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...

I've been recognized!

This weeks installment is coming to you courtesy of iPhone email!

Here I sit, awaiting the inspiration necessary to fuel another week of Apartment Awesome... I'm more in a 'blog from my recliner' mode.  I do have an exciting tidbit to share: I have officially been recognized! I attended an in-service dinner this week, a MS meet and greet, if you will. It was held in our common room so I was happy to attend  without having to even wrestle on a pair  of shoes. Anyway, there was a dozen people or so gathered around, sharing MS stories and experiences. The woman to my left said, "Hey you were in the MS Society newsletter!" Indeed, there was a brief passage in the quarterly update about my blog and experiences at Crescent Commons. How awesome it felt to know, officially, that my words are getting out there, seen by handfuls of like-minded people and hopefully sparking an introspective thought or two.

This week also found me visiting my mom and cat in Budd Lake while in town for a neurologist appointment. My poor kitty was practically surgically attached to my lap, she wouldn't leave me alone. I cuddled her soooo much. But now I'm getting teary eyed just thinking about it, so I digress... My doctor doesn't take my medicaid HMO so I suppose I'll now begin the search for a new doctor-I needed to see someone closer anyway. Unfortunately that also means getting to know a new routine and regaling this new doctor with my sordid medical past. Ah well, yet another necessary evil.

Dipping into my fuel reserves

Now Playing: Courtyard Hounds

It’s so warm outside. It seems like a cliché but I really do feel a smidge happier when spring arrives. The Earth is waking up and she wants you to come out and play. Today I answered her call and spent a good portion of the afternoon out in the sunshine. In Budd Lake I usually rolled up to the picnic table on the edge of our driveway but alas, no such table here in Awesomedale (like what I did there?!) and so I have created a new tradition of popping the back hatch of my car and hanging out by the bumper. This way I have somewhere to rest my beverage or even hide in the shadow the car provides when the sun is being just a little too friendly. I’ve long had a love/hate relationship with the sun. Every summer I would plunk down on the sand and recklessly taunt the sun with my super-white, sunblock-free skin. This was, of course, followed by a yearly scorching lobster shell sunburn and my solemn vow to never be so stupid again! Indeed, my lifelong search for ‘just a base’ remains unrealized.

I find myself at an impasse of my own making...I’ve had lots of ideas about how to continue my growth here at Crescent Commons but in classic procrastinator fashion, I often find it difficult to convert ideas to actions. I keep waiting for a spark of energy to propel me in some sort of direction but I think my power reserves were depleted over Easter. It’s yet another crappy ‘perk’ to MS-if by some miracle I find the energy to join the activities I feel entitled to and deserve to enjoy, I’m very likely to ‘crash and burn’ in the days/weeks that follow. Enter Liana’s overly introspective thought of the week: Am I foolish to ride such a roller coaster when it would be wise to sit back and watch? Observing life from the sidelines may be the wise choice when it comes to energy (and sanity) conservation, but it gets awfully lonely. And so it continues -I dig into my fuel reserves and rally to life but almost always at the cost of my strength thereafter. How horrifying for me, a decidedly extroverted person, to spend my adult years passing on fun in deference to safety. I know I’ve been getting better at taking chances and not retreating to a hole when something bad happens, be it a fall or a mortifying bathroom incident. Mind you, when I say ‘fall’ I don’t just get up again I need police and rescue personnel to get up again. And the latter ‘incident’ seems self-explanatory but trust me-bathroom issues aren’t easily overcome either physically or mentally.

So here I sit, replete with ideas but anchored by fear and intimidation. How about you folks? When you find yourself shying away from life, how do you kick your own butt back into gear?

How appropriate at this moment that my ears get caught up in the closing lyric of the song playing:

“The feeling’s very strange

I’m waiting for the pain

And happiness can terrify me now

And you may ask me why I’m that way

It’s just the fear of wasted time”

GAH! Song lyrics to me are like verses of the Bible must be to the truly faithful-beautiful and sometimes confusing words that always come together and make your soul smile- in happiness, understanding, or even both.

