Monthly Archives: September 2016

Detoxification

Have you ever had a relationship or friendship that was exactly what you needed in the beginning, but through the course of time, it becomes toxic? I am no stranger to letting people go when we no longer serve a purpose in each other’s lives, and I find comfort in the statement “people come into your life for a reason, a season, or a lifetime”. This has not been an easy lesson to learn, but it’s one that I value because it makes me see the bigger picture instead of only being able to see my perspective. Instead of focusing on the fact that certain friendships aren’t meant to last forever, I focus on the few lifetime friendships I am blessed with.

If you follow my blog regularly, you know that I am an optimist, and I always try to find the bright side of every situation. Not everyone views this outlook as an asset. In fact many might even say that it’s a character flaw. But this has always been my view of the world. Furthermore, my values do not center around materialistic items but rather I find high worth in things that are meaningful and could never be purchased.

Years ago, I was introduced to a friend through a mutual friend. Let’s just call her Madonna. At first glance, it seemed we were much alike. Both of us were teachers, happily married, and childless. There was a honeymoon period where I thought that she was going to be a forever friend. During the early days of our friendship she sometimes would (out of nowhere) apologize in advance because she said she was bound to do something to “fuck up and piss me off”. I used to laugh it off, as odd as it was, because I never had someone say anything like that to me before. As the years went by, we seemed to have different priorities and it became increasingly more difficult to let things roll off my back.

The first thing that I recall that started to divide us was when Madonna told me that the one thing she was most proud of in her whole life was her BMW. For me, I wouldn’t even think of taking more pride than anything else in something so superficial. If asked that question I can list many things: a happy marriage to my best friend, making a difference in the lives of thousands of teenagers through the years, or even just being a good, honest person. I fully understand that everyone has their own priorities in life, but this was something I simply could not relate to. Sadly, this is just one example of many that I could share indicating how very different Madonna and I are, even if neither of us chose to see it back when we first met.

Superficiality aside, I was blown away by something else that I just couldn’t wrap my head around. I am disabled, and this is not a choice that I made. I never would have chosen such a thing. My MS family would say the same without a second of hesitation. In fact, I’m pretty sure that no one with a disability or handicap of any sort would 1) choose that for themselves and 2) want to be classified as such. Madonna had a temporary situation that was resolved with surgical intervention. Because the surgery included the addition of hardware in her cervical spine, she was given a card that she can present at the airport if she happens to set off any alarms at security. She continually referred to this card as her “handicap card”, which is not only a lie, but also somewhat offensive to those of us who actually carry a “person with a disability ID card”. She boasted how it got her a stool at a standing room only concert, so in her mind that validated her whole thought process. If only being disabled could be that simple…

The card that I’m not happy to have, but that I carry with me because I am, in fact, disabled.

But by far, one of the things that most upset me happened when I included Madonna in a “girls’ day” with some of my MS friends and another warrior who also suffers from a chronic (albeit different) illness. I was excited to “marry” my two worlds, and I had been talking about my MS friends for so long at that point. I talked about Mary’s laugh and how much I loved it. Yes, it’s loud. Yes, it’s boisterous. And yes, I love it. At one point Madonna turned to me and remarked that I couldn’t possibly be serious about loving that laugh because she “fucking hates it”. Yup. That’s a quote. I looked at her squarely in the eyes and I told her that I 100% love it. It was an odd comment for someone, who by many is considered very loud and over-the-top, to make. We should all consider ourselves lucky if we are in an emotional place that allows us to laugh so freely and easily, despite less-than-ideal life circumstances. I aspire to live that way (as we all should), and Mary has taught me this lesson which I take to heart and remind myself of every single day. Plus, making any negative comments about my special warrior family does not sit well with me ever because of how much they have taught me and how much I lean on them for their constant love and support. I will defend each one of them until my dying day.

Me and my Mary. Thank you for bringing joy into my life and helping me learn to laugh out loud and without fear of judgement.

I could go on, but why would I? I think I’ve said enough, and even though I wanted to understand Madonna, it got to the point where I could no longer relate to her at all. I was most disappointed when she spent time with Bruce one day, and he told her that I had not been feeling well at all, yet she still never reached out to me. Not even a text. Meanwhile, other friends (most of all my MS family) did not hesitate to show their concern and make me feel truly loved. That’s when I knew that my friendship with Madonna had run its course.

Angels on earth and kick-ass warriors, too.

Always by my side.

