Monthly Archives: December 2014

Project 365

For 1,096 days in a row (9/1/2010-9/2/2013) I took at least one picture every single day. I narrated why each picture was significant, creating a photo journal that became a raw and honest but beautiful reminder of my journey. I was, however, pretty hesitant when the idea was first presented to me. Two of my friends had already begun when I was considering taking on the project, and they were loving it. In theory I loved it too, but it did seem like a huge commitment. There must be reasons why I committed not only to the year, but also continued for a second and also a third year! Now I’m ready for year four, and I’m going to try and explain why everyone can benefit from a project like this.

First and foremost, I have always been interested in photography. I have always loved taking pictures. In fact, I have boxes and boxes of photos and negatives from the years before there was digital photography. I knew that a project like this one could only improve my photography skills, which is something I’m always eager to do. With built in support thanks to my friends (shout out to Alex and Carol!) and our private Facebook group, I finally made the decision to start my first Project 365 on September 1, 2010.

September 1, 2010:  Teacher in-service for the new school year! "The three musketeers," Alex, me, and Maddalena. (This was my first P365 post ever!)

September 1, 2010:
Teacher in-service for the new school year! “The three musketeers,” Alex, me, and Maddalena.
(This was my first P365 post ever!)

When I joined the Facebook group, I met a whole group of amazing women (and a few pretty cool guys, too!) who all shared a passion for photography just like me. Through the sharing of our photos and commenting on each others’, friendships blossomed! We really had gotten to know each other well, even though we only hung out together in cyberspace for the longest time. They were with me from day one, all the way through day 1,096. We have taken our friendships beyond cyberspace, and now we hang out in real life! Whether we are taking photo “field trips”, or simply hanging out, I just love spending time with my “photog” friends (another shout out for Marlene, Nancy, Megan, Kim, and Jaime!). They are all extremely talented photographers aside from being awesomely cool people, and I am humbled any time any one of them “likes” or comments on any of my photos.

Day 1: 9/2/2011 Today i remembered to park in my special parking spot, pretty much the only "perk" for being teacher of the year. Well that and this snazzy star given to me at the district convocation yesterday! Sorry took your spot, Alex!  (This is day one of year 2!)

Day 1: 9/2/2011
Today i remembered to park in my special parking spot, pretty much the only “perk” for being teacher of the year. Well that and this snazzy star given to me at the district convocation yesterday! Sorry took your spot, Alex!
(This is day one of year 2!)

But the most amazing part about Project 365 is how it makes me see the world. There is something very powerful about seeing things through my camera (or iPhone) lens. I seek out beauty in the little things that exist in every day life. In a world where negativity prevails, Project 365 allows me to find something positive in every single day. When I look at the books I made after completing each year, every picture and narrative brings on a slew of memories. The lessons I learned during the course of those 1,096 days are far more valuable than anything I learned in all my years of school. It took me having some sort of camera practically permanently attached to my hand for me to appreciate every single day, no matter what. Not every day is a great day, but there is something great in every day. Thanks to Project 365, I know how to look for those moments.

Day 1: September 3, 2012 Tomorrow I'll be wearing these items for the first time since June. They are seldom thought about during the summer months, but during the school year I wear them every single day. They aren't the most glamorous of accessories but I love them because it means that I have a job and that I am still healthy enough to work.  (Day 1 of my third P365.)

Day 1: September 3, 2012
Tomorrow I’ll be wearing these items for the first time since June. They are seldom thought about during the summer months, but during the school year I wear them every single day. They aren’t the most glamorous of accessories but I love them because it means that I have a job and that I am still healthy enough to work.
(Day 1 of my third P365.)

My photog friends and I are starting a Project 365 tomorrow. For many of us, this will be our fourth time! I’m not going to lie: I am a little nervous this time around. Many of my photos in the past centered around my job and my students. At first I wondered if it would even be worth doing because I think I’m pretty boring these days! Some days I don’t even leave my house. But that’s exactly the point. Even if I’m sitting home in my pajamas with my butt on the couch all day long, there is still at least one precious moment to be had that deserves to be remembered when I look back. Because my life has changed so much in the last year, I’m picking up my camera so it can help me see clearly again. If you’re having a hard time seeing what’s right in front of you, might I suggest looking through a camera lens? It works!

