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.

 

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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.

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My Soul Songs: Optimism

There doesn’t have to be a silver lining in all things. But the blessing is that there’s one anyway–if you look for it. That doesn’t mean we have to be thankful for all challenges and tragedies. But we can be thankful for the learning, for the response, for the deep breath when we realize we are still here and we can move forward positively or negatively. It’s our choice. I choose to be optimistic. I choose to make something good out of every experience I can.

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My Soul Songs: All I Was and All I Am

All I Was and All I Am

I thought all I was, all I had going for me, was being smart. At school, I had an identity and an escape. No one knew anything else of me or my life.

Then I learned that I was strong. I overcame illness and wowed everyone with my gymnastics and my spirit.

And when I prayed I knew I was happy. I knew I wasn’t like so many I saw around me. My energy was different. Silver linings filled my view and hope filled my heart.

My tear-stained pillow would be replaced with a bed of my own making. I ventured out to find my place in this world and I found myself.

I wasn’t “the pretty one.” I wasn’t “the creative one.” I wasn’t “the funny one.” I certainly wasn’t “the popular one.”

That’s okay.

I was so much more.

If I was to be just “one” I wanted to be “the joyful one.” But I realized none of us is one-dimensional.

I had to be shown my own reflection in the hearts and healers who came into my life over the years.

I had to help others find out who they were and what made them special before I truly knew how special I was.

Through prayer I learned I am loved and loving.

Through friendship I learned that I am a listener and I am heard.

Through work I leaned that I have both heart and mind to contribute equally.

Through illness I learned that I am beautiful and brave and won’t be beaten.

Through loss I learned that I am free to live this one life with all I have, to hold nothing back.

Through it all I learned to be true to all I am. I am so much more than smart. I am not just strong. I am blessed.

I head into 2018 knowing with all my heart that I am beautiful and brave and strong and true and free. I choose to live as I am for all of my days. I have so much to give and to receive. Blessed be. IMG_0187

My Soul Songs: Not Another Success Story

Mine is not another one of those stories of our struggles making us stronger.

I’m not saying struggles can’t make us stronger. But what about when they don’t? We’re somehow made to feel like failures if we can’t appreciate our trials, our sicknesses, our loss. Seriously? Sorrow shaming! Why do we do that?

… So this isn’t a story of gratitude although I’m grateful for every new day. This isn’t a success story although I’ve achieved more than I ever thought possible.

This is just my story. I’m not healed. I’m also not broken. I’m just doing my best to love and be  true to myself, scars and all. My struggles have simply revealed the strength I had within me all along and reminded me that time is too short to be anything but my best. IMG_5053

I Pray*

This is for all the little girls who learned silence and co-dependence. I pray you let yourselves heal. It will take years. And it will hurt. But it’s worth it when you realize how strong you really are. You’re amazing.

I don’t understand. He told me not to call again. But I thought he was my dad.

He’d raised me for nine years. He’d carried me out of movie theaters when my tears wouldn’t cease. He’d carried me to clinics and ER’s. He’d carried me through my advanced math classes.

He’d told me the whole room lit up when I smiled.

He’d also hurt me. He’d shown a temper like none I’ve ever seen. He’d crossed boundaries I couldn’t explain to most people. He’d taught this vivacious little girl to be silent. He’d shown me everything I wasn’t good at.

He’d said I was his little girl.
There’s a sad sort of beauty in the fact that I was always such a daddy’s girl. Every art project was a sort of homage to one of my father figures. These were usually of him, not my birth father or any other male role model in my life. They were of him. They were for him.  I wanted him proud of me. I wanted him to know how much I loved and needed him.

But he told me not to call. He wouldn’t be my dad anymore. So I cried, just once. Then I made a plan to move on. And it worked. I stopped being silent.

But I still remember. And, in the past few years, I’ve let myself cry some more. I was always a daddy’s girl. I loved him. I still love him, that part of him that carried me. But now I know I never needed him. I pray he understands.

*Praying by Kesha inspired this piece, and so many memories.

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: Look Up

You seek answers.

You seek healing.

You pray for hope, for signs to follow.
Stop crying for your angels.

Stop begging for mercy.

Stop looking where you’ve already been.
Just look up.

There it is.

The light of God is already there.
Receive the warmth.

Receive the glory.

Receive this new day as a gift for the taking.
Be assured.

Be thankful.

Be one who stays in the light.
Just look up.

There it is.

The light of God is already there.

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.