I don’t begrudge her anything, and I hope she finds happiness wherever her life takes her. She came into my life for a season, and we had good times during that season of our friendship. But at this point in my life, I need to focus on positive energy and I need to surround myself with like-minded people who see wealth as something more than money in the bank. Relationships that are supportive and nourish the soul are worth far more than the size of your bank account. Being an able-bodied, healthy individual is priceless, and if you are lucky enough to be so, then embrace it. Not just for yourself, but for all of us who did not choose to be otherwise!

Laughter

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Laughter makes the world go round. It connects our bodies to our minds, and connects us to each other. It can dissipate stress, and it’s the most effective medication I’ve ever used. It’s a timeless expression of peace and happiness that never disappoints, and it’s worth every single wrinkle that the consummately happy person is left with.

What were we cracking up about, you ask? It was a big blue ball. Yup. 12 years old inside a grown-up body!

What were Mary and I cracking up about, you ask? It was a big blue ball. Yup. 12 years old inside a grown-up body!

My friend, Mary (who is co-writing this piece with me), has the best laugh ever. I loved her from the very first second I heard that laugh because it is truly contagious (and she says the same about mine!). Sometimes I can’t even understand what she is saying when she tells a funny story because she laughs her way through it, and yet, I still laugh. Because I can’t help it. And because we all should laugh so freely and easily, without concern for anything except how amazing it feels to laugh out loud (literally), regardless of how boisterous it might be.

Mary dropped this cigarette and it landed just like you see it…great material for laughter even though she was alone. We shared this laugh with her when she sent us the picture.

There is so much laughter to be found in the simple routines of life. Far too many people spend their days focused on the minutia of daily living. If you’re open to seeing the humor, particularly in yourself, there is no shortage of experiences that are laughable. Sometimes there is no reason to laugh, but there definitely won’t be if you don’t allow it to happen. Both Mary and I take every opportunity to laugh, even when we are alone, simply because it feels so damn good. In fact, one memorable moment of bonding with laughter was when someone said something to the effect, “what is it that you do do?”, which caused us both to laugh hysterically to the point that we were unable to even catch our breath. When we finally calmed down, I turned to Mary and asked, “what are you, like 12?”, which caused us to start laughing all over again. The point being that it doesn’t need to be some huge joke with an anticipated punchline in order to be funny! I even laugh at myself when no one is around because why wouldn’t I? And Mary does the same thing.

Just a little Charlie’s Angels fun. Check out Charlie’s perfect eyebrow raise!

Surrounding yourself with people who make you laugh is as important to healthy living as having a team of good doctors that you trust. Luckily, both Mary and I participated in a wellness program for MS patients, which provided us with educational information as well as exercise classes. Meeting each other in these classes was fate because from the first moment we met, we laughed. And we laughed hard. Whether it was mid-exercise or post exercise, we were always laughing. We laughed at everything, ourselves included. In fact, laughing at ourselves is one of our favorite things to do.

We even laughed through our surgical masks when Carla had her treatment and needed to take extra precautions because her immune system was wiped out.

Beyond that, we have an amazing circle of MS family, and when we are all together, all we do is laugh. We laugh until we cry, our faces hurt from smiling, and our abs are screaming like we just spent hours working out. And when all is said and done, nothing could possibly make us feel any better. No amount of medicine could induce such a state of happiness and well-being. It’s pretty powerful, and a whole lot of fun.

Sometimes it’s hard to be patient with the girl who is constantly laughing…

Although Mary and I find it hard to understand, some people simply do not have the automatic response of laughter. Frustration and anger are often initial responses to certain situations in life. This is a normal response, even if we don’t exactly grasp that concept. If you are one of those people, you might want to think about the people in your life who thrive on laughter, and when you encounter a situation, ask yourself what those people would do. For example, a friend of ours once fell at home, lodging his butt in the wall. His backside was through the sheet rock while his arms and legs dangled free. His initial response was frustration because he fell. Then he was angry because of the fact that his fall created a BIG hole in the wall. When he freed himself and walked to the other side of the wall, and saw that the damage didn’t go all the way through it, he stopped. He asked himself, “what would Mary do?”, and he realized the answer quickly: she would laugh. And so he did. And so do we! Every single time we think about it, talk about it, or envision it in our minds.

If you think MS patients can’t belly dance… you’re right! But we still laughed like crazy. The instructor called one move the “sexy walk”, which is SO NOT what it looked like!

