Monthly Archives: January 2019

Being There

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Bill Murray. I think most people would classify him as a superstar, right? I mean, he’s been in a gazillion blockbuster movies through the years… and I’m sure he doesn’t have to worry about many of the struggles that “normal” people do. So why am I (a chronic illness/positivity blogger) bringing up something so random? Well, the answer is pretty simple. This week Bruce and I watched a fabulously entertaining yet quite powerful documentary called “The Bill Murray Stories.”

I had heard stories of how Bill Murray seems to pop up places, like he belongs there. For example, a couple was having an engagement photo shoot done, and out of nowhere, Bill Murray appeared and even took some photos with the couple. He has been know to show up at random house parties, stand outside of sporting events with an extra ticket and bring a random stranger into the game and sit with the person, and has even shown up at a karaoke bar and jumped in with a bunch of strangers and sing karaoke with them.

Watching the documentary made me realize a few things. First of all, it’s refreshing to see someone who has achieved uber fame connect with “regular” people. The effect he has had, as told by those who have had these Bill Murray experiences, is one of joy. Plus he’s not there to be able to create stories for himself, but rather it gives the others great stories to tell. Most of all, Bill Murray is about living in the moment and taking it all in, not looking to be treated any differently than anyone else.


This made me think that this guy has it all figured out. He doesn’t think about the fact that he brings such excitement to people when he “pops in”, but rather he just likes hanging out with regular people and doing regular things. He is truly present in the moment, and those around him see it, feel it, learn from it, and have amazingly sweet memories as a result.


It might sound silly that the guy from “Ghostbusters” and “Caddyshack” and countless other classic flicks could teach such a valuable lesson to us all, but I was indeed affected  by the film, almost as much as those who have Bill Murray stories to share. Who knew a comic actor with such a huge body of work could be the model of what we should all aspire to? Not me. But my hat is off to Bill Murray. Lesson learned.

Squad

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I often talk about my “tribe” and how much I lean on them when times are rough. But lately I’m thinking I need a linguistic change because, as a language person, a tiny difference in our vernacular can change our whole perception. For me, a tribe is something that you are born into, and not necessarily something you would choose if given the opportunity to do so. We had a small discussion of this word during Yoga Teacher Training and obviously it resonated with me. We threw some other words out there and the one I have been gravitating towards is “squad”. A squad to me, is made of people with a common interest and they are bonded to each other by choice. I like to think the that people who make up my squad want to be there, and perhaps that’s why it seems like certain members fall out because their priorities shift (which is totally natural) while mine remain the same: to remain as strong as possible, while also allowing myself to just be restful if that’s what my body needs. I feel I have always done for others, not for any other reason than it makes my heart feel good. Others don’t necessarily do like I do, and thus, if they want to leave the squad, as long as they are doing what makes them feel right, then I am fully on board.

These girls are unwavering members of my squad.

All of this brought me back to thinking about a million years ago, when I was part of the professional development team at school. I couldn’t stop thinking about this video we used, and so I reached out to my chocolate sister (a key player on my squad, and always has been) to see if she remembered the video. Magically, within minutes, she sent me the video and after watching it again (many moons later than the first time), as silly as it sounds, I relate it to my squad on so many levels.

(Please excuse the spelling error on this video! I didn’t make it and I can’t correct it!)

So I often think about geese as gross creatures that poop everywhere because we are plagued by them around these parts. I never stopped to think of how crazy intelligent and supportive of each other they are. As the video shows us, the lead goose takes charge and the others that form the “V” are propelled by the point of the V. When the lead goose has gotten tired or needs a rest, he falls back into formation and another goose takes the lead. For me, Bruce is the one who always takes over for me when I feel I can do no more. The video also shows that if one goose becomes ill, they do not allow him to fall out alone. Two other geese accompany him to safety. They stay with him until he is better (or perishes) and then they join a new formation.

My squad.

Thinking about the wisdom of geese has helped me to understand that people will drop out of my squad for reasons I don’t need to be concerned with. But then when I least expect it, new people join my squad and they are there to make sure that I can soar freely. And that is the real lesson here.

Yoga squad.

Everyone has their own life to live and I would hate to have people on my squad if they felt that I was holding them back in some way, or keeping them from living their own authentic lives. I have no hard feelings because I am living my life, and I can’t begin to understand (nor do I want to) the intricacies of everyone else’s.

MS squad.

I am unapologetically me, and that includes all the bits and pieces that come with me, pleasant or not. I am a human being, with lots of love and goodness in my heart. Has this led me to circumstances where I have opened myself up to being hurt? Absolutely! But I wouldn’t change it because during my low moments, there are always members of my squad who step forward until I am better, just like the flock of geese.

Squad captain.

And just like the flock of geese, my squad evolves as people drop out but that’s ok because there is always someone to lean on when I need it. 

Acceptance

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Last week, I had the pleasure of meeting up with one of my former students who I am especially proud of. This guy amazes me in so many ways, and talking to him about everything (and nothing) renewed my spirit. We don’t see each other very often, but he is dear to my heart because of all that he has been through.

Let me start by saying that I taught this kid for two years, and whenever I had students for multiple years it was always easy to form a real connection. He was a hard worker, never missed a day of school, and his grades never reflected that. He was extremely pleasant, very respectful, and did all that was asked of him. In short, I loved having him in class. He is a movie buff, so we always chatted about movies and TV shows. We still do.

