You don't know what you don't know

Ah, the lazy days of summer are now upon us... Unfortunately this often means air-conditioning hibernation for many MS patients-myself included.  However, this summer I have been blessed with central air so I may have to hibernate, but at least it’s not just one room.  In my old digs, I spent many a summer day stuck in my bedroom, for it was the only room cool enough for me to function in.  So today, I shall give thanks for my improved housing situation and the dehumidified freedom it provides.

 

But alas, this week I must share a gripe as well. On Monday I had an appointment with my primary doctor whose office is in Budd Lake.  So let’s count the multiple variables that were working against me that day: It was quite hot out. My aide called out that morning so I had no help getting dressed or putting on my shoes. I was as devoid of energy as I have been the past month.  So-the odds were already somewhat stacked against me.  I did not even bother trying to wrestle shoes on so I just went barefoot.  I somehow made it to my car where I was blasted with heat and had to sit and be immobile for a bit. But I ultimately made it into the car and used my handy cloth belt to drag my legs into position. Hooray, it only took me 90 minutes to get dressed and to the car!

 

The drive itself was quite fun actually- I hadn’t taken Falcor for an extended journey in a long time.  When I got to the doctors office parking lot, the handicapped spaces were taken.  Mind you, even the ‘accessible’ space often IS NOT due to insufficient room to deploy my wheelchair ramp.  So I parked diagonally across two spaces, trusting that the handicap placard AND the writing on the van that states, “ramp installed, do not park within eight feet” would excuse my having taken two spots.  After my appointment was over, I hauled myself back into the drivers seat (only 15 minutes that time!) and was about to start the car when I saw it: a note tucked under the windshield wiper.  I couldn’t reach it from the window and NO WAY was I getting out and in again  just to fetch it, so I called back up to the office and one of the receptionists came down to get it for me.  My heart sank before I read it because I just knew it was going to say something ignorant or worse.  It went something like this, “Just because you have that blue tag doesn’t give you the right to park anywhere you damn please...” There was more written about how rude and inconsiderate I was, but I stopped reading.  The receptionist, who’s always been nice to me, said she thought she knew who wrote it, that it was someone from another office in the building and that I shouldn’t take it personally because that woman is a notorious b***h.  But of course, my hyper-emotionally self was crushed.  Somewhere nearby was a person who probably felt vindicated in writing that note to me, not knowing the real reason I took two spaces.   It’s not like I drive a friggin Ferrari, it’s a minivan!   It made me so unbelievably sad to think how justified that schmuck felt, how he or she probably drove off thinking they put me in my place.  If only they’d opened their eyes a bit to see the warning on the van door OR the folded up ramp, were they to peek inside.  That jerk got to feel righteous about writing that note and I just cried out of frustration.  I realize the ‘able-bodied’ world around me cannot always grasp what it’s like to be a slave to a wheelchair. But there are days when I just wish they could roll a day in my life-or any handicapped person’s life for that matter.  I often feel there is an unconscious conceit in being able-bodied, that state of ‘ignorant bliss’ that enables the average person to take their legs or arms or brain for granted.  

Showing Improvement

Greetings and salutations from my recliner. I prefer to enjoy this spot for relaxation and it IS where I typically spend lots of time...but the past three weeks, it has become a magnet towards which my body seems annoyingly drawn. Spending hours a day (and night) in a recliner would seem enviable to most but trust me-it gets crazy old. I've memorized more commercials than I'd care to admit and at some point, I fear I may turn into a Magic Bullet or some form of spray-on hair.

Since last weeks blog things have been improving, albeit painfully slowly. I've been making more attempts to spend time outside (but the poopy rain sure isn't helping me in that endeavor!) my next 'hurdle' will be to take a spin in my beloved Falcor. I'm haunted daily by the sight of him parked, woefully unused! I worked waaaaay too hard to get that car to not use it! And so I shall-as soon as these daily downpours take a break!

In other news, this week we had a group meeting held here at Crescent Commons. Gathered were the  residents of our complex as well as Orchard Commons and Roberts House, two more of the communities founded by Bergen United Way. Also in attendance were assorted family members of the residents. It was a short meeting and a nice chance to meet more of our neighbors as well as hear about joining Crestwood Lake.  Naturally, I was curious about whether the grounds are wheelchair accessible and it sounds good-but I'll likely take a tour to be sure. And considering the lake is *right across the street* I'm going to sign up. I hope to make it a nice place to read a book and bring family to when they visit Apartment Awesome. I might have to start calling it Apartment Awesomer.

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!

Being short on my earth day excursion

This week I had a mini Earth Day excursion with my sister and niece. We wandered around the back parking lot of the complex picking up litter. For some reason the line of trees by the train tracks was a graveyard of plastic bags. So as we made the rounds, I carried the garbage bag and they collected icky stuff using both my handy grabber and a pair of kitchen tongs. There was my cute niece, doing her part to beautify the world a little bit and looking awfully cute while doing it. The use of a kitchen tool may seem odd, but I’ve brought those tongs to many an excursion, most often to ShopRite or Target, to grab things off higher shelves. Most times there are nice folks to ask for assistance but the tongs are a nice backup. Mind you, I am tall (5’9”) but that doesn't matter so much anymore as being wheelchair bound has rendered me, well, short. There are many days where I miss being ‘normal’ but oftentimes I miss being tall the most! I was proud to be the go-to gal for reaching high cabinets and always psyched to be right next to the teacher in class pictures! Yet another MS adjustment I’ve made and continue to make peace with-asking for help.

I wish I had taken a ‘before’ picture of the back lot because it really does look better after just a bit of litter collection. And I was proud to include my family in my Commons pride

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This Friday we are having a game night in the common room with the Allendale Women’s Club. Word on the street is that we’ll be playing not for money but for scratch-off lottery tickets. I LOVE instant lottery tickets! I used to have pretty good luck with them, even won 500$ once! So wish me luck-I hope to regale you next week with my amazing game night victories, but we shall see...