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.