While laughter can’t cure the MS that bonds us to each other, it strongly bonds us to each other more than MS ever could. We look at life through the filter of laughter, and we understand that laughing at ourselves is just a springboard for more laughter. If you can’t laugh at yourselves, just call us. We’ll be happy to laugh at you any time you want!

This picture is a perfect representation of laughing our way through an ordinary day.

Bucket List

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Bucket list. It’s a term that I didn’t hear until relatively recently, but refers to things you’d like to accomplish before you “kick the bucket”. I never really thought about my bucket list before, and it’s not like I could sit here and rattle off a bunch of things that are on mine. But I guess subconsciously I’ve always had one, and it’s not until someone mentions something on theirs that I realize it’s also on mine.

This week, I actually completed something that apparently was on that list, and I was lucky enough to share the experience with two members of my very special MS family. If you are a regular reader of my blog, you know that last week I was struggling emotionally, and I was just not in a good head space. It is at those moments when I lean most on my MS family, and simply knowing that we had a day planned to spend time together, would have been enough to get my head straight. But sharing an adventure like we did not only straightened out my head, but also made me feel renewed and reinvigorated: more like me than I had been for days.

Our destination…

We started the day early, meeting up at 9 am, which is a challenge in itself! We packed the car: four adults (Mary, Cathy, Mary’s dad, who from here forward I shall simply call “dad”, and me), two rollators, and a cooler containing a bunch of snacks. We had a two hour journey to our destination ahead of us, and we were all entirely too excited (or in the case of Cathy and me, just a tad bit anxious). You see, the adventure we had planned was (wait for it!) hang gliding. Mary had already done it once before, but as for Cathy and me, we were way out of our comfort zones. But that’s the whole point. Everyone, and I mean everyone, should challenge themselves at every opportunity in life. I have learned that the only challenge I have ever regretted and did not overcome in my life was the one I never faced because I was too scared.

We had to take a picture to document the start of the day!

Mary geared up for the first flight, since according to us, she was a pro already. Cathy and I had been remarking all morning that amazingly, neither of us was feeling as nervous as we thought we would. In fact, I didn’t start feeling nervous until she was tethered to an ultralight plane and taking off. But watching her glide through the sky was a sight to see, and at that point I realized that I wasn’t nervous anymore. I just wanted to fly.

Mary getting ready to take off. Do you think she is a little excited?

Beautiful shot of Mary flying.

Mary, post-flight.

When Mary landed, I turned to Cathy and asked her if she wanted me to go next (so her Xanax could kick in), or if she wanted to go. She looked at me, and responded that if she didn’t go next, she might not go at all. So of course I agreed. Watching Cathy fly was truly inspirational because she, like me, was out of her comfort zone (for a multitude of reasons), and she was killing it! I was proud of her beyond belief. And also getting a little anxious. What if I was too heavy and they couldn’t get me up into the air, or worse, keep me up in the air? After all, I am heavier than my girls, and I am most certainly heavier than I appear. What if he was tired after two flights and couldn’t do what he needed to do? What if I puked up there?

Here’s Cathy, ready for take-off!

Cathy mid flight, still tethered to the ultralight plane.

All smiles for Cathy. Miss live wire, according to Thomas.

But Cathy landed with a smile on her face and a sense of accomplishment, despite being slightly green from motion sickness, something that she suffers from but that she didn’t let stop her. She was smiling from ear to ear and it was obvious that she had no regrets. As much as I wanted to chicken out, I have been an athlete my entire life and as such, I still have that competitive streak that is innate in all athletes. There was no turning back now.

I’m ready. I think.

So I suited up, to take the ride of my life. While we were tethered to the plane and taking off, it felt a hell of a lot faster than it seemed when I watched my friends take off. But once we were airborne…I was taken to a completely different place. The beauty of everything below me made my whole perspective change. How could I be in a funk like I was last week, with the whole world below me while I’m soaring above, taking it all in? Nothing could be ugly or hurtful or disappointing from 1,800 feet.

This is what mid-flight looks like from where I flew.

Gliding around at what seemed like the top of the world, Thomas, the professional who was tandem flying with us, told me to get ready for a natural roller coaster. What? Did I mention I don’t do roller coasters? I mean when I was younger and my friends and I went to Six Flags, I was the girl holding everyone’s purses while they went on the rides. But I was up in the air and wanted to experience it all, so I squeezed my eyes shut and screamed like crazy! In fact my mouth was open and I was screaming for so long with the wind whipping my face, that I started to dream about my Chapstick and my water bottle. All in good time…

As we came in for our landing I heard my friends screaming and cheering for me, giving me the strength I needed to get me through the landing, which I was deathly afraid of. Upon landing, Thomas told me that mine was the craziest flight of the day. And I told him that it occurred to me that I never even asked what training he had in order to take people hang gliding. I was mostly joking, but also kind of surprised that I hadn’t even questioned anything before getting on top of him (literally).

