Getting over the hump!

Forgive me if this is now update overkill but I figure the more informed I keep you, the smoother my transition back to Apartment Awesome. Two big things:

1. Had my post-op appointment with my leg surgeon yesterday. He took out the last few stitches and declared the healing of my surgical sites "a wonder"... Follow up X-ray was also great, no shifting of the pins and the promising presence of ossification- however he did say the bone regeneration did appear to be a bit slow but that's exactly what he had been expecting.

2. My long-awaited custom power chair arrives this afternoon, it's being delivered to me here at CareOne. I'm hoping this 'superchair' will afford me more time out of bed to get around and stretch everything, work on arm exercises on my own time in their gym. The PT/OT have already remarked my arms, while pretty strong to begin with, are showing signs of muscle growth. This will obviously make safe transfers from bed to chair much easier. That and I'm losing weight about 7lbs so far. I spoke w the dietician when I came here and was put on a reduced fat/cholesterol diet per my request.

In summary: I continue to try my best to focus on my progress, no matter how small it seems, is still progress. Don't get me wrong, I'm still prone to bouts of self-doubt and maddening frustration!  But I'm clinging to the good news like lifeboats and the more progress, the more lifeboats. I hope to soon have a yacht of collective lifeboats.

Please keep the amazing thoughts coming, I think they're helping.

-Liana

A quick update!

Greetings Friends and Followers,

I wanted to keep you apprised of my progress and latest info: Yesterday I was transferred to CareOne At Madison Ave (which is actually in Morristown) and have been admitted to their subacute rehab floor. It's a beautiful place, a 1901 mansion that was converted to a multi-unit care facility a few years ago. The staff are very upbeat which is helping me to be the same. I've been evaluated by physical and occupational therapy and they are setting up a treatment plan not only to start with but with anticipated weekly goals and subsequent increased activity. Everyone I've spoken with from administration to therapist is aware of my goal to return to my independent living apartment and they have all indicated to me that I will achieve just that.

I'm hopeful and am encouraged by this facility and their reputation for excellence. I know some days will be desperately difficult but in the end, I'm right where I need to be to get back to where I belong.

A fall back

Hi Everyone,

Last Tuesday I fell and 'shattered' my left leg. I had surgery to fix it w pins and all that good stuff. I've been in the hospital 5 days and will discharged to a sub-acute rehab facility in Morris County so I'll be closer to my family. I've been told I could be there a month to three months 'roughly' which means I'll be gone a while. My sister has already been to my apartment to clean it out, get rid of food, etc.

So as to my beloved blog: I clearly can't promise a weekly notation while this is going on. But I DO hope to compose a passage or two when I feel up to it-I'm sure I shall have plenty to talk about!  I'm not sure I can commit to my weekly posts when I don't know what to expect at Rehab. I'm also super scared but hoping this may turn into quite the comeback tale. Wish me luck and keep in touch. I can't wait to get back to Allendale.

Liana

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...

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...

How much is just coincidence and how much is luck?

This week’s Crescent Commons musings brought to you by: The Who’s Tommy, Original Broadway Cast Recording.

This past week I’ve been thinking a lot about the concept of luck...How much of our lives is just coincidence or are there more powerful forces at work? Not surprisingly, I’ve spent a great portion of my adult life feeling unlucky. What else could possibly be to blame for being diagnosed with MS, if not for truly horrific luck? Since the cause of MS remains unknown, it’s difficult to attribute it to any one concrete reason. Therefore it can be deceptively easy to blame all of life’s trials on MS. Living my life this way has been largely negative, obviously. It just seemed that since my body was betraying me, the world at large was as well. But oftentimes with a setback, I’ve experienced a ‘blessing in disguise’ such as needing ankle surgery and losing a work position only to be reassigned to a much better and fulfilling job...Or the time when I was borrowing a power wheelchair in order to work and was gifted with one of my own by a sweet patient. It’s this theme of unexpected luck that I think has brought me to Crescent Commons. The disease I hate so much has also led me to a wonderful place to live, with neighbors and new friends all around me. I believe that we, the residents of Crescent Commons, have won a lottery of sorts because we now get to live in a close-knit community with built-in support always just a door (or two!) down the path. I am certain that our burdens in life, whether it’s MS or Autism or Down Syndrome have caused us all grief, sadness, frustration, or even annoyance at the very least. Personally, I would NEVER have associated my disease with luck of any sort. But that same disease brought me to the loveliest apartment anyone could wish for! It brought me across the path from my new friends, Robert and Steve. We've gone grocery shopping together already and it was fun. I doubt the average person finds going to the supermarket to be a giddy experience but it was for us- because we were no longer isolated.

