“And at some point you realize that there are more flavors of pain than coffee.
There’s the little empty pain of leaving something behind ‒ graduating, taking the next step forward, walking out of something familiar and safe into the unknown.
There’s the big, whirling pain of life upending all of your plans and expectations.
There’s the sharp little pains of failure, and the more obscure aches of successes that didn’t give you what you thought they would.
There are the vicious, stabbing pains of hopes being torn up.
The sweet little pains of finding others, giving them your love, and taking joy in their life as they grow and learn.
There’s the steady pain of empathy that you shrug off so you can stand beside a wounded friend and help them bear their burdens.
And if you are very, very lucky, there are a few blazing hot little pains you feel when you realize that you are standing in a moment of utter perfection, an instant of triumph, or happiness, or mirth which at the same time cannot possibly last ‒ and yet will remain with you for life.
Everyone is down on pain, because they forget something important about it:
Pain is for the living. Only the dead don’t feel it.”
When all you got to keep is strong
Move along, move along like I know you do
And even when your hope is gone
Move along, move along just to make it through…
First full week of Rebif injections over and done. It’s been a smoother ride than when I was on for Copaxone for a few months back in 2010. My worst injection came Tuesday night when I used the auto-injector, instead of doing a manual shot; that injection site was bloody and bruised immediately. No more auto-injector.
The past seven days have been pretty grueling. Sunday was the bottom and I climbed up from there. There are so many things going on in my family, I can’t help but just shake my head and wonder if this is all really happening. I’ve adapted myself over the past couple of years to truly “live in the moment,” so I usually do a decent job coping with varied crises. One moment at a time; one crossroad at a time, one day at a time. I’ve also done a pretty good job at staying out of the darker corners of my mind, and of the Universe. I’ve written about this before: there is so much to learn in the dark – clarification can be found there, as well a deeper appreciation for the light. I find it a worthwhile place to travel to – but a mighty dangerous place to stay. I am really proud of the way I’ve handled the darkness lately.
I had a truly remarkable experience on Wednesday… a real awakening. Perhaps more of a REawakening – a remembrance of things I once knew. This experience is for a different post on another day, but it really helped ground me into this life I’m living now, and it brought about an opportunity to think about this:
What are we getting up every day for? What are we moving towards? Emotionally and physically… where are we striving to go? As anyone who has dealt with a major illness (or a temporary disability) can tell you, sometimes we spend all our energy getting back to a place of basic freedom, movement and ability. I recently found a way to simply remember a time when I could not walk by my own power, without reclaiming it, or fearing the possibility of a return to that time. That’s important. We should all yearn to remember without reclaiming. That was then; this is now. What did you learn; what can you do today to respect that part of you that wants to just – get – moving. Physically, emotionally, spiritually … let’s keep moving along, with respect for the past and enthusiasm for the future… and let’s always pray for the energy to appreciate the time we are given for today.
In that spirit, I want to offer my thanks to the Universe for allowing me to spend two hours of my day today hiking Buttermilk Falls – down steep steps and up a grueling trail. It was a stunning view … I was grateful for the ability to see it. My legs are bruised and marred from injections, they are not as tone as I want them to be and my cardiovascular fitness leaves so much to be desired; nonetheless, I am using this body to carry me forward, and I am using this spirit to move along – and THAT is divine.
I hope you find the strength to move along, too –
In my blogging absence, so many changes have taken place. Thommy went back to work for Old Navy as the store manager in Ithaca, which means we have also moved again – to.. yes… Ithaca! HERE WE ARE.
I’ve had a spinal MRI, gone kayaking, said goodbye to Malone, said hello to a few new faces, discovered that eating a burger from 5 Guys does not mean the world is coming to an end, spent some time in the vet hospital with Riley and immediately followed that up with a trip to the emergency room with my husband. (They put us in the same room and patched us back up together again.) I’ve learned the difference between friends who are always around, and friends who are always there. I’ve felt helpless as I sat with a friend who is raging against life itself. I have desperately wanted to make it better; for her, and for me, and for my Mom, as she battles monsters that she alone must fight.
I’ve gone through one of the most difficult experiences in my 29 years. It involves my father, and I am not quite ready to talk about it.
I’ve done a hell of a lot of crying. More crying than I thought was possible. All types of crying: the full body sobbing that rocks your insides; the cracked, strained crying of a voice trying to rise above the tears; the quiet, gentle weeping that only you can hear. I have, in the past couple of months, been stunned by life. I have felt alone and desperate. Really. Desperate.
