Tag Archives: friendship

Affirmation

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Once upon a time I was a yoga drop-in junkie. I went everywhere and anywhere to any studio that offered the first class for free. Yoga memberships are not cheap, and I never would have the money to have one due to the fact that I live on permanent disability.

Then, back in late 2017, I was offered a scholarship at a local studio. While thrilled beyond belief, it was also a bit intimidating. When you drop into a class, you have the comfort of knowing that regardless of how the class goes, you will likely never see any of the people in class with you ever again.

So when I walked into “my” studio to take my first class, I was scared. I didn’t know what to expect. My stomach was in knots as I approached the studio and set myself up in the very back corner of the room. All around me women were gathered, mostly moms (which I’m not), mostly high class (also which I’m not), mostly in adorable yoga sets (not leggings and a t-shirt like me), and no one was overly welcoming. It seemed very clique-ish. And as I sat there thinking well that’s fine, as long as I get a nice class in, one bright, shining soul approached me with a big smile to say hi, tell me her name, how long she had been practicing, etc. I am so grateful for Suzette because her warmth made me feel not so awkward, and when other people saw us chatting, they seemed to follow her lead, at least on the surface.

This is the first selfie ever of me and Suzette, taken after one of the classes I taught in studio.

When I first started teaching chair yoga at the studio, Suzette NEVER missed my class, in studio OR when we began teaching remotely. She has always been so supportive and I’m so grateful for the studio that brought us together.

Now that I am no longer with the studio, we practice together several times a week, and have even managed some outdoor lunches when the weather has cooperated. As I continue my yoga studies, she is always willing to be my “crash test dummy” (as I call it) and she gives me great feedback whenever I need it. Suzette is my constant yoga partner and we also happen to be kindred spirits. It’s amazing how the universe brought us together that way.

Back in October, Suzette and I were getting ready to practice, and I decided to start our practice with an affirmation. We repeated it 108 times together, using Malas to count them. Then I integrated the affirmation into the class so it was all we could hear besides our own breath. We did this with our practice for a few days, and when we got to one that was very strong and resonated loudly with both of us, Suzette suggested that we repeat the same mantra together every day for 30 days. I thought it was a brilliant idea, and so on October 15, we began our journey. (Just as a side note, 108 is a sacred number which Vedic culture viewed as “a number of the wholeness of existence”.)

This is one of the Malas we used during the past 30 days, and also happens to be the one that my yoga teacher gave me when I graduated with my 300 hours of Yoga Teacher Training.

Every day, whether we practiced together or not, we at least FaceTimed and did our affirmations together. We had also decided to journal each day about how we were feeling, or any of our thoughts relating to the affirmation. Before each session, we took turns reading our journal entries from the day before to each other. Each day it became more and more obvious that the repetition of this affirmation was affecting our thought processes and re-wiring our brains to believe in what we were saying.

Virtual practice and affirmations together!

When I began writing this entry, I went back and forth about disclosing what the affirmation was, but in the end, I found it too personal and also a sacred oath between the two of us. We are all spiritual beings living the human experience, and as such Suzette and I are constantly striving to be better, to work through the crap life hands at us, and to accept ourselves in this temporary vessel we inhabit during this lifetime.

This was one of the beautiful days when we did our affirmations together in person after a 6 hour lunch! (Seriously we talked for 6 hours as if it was nothing!) You can see a different Mala on my neck in this picture.

Back when I was a teacher, I always told my kids that repetition was the key to learning anything, and now I believe that more than ever after 30 days of repeating this affirmation 108 times.

Some may read this and think it’s a little “hokey” or “out there”, but the mind is incredibly powerful. According to the English American Dictionary, when applied to the spiritual life, an affirmation is a statement of truth which one aspires to absorb into his life. Affirmations are dynamic and practical — not wishful thinking.

If you question it at all, I encourage you to try it. The power of your own mind might just surprise you.

CTCS

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CTCS is a term I coined myself, comparable to PTSD. In my world, this stands for Concurrent Traumatic Covid Syndrome. It can’t be post traumatic because the trauma is ongoing. It definitely has happened because of COVID. And the effects are very real, and I think it’s safe to say that I will never be the same person that I was before.

I wouldn’t say I am an overly social person in “normal” times, but I do enjoy regularly spending time with my small circle of loved ones. This has been vital to my spirit since I stopped working. I went from interacting with over 160 students plus colleagues every single day, to interacting with no one. When I left my job I was lucky enough to maintain relationships with so many students, and I also was blessed to find a very special MS family as well as a strong yoga community. And while I do enjoy my alone time, being around my loved ones definitely sustains my spirit and fills my heart.

Recently I was super excited for a very special event that had been postponed due to the pandemic, and was a celebration for someone incredibly important to me. We had been eagerly discussing it for so long, and I couldn’t believe the time had come. Along with it, however, came a fair share of anxiety, given my vaccination status.