Day 365: 9/2/1013 PL365 - preparing  #preparing for the upcoming school year involves so much....the classroom is just one part, and probably the easiest. The psychological preparation for me is much more difficult as the pressure mounts and MS continues to hinder me in ways I always assumed impossible. Project 365 has been a great experience for me, and even though I am not starting year 4 right away, I continue to take photos multiple times every single day. Looking at the world through my lens (and sometimes through my iPhone camera) has taught me some valuable lessons. What I know for sure is that we can all find beauty in simple things, and we can find moments every day that we can capture to remind us of the memories we create even on the most humdrum days. Bruce, thanks for indulging me and my hobby as you've waited endless times for me to set up my shot...and for getting me my Rebel in the first place! Also to my special p365 family Alexandra Peterson, Kimberly Stepowany Curren, Nancy Burgos-Boyle, Marlene Christopher, Megan Boyle Curren, Carol Tare Curren: I never knew that pursuing my hobby would lead me to such a fabulous group of women and friends. Who knew I could feel so close to someone I met just through our shared passion?!! Thank you, ladies. You all rock!  (My last P365 post at the end of my third year. I'm sure by looking at these pictures you can see why I am a bit nervous. There is an underlying theme here that is no longer present in my life!)

Day 365: 9/2/1013
PL365 – preparing
#preparing for the upcoming school year involves so much….the classroom is just one part, and probably the easiest. The psychological preparation for me is much more difficult as the pressure mounts and MS continues to hinder me in ways I always assumed impossible. Project 365 has been a great experience for me, and even though I am not starting year 4 right away, I continue to take photos multiple times every single day. Looking at the world through my lens (and sometimes through my iPhone camera) has taught me some valuable lessons. What I know for sure is that we can all find beauty in simple things, and we can find moments every day that we can capture to remind us of the memories we create even on the most humdrum days. Bruce, thanks for indulging me and my hobby as you’ve waited endless times for me to set up my shot…and for getting me my Rebel in the first place! Also to my special p365 family Alexandra Peterson, Kimberly Stepowany Curren, Nancy Burgos-Boyle, Marlene Christopher, Megan Boyle Curren, Carol Tare Curren: I never knew that pursuing my hobby would lead me to such a fabulous group of women and friends. Who knew I could feel so close to someone I met just through our shared passion?!! Thank you, ladies. You all rock!
(My last P365 post at the end of my third year. I’m sure by looking at these pictures you can see why I am a bit nervous. There is an underlying theme here that is no longer present in my life!)

 

 

A big year

As 2014 comes to an end, I can’t help but reflect back on what a huge, life-changing year it has been for me. During all my years of education, including graduate school, I did not learn nearly as much as I did in just this one year. The beauty of being a teacher in my soul is that I am also a perpetual learner. 2014 has not been about the kind of knowledge acquired from formal schooling, but rather a cognizance that has been attained through a journey of self-discovery that has included both failures and triumphs, many of which were unrecognizable without the benefit of hindsight.

The beginning of 2014 found me in a pretty low place. I had been home from school since October, and the progress I was making was hardly noticeable despite my hard work in physical and cognitive therapy. I began questioning my future, personally as well as professionally. Would things ever get back to “normal”? Would I ever be able to get back to my classroom? What would happen if I couldn’t work anymore? What will I do with myself if I’m not working? After agonizing over the possibilities, the realist in me came to the earth-shattering realization that I could no longer perform my job. I struggled with the thought of leaving my beloved school, my home away from home, with my heart breaking into pieces. My identity was so wrapped around my career as a teacher, that I wondered if I could even learn to exist without my livelihood. On February 20, 2014, I tearfully tendered my resignation and declared my intention to file for disability retirement. It was one of the most difficult days of my life, and one I’ll never forget. If 2014 had started off badly, it had gone from bad to worse.

