Another Decade to Reflect

Last week I joined the esteemed ranks of the ‘closer to 40 than 30’ club. I had my friend and her kids over for dinner and my sister came with Dairy Queen. Instead of a whole party that may stress me out, I enjoyed some of my favorite folks with a fabulous ratatouille followed by my favorite DQ cherry dip. I got calls from both parents and every sibling, lined my awesome birthday cards on the bookshelf. By the end of the day, I was pretty worn out but I think I fared pretty well overall. In past years I haven’t necessarily wanted to make a big deal out of my birthday because sometimes I just didn’t feel worthy of celebrating. Thankfully this year I saw fit to accept good tidings and it made for a lovely day.

Funny, it seems like just yesterday I was deep in the throes of my quarter life crisis. It’s just occurring to me now just how much has transpired since then...A thought quickly followed by my realizing how difficult it would be for me to summarize the last decade. All I’ll say is that on my 30th birthday I vowed what an awesome decade it would be since the 20’s had been so tumultuous. I’d like to think that so far, that prediction has been mostly correct. I mean, sure-I went from cane to walker to wheelchair but even that wasn’t as bad as the fear I endured in my 20’s waiting for just that to happen. There was something so damningly dark about the unknowns MS had in store that at times it’s almost preferable to be in a wheelchair than to fear it lurking on the horizon. If someone had asked me ten years ago if I saw my life unfolding the way it is today--I’d have thought them mad. For all the years I spent pining for my legs to work just a little longer, there was always that cloud over my head reminding me that it wouldn’t last forever and that was pretty brutal. I’ve gained a certain mental freedom over the years that I've lost function. Freedom from the ever-present ache of dread. It seems so foreign to see loss as a gain. Right now, today, I am reflecting on how much more possibility my life holds now that that dread has waned. No longer do I have to tread lightly for fear of what the next week, month, or even year may bring... So this week, I begrudgingly leave it at this: I mourn the loss of my ambulatory self but am relieved at the death of uncertainty. At least this way I know where I stand, so to speak.

"This is where a mother wants to be"

My Music: Corinne Bailey Rae

This past Sunday had a rough patch for me, physically. I had family over for a combined Mother’s Day/upcoming birthday party for me and my sisters. Let’s start with the great part-the fact that everyone came over to my place! This is wonderful for me not only because I now have a lovely space of my own to show off but it pretty much guarantees my attendance at family functions. Before Apartment Awesome my presence at parties or gatherings was spotty at best (and still is) but the apartment has taken away the stress of wanting to be out amongst the world but often having no choice in the matter. Now oftentimes, the world can come to me and it’s been beyond fantastic thus far.

And yet there are days, like this past Sunday, when everything should go right-after all, I was in my comfort zone and blissfully absent were the usual stressors of bathroom issues, the fear of an unknown location, and exhaustion from driving (assuming I was able to get dressed and get to the car.) But I’m afraid MS doesn’t really care about these things sometimes. Actually, MS doesn’t care about anything, but I digress... It was a fairly warm day and I neglected to turn the air conditioning on because, well-I guess I was too excited for company that my body steadily overheated to the point of uselessness. I was essentially stuck in my bedroom on a chair and completely devoid of any strength or power. Getting up and around is never easy, mind you, but usually I get where I need to go-it just may take a few attempts. But this was different. I felt like someone had attacked me with a lifeforce vacuum and left a limp version of me behind. So I sat there for an hour and a half, making sporadic (useless) attempts to push myself up with my arms. My family began dinner without me-at my insistence-and my sister and mother took turns staying with me, ready to help me up once my strength returned. Eventually I requested to just be alone and distracted myself playing games on my phone. I KNEW that this couldn’t last forever-I’ve been similarly sapped of energy before and eventually it passes. But I cried-upset that this stupid disease was robbing me of time with my family again. At one point I said to my mother, “Some Mother’s Day for you-stuck in here with me crying.” Her response? “This is where a mother wants to be.” Amazing.

Well I eventually worked up the strength to get up and was able to eat with my family a bit. I watched my niece dance around and my nephew copied her every move. This day was proof that I’m (slowly) getting better at handling my worst situations and the hopelessness that accompanies them. I don’t know if I’ll ever be able to just brush off these humiliating experiences. But I am shortening the time spent between misery and recovery.

Cooking is once again available to me.

