MySoul: An MS Story

I was recently asked to tell the story of the diagnosis that led me from worrier to warrior. I had been tormented most of my life by a vicious reality. I was strong mentally and emotionally. I was that kid flexing muscles and competing all the time. I could be dared to do anything. … but then I would have these days, or moments, when I felt so weak, so tired. For as long as I can remember, I went from diagnosis to diagnosis. Things got really bad when I was in sixth grade, nearing the end of elementary school and entering puberty.

Something happened. No one ever fully explained it then nor yet. We were shopping after Christmas sales as a family and everything started moving all around me, not spinning exactly, more like floating or undulating. I went down. I had to sit. That night was the first of many doctors visits. Most left me feeling like I was probably just crazy. But for months I could not sit up for extended periods. My honey blonde hair actually changed color to a dark dirty light brown that seemed to have a greenish hue. And I cried a lot, home each day. My muscles were still strong. My wit sharp. My humor shifting from silly to dry, but quick. What was wrong with me?

That’s when I was given anti-seizure meds. Then there was the time I was given immuno-suppressant meds for an immune disorder. Then there was the time I was diagnosed with lupus. Then there was the time that I went off all meds and did pretty well, but new weird symptoms kept creeping in. Where did these random panic attack-like feelings come from, at odd times? Why did my hands hurt so desperately sometimes that I couldn’t write? Why do I get so dizzy all of a sudden? Why is my bladder so out of control? What’s that ringing in my ears all the time? Why do I feel like I’m vibrating? Why is my face tingling? … no single diagnosis could answer this. I was finally told that vitamin was being linked to “weird symptoms” like mine. And, although my levels weren’t that low, I began a regimen of vitamin D. Why not?

Everything changed for me one night. I had a job I loved. I was financially stable. I was working out regularly. I had just started my doctoral studies. I was active in my community. I had committed to enjoying life. And, after a brilliant performance at a local theater, I stood to give a standing ovation and I could not feel my right side. I rationalized that away for a couple of weeks but it began to spread while flaring up from time to time in the most distracting ways. I’d be leading a meeting and then, instantly, my right side would rage with pins and needles.

I broke down and went to the doctor again. We agreed I needed an MRI. We didn’t say what we thought it was. We both just said, we need to see if there is something impacting my nerves. We knew, after years of so many strange symptoms we had to take this step, but we didn’t talk much that first visit. When I received the results from the nurse “lesions” that a neurologist would need to find out more about, I knew. I had been researching. My doctor knew. We said, “we’ll see what the neurologist says,” but we knew.

I just didn’t think the universe would do this to me. My stepdad’s first wife died with complications related to MS. His children, whom I loved and cared for and considered siblings, had had to watch that. How could God force them to watch that with me? It didn’t just seem statistically improbable, it seemed cruel. I had some “why me?” moments for sure.

The worst was when the final unequivocal diagnosis came in, nine MRIs later, multiple exams, CT Scans, blood work…  every band of my spinal tap had been positive. I was told I could still do things like go to movies with my family and live a normal life. Well, I didn’t want a normal life. I wanted an extraordinary life. So I called my family and told them that I would do all I could to live with faith and to be a success story. And I have.IMG_2175

My greatest success though, has been in becoming an advocate.

  • I went too long without a diagnosis. That cannot be allowed to happen to others.
  • I sat scared and alone in infusion centers with all levels of health and wellness around me wondering, is that what I will be like in a few years?
  • I had to hear my doctor say “I really thought you’d be in a wheel chair by now.”
  • I found meds that don’t make my life worse and allow me to live well. Two pills a day, forever. Not a cure, just a 60% reduction in the likelihood of new lesions–if I’m lucky and don’t get the rare brain disease that is a possible and deadly side effect. We need more options for treatment and have to move toward a cure.
  • I take meds that literally have a 6000.00 a month copay. I thank the MS Society and research support for co-pay assistance.
  • I know what it’s like to live in fear of every new symptom, new question, but I no longer worry “what’s wrong with me?” Instead I am an MS Warrior.
  • MS is about me, MySoul. It is my weakness, but it has made me stronger. I will keep fighting.