This nearly killed me. After all my years of hard work, I was reduced to a formality at a board of education meeting.

This nearly killed me. After all my years of hard work, I was reduced to a formality at a board of education meeting.

But here’s the thing: I needed to experience that pain and sorrow in order to really appreciate the good stuff. After I made my decision to “retire”, I was finally able to concentrate 100% on me… something I had never done before. Little by little, 2014 got better and better. I fell into a groove, and looking back, the year seems to have flown by!

An amazing friend got me some very thoughtful gifts  when I was not ambulating well, early in 2014.

An amazing friend got me some very thoughtful gifts when I was not ambulating well, early in 2014.

In the last year, I have learned many valuable lessons, and I have completely changed my priorities. As much as I worried about who I would become without the “teacher” piece of me, I now know that I’m still a teacher in so many ways. Not only that, but I couldn’t get rid of that chunk of myself even if I  tried. It’s ingrained in me. It’s all in the little things that I don’t even realize I’m doing until someone points it out to me. Perhaps it’s in the way I interact with the patients when I’m at my volunteer job at the MS Center. Or it could be the way I “run” around helping my fellow MS warriors when we are in our exercise classes. Whatever the reasons, I am pretty sure that the more I acknowledge the many “teacher-ish” things I do, the less I grieve for my days as a classroom teacher.

The hardest part about not being a classroom teacher has been not being surrounded by my kids.

The hardest part about not being a classroom teacher has been not being surrounded by my kids.

In this past year, I have learned to be more patient with myself, and I don’t (always) get down on myself when I can’t accomplish what I have planned. I have learned to say no to things without feeling the need to justify my actions. I have learned that my “normal” today may be completely different than my “normal” tomorrow. I have learned (but not totally accepted) that perfection is not always possible. I have learned who my friends are, and I have learned to love them more completely. Many people search a lifetime to learn such lessons, and those are just a few on a long list for me, and in just one year.

By far, the most significant part of 2014 has been this part…right now. This is the part where I feel stronger than I have in a really long time, both physically and mentally. I owe so much of this to an amazing trainer who is passionate about exercise and MS, and a family of MS friends who have become such an important part of my life. I could easily do the exercises at home or at my gym. But the value of our exercise classes far exceeds the exercise alone. I like to think we are all in a fox hole together. We are all fighting the same war. There is an understanding between us that only we share: unfortunate that it’s MS, but (incredibly) fortunate to have each other. (Shout out to the cool kids…you know who you are!)

This is me with just some of my amazing MS family.

This is me with just some of my amazing MS family.

This was taken during the intense strength and balance class that I attend every week.

This was taken during the intense strength and balance class that I attend every week.

Although I experienced many difficult times, I’m excited as I look to 2015. I’m still not sure what’s next for me, but in the meantime I’m living in the present and enjoying every possible moment. Being able to say that is truly my biggest accomplishment of 2014, and maybe even ever.

 

 

 

 

 

Partner in crime

This week, my husband and I celebrated a huge milestone: 20 years together. After so many years with this guy, I am more appreciative of him and all he does for me now more than ever. Our journey together has been full of stumbling blocks, and he could have left at any time. But he didn’t. He stayed because he is a good guy and he loves me. I’d like to share some of the reasons why I feel really lucky to have him.

Anniversary roses from Bruce.

Anniversary roses from Bruce.

We were just 18 years old when we met, through mutual friends at college. We became fast friends, especially our sophomore year when we were dorm-mates. In our dorm, we were all a very tight-knit group. We spent practically every waking moment together. He was my watching movies, cuddling on the bed pal. He was my hanging out and drinking (legally of course) pal. He was my going out for ice cream pal. He really was my everything pal. It was no secret to any of us that Bruce liked me. But he was just my buddy. He watched as I went out with other guys, and our friendship continued to grow. From the time we met until the time we finally became a couple, we experienced a few “false starts”. As frustrated as he was, our friendship still continued to grow. I’m sure there was a small part of both of us that knew we would be together when the time was right, which is exactly what happened.