Bitter-Sweet

Now Playing: The Very Best of Aretha Franklin

Hello world, we meet again! Despite being a ‘night person’ starting this passage at 10pm is pushing it, even for me. But I feel compelled to write tonight so here goes...

I’ve been going to Ocean City, NJ for 15 years now, at first for a yearly summer week long adventure and in more recent years, for Easter weekend. Obviously this tradition has grown increasingly difficult for me to accomplish as my physical disability has increased. Accordingly, my experiences there have been marked with both the positive memories of the ‘good’ years and more recently, the still wonderful but often frustrating reality of navigating my beloved vacation spot with my traitorous, wheelchair-bound body. Oftentimes with MS there are cognitive and memory losses but not for me. I’ve described my mental function as ‘obnoxiously intact’ while my legs bore the brunt of MS destruction. And so with every trip to Ocean City I’ve progressively lost my ability to enjoy what I used to. I can get to the boardwalk in my wheelchair but I am then met with the cruel presence of the sandy beach I can no longer traverse. And so it was this past weekend...I made it to the vacation town I love, that was a victory in itself! But just getting there was hard won because in the ‘excitement’ of packing for the weekend, I tired myself to the point that I was too weak to transfer into my drivers seat and found myself literally pinned between my wheelchair and the seat, with absolutely no strength left to even maneuver myself to the floor of the car. My vacation excitement quickly gave way to hyperventilating panic. The police and rescue squad came and it took roughly eight of them to extricate me from the car and hoist me back into my wheelchair. After all this, I did NOT want to take the trip south. I waited a few hours and stubbornly decided that this humiliating setback (I’ve had so many over the years that I’ve lost count) would not keep me from getting to Ocean City. So yes, I made it down there. But I cannot help that the trauma of the fall before then seemed to tarnish any fun I might have otherwise had.

Don't get me wrong- I did have fun over the next two days, having family sing-alongs and even a stellar game of UNO-but at the same time, I could not tear my eyes away from the beautiful ocean that mocked me with its inaccessibility. I was able to sit on the boardwalk and soak up the sun and it was sublime...but I had a tough time appreciating the glory of that moment because my mind kept wandering to years before, when I could walk on the beach, not just look at it.

So do I count my blessings and be grateful for the years I spent there as the able-bodied version of myself or do I let those same memories prevent me from enjoying being there again at all? I realize I've gone off on an introspective tangent of sorts but these are the rotten thoughts that so often rob me of my ability to enjoy life in the moment.   

A Little Gossip

Blog background music: 20/20 Experience by Justin Timberlake

Who else is loving the longer days?! I feel like a big lumbering bear that is just waking up from hibernation, anxious to break out of my cave and announce spring with a giant roar! Ok, so I probably wouldn’t roar, but perhaps a spirited fist pump while tilting my head up towards my beautiful friend the sun. Sometimes I feel like surviving the cold, dark winter is a yearly challenge for which the reward is finally seeing the first crocus poke up through the ground.

So in the spirit of new beginnings, I’ve been thinking of mini-goals for myself. Actually, they’re small parts of the overall mission to bring the need for special needs housing to the world around me. I’ve been enjoying the story-telling aspect of my experience here at Crescent Commons but I know it’s time to start making these hopeful words into actual new successes. I feel like it’s standing at the top of a waterslide...you know the ride will be amazing but OH MAN is it hard to take that first leap! So where do I go from here? How do I translate the giddy feeling I have every morning I wake up here into actual positive progress in spreading the word?

Certainly something anyone can do is share what they’ve heard about Crescent Commons, it’s like the best gossip ever (gossip to feel good about!) I’ve happily taken part in that, but I know soon I will have even juicier gossip for you. How? Because I feel a field trip or two in my immediate future. I’ll take a trip over to Orchard Commons, the other community built in Allendale which served as a model for Crescent Commons. The Allendale Women’s Club is hosting a tour of the local library in a few weeks, so color me SO there! Not to mention a movie night hosted by fellow Crescent Commons resident, Stephen. I look forward to bringing a special movie treat to that occasion-a little something my very good friend and I use to refer to as ‘lard corn’ which is nothing more than popcorn with WAY too much butter melted on top! Maybe at movie night or at the library tour I’ll get to meet even more people and get their perspective on what this transition has been like for them and how they can help me in my ongoing plot to bring accessible housing to every inch of the planet!!! OK, the entire planet may be somewhat unrealistic but perhaps we’ll just start with bringing the word to everyone we encounter and watch as that ‘goodwill wildfire’ spreads.