 

Please support MS research at https://www.nationalmssociety.org/Donate

MS: My Strength

MS reminds me how strong I truly am. MS reminds me that life is good. MS reminds me that time is short.

I don’t know why my immune system attacked my nervous system and left me with multiple scleroses. I don’t know if everything really happens for a reason. I’ve learned that I don’t have to understand. What I have to do is live fully, faithfully, believing in joy and love and my body and mind’s own desire to heal.

By nature I am loving and peaceable, and also incredibly competitive with a tendency toward judgment–especially of myself. Last night, for example, as I did my workout. I went from celebrating my strength and honoring my body for continuing to progress to cursing my weak triceps. I completed multiple sets of 30 military push-ups, which could be considered an accomplishment for anyone—let alone a 40-something fighting MS. Then, as I wobbled during my tricep push-ups, I momentarily gave into frustration.

 

bgBidKvPS5WuVdKMdzYPUA
After 3 sets of 30 military push-ups I chastised myself for my lack of strength… really?!

“Why can’t I do these?”

“I’m so weak!”

“Why?!”

Really. This was my thought process at the end of a beautiful day that had included teaching yoga, working a productive work day supervising school administrators and supporting colleagues, connecting with friends, getting in a strength workout, spending time with my husband, and even just completing my gratitude journal for the day. How quickly and easily I went negative even after what, by all accounts, was a great day!

Nataly Kogan’s book Happier Now: How to Stop Chasing Perfection and Embrace Everyday Moments (Even the Difficult Ones) explains the neuroscience behind our continued obsession with finding fault, seeing the negative, and how that’s led many of us to strive destructively toward perfection. And I’m far from a perfectionist. But I understand that our minds are programmed to see problems. This is meant to help us avoid danger. We must avoid the danger of magnifying those problems, however, and, as HeatherAsh Amara coaches in The Warrior Goddess Training Guide, we can, instead, observe it, name it, and PUT A PERIOD ON IT. it is what it is. We must acknowledge it and then choose, free of judgment, how we will–or even if we will–respond.

So. I struggle to complete ten tricep push-ups in a set. I CAN DO TRICEP PUSH-UPS. I can move and keep strengthening my body. I have the luxury of time to dedicate to reading and learning, stretching and growing. I lived a great day and then had time to reflect and give thanks.

MS reminds me that some can’t move their bodies. Some don’t have time to rest. Some don’t have resources to heal.

My God, MS reminds me how much I truly have and truly am. I am blessed.

So today I give thanks for my strength. And I give thanks that MS reminds me that every movement of my body is a miracle not to be taken for granted.

I can’t wait to see how I get to celebrate and embrace my blessings today.

IMG_2044.JPG

Not One of the “Pretty Girls”

Ann is the cute one. Claire is the creative one. I am the smart one.

Ann is the funny one. Claire is the strong one. I am the responsible one.

Ann is the social one. Claire is the gifted one. I am the quiet one.

The quiet one? Ugh.

First of all, I am not quiet. I never have been. I have, however, felt silenced much of my life. Even though I’ve never been fully silent, I have felt the burden of the expectation. Worse, I always knew my sisters were just as smart if not smarter than I was. And I am responsible, yes, but what choice did I have? Who wants to be defined by a necessity? I want to be defined by my spirit, my mark on the world, my soul song.

For decades, though, I have felt defined not by my authentic self, but in comparison to others. In my social group, I heard echoes of my parents’ characterizations of me. Sarah was the smart one, the responsible one, the quiet one. Why couldn’t I be cute? Fashionable? Fabulous? And why do so few people realize how funny I am?

I’m a natural leader. I get things done. I’m successful. Why not be known for those things? And aren’t I talented, a gifted singer and strong athlete? I can hold my own in just about any circumstance, and people usually like me once the get to know me. How can I make people understand I’m so much more than the labels of my youth?

More importantly, how I can stop hearing those labels in my own internal dialog with myself?

 

“I’d like us to be more understanding with Paulina, more inclusive,” I coached. “I think it must be hard to be one of the beautiful people.”

“Oh, right!” my colleague burst out. “Let’s all feel sorry for the pretty girl. Sorry, I can’t do it.”