Now I can’t even call him a kid anymore, because he is a 23 year-old man (which blows my mind and makes me feel old), but he inspires me so much. After high school graduation, he attained his Associate’s Degree from the local community college and moved on to a four year university here in NJ to pursue his Bachelor’s Degree in film production (of course). During this time, he had some medical challenges which required many, many doctor appointments and referrals to specialists and a very long period of time in which he was simply waiting for test results to come in. Lord knows, anyone who has had some sort of chronic illness can relate to the whole torturous process.

When he finally got those test results, he called me. He was diagnosed with a progressive neurological disorder that affects his legs.  We got together and talked about it. What I love the most about him is his attitude. He does not sit and wallow in self-pity. He goes to his classes, like any other college student. Sometimes he uses a scooter, sometimes a cane, and sometimes (like when I saw him), he uses no assistive device at all. He has made peace with who he is and what he has to offer those around him and the world. My connection with him started as a student/teacher relationship, but I can almost guarantee that the reason he is still in my life has absolutely NOTHING to do with the high school Spanish I attempted to teach him.

This is what it takes to connect as human beings: a common hobby, a common love of something, a mutual respect, and in our case, medical challenges that we both deal with, and will continue to do so for the rest of our lives. I don’t expect my former students to be a part of my life because they absolutely loved every second of my class. But if I taught them anything, I hope it was that I woke up every day, put a smile on my face, and gave them everything I had to give, with them knowing nothing about what was behind my smile. I mean, they knew I had MS. I was very open about it. But high schoolers don’t often understand what it means to struggle every damn day, and when they are a little older and perhaps learn a little more, they get it, and even more, they appreciate it.

While I can’t take credit for this guy’s attitude and self-acceptance, I like to think that even if it was subconsciously, I helped him (maybe in the tiniest way) see that we are not defined by our disabilities, but rather by how we live our lives despite them. And while I am extremely proud of the 4.0 he earned last semester (with just two left to go!), I am much prouder of his resilience and strength of character against all odds.

So once again, the student has become the teacher. I am inspired as ever, and grateful for the former students who inspire me every day. This is the true validation of my work and the rewards continue even though my career was stopped short. This world could be such a better place if everyone recognized that the best bonuses in life are not ever monetary in nature.

Happy New Year

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New Year’s Resolutions are not something that I give much credence to, and I don’t generally make them. Most people who make them stick to them for a brief period of time and usually they are forgotten before the first blooms of spring. Instead of making resolutions I like to talk about behaviors that I have incorporated into my life that have made me happy, and be aware of them to bring forward into the new year. After all, it’s a blank canvas waiting for each of us, and the possibilities are endless. While focusing on resolutions can lead to unnecessary pressure, behaviors that serve us well can be recognized immediately and are easily carried out. So, this week I am sharing just a sampling of my goals for 2019….

– Be as kind to myself as I am to others. This is not easy to do. Most of the pressure we put on ourselves is self derived. I always try to practice simple acts of kindness and that includes those geared towards my own self care. I will listen to my body, and if it requires a day on the couch with the dogs instead of on my yoga mat or volunteering, I will not beat myself up for it. 

How could snuggling with a sleeping pup on my chest be a bad thing?

– Live happily and freely, expressing joy and gratitude every single day. I journal my gratitude twice daily, and it helps keep me grounded in reality knowing that I am grateful for things that are far from superficial. Living happily and freely means doing what makes me happy without fear of judgement. After all, everyone’s perception is his or her own reality. Being different is not a negative… in fact, that’s what makes us human! 

– Stop comparing myself to others. It’s unfair to me because generally I compare myself to those who I think are “better” or “skinnier” or “smarter” than I am. Who am I to compare myself to anyone when no one I compare myself to has to live with the same life circumstances that I do? I can only compare myself to me, and then I can feel pride when I recognize how far I have come even though I still have a long way to go on my own journey.

If you don’t understand the “AF” part, ask a millennial!

– Each day, strive to be a better version of me than I was yesterday: physically, mentally, and spiritually. I think about the result my actions have on me and those around me, and I try to keep in mind how quickly we can affect others by how we act and what we say. I am constantly reading self improvement books along with the yoga teachings (which are surprisingly similar), along with practicing Transcendental Meditation and regularly seeing my therapist, all of which help me to understand the power that resides within me. 

– No one who lives with chronic illness is a stranger to setbacks, and I am including myself. I understand that a lot is outside of my control, and I can’t blame myself when those setbacks arise. What I know is that I always come back stronger after a setback because my determination gets fueled and I refuse to simply give in. I have fought MS long and hard for over 15 years, and I would venture to say that today, I am stronger as a result. Hell, I even beat the crap out of breast cancer because I’m so used to fighting. 

Proudly pink!

I could continue on with more of these positive behaviors and attitudes that I am giving renewed spirit to because it’s the new year, but these are conscious changes that are based in something so much more profound than making a resolution that most likely gets forgotten before we even get a good snowfall around these parts. If you are a person who can make resolutions and stick to them for the entire year, I commend you because I guarantee that you are in the minority. 

One thing I know is that when I stopped focusing on how others see me, and started focusing on who I wanted to be, everything changed for me. If you are a resolution person, go forth and fulfill those promises. And if you’re not, maybe you can reframe those resolutions to make them meaningful to YOU and your place in the world. Either way, may 2019 bring you joy, happiness, and good health, because every single living being deserves as much. And remember that it’s a long journey, so don’t forget to pause and enjoy all the magnificent landmarks along the way!

That’s Mendenhall Glacier behind us… the trip of a lifetime for us was Alaska!