So what kind of advice can you offer me in spreading the word? I already have some ideas thanks to some brainstorming with my sister. And while I’m NOT going to storm the White House anytime soon (too many stairs!) I WILL be taking my fieldtrips...going to other successful complexes like my own, getting more personally involved with organizations such as The United Way and the National Multiple Sclerosis Society. Back in school, that’s what field trips were all about, right? Going to a museum or farm and learning about so many wonders of the world around us that you could never fully appreciate by just reading about it. And so shall I do-go on fact-finding missions to hopefully add to my arsenal of knowledge and above all else-share everything I learn along the way.  

Seeing it again from new eyes

My Blog Soundtrack: Kate Earl

Hola from Apartment Awesome! Another week, another chapter in the story of my life at Crescent Commons... This week has been fairly fantastic, which is thankfully proving to be a common theme here! Yesterday, the MS Society began holding a weekly Yoga class in the common room. I was present only at the beginning to let the teacher in but managed to hang around for a few minutes to meet some of the participants. Most of them had never been to Crescent Commons before so I was privy to their first impressions. Not surprisingly, the opinions were unanimously positive! I was reminded of my first time seeing the common room, when I attended the ribbon cutting ceremony held in November of last year. I knew how these new visitors were feeling...The general state of jaws being dropped and eyes widening in appreciation... It occurred to me how quickly I have grown accustomed to my surroundings. This is not to say that I’m now somehow immune to loving the complex, because I love my four walls EVERY DAY-believe me. Rather, it was wonderful to see my home from the perspective of a newcomer, to see it for the first time all over again. Many folks remarked how they would love to live in a place like this but they either didn’t know such opportunities existed or were hesitant to transition from their current living situation. I definitely understand both of these viewpoints. A huge part of this part of this blog is to get that much more information out there so others like me can know how wonderful the leap to accessible living has been for me. And I hope, I wish with massive power, that my story (all of our stories!) will spread like goodwill wildfire until every person who needs such an opportunity gets their wish. I know how enormously lucky I am to be here at Crescent Commons and I want to share the luck, disseminate the experience, spread the word... I know it’s working, because I’ve gotten great blog feedback. So keep it up, readers-tell people about that wacky girl with the blog and how she is somehow opening your eyes to an entire population of awesome folks in need of their own story to tell. My wish was granted when I moved here so I now take on the oh-so-humble task of trying to repeat the experience for any and every person that needs it like I did.  

Now Playing: I Megaphone, by Imogen Heap

This week I have found myself becoming more and more comfortable with my new surroundings. I even had an impromptu visit from one of my neighbors, Will. He lives in one of the two bedroom units so touring my one bedroom was a change for him. We chatted a bit-small talk, really-but I thought it was absolutely wonderful...If you’d told me a year ago that I’d be in a brand-new apartment (of my own!) talking favorite cookie recipes with my new neighbor, I’d have declared you a crazypants of the highest degree! In fact, a year ago I was in the thick of housing misery. The only other opportunity I had been offered was a shared house in Randolph which yes-was handicap accessible-but would have been a shared single home situation. I knew that location wasn’t my real shot at freedom. But I did not dream what awaited me in Allendale...

I was at the pharmacy yesterday and when prompted for my address, a nice woman in line said to me, ” I thought I recognized you!” Turns out she was part of the architectural firm that designed Crescent Commons! Naturally I told her, “Well thanks, you did a great job!” and shared with her how great it's been going for all of us over here. So that was a great example of a random meet-up in the community that proves how small the world sometimes seems.

In the brief tenure of this blog, I’ve grown accustomed to sharing a longer and seemingly more meaningful posting with you but the fatigue frequently associated with MS is pretty bad today so I think I shall sign off.

Oh-and I most definitely bought cookie mix at the pharmacy. After all, I have an entire new community of neighbors to bake for! Will told me he likes chocolate chip...