We both laughed. Neither of us had ever been known as “pretty girls.” We had both been raised by struggling families, developing more scrappiness than poise we felt. We talked about this often. We’d grown increasingly assertive in our years. We knew how to fight for what we wanted. And, right or wrong, we assumed Paulina had just always been given what she wanted. In fact, my concern for her feelings, and my belief we should be more understanding came from a very conscious belief that she did not know how to handle NOT getting what she wanted because she’d been so privileged in her life as a 5’11”, built like a ballerina, blonde, blue-eyed, upper-middle class, ice princess. And, my colleague was right, no one is or should feel sorry for that.

The real problem is that no one, not Paulina, not anyone, is defined by those first impressions. But we’re all judged by them. Whether fighting the label “smart one” or “pretty one” or any other social short hand derived avoid actually learning about and understanding others and, instead, classify them into manageable data points in our schema, we are all limited by the labels assigned to us.

In the best case scenario, we acknowledge that these classifications are short cuts we are all prone to take but also acknowledge that they are not pathways to understanding–and then allow people and our relationships to grow beyond those classifications. This needs to start with ourselves, though. Because, the worst case scenario is we that we limit ourselves to those classifications and allow ourselves to be constrained and defined by them. They then become more than labels but fully developed stories we tell ourselves. Like these:

 

I am smart. I should do better in math because I am smart. Smart people are quiet and read a lot and stay home on Friday nights and do well in school. Smart is not popular. Smart is not pretty. Smart is not athletic. Smart is not funny. And I can’t do anything that makes me look stupid or that I might not be good at. People might think I’m not smart. And smart and Sarah are synonymous.

I am responsible. I can’t go out and have fun or take a day off. I don’t dare use all my vacation days when I have so much responsibility at work. I need to put the needs of others first, always, and make sure everyone is taken care of before I take care of myself. That’s the responsible thing. Because some people aren’t responsible. I need to be responsible. For everyone. That’s how responsible people live and happiness only comes from knowing I am seen as responsible and everyone feels taken care of. That’s how I’ll fulfill my role.

 

Narratives like this pervade our minds. They’re not all bad. They’re not particularly inspiring either. And they deny so much of who I am and what I can contribute and the countless other gifts I’ve been given by the universe. Isn’t the truly responsible thing to do to maximize all of my god-given strengths and skills? Isn’t that just smart? Isn’t it also fun, creative, and adventurous? I am fun, creative, and adventurous!

So why to I have to remind myself this almost daily in order to honor my impulses and desires and objectives of joy in this life? And why is my dear sister with social anxiety still trying to live up to being the funny social one? And when will Claire and I realize our own beauty and cuteness? And how can Paulina break free of the narratives we have attached to her in all of her beauty?

I’m fortunate to have friends I can be and usually am my truest best self around who remind me, “you know you want to go on this adventure, Sarah!” or “you’re gorgeous!” or “your laugh makes you who you are!” We should all be so fortunate.

They hold me to being my best self and not subjugating myself to others, to my labels past or present, or to the narratives I told myself all those years in order to be who my labels told me I should be. I think, as women, we are particularly vulnerable to these types of narratives and, thankfully, particularly watchful of them in what my friends and I call, our soul sisters. In fact, it seems we are better at seeing the tell-tale signs in one another hiding our light and falling prey to the dark shadow of our old narratives than we at feeling the shadow we hide ourselves in.

I am learning to longer feel bad about about that, to longer judge myself for falling into old patterns that lead, per my narratives, to enabling others even martyring myself and holding back my humor and energy and adventure and silliness. I accept that I am simply in the process of rewiring my brain, carving new neural pathways in an effort to avoid those that have been so well worn. This is going to take time and it’s time beautifully spent asking myself daily how I honored my truest authentic best self and what I can learn from the day’s successes and struggles.

Living mindfully and giving myself permission to be myself and to be imperfect even at being myself–which used to seem like something I should just be naturally good at–is harder than following the old narratives. It just is. But it’s liberating too. And every day I feel more and more joy and more and more in love with the world. Who’d have thought a girl who used to cry herself to sleep riddled with anxiety as young as six could feel this way and have this much confidence? But I do because as hard as it is to be mindful, it was starting to hurt to be otherwise.

