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.

 

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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.”

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MS: My Strength

“Impressive, huh?”

 

 

 

Soul Songs #16

Learning to Love Myself

I have always known that I’m quite amazing. Does that sound egocentric? Just kidding. I know it does.

I’ve always been confident. I’ve always known my strengths. And I’ve been criticized for being too self-impressed.

But I am impressed with myself. I’ve overcome a lot. I’ve achieved a lot. I know my work makes a difference.

I also know that I love people. I genuinely love and care about others. The funny thing is that for the longest time I didn’t realize that I didn’t really love myself.

I didn’t love myself as much as I loved others anyway. I always put myself last. I always said “I can help” or “I could be good for that person.”

I actually thought that made me even more impressive. I managed to walk around a contradiction between “I’m amazing” and “other people matter more than I do.”

I have fancy language for all of this now. But I won’t go into it. All that matters is that I learn to love myself. IMG_1628

It’s not enough to be impressed by myself. I must love myself and care for myself. I might even put myself first sometimes–because sometimes you just have to.

Love matters. And I’m going to love myself more than anyone else. Because I am always with me; and that relationship matters too.

Maybe I can help myself. Maybe I could be good for me. And I can still be pretty damn impressive.

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.

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