Pre-event selfie to show how perfectly my mask matched my dress!

I listened to the guidance available at the time (and my MS Specialist), and got my vaccinations in January and February. When I reached full efficacy in March, it was so liberating. Not that I acted recklessly or changed my behavior much, except dining indoors twice. Then I came to find out that because my immune system is suppressed (as is typically the mechanism of action for many MS treatments) my body did not make ANY antibodies against the virus at all. None. Tested three times to be sure, and yet still… nothing. This changed everything for me because as everyone else started being able to socialize and get back to some semblance of normal life, I had to retreat back to quasi-isolation.

But this event was too important for me to miss and so with Bruce by my side and my big girl panties on, we drove over two hours to celebrate.

As we sat waiting for the event to begin, I started to feel my anxiety rising. I got the cold sweats. I started shaking. I was hyperventilating and nearly paralyzed with fear. It was an all out panic attack.

Bruce dragged me to a spot where he felt the air conditioning pumping and told me to look around. At that moment there was no one around us. He knows that crowds are often a trigger for me even in non-COVID times… and mask-less  people inside when I have no defense mechanism in my body have made this a million times worse.

With tears pouring down my cheeks and barely able to move, Bruce managed to get me to the car even though I was holding his hand in a death grip, slicing his fingers open with my rings. If he wasn’t there, I’m pretty sure I would have been curled up on the floor in the fetal position. As it was I was so thankful that no one saw me in this state, because the last thing I wanted to do was take away from the joy of this celebration.

I am so grateful for my other half, who always takes the best care of me.

The point is, many who are prone to anxiety are having more issues than people know about with the uncertainty of the future and COVID cases on the rise again. Mental health is extremely important, and that’s why I’m talking about this even though it’s also very private and personal.

I’m here to tell you that mental health issues are as real as those related to physical health and we all need to recognize that everyone is affected differently, especially given the current public health situation.

We all have our own comfort level and we all need to be respectful of each other’s boundaries. I tried my hardest to make myself comfortable in the situation I was in, but I just couldn’t do it.

I was so upset that I missed this event that I had been anxiously awaiting. And I was mad at myself that I couldn’t do it. And then, with some distance, I realized I couldn’t be mad at myself for something out of my control. I can’t get mad at myself when I have an MS relapse, and similarly, I can’t get mad at myself for having a panic attack.

Luckily the family was very understanding of what happened and hopefully I will get to celebrate this event with them on a smaller scale at some point when things are safer for me. I still felt awful about it (and continue to do so) but in the moment there was nothing else I could do.

The moral of this story is that we need to talk about mental health and we need to take it seriously. These are trying times. Be kind to others. Protect each other. Check on your friends and loved ones to make sure they are ok. And most importantly, take care of yourself because you can’t pour lemonade into anyone else’s glass if your pitcher is empty.

Note to Self

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This week, I  write a letter to my younger self about being diagnosed with (and living with) Multiple Sclerosis. I speak to the me that was in college, feeling awkward because for some reason, unbeknownst to me at the time, I found myself unable to keep up with the partying and social aspects that kids that age generally count on as part of the whole college experience. Without further ado, here goes!

Life is not easy. Sometimes we are thrown curve balls. Sometimes we hit them out of the park, and other times we miss entirely. I could tell you that it’s great being an adult with the freedom to make your own choices, eat ice cream for dinner, and stay up all night partying. But the truth of the matter is that choices have consequences that you’ll have to deal with somehow. I could tell you that it’s normal to burn out on the social scene in college, even if your friends are still going strong. I could tell you that the incredible, overwhelming fatigue is normal, along with the extreme clumsiness and weird visual disturbances that you write off so easily without giving it a second thought.  The truth of the matter is that you didn’t know any better, and why would you? No one at age 19 thinks that they will end up where I am now, at age 49, living with a chronic, incurable, and debilitating disease. No one at age 19 thinks that they will one day be a breast cancer survivor, and why would they? And certainly, no one at age 19 believes that her gene pool is so shallow that she would have to wade through the world of diabetes to boot. Somehow we all begin our adult lives wearing rose-colored glasses, impervious to how harsh reality can be. I wish we could all wear those glasses to shield us from the truths that exist in the real world, but at some point, you have to put on those big-girl panties and face the facts.

The biggest piece of advice I can give you is that even though you might think that you are invincible, you are not. No human being is. You must listen to your body, and be proactive about caring for it, because it’s the only one you get. If something doesn’t seem right, trust your instincts and do not hesitate to seek medical care because with all serious illnesses, early treatment is key. The world of Multiple Sclerosis is a scary one, and knowledge is one of the only things that can help it feel less intimidating. The truth is that in that world you will find a support system of friends who you consider family, only better, for the simple fact that they understand everything that you deal with on a daily basis. The most important thing you can do for yourself is surround yourself with people who exude positivity, happiness, peace, and light. Your MS will thank you because stress and negativity of any sort will manifest physically causing your MS symptoms to flare. Plus it’s so much nicer to be around people who are content rather than a whole bunch of “negative Nellies”. You are strong, but you are allowed to have moments of weakness, and it is at those moments when you can lean on the support system you have built. No one can be strong 100% of the time, and it doesn’t make you weak to express frustration, sadness, anger, or fear when you feel the need. You are, after all, only human. Just remember that those emotions are not productive and if you dwell on them, you will never be truly happy. Happiness comes from gratitude for all that you have and all that you are, and recognizing (and acknowledging) those pieces of you will always propel you forward.