I even wonder how much of the stress I put on my heart, mind, body, and soul contributed not only to the anxieties I developed but to the lesions on my spine associated with the most pervasive narrative I fight–a woman living with MS. But just as I am learning to no longer define myself as just smart and responsible and quiet. So I definitely will not be defined by MS. I am so much more than this or any label and its associated narrative.

MS did make me face this struggle with my labels head on though. Overnight, following a terrifying and numbing flare up, I had to redefine who I was and what I said about myself as well as what others said about me. This was no longer a choice. My old narrative no longer were enough. Can you be the responsible one if you know someone might have to take care of you some day? Can the smart one also have cognitive fog? Oh, and I was so done being quiet. Who knew how much time I had to say what I wanted to say?

Challenge accepted. Project redefining Sarah, also known as acknowledging and becoming my true self, was set in irreversible motion.

I now hope to be defined by my authentic self, deep and complicated and full of life in a way that defies labels. I hope I can help all the “pretty girls” and the “smart girls” and “funny girls” learn that maybe they are all of these and none of these all at once. We are women who break through labels and refuse to accept the old narratives of those labels and, instead, create our own narratives of complicated, messy, beautiful lives. After all, why settle for a narrative, a work of fiction, when one can have a reality and make a real mark on this world?

The world deserves this contribution, not just another false narrative. So, are you ready to shed your labels with me Ann, Claire? Paulina? What about You?

 

 

My Soul Songs: Not Unlike a Rose 

MS is invisible even as it unfolds. 

Fighting MS is completely an inside job. You might never see what’s deep inside my soul as we laugh and go about our days like nothing’s wrong. 

And, like a rose, I will blossom. Like a rose with its thorns, I am beautiful and protected in my frailty. I might not have thorns but I sure do have plenty of fight. And I require plenty of care. 

Consider yourself warned. And appreciated. 

The Queen of Making Due

My brain has always always defaulted to the “glad game,” not just gratitude but looking for any little spark of good. This is a gift and a curse, as you can imagine. I am blessed to rarely feel defeated. I always find something to hold on to and some way to make the best of my situation. I am also cursed to find myself comfortable making due, making the most of a bad situation.

The faucet is broken? Well, don’t we have other faucets in our home? It’s fine. I don’t need to worry about that now. Besides we’re lucky to even have running water. A lot of people don’t.

My hamstring is torn? Well, I can still walk so it can’t be that bad. I’ll just keep going as best as I can… until I can’t. I mean, I’m so fortunate it’s just a tear; I don’t want to be a baby about it just sit around and get sad about it, for heaven’s sake.

My glasses are obviously the wrong prescription and are giving me a headache? Well, it’s better than not having glasses at all, and, maybe I’ll get used to them; after all, my left is isn’t even that bad. And if I sort of tip my head just right I think I can make it work. I’ll just be really careful driving for a while.

Oh? I have MS? Well, at least I have health insurance and can afford my medication. And it’s not like everyone doesn’t have their own problems. At least it’s me and not someone who could never be tough enough for this challenge!

And these are just some mild examples. I won’t get into all the truly horrible things I’ve put up with, allowed, accepted as just part of life. And I’m willing to bet I’m not the only one who does this sort of bright-side justification. I think a lot of women are prone to this, in fact. I just happen to have made it a way of life.

Most people would be surprised about this because I’m far from being weak or a doormat. I’m an advocate, an activist even. I don’t believe people should make due with bad circumstances. I think we all need to make the most of a situation and simultaneously work to improve the situation–unless it’s something in my personal life.

I’ve been telling myself since age nine that “I’m the queen of making due.” The simple little phrase came to me as I ran out of my house one crazy, angry morning eager to head to school and leave all the tension and pain behind.

“At least at school no one knows what my life is really like,” I thought. “So I’m going to be okay.” I set my jaw and grabbed my bag and threw open the door to seek asylum in the outside world. “I can make due as long as I have my friends. Ha! In fact,” I cheered myself, “I can be the queen of making due!”

My mom had always cautioned me against just looking for the silver lining. But I didn’t know how else to survive. I couldn’t control so much of my young life. But I could control if I let it upset me or not. So I became numb to it and became expert at finding any hint of any reason to make due. And I always found plenty.

