Monthly Archives: November 2019

Kirtan

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As I’m dealing with double tennis elbows, I have not been feeling like myself. My workouts with my trainer have been adjusted so that we are very careful about exerting any pressure on my arms, the area I most want to work on, and because I train more like an athlete than an MS patient, and I just can’t seem to get the endorphins flowing.

Plus, my yoga practice has been suffering, too.  I have only been going to the studio to teach my accessible yoga class, but any practice I’ve been doing is at home because when I’m practicing with others, I am caught up in the communal aspect of sharing these sacred teachings and I tend to do things I shouldn’t because I lose sight of the fact that I have a very slow-healing injury. At home I can work my balance poses, standing folds, and seated stretches knowing full well that I have two severely injured elbows. Unfortunately, yoga is so much more than the physical part for me… it’s also emotional and spiritual. I can meditate and do self study for hours upon hours without feeling as satiated as I am after a good practice at the studio.

Me and my beloved harmonium… and a Squiggy photo bomb!

This past week, I had the opportunity to attend a Kirtan. So what is a Kirtan? “ Essentially, Kirtan is devotional chanting.With roots dating back over 500 years to India, this form of Bhakti Yoga (yoga of devotion) has the magical ability to open your heart. Musical instruments, vocals and rhythmic drumming all encourage the audience to chant, clap and dance along. This heartfelt and joyous expression can induce profound states of meditation, bliss and ecstasy.”  I love chanting, and since I recently was given my own harmonium, I am working on learning chants to use in my own classes because I feel it’s that powerful.

Here’s a little taste of the Kirtan!

I was so happy that my yoga sisters also wanted to attend this Kirtan, and our teacher has known the couple leading the Kirtan (touring under the name Prema Hara for years. So we gathered at the yoga studio hosting the event, and before anything even started, the energy in the room was palpable. Most people there had experienced Kirtan before, but I had not. So basically, it’s call and response, and the words were also projected on the wall so it wasn’t necessary to remember what you were supposed to repeat. This was a huge relief for me, since MS makes it hard for me to remember even after I’ve just heard something.

I am forever grateful to these goddesses… I could not have gotten through yoga teacher training without their love and support.

My experience was exactly what I needed. Bonding with my yoga sisters, which doesn’t happen nearly enough, was a great start. At first I just listened even at the parts when I should have been singing. My teacher chants with us at class, and I love it, although I didn’t know the ones that we were singing that night. I am self conscious of my voice because it’s terrible, but after a little bit of silence on my part it was hard to remain so because the energy and passion is contagious. Slowly I began to participate, very aware of my own voice, but I didn’t particularly care. Then, magically, my voice seemed to blend right in with everyone else’s in the room, and suddenly it was as if we were all sharing one voice. It was then that I realized that regardless of how different our outer shell (or physical bodies) are, we are all the same. And as Bryan Kest, known for coining the phrase “power yoga” says, “It’s our differences that make us beautiful.”

The words were projected for us.

Soon the room was literally bouncing with energy. Some people were dancing, clapping, or swaying with their eyes closed (something an MS patient would never attempt thanks to vertigo and balance issues!). There is something very magical about the vibratory sensation that connects perfect strangers together. There was no judgement, no hate, no ill-will. It was all about a shared experience of celebration and love. It was exactly what I needed in order to reclaim the spirituality that has been missing since I’ve been sidelined. And it continues as every day I take out my harmonium and practice the chants that I have been learning. I think I’m even becoming more comfortable hearing my own voice because it doesn’t really matter! I’m saying the words with the love, passion, and gratitude that’s in my heart, and I am less concerned that I might be off-key.

Everyone on their feet and doing their thing.

Unfortunately, we had to leave early because it was a school night, but I will savor the feelings of light-heartedness, joy, and spirit that filled the emptiness I had been feeling prior to attending my first, and hopefully not my last, Kirtan. It might not be for everyone, and when I first started practicing yoga, I never would have thought it would be my thing. But it is now, and I love it. This might not be your cup of tea, but experiencing it cemented the following for me:

Lokah Samastah Sukhino Bhavantu (May all beings everywhere be happy and free) — “Sanskrit prayer used for centuries to invoke greater states of compassion and peace.”

