"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...

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.