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…
Move along
~All-American Rejects
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 -
Rhéa
Right & Left Leg Bruises (the left was from 4 nights ago; the right was 6 nights ago)
Blessed for the opportunity to hike up and down the falls; determination, stubbornness, and the SUPERHERO TANK – all contributed to this powerful venture. (Click on the photo for the first mention of this fabulous tank top)
I brought Memere to Plattsburgh for her cardiologist appointment today. It was her first time traveling that far since she was discharged from Hospice in January. Her doctor was so happy to see her and was amazed by the story of what she’s gone through since her last appointment six months ago. At one point, he noticed that her birthday had come and gone in that time frame and so he asked, “how old are you now?” She thought for a second, clasped her hands together, smiled and said “68!”
She meant 86. She inverts numbers like I do so often – like most of us do from time to time. But it was beautiful to see her so confidently declare her age, rightful or not. I corrected her in a roundabout way, so as to make it amusing, and I let the doctor know that I too had a birthday recently and was now 25. Being the awful liar that I am, that declaration hung out there for about 4 seconds before I corrected myself.
“I would have seriously thought you were 19 or 20,” he said. Bless his cardiologist heart.
I am not 19, or 20, or 25 (though I will probably continue to say that until someone calls me out on it).
I am 29. I am running out of room in the 20′s and standing on the precipice of 30, and I am not comfortable here on the edge. My better sense tells me to focus on the amazing experiences waiting to unfold in my 30′s. I’ve heard that the 30′s are a great time for “coming into your own” and expanding on what you’ve created for yourself in your 20′s. I feel like the only thing I figured out in my 20′s was that I really wanted someone to look back on this life with, and that creating a space for friendship and love was integral to my happiness. I wanted to fight for a partner, for a love that would withstand the sudden troubles, inevitable heartbreaks and the ticking of the clock. For a long, long time I felt that life was going to be unsettled and complicated, and if it’s like that (and it IS like that, in both beautiful and painful ways), then I wanted to be certain about the person I was going to weather the uncertainties with: and I found him.
And I’ve found that uncertainty around every corner. Maybe I was looking too hard for it, or maybe it “just is” – but what I guess I want most for my 30′s is a little bit more security: in all aspects. I know I need to look within to find that; I need to feel safe just living in my own body, inhabiting my own space, using my own words, inheriting my birthright to live joyously while on this Earth, and just being satisfied with who I am. No sweat, right?
It’s been hard to do that over the last ten years. There’s been one seeming betrayal by my body every couple years or so. I’ll never forget sitting in Olive Garden, the first day of my first MS relapse and saying to Thommy, “something is wrong with me, on a cellular level.” It was such a strange thing to say… so overly dramatic, I felt silly even saying it. But that statement came from deep inside, like I had been waiting for years to say that out loud, and this first glimpse of MS gave that feeling a voice. “Something is wrong with me” seems to be a recurring theme in my mind.
I look to this year to be a platform for the 30′s. I anticipate this year to be the year I flip the switch in my mind, my body and my soul; this is the year I believe that everything is right with me, on every level.
“It is lovely, when I forget all birthdays, including my own, to find that somebody remembers me.” ~Ellen Glasgow
This birthday came in the midst of an MS relapse, exactly four days after my last dose of steroids. I was puffy, uncomfortable, and bummed. Thommy (that partner I fought for, to help me answer life’s questions) had the foresight to send our new address out to mutual friends, since we hadn’t updated anyone on our last two moves. It was such an amazing thing to watch these birthday cards start trickling in, as I realized that Thommy had called out to friends to help celebrate, and that those friends responded with such fierce love.