I love this picture of us.

I love this picture of us.

Starting a relationship with a person you already know inside and out is quite different than dating someone you have just met. We found ourselves in a serious, committed relationship from the get-go. I knew early on that I was going to spend my life with him.

Our marriage has certainly been tested, and we had our doubts years ago. But when mysterious symptoms started creeping up on me about 12 years ago, we took a careful look at our priorities. When you’re faced with a life-altering diagnosis, it makes you reevaluate what is important. It’s true that we recited vows to each other “in sickness and in health”, on the day we were married. This is a fairly standard line spoken at wedding ceremonies all over the world. But how many people who have recited similar vows have actually had to put their word to the test? How many people have spoken those vows and then run away when the chips were down? Not Bruce.

This guy is my rock.

This guy is my rock.

On the surface, many would say that we are complete opposites. I say that we complement each other perfectly. Some would call him cynical, while I am more trusting. Some say he is pessimistic (although he calls himself realistic), whereas I am utterly optimistic. While he admittedly hates almost everyone, I try not to waste energy hating anyone. I am committed to being fit and healthy, and he couldn’t care less about it. My personality thoroughly offsets his and vice versa, which in my eyes means that we are two halves of a whole.

I don’t ever use the term “care partner”, but that is truly what Bruce is for me. He picks up the slack for me in every possible way. I don’t keep the cleanest house on the block because I can’t. He doesn’t mind, and he ends up cleaning up more than I do, even though he works about a gazillion hours a week. I am not the most social of butterflies anymore, but Bruce doesn’t judge me. He understands as well as anyone can who has not lived with MS. I can’t cook for him every single day, but when I do, he is completely appreciative. When I ask him what he wants me to cook, he always responds the same: something easy. He doesn’t want me working too hard because he knows what the result is. When I am not feeling well, he is super attentive to me and does whatever he can to help me simplify my life.

Together we get through all of life's obstacles.

Together we get through all of life’s obstacles.

I could not ask for a better partner to walk by my side on this journey. The truth is that Bruce carries me most of the time, and I am finally to the point where I don’t fight it anymore. I know that I am a better person because of him, and I like to think he feels the same way about me. We have grown together during the course of the last 20 years, and I am grateful for him every single day. Neither one of us is perfect, but we are definitely perfect for each other.

Pity Party

I am an optimistic person. I have even been told that I am too optimistic for my own good. I always look at the positive side to every situation, even when other people can’t quite see it. I firmly believe that every cloud has a silver lining. This is who I am. 99.9% of the time. But I definitely have my moments, and the last few days have been proven that point.

MS sneaks up on me at very strange times and in very strange ways. Of course, I know that MS is my constant (not-so-welcome) companion, but often I find myself lulled into a false sense of security. When things remain status quo for a while, I forget (or at least bury it way in the back of my mind) that MS is chronic, progressive, and debilitating in so many different ways. The only thing that is predictable about MS is its unpredictability.

Since I am no longer working, I have a pretty rigid schedule for myself. Is this surprising? Not for someone who is a former teacher. For 15 years, I moved only when alerted by a bell. I followed a strict schedule, even peeing only on scheduled time. It makes sense to me that I have a schedule for myself in “retirement”.

Last week I had grand plans for my “days off”. You see, I have my schedule such that I am busy on Tuesdays, Wednesdays, and Thursdays so that Mondays and Fridays are my days off, where I generally run errands, food shop, do things around the house, etc. I have it all planned out perfectly. Have I mentioned that I am a planner? Yup. It’s another (sometimes nasty) side effect of being a teacher. What I didn’t plan for, however, was waking up on Friday too exhausted to move. Some rather obnoxious symptoms of MS crept in on Thursday evening, which further disrupted my already sporadic sleep. I woke up unsteady on my feet and shaky, but also very queasy and headachy. This was something I had not scheduled for my day off. The result was that I felt like a failure because I could not accomplish the tasks that I had lain out for myself (and I still haven’t!). In my head I began listing my failures: I have a house to clean, errands to run, grocery shopping to do, decorations to hang, holiday cards to send, and the list goes on and on. How did I ever manage to get it all done when I was working? It hit me all at once, and I found myself in the midst of a pretty happening (self) pity party.