My beautiful MS sisters, who came into my life exactly when I needed them most and they have not left my side since.

So live fully, despite your limitations. Live happily, despite your fear. Smile from your soul, because you are an innately optimistic person. Love with your entire being, and don’t waste your energy on those who don’t reciprocate that love. Be true to who you are, and be comfortable in knowing that you are enough. Most importantly, remember that there are no guarantees in life, and it doesn’t always follow your plans, so roll with the punches and make the best of every single day because life is fleeting… but also beautiful. As long as you are fully present you will never have any regrets. Trust me. I know these things. I have lived them. It has taken me time and reflection, plus a lot of work on myself to achieve acceptance and understanding. I did it for both of us, because we deserve nothing less.

Inclusivity

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So there is an activewear subscription box that people are loving, the price is great, and I’d love to be able to get it. There are not many subscription boxes for bigger people, and even Yoga Club Box, which I had an affiliate partnership with, stopped stocking my size… unless I wanted long sleeves (which I can’t work out in since I am heat intolerant), or tank tops, which I am very self-conscious in. I’m not going to name this box, but the outfits are adorable and I’d love to wear them. However, they are not size inclusive.

When I see their ads come up on Instagram or Facebook, I always comment about them not offering extended sizing. Usually I get a lot of likes from other people who feel the same way as I do: excluded because they do not fit into the societal standard of what the female body “should” be. I feel it’s my duty to let these companies know that we come in all shapes and sizes, and being non-inclusive alienates a large percentage of the population. I firmly believe that there is money to be made on us bigger-bodied, active women who want cute outfits just like our thinner counterparts. Once I make my comment about size-inclusivity, that’s where it usually ends.

Except this past weekend. I made my usual comment on their ad (on Instagram) and got my usual likes from others who support my reasoning. However, in addition to the usual likes, someone tagged me in a post by someone else that stated something to the effect that there is no need to extend sizing, it can just be motivation for bigger people to lose weight so they, too,  can get a subscription.  This did not sit well with me.

The post that started it.

As I rolled this info around my head for a bit, I had a few thoughts that I could not shake. One was that the other girl tagged me. I think she sees that I always comment on this company’s ads and she wanted me to see how ridiculous a comment that was. And while I normally don’t engage with people like this clearly perfect female specimen, I (after being super cranky because I had a bad MS day and I was frustrated), felt the need to stand up to this kind of mindset that is far too common among women particularly.

So this woman decided to share her wisdom, although when I asked her where she earned her degrees from she didn’t answer, especially when she said that getting smaller is “more healthier”, something this language lover ran with. She insisted that there’s no such thing as bigger frames, thicker bones, or medical reasons why someone might not be able to attain the perfect body that she clearly has. She then made it obvious to me when she said something like, “Wait are you big boned, muscular, or do you suffer chronic illnesses? I’m so confused!” I know you are honey. Because your tiny little brain can’t understand that none of those things are mutually exclusive of the other, and that none of these are reasons for a company to not be size-inclusive, which is how I ended it…

But not before she stalked my feed (which I don’t mind at all), and proceeded to talk about my “flabby body” and the “sag in my arm and belly.” Then she said “ok you do you, boo!” (which I did not appreciate but ignored because you just can’t fix stupid). Clearly not an ounce of compassion to be had, and kindness must not exist in her world.

This is the photo that sparked the comments about my flab and sags.

So I left it where I said, and told her to take good care of herself. Like I said, I normally do not engage with trolls like this, but her ignorance was palpable and I felt the need, not just for me but on behalf of the girl who tagged me and all the bigger bodies out there, to school her. I must have done well because she did not respond further. I already gave her more energy than she deserved, but I felt she needed to hear what I had to say.

Sadly, this is not an isolated incident. How is anyone supposed to make progress on a weight loss journey if they aren’t given some grace? We are ostracized for being bigger, and not supported on a journey to get smaller because people like Ms. Perfect can’t see the big picture. Just like this activewear subscription box. As a big girl, I love it when I have cute outfits to wear for working out, and it’s motivating to feel like you look cute while doing it. But it just doesn’t happen often enough because not everyone is size-inclusive.

No weight loss journey happens healthily overnight. These pictures were taken 6 years apart to the day. I will forever be a work in progress and I am ok with that.