The old adage, if you expect nothing you’ll never be disappointed, was my mantra. I knew I was tough and I didn’t need much. So I never asked for much. I wouldn’t say I’ve settled for my life. I have worked hard and found a way to access and receive so many blessings. But I have limited myself, my aspirations; and I’ve allowed myself to be unfulfilled–even to accept putting my passions and energies second to others and telling myself it’s good enough.

That’s what hurts. I chose to limit myself, my joy. Why would I do that? Why do I still find myself falling into that pattern? I know who I am. I know what makes me happy. I know my potential is unlimited. I don’t have to make due. Not anymore.

I’m no longer that scared little girl who lacks the ability to control her environment. I can still find reasons to be grateful that things aren’t worse. But I don’t have to stop there. I can also be grateful that I have the power, at this point in my life, to make things better. It doesn’t have to be one or the other.

Can I end these false choices? Can I turn off my default switch and push beyond making due? Can I become, instead, the queen of making my world a better place?

I believe I can. I don’t have to settle for “not bad” or even “good enough.” Goodbye Queen of Making Due. Thank you for the solace you provided me all those years, but I’m ready for a new title. It won’t earn a new title overnight though. So, until then, I can make due with doing my best to become something greater. After all, each new breath is a chance to be reborn.

Here’s to new life.

 

IMG_3695

My Soul Songs #21

Truly Impressive

 

I’ve always been impressed with my ability to overcome.

I’ve just rarely loved myself for all I am.

“Not bad for someone who…”

Insert the randomly selected self-limiting descriptor.

 

Enter MS.

 

Now an MS fighter the phrase has been consistent.

“Not bad for someone dealing with MS, huh?”

I thought I sounded confident and self-impressed.

But I was limiting myself.

 

No more.

Not bad. Period.

In fact, I’m so much better than simply “not bad.”

strength-training-kettleball-weights-muscles-Tatomm-iStock_000063354919_Medium
MS: My Strength

“Impressive, huh?”

 

 

 

Parables of Love, Part 1

Part 1: The Guru We are here to heal, to be made whole. That is the only goal, and the lesson is found in the journey. The teacher is life itself. But The Guru, Our Master,  is eternal and takes many forms. Only when you open yourself to The Guru can you truly be healed.

“This is your time; invite yourself to just be,” she started.

The soft sound of healing breaths, in and out, began to hum as we drifted into our own inner spaces. Grounding ourselves in our breath, reminded of our humanity, and reaching with our hearts, reminded of our spirits, we commenced our yoga practice. It’s a practice designed for discovery. We struggle with poses we’re not yet strong enough to hold. We flow through stretches that push our limits. We falter, even fall, as we learn to balance. The discovery will be of our true selves, the core of our beings at the energy source that sparks our human existence. This practice is part of all we do.

The chimes bring us back as our guru intones reminders to listen to our bodies and go at our own pace.

“Thank you for sharing your practice with me today. Thank yourself for making the effort to be present. Notice if you were able to put on those yoga blinders and care only for your practice rather than comparing yourself and your practice to others. Ask your soul if you loved yourself in your practice today. That’s why we practice.”

We thought about her words. We closed our eyes and searched our souls. Then we all bowed and offered “namaste” at the conclusion of the hour. Emma sat frozen with a smile, beaming as if illuminated by the time we’d just shared as a group.

Her petite frame was shrouded in atypical exercise attire. But then Emma was no typical yoga instructor. Mousy brown hair went all directions, appearing to spring from her delicate pink face; it was pulled up as usual, in a style none could, nor would likely attempt, to replicate. Her baggy clothes looked as though they could slip off her narrow shoulders and hips without warning. Yet she held her balances with unwavering strength. She moved with beauty and grace none would expect from such a disheveled waif. She looked like a wood sprite or faerie playing at being human and unsure how to fit in. But when she spoke she lit up the room. She was truly beautiful.

“So, how was that on your your neck, Sarah?” She asked as I gathered my things after class. “Was that buggy? Because we don’t want it buggy. Remember, if you’re over it, you’re over it–just like anything in life. Yoga teaches us that, right?”