Marty’s Place

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Almost two and a half years ago, I began a new adventure in my passion for volunteering. It’s a very special place, and I began researching it long before I actually started, when I saw the writing on the wall where I was volunteering at that time. I had been volunteering at the MS Center where I am a patient, at the request of the medical director, who just happens to be my neurologist. For two years, I happily drove the 23 miles each way every week, to make things even a tiny bit easier for those who have cared for me for so long. As much as I would have liked to increase my hours, I knew that I was not physically able to do so. When they finally hired a full time certified medical assistant, I saw that I no longer was needed, although I would have been happy to continue on as needed to cover vacations and sick days. Unfortunately no one ever bothered to have a conversation with me about my position, and instead I continued to show up. One day, upon arriving, I was told I was not needed and I should go home. I was irritated on so many levels that I began my search for a new volunteer gig. You see, since I am no longer working, I feel that it is my responsibility to do good for others. It keeps me productive and useful, and it feeds my soul.
So on the day I was sent home, I decided I would seek “work” elsewhere. I mean when someone (Like me, for example) is willing to work (and work hard!) for free, and instead of appreciation she is given the brush-off, it kind of sours the experience. Then I found Marty’s Place, which is a sanctuary for elderly dogs, who in their golden years find themselves without their human, perhaps because they died or entered a long term care facility where their four-legged family could not be with them. I downloaded the application, super stoked at the possibilities…. but then breast cancer happened so everything in my life took a place on the back burner.

Morgan is always a big hit with visitors to the sanctuary. She is pretty blind and also kind of deaf but she is such a sweet soul.

Fast forward about six months to when I finally started my new “job”, after completing the orientation a few weeks prior. 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 Wendy… a small girl with a big mouth. she is irresistible!

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.

Cocoa is a beauty and one of the ambassadors who you will always see at public events because she loves everyone.

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?

Big Buddy boy… over 100 pounds of pure love.

 

Dear MS

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Dear MS,

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 picture was taken just 11 days after diagnosis.

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.

You took away my ability to do simple things because of neuropathy, heat intolerance, vertigo, “fumble fingers”, tremors, spasms, 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.

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.

Without the stormy wether we would never be lucky enough to experience beauty like this…

 

 

 

November

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November is typically one of my favorite months of the year. I love the change of seasons as summer rolls into fall. I love the cooler, dryer weather (the curly girl in me can’t not love the ability to wear my hair however I want with no frizz!), and I love breaking out my hoodies and Uggs.

Curly hair, don’t care!

I think when I was still in the classroom, I was always excited about November because between Thanksgiving and teacher’s convention, days off just as you’re burning out without having to touch the days in your bank are totally necessary and much appreciated.

I love watching the foliage as Mother Nature uses her palette of colors to remind us all of the everyday beauty wherever we look. I can literally stand in awe (and photograph) this season all day, every day.

But most importantly, it is a month of gratitude. Not everyone journals things to be grateful for day and night like I do, but even people who normally don’t express their gratitude seem to exude it naturally during the month of November. There’s a certain change in the atmosphere during November that just makes me feel more alive.

In November, the month of Thanksgiving, there is no shortage of smiles and kindness, and it doesn’t carry the same selfish commercialized madness that December does.

November always grounds me, brings me to my happiest place, where I am so full of gratitude I feel like I could burst. There is no shortage of love for those who support me,  and I don’t waste the opportunity to tell them so. I am always appreciative for all that I have managed to overcome, and still smile and laugh and love despite it all.

Perhaps it’s because of all my struggles that I don’t just feel this way in November, but those feelings are magnified what seems like a hundred-fold  at this time of the year.

I’m issuing a challenge to all of my readers this week. It’s simple really. Just be grateful. Be happy for wherever you are. If you are struggling, know that you can move beyond. Look around you, take it all in. And never, ever take the love and support of your squad for granted because they are the ones who will always be at your side.

MS squad

To my squad… I have no words to adequately describe the love and appreciation I feel for you. You lift me up at my darkest times and my gratitude for you is felt every single darn day, and every single darn day I thank my lucky stars to have such amazing people in my life. And every single darn day I wonder how I got so lucky to have the most amazing squad ever. It may be smaller than it used to be, but I’ll take quality over quantity any day.

Rankin squad.