The simple truth is that we are given this vessel that we occupy and it’s temporary. Think of a pitcher of water, a glass of water, and a thimble of water. All are different shapes and sizes. But what’s inside? Water. All the same! When will society understand this point? What we are inside is the important part. And as Bryan Kest, a famous yogi who speaks so openly on this matter says, “Isn’t it our differences that make us beautiful?”

This shirt is my affirmation that no matter what anyone says, and no matter my shape or size, I am enough.

I think so. I just wish the rest of the world could understand it too. It doesn’t take a lot to be compassionate and kind, and understand that no two human beings will have the same exact body size and shape, but neither is inferior to the other.

Sorry, “Boo”. You do you and keep your ignorant opinions to yourself. The rest of us will keep on working on ourselves while Karma takes care of you!

This is my rant to the troll.

Retirement

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This week marks seven years since I walked out of my classroom, thinking I would return in 2 weeks, after taking treatment for an exceptionally bad MS relapse. I never imagined that 9/27/2013 would be the last day I’d ever spend at the place that was my home away from home, the place where I spent the majority of my waking hours, the place that built my identity, and the place I loved so much it actually hurt. But those of us with Multiple Sclerosis know that MS does not play by rules, it does not discriminate, and does not go along with plans that you make, regardless of how carefully laid out they might be. 

Two weeks of work neatly assembled for my substitute.

I left in pain, barely able to ambulate on my own, and full of sadness I felt at the thought of leaving my beloved students so early in the school year. I held onto hope that the treatment would work quickly and efficiently so I could get back to what I loved so very much. But like I said, MS is unpredictable, and the treatment that had helped me when I needed it most in the past let me down and had little effect on the storm brewing under the surface where no one could see.

This was the disaster of treatment that i was out for.

Little by little, as I struggled through painful and exhausting physical and occupational therapy, my return to work date kept getting pushed back, and the vast majority of people could not understand that I did not have a firm return date. I wanted a return date more than anyone, and I was so frustrated because I felt like my body was letting me down. I always worked hard to stay physically fit and active, which I leaned on in past relapses, but this one was different. I was working so hard, and not seeing (or feeling) results, sending me spiraling into the deepest depression I have ever known. I felt worthless, lost, and missing a huge part of myself because I did not know who I was if I was not Mrs. Rankin.

This is what I depended on for ambulation when I went out on disability.

The two best things I ever did for myself at that point were enrolling in a twelve-week wellness program for MS patients, and starting with a new therapist who specializes in treating those with chronic illnesses, specifically MS. In the wellness program, I met my MS family, a diverse group, ranging in age and ability, but our connection was instantaneous. I finally felt like I found a piece of me I needed to help build me back to where I was before. And my therapist mostly just listened to my cry every week for months until I finally started to feel better, but knowing I could never continue to do my job.

My 12 week wellness group.

Making the decision to apply for long term disability was one I struggled with and kept putting off thinking I’d magically wake up one day just like my old self, and my students would walk into school with me at my desk at 5:45 am as usual. Sometimes with MS things go as quickly as they come, and I wished with all my might that it would happen for me this time. But no such luck. And at the same time I was feeling a deep sense of loss and grieving the community of long time co-workers who proved to me that out of sight indeed was out of mind. It was the perfect internal storm that made me feel so conflicted.

This was the window to my world: a safe space, a sanctuary for many students, and my home away from home.

But the most amazing thing happened once I started to understand that my plan was not meant to be and that the universe had greater things in mind for me. As other friends left my side, my MS family embraced me, even with my many flaws. They were there for me (along with my many, many former students), as I fought to become strong again, and they supported me years later when I battled breast cancer, and again as I was given another lifelong diagnosis of diabetes. These are my people… my squad. They helped me find my place in the world again even when I thought I’d be lost as always.

Just 2 of my special girls who came to say goodbye as I tearfully cleaned out my classroom at the end of the year.

My plan did not work out as I had thought, but I realize now that it was never meant to be that way. In this new life, I have found a sense of freedom, the ability to fully enjoy the time I spend with loved ones without having work constantly in the back of my mind, and a true appreciation for the ability to give my body what it needs when it needs it. Looking back at where I was seven years ago to where I am now is like night and day, and even though it’s not what I planned I am ever more grateful each and every day. Even during COVID times, I still find new reasons to be grateful every morning when my eyes open to a new day full of possibilities.

Every day is full of new possibilities!

I will always treasure my days in the classroom, but I no longer get sad that I’m not there. I embrace it as a beautiful part of me and my past, and I am proud that I did it as long as MS allowed me the gift of being able to do the job the way the kids deserve for it to be done. This piece of my past is the biggest part of who I am,  and I have zero regrets when I look back.

I loved this pace with every fiber of my being.

