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What’s In Your ToolKit?

Sometimes this diagnosis just brings me to my knees. The why, the wondering, the not-wanting this, the unknown, the fear…god, the fear. It rages and screams and whispers and doesn’t stop. And so I have to. I have to stop. I rest. I dig through the mud until I finally find that rock. That tiny thing that I recognize, that I know will help me find my way. Sometimes it’s a connection to my mind; a thought, an expression, a quote. Sometimes it’s a connection to the physical; a hike, a bike ride, a lift at the gym. Sometimes it’s a connection to my heart; the sun, the wind, the woods. Sometimes it’s a person who simply gave me the space to feel. Whatever it ends up being, I grab a hold and start pulling my way back up, because I will be damned if this diagnosis will ever take me down.

My beautiful sister, Brigette, sent me a link to Maria Shriver’s interview with Dr. Dean Ornish, author of the recent book, UnDo It!. It resonated deeply (and I’ll be picking up the book shortly!) when he spoke of lessening the load to get back to our true selves. He spoke of the fact that we can expect that our life will be filled with ups and downs. The ups will be amazing and we can await them with wondrous anticipation. The downs, they will happen, too. It is inevitable. We never know how hard, gruesome, terrifying, fearsome or loathsome they may be. But what we do know, or what we can learn, is that these downs do not have to be something we await in fear. These down moments are, most often, our greatest opportunities. If these moments are happening, they most often are an eye-opener to us. What am I not paying attention to? Why am I holding onto this way of life? What am I doing and how can I change it? Even though the circumstance might seem it’s worst, it is important to ask ourselves these questions, “Not as a way of blaming yourself,” Dr. Ornish stresses, “…but as a way of upliftingyourself.”

I agree that this has some major truth to it. But you also must give yourself some grace with it. You might not be ready to dig deep, to grow, to wonder because right now you might just feel mad or angry or upset. So let yourself feel what you feel, but don’t let yourself stay down too long. Start to question, and then stop when it’s too much. Then wonder a little more, and lay it down if it’s too heavy. But piece by piece you must begin.

We search for everything we believe we do not have, not knowing that everything we are looking for is already inside us. We are born with it.  ~Don Miguel Ruiz

So because these down things are going to happen, we have to think about ourselves and the compassion that we have for ourselves. So I ask you, what’s in your ‘Get Back Up Tool Kit’? No matter what difficulty you are facing, but especially with chronic disease, having the knowledge of places, things, people, and circumstances that will help bring you back is the key to coming back stronger every time. Where do you feel at peace? What makes your heart skip a beat? Which people are inspirational? Which people really listen and want to be involved? You have to know yourself. You must love yourself. You have to know your supports and understand your why. Because the hills are huge and the valleys get low, but your knowledge of how to love yourself will always help you take one more step.

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There’s so much that pressures us to have it “all” – big houses, more money, top of the line clothing, having our homes look like they are straight out of magazines. It’s all there, all around us. Advertising sprinkled in our relaxing tv time, out our windows as we drive to soccer practice and work, in between our finger scrolls and magazine flips at our doctor appointments. And for awhile, it is so ingrained that we don’t even realize that it’s happening. And, most importantly, that it’s all fake. Created to make us consumers. To make us spend more money, make more money, spend more money and so on.

It seems sort of ok, and sometimes harmless to acquire stuff and to enjoy creating an image for ourselves, but what’s the actual damage being done?

I hate to say it, but my opinion is that the damage is deep. We have created a culture that values nothing. Not even each other. We actually have allowed ourselves to value the junk to the point of tearing each other apart – constantly judging and commenting and comparing. We are valuing things we were told would fill us and the reality is that they don’t.

Take it from me. During diagnosis I was confronted with a variety of things that this MS could have been – tumors, other diseases, and some with not good prognosis. I spent a week waiting for results of a test for something that had a strong likelihood of leaving me blind and paralyzed (if not dead) within 5 years. This changed me. As I sat on the floor with my two babies toddling around beside me, I remember taking in every breath as if it were my last and questioning what was left for me here. And I will tell you this, none of it included house décor, new clothes, or really the best of anything.

What I actually found in the aftermath of this waiting period (which I would claim left me in some kind of PTSD state for quite some time), was that I wanted everything in my home to be as simple as possible. Décor that only reminded me of a wonderful memory or love and health. Clothes that simply comforted me and made me feel unique. I wanted all of the stuff, all of the bull#$!& out of my life because all I wanted was the space to hold the people I loved and the immense laughter and fun that we share, and the room to go out into the world and enjoy new experiences. That’s it. My people and the world.

So when I read Johann Hari’s book Lost Connections recently, I was confirmed in my beliefs that we are caring for things that don’t matter, and becoming isolated in the mean time. We are losing connections left and right and our society/advertising is not providing the examples to help us get back to ourselves and each other. Hari states, “You need your pain. It is a message, and we must listen to the message. All these depressed and anxious people, all over the world- they are giving us a message. They are telling us something has gone wrong with the way we live. We need to stop trying to muffle or silence or pathologize that pain. Instead, we need to listen to it, and honor it.”

Our bodies are amazing. They are meant to hold us and nourish us. They want to be healthy. It is not possible, in my mind, that so many of us seem to be suffering (physically or emotionally) because our bodies are physically simply failing us. All of us? Really?

Hari’s book goes on to discuss 9 ways (and he claims there’s probably more) that we have or can lose connection in our lives. It’s an incredible book to help you look at the power you have over how you feel, and the life you are living.

One of the most eye-opening connections for me was our loss of connection to each other. I mean, I think we all realize that it’s happening with technology, but I kind of forgot about the way humans have evolved. “Now imagine if-“ Hari states, “on those savannas – you became separated from the group and were alone for a protracted period of time. It meant you were in terrible danger. You were vulnerable to predators, if you got sick nobody would be there to nurse you, and the rest of the tribe was more vulnerable without you too. You would be right to feel terrible. It was an urgent signal from your body and brain to get back to the group, any damn way you could. So every human instinct is honed not for life on your own, but for life like this, in a tribe.”

So these individual lives we’ve created – new moms/dads taking on everything because they need to meet that standard of doing it all, people working 40+ hour weeks with no time for family or love, kids racing from activity to activity with no downtime for the joys created in boredom or socializing in the neighborhood – we are alone more than ever and it is damaging our health. We need each other. We need someone to bring meals after a new arrival, and give advice on how they cared for their crying babies. And we need to know it is ok to accept other people’s offerings, it doesn’t mean we are less. We need to scale back on our material possessions so the need for money, and overly full work weeks, can go away. We need to make sure our children freely play in the dirt. No guidance, no micro-managing just open, dirty exploration. These connections help us to be our best selves and feel fulfilled. We are all supposed to be doing this together. Helping one another, laughing at mistakes and jokes, crying during sad and frustrating times and just boosting each other along during this crazy ride of life.

It’s not easy. I still continue to strive for this simpler way of living every day. But the best part is that it doesn’t have to happen all at once. So just take a look around. Take a look at connections- to the earth, to others, to service, to love. Start filling in the gaps, piece by piece, step by step, and create that meaningful life you were meant to live.