Now Playing; Paula Cole

What to do on such a dreary day?? Why, bake cookies of course! I’m not quite brave enough to try making them from scratch so I’m still getting my feet wet by using Betty Crocker mix. To the more accomplished bakers out there I am sure this is pure sacrilege but cut me some slack, I’m new to this domesticity thing... What I DO have is a fantastic hand mixer (another housewarming gift) which has opened my eyes to all sorts of new cooking possibilities-cookies being the most obvious. Mind you, I do not have an apron on but I still feel pretty June Cleaver-esque just by wielding a mixer and some parchment paper!

Cooking is yet another seemingly mundane activity that I am only now beginning to appreciate since moving to Apartment Awesome. It’s not like I've NEVER tried it before-I took Home Ec in 7th grade-but this is the first time in 7 or 8 years that I've had my own kitchen! In Budd Lake I had a great makeshift kitchen with a double hotplate, microwave, and mostly dusty George Foreman grill. I had recently purchased a tabletop oven but it wasn’t the same. Of course there was a full kitchen upstairs in my mom’s part of the house but I could no longer use it because I couldn’t climb those pesky stairs (I crawled up and down the stairs for a while until my legs stopped working altogether.) It’s difficult to convey just how wonderful it is to now have a ‘grown-up’ oven and four working burners that don’t pose a substantial fire risk. I adore having a sink to soak my fun kitchen tools and a dishwasher to load! Before, armed with just a tiny pedestal sink to wash my dishes in, I usually did my best to avoid using large pots or pans (and had to hover over the bathtub to wash them when I did.) Unfortunately this often translated to meals that required a minimum of effort-often just the microwave. And the times I did feel up to cooking an actual meal it was always exhaustive let alone have the energy to clean everything up in my tiny sink.

Don’t get me wrong-it’s not like I’ve never cooked before- I made a mean eggplant parmesan once upon a time! But that was when I was ambulatory and living independently. My MS made it impossible to have that kitchen anymore and I really did make the best of my kitchen setup in Budd Lake. But it was a shadow of what I could do before and I felt resigned to that new normal of ‘good enough.’ And there wasn’t anything wrong with that, really, I was able to make do and I certainly wasn’t destitute but my new kitchen has emboldened me to look at cookbooks again. I now find myself pondering buying a wok or a dumpling press. That may seem like an odd thing to get giddy about but it’s just another facet of life that you don’t truly appreciate until it’s gone. So bring on the recipes because I’m just starting to spread my domestic wings.

Simple challenges made more complex

My music: Evita Soundtrack

I bet you're wondering if I cleaned up at Game Night... Sadly my lottery ticket losing streak continues. I played three rounds of Bingo with a variety of residents and Women's Club members. At one point we ran out of bingo chips and began using pieces of chex mix to mark our cards. But our efforts were in vain, as ALL THREE games were won by a very lucky guy named Joel. And that's after he changed his card once too! I didn't hear whether or not he won big bucks on his scratch ticket prize but I'm guessing no, because he DID promise to share any significant winnings! But no matter for the point of the evening was just to mingle and have fun amongst ourselves and that we very much did.

Now to parlay this fun 'evening out' into continued inspiration to accomplish other life goals. Truthfully, after the exhaustive year leading up to my move here, I've been in a four-month 'get stuff done' holding pattern of sorts. Having climbed the mountain of angst which is Medicaid, I felt entitled to a break from paperwork and red tape. But now with the arrival of spring comes my new set of mini 'keep my life in order' goals. I've got to find that new neurologist-likely will be going to the MS Center at Holy Name Hospital. There's also the pressing issue of finding a new dentist. Now I know what you're thinking-why don't I just call that chummy gal from 1-800-Dentist?! Ah, if only it were that simple! First I just tackle the usual hurdles-finding a doctor who accepts my Medicaid HMO and is hopefully located reasonably close. But my pesky wheelchair-bound status makes things even harder because I cannot get into a reclining dental chair like others can. I've got to find the elusive dentist that is willing to hover over my reclined wheelchair to do the work. Plus-how is the dental hygienist going to optimally place the Mr.Thirsty suction straw thing??!!! Ah, me-I'm sure it won't be that terribly difficult but it's just another task that must be tailored to my life in a wheelchair. This is all assuming that the office is handicap-accessible of course!

Did I say that I had lists to tackle?!? Yeah, let's conquer the dentist issue first. Wish me luck!