Being able to focus on me and my loved ones instead of my students and my school has made my life so much richer, and now I get to enjoy the best of both worlds… I can listen to my body and what it needs, but I also am surrounded by the love of my chosen family: those very special students (now all young adults) who have made it clear to me that they are with me no matter how many years pass, and I feel the same way for each of them. So instead of feeling sad, I feel blessed. It took a minute, but I couldn’t ask for anything more.

This. My MS family.

PS. Shout out to my chocolate sister and best friend for riding this wave with me, even though we no longer work together. She is the one I turn to still… and the gift of her friendship has sustained me for so many years now. ❤️

The one who has been at my side from when we first started working together and who never leaves my side even though I am no longer her “neighbor”. She is my rock, my anchor, and my best friend.

Marty’s Place

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I was so honored to be the voice of the volunteers on this segment from our NY WABC affiliate.

Over three years ago, I began volunteering my time at Marty’s Place, a sanctuary for senior dogs. When I stopped working in 2014, I felt it was my duty to volunteer my time somewhere, because I wanted to give something back to the greater good while also instilling within me a sense of purpose. Before discovering Marty’s Place, I had been volunteering at the MS Center where I have been a patient for almost 17 years, at the request of the medical director there. While I enjoyed my time there (working the front desk, answering phones, confirming appointments, and trying to make the patients feel a little more comfortable), I felt undervalued and unappreciated, and without anyone even holding a conversation with me, suddenly I was “no longer needed”, after being begged for months to please volunteer there. As much as I was upset and surprised that the people who I have considered integral members of my care team didn’t even give me the courtesy of a conversation about my position there, I was equally as happy because that’s when I found out about Marty’s Place. It was the best thing that could have happened, because I would happily spend my time with dogs rather than MS patients (or people in general) any day of the week.

I used to call this guy a little Tootsie Roll because he was a chunk when he first arrived, but now thanks to a proper diet and exercise program, he is so slim!

Marty’s place is NOT your ordinary facility. It is NOT a shelter. It is a loving home for senior dogs (age seven and up) who have found themselves without their human family for a myriad of reasons. Some of their owners end up in long term care facilities where they can not take their animals with them. Some of their owners’ life circumstances change. And some of their owners pass away with no family able to take on the responsibility of a senior dog, many of whom require special attention. Even though these stories are heart-breaking, most of the dogs who find their way to the sanctuary settle in quite nicely.

These are the “twins”… not really twins but bonded sisters who are the absolute sweetest.

I drive a good 40 minutes each way to be there because I love it so much and as soon as I enter the driveway, my heart feels so much joy because I know what awaits when I enter the facility. Let me just tell you that there could be no better fit for me to volunteer my services. Think of an assisted living facility, but for dogs. It’s bright and clean, and each dog is loved and cared for according to his or her own needs. They even do aqua-therapy with some of the dogs in order to ease medical conditions that benefit from this kind of activity. This is not a shelter, it is a home. My job is to hang out with the “residents”, playing, belly-rubbing, loving, hugging, walking, and feeding them. At one point on my very first day there, as I was on the floor snuggling with three different dogs, I remember looking around and feeling overwhelmed by the goodness in it all. I told the other volunteer (as this place relies heavily on volunteers and there are two volunteers for every shift) that I couldn’t think of a better way to spend a day. I was surrounded by love and gratitude. When I leave after my shifts, I always find myself smiling uncontrollably, even if the walks are rainy, snow-filled, or brutally hot and sweaty, and I smile like that the entire car ride home.

This is the main entrance and behind those doors lies wagging tails, wet kisses, and so much love.

If you are a regular reader of the blog, you know that I am a firm believer in the universe and that things happen just as they are supposed to. I believe that I was meant not to volunteer my time at a medical office, scanning papers, answering phones, and talking to other MS patients, but that my compassion could be put to better use taking care of truly helpless beings who only want to love and be loved. The kicker is the name: Marty’s Place. Having had my own little Marty made me even more aware of the universal connection.

This girl right here, Abby the Labby, got adopted so quickly that I only spent one day with her! What a lucky family…

When COVID first hit us here in NJ, many of the dogs were quickly sent to foster homes, mostly with seasoned volunteers who know the quirks of each dog well, while the director of the sanctuary tried to figure out how they could sustain the same level of care that makes Marty’s Place so special. We were unable to volunteer until they reopened for us in June, with a reduction in the number of volunteers working. So instead of working with another volunteer, we are alone with the dogs, and we have limited contact with the very few employees unless we are walking the dogs, safely distanced, yet wearing masks for extra precaution. I can’t even tell you how I felt when I walked back through those doors, seeing my furry friends again, and even meeting some new ones. The economic situation has taken a toll on Marty’s Place, a non-profit that relies heavily on volunteers and donations, much of which comes from annual fundraisers that have proven to be successful but can’t happen with the proper precautions in place to keep everyone safe and healthy. It breaks my heart that a facility that does so much good for helpless, loving animals is struggling so hard to give these seniors everything they need and deserve as they live out their golden years. And even with limited shifts, and my inability to be with these “rescues who don’t live with me” as often as before, I make my time count and I do everything in my power to make these very special dogs feel loved more than ever before.