Just the other night, we denizens of Crescent Commons gathered together in the common room for a ‘mixer’ hosted by the Allendale Women's Club. We nibbled on snacks and treats while meeting more of our neighbors in the building as well as in the community. It certainly seemed like a great time was had by all. I chatted with my new neighbor Kathi and found we had some things in common. We are from different generations and backgrounds but we shared similar stories of excitement to be living in this new place. She told me of how much her family wanted this opportunity for her and I told her how my family wanted the same for me. And then we shared how absolutely wonderful it was to be here. How lovely it was to socialize a bit, to chat with other folks... At that moment I was again feeling lucky.... Not for the disease but for the fact it afforded me the chance to meet these new people. And when you think about it, just how often does the average person get gifted with a built-in community of friends?

Now I know a few more people who know what it feels like to crave independence but not know how to achieve it. But somehow they found about Crescent Commons and were gifted with their very own piece of the world, just as I was. So, NO-I don't feel lucky to have MS...but I feel absolutely lucky that it has brought me here.  

Moving Day

This week’s blog writing music: Whatever by Aimee Mann

I feel compelled to start each blog with that from now on, because music really does inspire me and quite often the album I select has a significance to how I’m feeling at any particular time.

The reality of Apartment Awesome hits me a little more each week. I love not running into every single doorframe I encounter! I’m also a big fan of this ‘dishwasher’ thing-never had one before. The finer points of my apartment are like the icing on an already miraculous cake! I’ve been afforded a safe and accessible place to live, that’s miracle one. The fact that said place is lovely and yes, awesome, still seems unreal to me. I hope I never get used to it!

Flash back to January 2nd. New year, new location! It’s moving day and I am so nervous. Not so much about the change of location but the actual move. I was blessed with the assistance of a great moving company thanks to Bergen County United Way (Thank you!!) and the truck arrived bright and early at nine am. Ok, right there I was already at a disadvantage because I SO don’t do well in the morning. But this was an important day so I did my best to rally. Adding to the confusion was the fact that a medical supply company was coming to pick up my hospital bed and then deliver a different one to the new place. In the grand tradition of delivery personnel, no times had been given for either transaction. Thankfully my old bed was picked up right away and the new bed came to the new place just as I did so that was good luck. I realize moving day is very tiring for everyone but by the end of the day I felt almost delirious from exhaustion. But there I was and there was no turning back because my bed was now here. My mother was getting ready to leave and I was struck by the enormity of the moment. Closing the door behind her was freakishly symbolic of closing the door on my past. Fourteen years with MS, the past six spent in the ill-fitted but familiar walls of my childhood home. Come to think of it, I don’t think there’s ever been a more significant moment in my life since my day of diagnosis. Well there’s been moments that certainly stand out, but none of them are positive.

Next came all the fun and sometimes annoying tasks of address change, setting up utilities, and everyone’s favorite-ordering cable. I won’t say these tasks were easy, they were often nearly impossible because my new address was truly NEW-as in, never before existed. But underscoring each task was the increasing reality of independence. That electric bill that I never had to worry about before? Well, bring on the hardships of more careful financial planning, because it was MINE! When your life has progressed to the point of being dependent on so many for so much it is with absolute Pride to see that electric bill in your name. It was proof positive that the powers-that-be had faith in me, that I was more than just a hanger-on to someone else’s life. This apartment may not technically belong to me, but after many years of feeling like a burden, this place is MINE!