I snickered a bit. I couldn’t help it. Her phrasing always made me smile. “Who talks like that?” I thought.

“It was great, Emma. Really. I’ve been trying to listen to my body and honor my limits, …” I demonstrated what I’d been practicing, propping my head against my forearms on the mat. “It actually feels better this way and, look.” I pushed out the last word with a bit more force as I kicked my legs to the ceiling and entered my headstand.

“So that’s two goals met: crow pose and a yoga headstand,” I beamed upside down still.

“That’s so awesome! You amaze me.” She waited until I righted myself and returned to sit, crosslegged on my mat in front of her. “Sarah, can you believe that you’re stronger now, so many years after your diagnosis, than ever before? … I mean, that’s really powerful. You should be ecstatic” She searched my eyes, tearing up as they often did when the subject of my health and happiness came up.

“I am proud of myself,” I replied. “I know I can do whatever I set my mind to.”

“But you’re not happy. I can tell.” A tear escaped against my will as she leaned in and seemed to see into my soul.

“I can’t explain it. It’s like I’ve just discovered who I really am and it makes me sad that I haven’t honored my identity but, more, like I don’t know how to.” I admitted, wondering why and how she brought this honesty out in me–and why I kept coming back to share more.

“Sarah, sweetie, you do know. It’s why you keep coming.” We embraced at that and I let the tears flow.

It’s true that I’m a cryer, although most would never guess that. I would rather suffer great pain than cry in public. Tough. Strong. Hilarious. … those are the descriptors I make sure I demonstrate in my day-to-day activities. They’re also what I tell people I am. Emma says crying is a sign of strength, and I almost believe her. But I still think being able to hold my tears until I’m alone is a sign of even greater strength. Every time I say that she speaks of the need for vulnerability, but I’m not there yet.

But today I cried, sobs and sighs, and gasps for air included. It was no dainty or sweet cry. It was the heavy healing kind of cry.

“Well it’s about time, cutie,” she whispered. “I knew you had that in you. And now you’re ready.” Her smile soothed me as she spoke.

“Sarah, you’re about to begin a journey.” A mysterious shift in the room’s light, as if the sun had broken free of dozens of clouds, seemed to welcome me to another dimension as she spoke. The only way to explain it is to say it felt like church, that light and airy and thankful feeling of peace when church is the way it’s supposed to be and love is the lesson.

“What are you talking about?” I asked.

“Today’s lesson will begin to explain it, so just go with it.”

“Okay, Emma. I’m all in. ”

“Cool,” she said informally. “Let’s do this!” She smiled, beamed really, as she began. “Today’s lesson is the parable of the guiding light.”

And, with that, I was transported to a morning more than two decades ago. namaste-yall

My Soul Songs #15

I’m going to make mistakes sometimes.

I might even lose my way.

But I keep going.
I’m going to fail sometimes.

I might even cry.

But I keep trying.
I’m going to  fall sometimes.

I might even hurt.

But I keep rising.
I’m going to be scared sometimes.

I might even falter.

But I keep singing.
This is my soul song, and mine alone. And it must be sung.

My Soul Songs #12

A Woman on the Move

Motion, movement, momentum, muscle memory… I am a woman on the move. I’ve always been active and more than a bit competitive. I’m driven. But I’m fearful too.

The first time I lost my momentum, I was twelve. I was in sixth grade and I dropped to floor one night in December with intense vertigo. I spent the next several months on my back, getting scans, visiting doctors and psychologists about the dizzying numbness and intense fatigue that had hit and seemed wouldn’t leave. Everything was inconclusive.

The words Multiple Sclerosis now explain that strange period and the others that followed, giving a name to the fear of lost motion, a break in my stride. A woman known for her purposeful walk, her powerful swift pace, her high energy– who would I be if those were no longer mine?

I would still be funny and kind. I would still be loving and loved. I would still be Sarah Josephine. I know that. But Sarah Josephine would change just enough to make me uncomfortable. I want to keep moving.

So I do. I cannot control the future but I can choose my path. I can influence my surroundings. I can accept and embrace the journey and all its obstacles and opportunities.

I am a woman on the move. And I keep on moving because I can, with faith in every footstep and gratitude in every breath.

img_1556