Beautiful Bella.

As much as I’d love to be able to put in more time than a few hours every week, I do know my physical limitations, so I know that I am doing as much as I can manage. Plus I’m pretty sure I have enough love to give these dogs to sustain them until the next week when I return. These animals are never nasty or demanding, they don’t get frustrated when things don’t go their way, and they greet everybody with a tail wag. I’d choose to spend most days with dogs over people anyway, and I won’t make any excuses about it. I have a sign in my house that says “Dogs Welcome, People Tolerated”, and a T-shirt (in three different colors) that says “Dogs (because people suck)”. Need I go on?

I wasn’t kidding!

PS. If you are able, please feel free to donate here: https://martysplace.org/donate (no amount is too small and every penny is appreciated and put to good use) or you can check out the Amazon wishlist here: https://smile.amazon.com/gp/registry/wishlist/YFNYQ96R4MCB/ref=cm_sw_su_w

I am also doing a personal fundraiser for Marty”s place until the end of August, so if you would like to sponsor me as I do Sun Salutations for Sanctuary Seniors, you can check it out here: https://runsignup.com/Yogaren

The Dash

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After my grandmother died in 1994, my grandfather and I would go to her grave together every year. It was one of our little rituals. I’d go pick him up, we’d go visit Grandma, and then he would buy me lunch at the diner (insert comment on stereotypical Jews here). Each year I watched him read from his Yiddish prayer book, ask her to pray for all of us, and sob on her headstone. And every single year, he would repeat this same request: when he died, he did not want the year of his death carved into his headstone. I can still hear him telling me, “No end date!”

Me and my Gramps. He was the apple of my eye and I loved him so very much.

I hadn’t really considered my grandfather’s reasoning until I was introduced to the poem “The Dash” by Linda Ellis (I really hope you read the poem above!). I finally understand now why my Gramps was so insistent on this tiny detail, which once upon a time seemed ridiculous to me.

So here I am almost eight years after his death, and at long last I recognize the lesson that my grandfather (even if inadvertently) taught me. What was most important to him was the life he lived, not the day he died. He did not want to anyone to focus on his death, but instead he wanted to be remembered for the person that he was.

I visit my grandfather every year on his birthday, and on the anniversary if his death. Notice how we honored his wishes by not putting that “end date” on his headstone.

Ever since I read that poem, I can’t stop thinking about how adamant he was about the “end date”. I also can’t stop thinking about my dash, but not in a morbid way. Quite the contrary, actually.

I have been reflecting on the many changes that have happened in my life since MS decided it was time for me to take disability retirement, and I feel so incredibly grateful. I never would have chosen to leave the classroom when I did if I had a choice, but I didn’t. As much as I miss my students (my children), I am secure in the fact that I taught them something, no matter how small, at some point in time. I would bet money that if they were talking about me after my passing, they would not be talking about the “end date”. They would be talking about the dash. On the other side of the coin, I find that I am a much more patient, loving, and attentive wife, sister, daughter, and friend since I stopped working. As much as I treasured every moment as a teacher, I was never really living my dash when I was working. I was the typical “live to work”, not “work to live” kind of girl. I never completely enjoyed anything because I was only ever able to focus on my job. It was always on my mind, because the job of a teacher is never done (shout out to my teacher peeps out there!). It is physical, emotional, stressful, demanding, and oftentimes, thankless. It’s no wonder that me, and my poor compromised immune system cracked under the pressure! Now that I am 100% focused on life outside of being a teacher, I am actually concentrating on my dash.

Teacherly duties: signing yearbooks at the end of the year!

I loved being a teacher. I hope I’ll always be remembered for it (in a good way!). But now I’m living for me and enjoying every moment that I don’t spend working….or agonizing over work. I haven’t taken the teaching part out of my dash, I’m just adding to it now! I’m so grateful that I have been given the opportunity to live my dash now, before it’s too late, because I am fearlessly working on this chapter of my story.

I have taken my teaching to a different classroom now… teaching yoga and loving every second of it. (Photo Credit: Jin at FotosForTheFuture)

 

 

Joy

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The other night I was talking with one of my favorite former students on the phone. It might sound strange to some who don’t understand the dynamic of the relationships that a high school teacher forms with her students, and often continues to grow as they start adulting. Having them in my life is so special and is the greatest gift teaching gave me. Anyway, we were catching up as we do quite often, and he innocently asked me how I was doing. My response was that I’m exhausted from just living right now. I meant it and although he understood exactly what I meant, we both started laughing. I mean, I guess it does seem like a pretty outrageous thing to say, but the reason he laughed is because he feels exactly the same way… between the virus, the fear, the politicizing of things that are not political, the social issues (which hit me like a ton of bricks), a recent layoff, and living with MS too??? Holy cow! Yes! I am exhausted.