I’ve also done a lot of reading, and followed a few new blogs. I became addicted to – and healed by – an advice column called Dear, Sugar. You must read it. (Bring tissues.) Way back in February, I discovered 3x3x365, a truly beautiful collection of words & pictures. At that time, I was right in the middle of a relapse and confined to bed for a few days straight. I spent an entire day reading every back entry and found myself WAILING – – in self-pity, and in hope, and in awe of these friends and their views (and viewpoints). They took me away, and above, and we soared together for hours. One of the bloggers, Patti Digh, has been an inspiration to me since I discovered her book, Life is a Verb, back in 2009. I wrote to her about the idea I had for my own book, and she wrote back (!!!):
“I love the idea of Recepta. And I would offer this thought … change “It is the type of book I would have hoped to…” to “It is the type of book I will…” –
I have kept that email message in my Inbox since August 4th, 2009. Four months after she wrote that, I would be diagnosed with Multiple Sclerosis. I haven’t updated her, but I am following her right along… constantly soothed by her words, ideas, photos, messages and her big, bright, beautiful light. I even signed up for her book club this year, but was too sick the first three months to even get on the call, and haven’t had access to the books, or the Internet, for the last couple of months on meeting day. I am hoping to finally “show up” very soon.
Which brings me to the point of this post. Amy McCracken is a magnificent writer/human being/lover of animals/all around amazing woman, who also posts on the 3x3x365 blog. Instead of summarizing, I want to just re-post her beautiful entry. It could not have been said any better:
Asheville told me this week that Tess was going in
for a long day of testing to get a better understanding
of her “thunderstorms.”
And that Tess decided she should probably wear a dress.
She and her dad went and picked one out.
I LOVED the picture of Tess in her dress.
And the sweet reasoning behind it.
And her courage.
And someone else’s comment that they too
would be wearing a dress for Tess today.
Forget about all the struggling we do while we are trying our best to
eat our damn vegetables
make hard changes
face difficult truths
get a colonoscopy
or a mammogram
diet. yes. diet.
What if we could all choose a dress
for such occasions.
Like Tess did.
What if we encouraged people to put on a dress
and do something that they have long needed to do.
It could be either
call your dad
apply for a dream job
visit the cemetery
go get your scan results
get your effing oil changed for godsake
write a story
say you’re sorry
say you forgive
have that mole checked out
We could call the project A Dress For Tess.
People could post photos of themselves
wearing a dress and doing something brave–
on whatever level they choose.
Showing themselves, and Tess, that we really can
do that which we fear we cannot.
And be as comfortable as possible in the process.
SOMETIMES IT IS BRAVE JUST TO WAKE UP.
Men are not excluded.
In fact, they are encouraged to participate.
Because, man, that would be really brave and awesome.
And any project that includes men in dresses
is bound to be totally rad and inspiring.
This project is inspired by Tess and the courage
it takes to achieve greater understanding–
about ourselves and others–
and to decide to be as comfortable as possible in the process.
Would you participate?
Because I would love to see you in a dress.
And hear your brave stories.
Let me know here or at firstname.lastname@example.org
and I will keep you in the loop as we gather
pictures of courage in a dress.
WOW. OK, JUST … WOW. Does it get any more powerful? Just when I didn’t think I was going to be able to carry my own weight, stand in my own light and carry my own heavy burden… here came an opportunity to stand tall for a brave, beautiful, courageous girl. To show her that we are all way tougher than we sometimes think. And usually, when we are faced with heavy opposition, difficult choices and the recognition that we are somehow “different”, that only means that we are actually superheros. We are fierce, we are strong, we are the bravest of the brave. And we can always choose to remind someone else of that, if we ever really need to also remind ourselves.
So, my beautiful Tess, you are SO brave. You are a stunning example of determination in your dress. You are strong all by yourself, and you are made stronger by ALL the people thinking, praying, loving and believing in you. Whether you see us, or not, we are always here. You inspired me to put on a dress I have loved forever, but never actually worn. You inspired me to laugh and smile and show the world what I will be facing today: the prospect of painful injections necessary now to slow the progression of lesions on my brain. Not necessarily a fun day – but oh, what a miracle to have a choice, to smile instead of cry, to face what must be done … IN A DRESS, no less.
We can do it, my dear little friend. We all surely can.