Birthday cards, flowers from Mandy and Fred & Christy, SUNY Cortland Alumni goodies from Nick, friendship/recovery bracelets from Danielle, a very special PSU newspaper from Ginny - and lots of love xo
My friend Meg sent me two beautiful cards and some yummy smelling lotions; Mamma Meryl sent a singing card & a “Strength” bracelet; the Emmys Organics lovelies sent fudge!!; my Uncle Maurice made a special birthday dinner before we left; lots of family chipped in to ease the financial burden of our little birthday getaway (especially my Mom, who is the most generous and selfless person I’ve ever known); my good friends Fred & Christy met us for a special lunch with very little notice, and they even showed up with flowers, balloons and a “Courage” figurine that now watches as I type this; tons of friends sent emails, texts and Facebook messages to send their love & prayers electronically; and my Yankee Candle girls contributed to this beautiful ensemble:
Midnight Oasis = Love
Thommy catered to my every need and chauffeured me to Syracuse, Rochester and back home again. (A day later than expected since in typical Rhea fashion I decided to further shatter an already broken tooth while eating a carrot and needed to be seen by my dentist in Syracuse – whose patience may be wearing thin.)
I will spare you all the minute details of my most amazing birthday weekend, but I need you to know it was, indeed, AMAZING. I had wished for a symptom-free birthday, and while I didn’t get it, the sight I saw through spinning eyes made my heart melt. It was full of patience, love, laughs and even a little retail therapy (on a much smaller scale than say a “spree” but it was fun nonetheless).
I need to express my utmost gratitude to all of the above people, and most certainly to Justin – or, “my Justennnnn” as I prefer to refer to him. In the midst of a busy weekend for himself, he carved out a lot of special time for me, and created a comfortable, healing, therapeutic and joyous space for us. He was present for two birthday dinners, treated me to birthday ice cream at Cold Stone (only my second visit, ever), and was witness to a special dining experience that will get it’s own post later on. All of these things were wonderful and appreciated, but Justin just giving me Justin was the best birthday present he could give. There are a few special people we have in our lives that just enhance everything – pictures are clearer, colors are brighter, and laughter is louder… and Justin is one of those people to me. I began to love him through Thommy, and how much his friendship had always meant to him – but I grew to love Justin for what his affection and regard meant to me. Thank you for letting me forget what’s wrong, Justin, and for bringing me to all that is right.
Thank You, my Justennn
I do. Love you all.
Friends, thank you for making this birthday an oasis of certainty and light in the middle of the confusion and murkiness. Thommy, thank you for holding my hand every step of the way.
Grateful for a 29th chance to do it better,
Rhea
xo
Not only will there be no giving up, there will be no giving in.
The best part of a nightmare is the awakening moment that follows. Instant light on darkness. Instant clarity over confusion.
The best part about saying “no” to so many of my dreams over the last few years, is the expectation of a miracle dream I will eventually get to say “yes” to.
And the best part of the pain, illness and sadness are the bright, flickering moments of relief when I can breathe a little deeper and say, “YES… this is who I really am.”
And those are the only parts I can choose to concentrate on right now. The right side of up. The space where it’s easier to breathe.
Because there are other things I sometimes want to focus on, dwell upon, feel bad about:
… leaving behind massage school and the dream of opening up a holistic wellness center with my husband
… moving in with my parents after having had my own space for the past seven years
… struggling to help my husband find work in an economy so broken
… finding myself up against Multiple Sclerosis for the first time since the original diagnosis in 2009, and recounting where I went wrong in my self-treatment
… wondering how I will pay for any further treatment (or anything for that matter), now that I once again have no medical insurance, am unable to work, and see no opportunity for assistance on the horizon.
And I can’t help but wonder:
… how long is this relapse going to last and when will I again wake up free from vertigo, pain, numbness, nausea and weakness?
… will I ever cease to be a massive financial, emotional and spiritual burden on those who love, and somehow continue to support me?
… how long before I can rightfully hold a pen in my hand and let free all the words living inside?
"Language is another spectacular marvel. Millions of souls have cooperated for untold centuries to cultivate a system of communication that you understand very well. Your ability to speak and read and write makes you feel strong and dynamic. It intricately connects you to the world, and allows you to engage in one of your greatest pleasures: hearing and telling stories." ~Rob Brezsny
There are more troubles – even more private than all of these things – that really try to take a hold of my head and my heart and make me believe that I am broken; that my situation is permanent; that my life is a Karmic repaying of great sins from long ago, and that I must suffer in this lifetime to make amends.