This is one of my very favorite people in the whole wide world, and he just happens to be a former student. Isn’t he so handsome? Anyhoo, I am so proud of him and I love how we always ALWAYS understand each other.

Back in December, I created a jar that was meant for me and Bruce to write down happy memories, along with the date, to be read on New Year’s Eve so that we could remember all the great things that happened in 2020. I wrote on the jar “a year’s worth of moments of joy” and on the lid it says “good vibes only”. My goal was to be add to the jar twice a month. Little did I know what 2020 had in store for us!

Amazingly, even during the lockdown resulting from the COVID_19 pandemic, I have continued to add to my jar. These moments of joy might not be as grand as they would have been without being isolated, they still exist. They might be harder to see now, but they are there. Sometimes we just have to look a lIttle deeper and be open to seeing them, which could be much more difficult during these times, but I assure you that you, too, can find some joy.

And look at all these precious moments of joy I have been able to document even during trying times!

Is there air flowing in and out of your lungs? Is your heart still beating? Are you connected to those you love via text, FaceTime, or social media? Are you safe at home? Are you bingeing something enjoyable on any of the streaming services we are so lucky to have? Have you read a good book or picked up a new hobby? Are you organizing and/or doing little projects at home?Are you cooking more? Spending quality time with your quaranteam? Does the sun still shine? Are flowers blooming? If you answered yes to any of these questions (and I bet you have!) then you are experiencing moments of joy. Embrace them. Revel in them. Let them sustain you through the more difficult times.

Flowers are still blooming and bringing beauty into our world.

As someone who lives with a chronic illness, I am constantly adjusting to new normals in my life, and that’s what the whole world is doing right now. Things may look bleak at the moment, but things WILL eventually get better. In the meantime, find your joy, no matter how small, and allow its beauty to carry you through.

 

Dear MS

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I’ve spewed evil thoughts about you through the years, I’ve cursed your existence, not just in my life, but in the lives of all those affected, and I’ve fantasized about a world (and my life) without you in it. And here I am, looking back at my life knowing what I know about you now, understanding that I have been spending time with you since 1992 even though my official diagnosis came in 2003. There are things I want you to know, so here is my letter to you. It’s not exactly a love letter, but at this point it isn’t full of hate either.

You came along at a point early in my marriage, when things weren’t so hot. Neither of us was certain that we would last and we had our fair share of marital problems. But through the onset of my symptoms (which were more pronounced than anything I had experienced before), and the endless testing and doctors’ appointments that led to my diagnosis, you made us stronger. You drew us closer to each other than ever before. You made us see what matters most in a relationship, and you helped us re-prioritize our values. For this, I am endlessly grateful because without Bruce, I am nothing, and without him, I would not have the strength to deal with your constant need for attention.

This is my husband, my partner in crime, my best friend, my soul mate, my care partner. Basically my everything.

With the exception of the one relationship that matters most, you changed all of the other ones that existed in my world at that time, and not in a good way. You made people look at me differently, question my reality, and walk out of my life because they didn’t know how to act around me. Sadly this behavior has not changed, and after every relapse my support circle gets smaller. But without you, I never would have found my MS family, or realized the strength of support my little circle offers me. Without you, I wouldn’t express my gratitude to them as often as I do because it’s so important that they know that I appreciate every aspect of who they are and what they offer me, especially when I need them most.

This is my amazing MS family, and I am forever grateful for all that they give me.

You took away my ability to do simple things because of neuropathy, heat intolerance, vertigo, “fumble fingers”, tremors, spasms, bladder issues,  daily pain as well as “painsomnia”, and the list goes on. You forced me out of a career I loved far before I was ready to give it up. But in exchange, you gave me the ability to listen to my body, learn my limitations, and focus solely on me and my health. It’s a gift I never take for granted, and one that has improved my life in huge, wonderful ways.

The dangers of cooking with MS neuropathy… not realizing you burned yourself until much later!

You made me learn everything I could about a disease I knew nothing about until I had to. You made a girl who struggled with science learn more than she cared to about the brain and central nervous system. But because I learned so much, I have been able to educate others, including my students when I was working, my colleagues, and ultimately hundreds of others as a patient advocate speaker. You, MS, gave me my voice and you made it more powerful than it ever was without you.

Here’s me, spreading awareness and speaking to the high rollers at a very exclusive wine-tasting fundraiser.

You put me through the endless cycle of weight loss and weight gain thanks to your relapses that require high dose IV steroids, causing me to balloon up, and then leaving me with the daunting task of getting back to my “normal”, when you take more and more of my function every time. And because of that, I learned how to meditate, do yoga, and workout with a trainer who is passionate about helping MS patients. I am not going to lie and say I have great body image, but I’m learning how to accept my reality and be proud of the small accomplishments regardless of how small they may seem to others. I have learned to change my mindset and I exercise to maintain my strength, not to be skinny. I understand that I am a work in progress, and I will be for the rest of my life.

