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.