Landed safely.

My take-always from this experience were all positive, which is exactly what I needed. First of all, I got to create an unforgettable memory with some of my favorite people, and I doubt that any of us will ever forget a moment of it (which speaks volumes since we have MS and we forget EVERYTHING!). Second of all, I found the whole day spiritual in an indirect way. After all, I was surrounded by beauty everywhere I looked, and I’m not just talking about the landscape. My friends are beautiful inside and out, and they always manage to make me feel a deep connection to them as well as to the timing of how the universe brought us together in the first place. But most of all, I found it empowering to do something I never even thought to do…something that took me far beyond any limitations I subconsciously (or maybe even consciously) placed on myself. Cathy said it best when she said, “We might not be able to walk that well, but we sure can fly!” You said it, sister!

Happy to be standing on both feet and having accomplished what I set out to do.

Like I said earlier, I don’t really have an actual bucket list, per se, but I know that I will always try to challenge myself in new ways because the experience is that uplifting and that powerful. Just like that I am back to my same old, optimistic self, happily sipping a damn good glass of lemonade. You should try it!

What an amazing day spent with amazing people.

Loneliness

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As you know, I write this blog as a person who lives with a chronic illness because that’s the life I know. I am sure that many can relate to my experiences even if they are healthy, or so I like to think.

Here is something that I hate: even though I consider myself a hopeless optimist, living with a chronic illness can be damn lonely. How is it that I can feel lonely even when I’m surrounded by people? It’s nothing that can be easily explained, but it’s the kind of loneliness that makes me feel empty. It can eat at my soul, rob me of much needed sleep, and take my smile away (which is generally not an easy thing to do). It can make me withdraw from everything and everyone, and it can turn to fear in a matter of seconds. It’s true that fear can be irrational, but with the uncertainty that is MS, fear is constantly in the background even when you’re feeling your best because everything about this disease is scary. Everything.

It’s not just about MS itself, but it’s also about relationships and how they change through the course of illness. I know people want to help and they always say things like “if there is anything I can do….”, but there isn’t. They can’t make it go away and neither can I. Then they feel helpless and I can’t make them feel any better, which makes me feel even worse. Plus there is always the frustration that comes with feeling like my body is letting me down despite how hard I work to stay strong and healthy. It’s very easy to get wrapped up in an endless cycle of negativity, and it’s very difficult to escape it. Simple tasks become overwhelming, adding stress, consequently causing symptoms to flare.

Beautiful flowers from my beautiful MS family…because they love me and wanted to make me smile, which they did.

I fight so hard to stay optimistic, but when I’m feeling vulnerable, the tiniest thing can shatter my strength. It is during those times that I feel the loneliest, and I withdraw because I don’t want anyone to see me as anything but the true optimist that I believe I am.

What I am absolutely certain of is that having feelings like this doesn’t mean that I’m not an optimist. It simply means that I am human, and that I am entitled to experience the full range of human emotions. It’s what connects me to everyone and everything I know.

So as much as I allow myself these moments, I do not allow myself to dwell on anything for long. I have a husband who stays by my side through it all, and an amazing MS family who loves and supports me no matter what. Plus I have some incredible former students, and of course other friends and family members who deserve to see me as my true self: yes, I have moments of weakness, sadness, and depression. But I am a firm believer that tomorrow will always be better, and when the clouds clear, the view is always spectacular.

This week I am working hard at sifting through the lemons I am finding in front of me so that I can get to work on that lemonade. But I have no doubt that I will be pouring myself a glass very shortly…and it will be at least half full, and as sweet as ever.

Bru bought this shirt, which is truly perfect for me, on our trip to Newport, RI.

Ink

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Tattoos have never really been my thing. When I was growing up, no one really had them. In college some girls started getting small little tattoos on their hips or some other clandestine spot on their bodies so that their parents wouldn’t find out.