Apartment Awesome

Wow, this weekly opportunity to spread the Apartment Awesome story has been well, awesome!  I don’t know if I’ve mentioned that part yet-that my new and fabulous residence has been dubbed Apartment Awesome.  Hopefully the weeks to come will afford me many chances to explain why...

      It’s a muggy August afternoon in Budd Lake and I’m in a state of shock.  I’ve just been told that my seemingly endless search for handicap-accessible housing has come to a marvelous end! In a few months time I would be moving to Allendale, in Bergen County.  I hadn’t heard of the town but then again, it's super small.  The extent of my Bergen County knowledge was limited to a few visits to Mahwah to visit a friend from Rutgers and a few horrifying experiences with the perpetually angry parking lot otherwise known as Route 17.  So I knew I was headed into mostly uncharted waters.  Ask anyone who’s ever known me-I am a big wuss when it comes to trying new things and this was a VERY new thing. But I was on a “come on, Liana, change your life-what have you got to lose” roll so I tried not to freak out.  The biggest flaw in my moving plan was knowing I wouldn’t be able to bring my two cats to the new apartment.  I cried all the time knowing I would have to leave my furry pals.  They're really great constants in a life that’s otherwise prone to fluctuation.  However, I knew my need for reliable housing would have to trump my feline devotion. 

      Information began trickling in.  Each passing week brought me closer to the reality of true independence.  I had only seen pictures of the complex on the Bergen County United Way website. ( www.bergenunitedway.org ) I maintained an increasingly towering pile of paperwork, all the while doing my best to maintain some semblance of order.  Eventually I bought several folders (different colors of course) and wrote the contents of each folder on the front.  Not the most sophisticated system but it worked for me.  My sister helped me gut my closet-arguably the best part of moving, forcing yourself to keep only that which REALLY matters! 

     In late September I was feeling particularly anxious about forfeiting my familiar but stagnant life for a better yet unfamiliar one so I decided to take a drive to see what Allendale was really like.  How thrilled I was to arrive in a beautiful town that seemed very much like Budd Lake, but urban-adjacent.  I drove alongside a beautiful brook and past Crestwood Lake which looked both peaceful and fun.  Then I saw the construction fencing bordering what was soon to officially be Crescent Commons.  The architecture was beyond beautiful.  I could not believe what I was seeing, it was so much more wonderful than I’d been hoping for! I couldn’t get past the fence so I parked in the driveway and just stared.  You know when something goes so right in your life, so meant to be, that it’s like the sun is shining on only you?  That’s what overcame me right at that moment.  Infatuation-not for a person, but for a possibility.  Like falling in love with your future.

A home of my own that fits my world in a wheel chair

Moving is never easy. There are countless things to keep track of- packing all your worldly possessions in a reasonably organized and sane manner, updating your address, and above all else-making peace with change. But first, you need a place to move TO. Finding your new ideal home is difficult for anybody, certainly. Now imagine factoring in seemingly trivial things like door width, curb heights, even the placement of a peephole-and you're beginning to see the world from a wheelchair.

Not surprisingly there's not a huge inventory of handicap-accessible apartments in New Jersey. When you're stuck in a wheelchair like I am, the fun aspects of moving like square footage and pretty cabinets go out the window. I was looking for a place where I could shower somewhere other than from a sink and more than anything, somewhere I would not be constantly banging my kneecaps into everything. So I started doing some research. The shortage of handicap accessible housing is scary. No, 'scary' doesn't do it justice. A more appropriate description would be terrifying. Of the limited options available, a great deal were located in urban settings such as Camden, Newark, or Atlantic City- all unfamiliar to a small town gal such as myself. But I know beggars can't be choosers, so I kept at it. The few (and I mean FEW) options available also weren't exactly 'available' because they almost always carried with them a waiting list. I filled out countless applications and placed many phone calls. I figured the sooner I got on a waiting list, the sooner something would become available... That is correct in theory, certainly, but many of the waiting lists were YEARS long. Sure I didn't want to wait that long, but I also was running out of time. My mother is wonderful but she is also not a spring chicken. Our house wasn't in the best of shape and I could no longer just eek by. I needed to move before I HAD to.