All the things I’ve had to turn down because of the Hirschprung’s Disease, the eating disorder, or the Multiple Sclerosis wear on me like a heavy coat, but I can not let them weigh me down, lest I sink.
I know how many people are out there questioning EVERYTHING, good and bad: their fortunes, their troubles, their achievements, their ruins and their calculated downfalls. People count everything up, keeping score against each other and themselves. And it is no wonder to me how people get so lost in the abyss, so dark.
It can be hard too, when you just want a moment to grieve for what is lost, only to have others, in their perceived abundance (and that’s all it ever is, anyway, our perceived notion of another persons’ gains or losses), instruct you to “move on” and “keep your chin up.” It is excellent advice; it’s even what I’m advocating, but we also need to let people feel their way through the pain for a moment, without a need to throw our rallying cry over their shoulder. Sometimes, if you aren’t yet strong enough, those words of encouragement can be a burden to bear. By not living up to the “rise and grind” standard, you can feel even weaker. I know.
For me, it is the continual decision (sometimes made dozens of time in one single hour), to not give up, not even give in. If you’ve struggled with the depths of depression you know that digging out is generally harder than holding on a little longer in the first place.
Bjork said, and I love this, “I have to re-create the universe every morning when I wake up, and kill it in the evening.” And I encourage you to do that as well, if it helps at all, to see each day as a completely new universe, full of new pains and new surprises. New beauties to behold, every day.
Don’t give up on the new day, not until it’s over. Then start all over again.
Not giving up today,
Rhéa
PS. This post was brought to you today through a combination of three things:
1. Thommy’s insistence (Thank You)
2. Jason Mraz for encouraging his readers to define (in photo form) what they wouldn’t give up on (Thank You), and
3. A Zofran that held the nausea at bay long enough for me to sit up and type this (Thank You).
(Yes, I believe in natural health, and yes, I believe that pharmaceuticals generally cause more harm than good, but after 4 weeks straight of unending nausea, peppermint and ginger wouldn’t cut it. You win a battle here, you lose it there. You try better tomorrow.)
A PROMISE FOR TODAY:
I vow to treat myself with adroit respect and resourceful compassion and outrageous grace.
I pledge to see my problems as tremendous opportunities and my flaws as imperfect talents.
I promise to shower myself with rowdy blessings and surprising adventures and brave liberations.
As long as I love, I vow to die and be reborn, die and be reborn, die and be reborn, over and over again, forever reinventing myself.
I promise to be stronger than hate, wetter than water, deeper than the abyss, and wilder than the sun.
…
I vow to love and honor my highs and my lows, yeses and my noes, my give and my take, the life I wish I had and the life I actually have.
I promise to push hard to get better and smarter, grow my devotion to the truth, fuel my commitment to beauty, refine my emotions, hone my dreams, wrestle with my shadow, purge my ignorance, and soften my heart – even as I always accept myself for exactly who I am, with all of my so-called foibles and wobbles.
I pledge to wake myself up, never hold back, have nothing to lose, go all the way, kiss the stormy sky, be the hero of my own story, ask for everything I need and give up everything I have, take myself to the river when it’s time to go to the river, and take myself to the mountaintop when it’s time to go to the mountaintop.
~Rob Brezsny, Pronoia
(A Note: perhaps the intention and original message of this video adheres itself to the notion on not giving up on a romantic relationship, but for me it has taken on a completely new layer. I echo the sentiments, understanding that the most important relationship we will ever have is the one we have with our own self; the “me” in physical form and the “me” in spiritual form, in harmony and unity; the “US” that is the whole Universe. And so when heard that way, the call is for patience with yourself while you explore, grow, fall and get back up again. It’s about not ever giving up on yourself. God knows we’re worth it.)