOF, but I did. I actually made a life that I really started to love. I just have to do it again!
We all have these transitions that we go through all through our lives where we are suddenly forced to acknowledge that having plans, being focused on anything but the moments, is really kind of a lie. “Nothing gold can stay.” Ponyboy Curtis taught me this when I was a pre-teen.* It might not be gold, anymore, but you learn to get great joy from silver and bronze. Sometimes you even get some platinum here and there. My slow, strange life might change or it might not. It might just one day feel like it should. Real. Until then, there’s always November.
Also, it’s not hot anymore. I can’t even believe I’m saying this but I almost turned my furnace on tonight! I thought better of it. But I almost did. It’s gorgeous sleeping weather. I better get to it.
- “Nothing gold can stay” is an iconic line from one of my favorite childhood books, The Outsiders by S.E. Hinton who was referring to a poem by Robert Frost in 1923:
Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.