About two years pass during which my physical disability was rapidly increasing and my options were no better. Panic attacks were frequent. I read an email from the MS Society about a housing project that was still being constructed in Allendale. There would be four apartments for qualified applicants living with MS. The application itself was extensive, forms from my doctor would be needed in addition to an extensive financial assessment. I remember the application was due by 4:45pm on a Friday afternoon, at the Bergen County United Way offices in Paramus. As a lifelong procrastinator I waited until the last possible moment to submit everything. In fact, it was my mom who drove to Paramus to drop it off, I was just too exhausted. A month or two went by and then I heard back that I had been selected for an interview, not unlike an actor getting a callback. I took my sister along for moral support. The interview went so well I could hardly believe it. On the way home my sister commented that she hadn't seen me so confident in a long time. I hadn't FELT so confident in what seemed like forever, years easily. I felt really good about my chances and felt a familiar spark of positivity. It was the most "ME" I had been in a decade. Still, I tempered my excitement with the reality that I was hoping for one of only four openings. Six weeks go by and it's the end of the summer, decision time. I called United Way to update my phone number and also fish for an update. Their housing services coordinator greeted me with the fantastic news that I could expect great news in the mail. I was out in the driveway with my sister and nephew, I rolled over to where they were sitting. "I got the apartment!" I declared. My sister and I were both crying like fools. My nephew was just perplexed, I think! This was officially the start of something great.  

Greetings and Salutations, Bergen County! My name is Liana Kraenzlin and I will be doing my best to tell you about the life and times of Crescent Commons-one week at a time.  To start, I will impart some information about myself...I was born and raised a Morris County girl.  Budd Lake is an extraordinary place to grow up with no shortage of trees, streams, and small-town charm and familiarity.  In high school I dabbled in theater and music, yet I never waivered from my career goal-to be a registered nurse.  I attended Rutgers University College of Nursing and was well on my way when I was sidetracked by inexplicable numbness on the left side of my body. Looking back, I now know how wise my doctor was to send me to a neurologist right away.  He must have sensed what I would soon know-that, at the ripe age of nineteen, I was diagnosed with Multiple Sclerosis.  It's difficult to remember that period in my life.  I thought of quitting school and accepting what seemed like my inevitable descent into disability.  My family, friends, and even professors encouraged me to stick with it, go through the rigors of nursing school while experiencing a host of unfamiliar symptoms, sensations, and medications. 

I graduated in May, 2000 with my BSN and quickly began working at St. Josephs Hospital in Paterson, an internship in women's health which led to full-time employment on a high-risk pregnancy/surgical unit.  MS was certainly an issue, periodically requiring extremely high doses of steroids intravenously to abate my increasing symptoms of numbness, weakness, and visual impairments.  I worked there for six years, much longer than many expected me to, my neurologist among them.  By the end of my hospital days, I knew it wouldn't be long before I was using a cane full-time, a wheelchair after that.  I moved back home with my mother, found a less physically demanding job as a clinic staff nurse.  The physical setbacks were increasing in both severity and frequency, and I quickly graduated from cane to walker to power wheelchair.  I learned how to drive a hand-controlled car and worked one final year exclusively from the wheelchair.  Summer of 2011, I came to accept that I could no longer stay employed.  I worked for eleven years with MS, surviving several broken bones and hospitalizations throughout.

It was around then that it was becoming increasingly impossible for me to live in my mothers house.  I had my own first floor space, lovingly dubbed "Apartment B" but no handicap accessible bathroom or living space. I was just surviving, really, not living.  Then, a mass email from the National MS Society: "Housing Opportunity in Allendale!' I was intrigued to say the least.  My OWN space? A home I could call my own and feel safe?! The answer was yes-my dream of having my own space to feel safe and DO something could come true.  But first, there was the application process.... which I look forward to telling you about next week, because for now, my feet have swelled to the point that I simply must abandon my desk. Cheers!