Even the eternal optimist deserves a pity party every once in a while. I allow it when it happens, but I make sure that it is short-lived. It’s important for me to have moments like this because I take the time to grieve for what I can no longer do, but I never let it overshadow all the amazing things I still can do. So I let myself cry and yell, and then I start thinking about how lucky I am. When I feel that I have sufficiently wallowed in my own misery, I begin counting my blessings.

For as much as MS has taken away from me, in return I have been left with precious gifts that I could never have appreciated otherwise. My pity parties (infrequent as they are) remind me that from every negative situation in life, there are positive ones to be had. The same is true for every single one of us. How can we truly appreciate the finest moments in life if we don’t experience the flip side? The lesson of the day here (shout out to Cathy!) is that the brightest moments in life are that much sweeter when we have allowed ourselves to feel the darkest ones. Experiencing the gamut of emotions, after all, is what makes us human.

Sleep… or lack thereof

Sleep. It’s the most basic of functions. Everyone needs it, and everyone does it. We come out of the womb already knowing how to do it, and we do it until the day we die. It is a necessity of life, and unfortunately, I suck at it.

Luckily my babies have no sleep issues whatsoever!

Now to be fair, I was never really a superstar at sleeping. But I slept well for the amount of time I slept. I wasn’t the teenager who slept until noon (my dad would never have tolerated that!). But if I would have been allowed, I certainly could have accomplished it! I know what deep, sound, and restful sleep does for me (or anyone really), and I know how frustrating it is to never attain it. Of all the things MS has taken from me, I think I resent this the most.

So why don’t I sleep? First and foremost, it’s because of the incredible amount of pain I experience, particularly at night. As the day goes on, my legs get worse and worse. They ache so badly that it is very difficult for me to find a comfortable position, and usually it’s pretty short-lived. If I can’t find a position that works for me, I move to the recliner, then the couch, then back to bed. The cycle does not end. I never put together more than 2-3 hours of sleep at a time. I don’t wake up feeling rested because I’m not so sure how much deep (REM) sleep I get, especially since I can’t ever remember a single dream. I miss those crazy, vibrant dreams I used to have back in the day! Unfortunately, it’s during the deepest of sleep (studies have shown) that the body does the magic of regenerating cells that help to repair myelin. It has also been shown that chronic lack of sleep exacerbates MS symptoms. It’s a double whammy for me! I have tried every sleep aid (both prescription and OTC) and pain killer, so please don’t ask me if I have taken this, that, or the other thing. I manage with a combination of products that have helped me most.

IMG_4706

Marty sleeps like a champ.

Even more frustrating than the physical aspect of not sleeping, is the cerebral one. I hate nighttime. Every night when I get into bed, I wonder how many good hours I can put together. I think about where else I can sleep if I can’t find a comfortable position where I am. I have to consciously make an effort to NOT think about NOT sleeping. It’s exhausting to always be working  on getting out of my own head.

IMG_4787

I love it when they snuggle like this. I wish sleep was this easy for me!

As if all this isn’t brutal enough, the result on my waking hours is not so pleasant either. The less I sleep, the more off-balance I am. The less I sleep, the more my legs tremble. The less I sleep, the more I ache. The less I sleep, the more I forget words. The less I sleep, the more information I forget. The list goes on. The effects are cumulative and get worse as the day goes on. Inevitably, my body crashes to the point that I can’t move. It would be the perfect time to nap! But alas…

Scarlet can hold her own in the sleep department, too.

t’s not all bad though. I do some of my best thinking in the middle of the night! I watch bad TV, and text with other people who don’t sleep. I do a lot of online window-shopping, too. I plan great things during the wee hours of the night (or morning, actually), but most of these plans never come to fruition. I’m not exactly productive, but at least I find ways to pass the time. If you’re ever up for no good reason, try messaging me. The odds of me being awake are definitely in your favor!