One summer I worked at a BIC pen factory where I ran a machine that assembled pens that had been ordered by various companies with their logos on it. Think about going to the bank and they have a can of pens, all with “TD Bank” on them. I assembled THOUSANDS of pens every single day. It was the most grueling job ever, and the people with whom I worked were some of the roughest characters I’ve ever met. One of the female factory workers disliked me from day one for no apparent reason, and she scared the crap out of me. She wore a tank top every single day, showcasing her back, arms, and chest completely covered in ink.

I even remember when I first started teaching, I met this woman in a teaching methodology class I took who shocked me in more ways than one. First of all, she was a heavier set woman who wore sleeveless shirts every single class, and I thought that was both gross and awesome at the same time. I have always had an issue showcasing my guns, and I get a little jealous when people just don’t care about being perfect. But more shocking to me was that she had tattoos on her wrists and hands, where her students could actually see them. I know this makes me sound quite prudish, but it was a very different time. “Corporate” dress meant that women had to wear slacks or skirts with pantyhose, and if a shirt didn’t have a collar, then neck attire (such as a scarf) was required. Additionally, girls were required to cover their tattoos with band aids. The tide has shifted so much that nowadays, getting inked is practically a rite of passage!

That being said, back in April, Bruce and I spent our anniversary weekend in Cape Cod. Maybe it was the fact that it was our anniversary, or that we were newly “engaged”, or just that amazing New England air…but something definitely came over us. As we walked up and down the heart of the Cape, we stumbled upon a tattoo shop and the jokes began. Hey, wouldn’t it be a riot if we got tattoos? What would we get? Where would we get it? Before long the jokes were no longer jokes and we were seriously discussing the idea. We both agreed that if we were going to do this, it would be something small and purely symbolic. Nothing fancy, nothing big. We both understand how people consider tattoos artwork and view the body as a canvas, which we can appreciate, but it just isn’t us.

On our 16th wedding anniversary, and just one month after Bruce proposed to me, we walked into the Black Pearl Tattoo Shop on Main Street in Hyannis. The shop was beautifully decorated with artwork by the various artists who work there, and we were greeted by no fewer than three amazingly friendly employees who were tatted up and pierced everywhere. When we discussed what we were considering, we were treated no differently than if we had each planned to get gigantic chest pieces. We were given their full attention and made to feel very much at home, even among these strangers who were so completely different than we are.

Bruce and I are planners, and spontaneity is not a word most people would use to describe us. But on this day, April 17, 2016, we stepped out of out comfort zone, and committed to each other in a totally different way than we have during our almost 22 years together. We opted for small block lettering, just three letters for each of us. Here is where the symbolism comes in. On my left ankle I have the letters “BRU”. I never recovered my full strength or function on the left side of my body after the onset on MS, and so I need Bruce’s strength on that side of my body. On his right side, his ankle reads “REN”, because we complement each other in every single way. Each tattoo took less than 10 minutes, and we were charged the shop minimum. When we walked out of there we felt even closer than we already were, and cracked up every time we thought about what we had done. We walked around asking each other, “Who the fuck are we?”, which of course prompted us to laugh even harder.

Small. Discreet. Us.

We didn’t really share what we had done with very many people, and we were surprised at who noticed and who did not. I was convinced that our nephew (now 17 months old) would be the first one to notice anything because, well, he’s 17 months old and he notices everything! Every time we had plans with someone we would take bets with each other on whether anyone would see our not-so-dirty little secret. It took over four months for most people to notice, or at least say something about it. In fact, lots of people in our lives will be finding out about our “ink” for the first time when they read this entry! And that’s ok because we did it for us and no one else.

Never in my life would I have imagined that I would have a tattoo, and I’m definitely not one of those people who is dying for more because the reason for getting it was not about the art or the self-expression. The whole idea behind our tattoos is completely personal. I love that Bru is always at my side and giving me strength when I need it, and having the visual right there means all I have to do is look down at my ankle any time I am feeling weak. Even though I didn’t think it was possible, we somehow deepened our commitment to each other when we walked out of that shop with our “ink”.

I recently told a friend (who has multiple beautiful tattoos) about our experience and shared a picture with him. He called us bad asses. I’m not so sure about that, but I do know that it feels damn good to know that my best friend and my partner on this journey will always be right there with me. No matter what.

The scene of the crime. Photo taken by random stranger rather than selfie stick because we wanted to include the shop in the background.

Making lemonade… because I can!

My journey as an eternal optimist, starting a new chapter in my life when MS forced me to retire from teaching at the age of 42.

Monthly Archives: September 2016

Detoxification

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Laughter

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Bucket List

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Loneliness

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Ink

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