You have not managed to break my spirit, take away my ability to love and be loved, or change who I am fundamentally: the glass half-full girl. You have not made me ask “why me?”, because I think “why not me?”. Your presence in my life has helped me see more clearly, laugh more freely, and love more deeply than I ever thought possible. While other patients might write you a letter full of anger, resentment, and spite, that’s not how I roll. This letter is one full of gratitude for all that I am and all that I have despite it all. I am now and will forever be thankful for these lessons I have learned, no matter how difficult the road to learning them has been. Some people live an entire lifetime without knowing what I know now, so how could I possibly be angry? Life is what we make of it, and no matter how hard the journey, if you stop to appreciate all that you have rather than dwell on what you don’t, then you can join me in a life that may not be what you had planned, but is still overwhelmingly beautiful.

Admiring the beauty all around me is something that has only happened in recent years, and by far it’s one of the greatest gifts MS has given me.

 

Heat Intolerance

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Now that summer is upon us, I am already mindful of the blistering heat and humidity that are par for the course living in NJ. I definitely love the summer vibe that is palpable everywhere you go, as winter coats are traded in for tank tops and Uggs go back in the closet in favor of flip flops. While I can appreciate the sentiment, summers are not easy for me due to heat intolerance caused by Multiple Sclerosis.

The sun, while beautiful, could quite literally be the death of me.

This year I am particularly anxious about it. I haven’t exactly been able to figure out why the heat and humidity can wreak such havoc on my body, even when I am confined to the meat locker conditions that keep our air conditioning pumping all summer to maintain a blustery 64 degrees inside our home. But it does.

I spend the vast majority of my time during the summer inside anywhere that it is climate-controlled, preferably where I have control of the thermostat. While I am grateful to live in a country where air conditioning is available and with a husband who appreciates the cold air, too, this really is a necessity for me, and many other MS patients, who are deeply affected by extreme temperatures at either end of the thermometer. I wish it was simply a matter of heat making me feel uncomfortable. Or me disliking being hot. However, when I overheat, it is much more serious than that. My body begins to buzz and vibrate everywhere, from the inside. All of my symptoms are magnified, which means my tremors are exaggerated (even in my voice and my eyes), I tingle from the bottom of my feet to the top of my head, and most importantly, I suffer from  what is called Uhthoff’s Phenomenon, which occurs due to optic nerve damage. This is by far the scariest of my heat-induced symptoms because it causes my vision to get blurry, distorted, lose borders, or go away entirely. (Just a side-note that this can also happen when exercising, which is always a balancing act walking that very fine line between working hard, and over-working.) So naturally, I do everything within my power to avoid all of it by staying cool. In summer months, a look inside my bag will reveal snap and break ice packs, a mister, a hat to keep the sun off my face, and a good old fashioned folding fan.

Summer beach house with the family… private beach entrance meant I could come in and out of the heat as needed.

When I was still working, I jumped through unbelievable hoops to have air conditioning installed in my classroom, which was a process that did not happen quickly or easily. The principal of my building at the time was not happy about my request, and she even told me that people who had made such requests in the past were told to get a job elsewhere. I didn’t. Because the Americans with Disabilities Act requires employers to make reasonable accommodations such as this one. It was a simple solution to maintain my ability to continue to do my job, and everyone acted like it was a gift. I often had co-workers tell me “it must be nice to have AC in your classroom”, to which I always responded I’d trade the air conditioning in a second for a healthy immune system. I would have preferred to be healthy and hot than to require this accommodation in order to perform my job.

While air conditioning is my savior during the oppressive heat and humidity, I do experience “cabin fever” as the lazy days of summer lead to autumn. I am especially worried this year because I have been self-quarantining since March, and even as my world has slowly begun to open, my outings have been limited. I am just hoping that somehow we get a more temperate summer so that I can enjoy some time outdoors, soaking up some Vitamin D, without fear of losing my vision due to overheating. Thinking back to past summers and how antsy I get by being constantly held hostage by my need to stay cool, makes thinking about this one (already at home for over three months) kind of intimidating.

I dream about the days before MS limited my time at a place I love so much.

In the long run, I always do what I have to do because I have been doing it so long that it’s all I know. The point of this whole entry is that heat intolerance is real, and many MS patients suffer from it because we can not thermoregulate like others do. In other words, our inner thermostats are broken. Just a few years back, we lost one of our own because before she realized how overheated she was, she had become paralyzed and could not even speak. She was rushed to the hospital but because she could not thermoregulate, her core temperature had risen to 107 degrees, and despite being packed in ice, she did not make it.

If you are heat intolerant, please be prepared, and educate those around you so that they can help you if need be. No one wants to see another warrior succumb so tragically and unnecessarily. Even though I have been aware of my heat intolerance for many years now, it took me  a long time to realize just how serious it can be. Now, there’s no way I could ever forget.

(RIP, Sarah.)