Clearly there’s been some radio silence lately. Truth? I had every intention of getting back to blogging daily after our summer vacation. I had lots to tell you – “I’m working on a fun new side project (and no it’s not a book)” – and lots to show you – “Our little guy turned one!” and then BAM, I had an MS attack and have been, ahem, down for the count. This was by and far the largest episode to date and if I’m being honest, I’ll tell you that it scared the shit out of me. So yea, this is me, exposing my wires to you and putting it allllll out there.
Settle in, friends, it’s a long one…
I’ve never liked to talk that much about this disease of mine. Instead I kind of stick it in the zippered pocket of my purse and pretend it doesn’t really exist. I mean, I can feel it’s weight, but it’s ugly and hell, we can’t have UGLY on display. The horror. Because it’s mostly impacted my vision, it’s been relatively easy to keep quiet. Nobody has to know I’m almost blind in my left eye, or that I have huge floaters I try blinking away throughout the day. Unless they really studied me, nobody would notice my new lens as a result of cataract surgery, or that my eyes are now two different colors as a result of chronic inflammation. That’s the thing about MS; people can’t really tell that you have it…until they can.
The past four years have been a blur, both literally and figuratively. I’ve spent them being a newlywed, a newlywed with MS, struggling to have a baby, having a baby, keeping my day job, starting and keeping up this blog, figuring out what I want to do professionally, and now, figuring out what I want to do that might sustain our family financially when I can no longer domy day job. Which I fear, friends, is not that far ahead in the future. There are no words to describe what it’s like to be locked inside your head. Recently I sat at work, an advertising copywriter, and could not put one sentence together. Not one. Yes, I was having trouble seeing and ultimately, trouble walking, but not being able to complete a thought? It was the most terrifying moment of my life. And the first MS related incident I couldn’t hide. For the first time in four years, I realized that this progressive disease of mine is actually going to progress. And suddenly, I knew it was time to make some decisions.
Now, let me be clear. I am quite possibly the worst. Decision. Maker. EVER. My husband knows better than to ask what I’d like for dinner, and my friends laugh when I’m left to choose a time for drinks. So the idea of deciding when to begin treatment has been COLOSSAL. Shit, I’ve switched neurologists four times for the love of God. Not because they sucked or kicked me in the face or anything, but because maybe just maaaaaybe one had better insight/ideas/411 on francy new drugs than the other. Crazytown people, I’m telling you. Regardless of their differences, every single doctor conveyed the importance of beginning treatment sooner rather than later. All well and good, unless of course I was interested in having a baby. And I was. The hubs and I had been married a solid month (after dating four years thank you very much) when I was diagnosed – me at age 30 and him at 37 – and had always pictured our family portrait with, well, family. We spent long nights talking about our options. Should we have a baby? Could we have a baby? Is it smart to put off treatment? Is it responsible?? The decision we ended up making was that life does would stop despite our shift in circumstances, and we were meant to have a child. (Please hold your criticism until the end. Sincerely, Management.) Since nothing in this life is easy, it obviously took me several years to get pregnant. I had a miscarriage, my cycle was a disaster from steroid treatments and I got to the point where I felt like maybe I just wasn’t supposed to bring a baby into this world. And then it happened. And he’s been the single biggest blessing in the history of blessings. I wouldn’t change my decision to put off meds for anything in the world, and in fact, have been so preoccupied with him over the last 14 months that I kind of forgot I had MS. This flare though, not only brought me back to reality, but forced me to confront a NEW reality.
Which brings me to today, and my RIDICULOUSLY long post. The truth is, it’s been kinda odd for me on the blogosphere since the jump. As I think a lot of bloggers do, I’ve always kept the most personal parts of me personal. I’ve never used my husband’s real name (Terry) or my son’s (Tyler) and while I’ve made mention of my issues I’ve never shared the dirty details. Partially because why would you care when you’re here to check out my mid-century ramblings, and partially because once it’s in print, it’s real. Well, shit be real, folks, and for whatever reason I feel like it’s time to own it. Having this dialogue with myself and being so honest with you helps me face this new sense of normal. The one where every day that I am strong and healthy is one to be cherished. And the one where I’m real about my limitations. I’ve started treatment and come to terms with the fact that another child probably isn’t in the cards. We’re changing the way we’re eating and what we’re spending money on. And I’ve accepted the fact that over the next few years, life as a whole will undoubtedly change. Yes, there is plenty of time to cuddle Tyler as we read about dancing bears and magical bunnies. Yes, there are plenty of walks yet to take as the shadows get long and the air cool. I know I will enjoy many more weekend road trips with Terry, and many more reality shows with my best girlfriends. I will wrap presents and open wine and watch sunsets and dance in my living room. But I will also know the precious gift I’ve been given with each and every unfurled ribbon and brilliant sky. In my new normal, I will be there when my son puts on his cap and gown for graduation and boutonnière and tux for his wedding. I may not be able to help him tie his bow tie or embarrass him with my kickass Robot on the dance floor, but I WILL be there. Every day. Every step of the way (no pun intended). And for that I am truly blessed. In this new normal, I am blessed with a disease that leaves my life in front of me – limited or not – and I’ve got a lot of living to do. No, this doesn’t mean I’m walking out on you to tackle a bucket list, it just means I’m taking a little break to navigate uncharted territory. And after all today’s over-sharing, I feel confident that you’ll understand it’s really NOT you, it’s me. And baby, right now, this me just has a lot of dance moves to work on. xo
(cartoon via Gemma Correll, image via Sheen and Swanson, print from Doodling A Smile, photo by moi)