Slowpoke Station, All Aboard!

      Ah slowness. A word I used to despise. I'm a fire sign and that is what has always coursed through me. A  need to hurry up and get “there”, a fear of running out of time, a feeling of having to do twenty things at once or else nothing would get accomplished. And this fiery energy has gotten me far. It has given me some of my best qualities. Perseverance, Resilience, Passion for life, Grit.  So why was it that deep within my soul I was calling out for another way? Lately my physical body has not so subtly demanded slowness. Unable to walk, drive, or really leave my second floor apartment, I begrudgingly slowed way the fuck down. 

.     And I  loved it. Psych! It made me want to tear out what was left of my hair that had already all fallen out from stress. Bodies are fun y’all! Eventually though,  I started to notice my mind was craving the stillness that my body demanded and had carved out for us. Less appointments each day and filling of the hours. Less busyness and chaos. Just, less. I started to pay attention and  discovered that the more anxious I was feeling, you know that swirly feeling in your brain, that nervous jittery energy? The internal version of “are we there yet? are we there yet? how about now? Mom I have to peee! He’s hitting me!” Well, whatever I was doing in that exact moment, I would consciously take a deep breath and make myself go even slower. if I was typing emails  I would force myself to type slower, grounding myself in the action, and therefore the present moment. If five different people were texting me, expecting answers to their questions, I would make myself put down my phone, pause, sip some water, then slowly answer one at a time. This was painful at first, when everything seemed urgent, how could I possibly slow down?  But shockingly, the slower I went, the more time expanded. Suddenly my huge to do list was easily accomplished in that same one hour. All because I slowed down, focusing on one task at a time. Fully. Time didn't change, but my focus, clarity, and peace did. 

.     I’ll admit, I still find myself baffled on peaceful days. Once the slower days you longed for roll in it’s almost like you don’t know what to do with them. But I’ll take not knowing what to do with a peaceful day over not knowing what to do with a chaotic day, anytime. Thank you for this peace, the stillness, the spaciousness. That is what slowness allows for I’ve realized. Space. Expansion. Possibility. All aboard. 

T is for Trust...or if all else fails Tequila

Tonight I felt called to write, about that old cat and mouse game. You know, the one where you are looking outwards to someone else to make you feel better, or conversely allow them to make you feel worse…

This Thursday, after months of planning and praying, my surgical procedure is finally upon me. I have been struggling a bit with letting go and trusting my surgeon completely. (a bit? Ok a shit ton, jeez way to call us out Self!) Anyway, this surgeon is kind and skilled, and listens to me which are all aces across the board. Back in late May though, during my initial consult, his words and assessment of my body terrified me. He made me feel like he didn't trust my body and that it was a dangerous place to live. These past few months have been illuminating andI've done a lot of soul searching. I started to see the truth in that no one person can make you feel a certain way if you don't already feel a little that way yourself. Perhaps thats what stung even more, the lack of trust that I had in myself and in my body. Especially after I had worked so hard for my body to be a safe place to live and to try and integrate this new truth.

So yes, no one person can or should hold so much sway over how we see ourselves, and yet at the same time I recognize the value in what a positive trusting relationship with a doctor can do. My other physician who I’ve collaborated with these past ten years, has been nothing short of miraculous in helping me to see the strength of my body and the resilience, that there are so many parts that are healthy and working in my favor. 

So last week I emailed my surgeon. I just personally wanted to touch base with him and to get his assurance that we would go slow during the procedure and to maybe have him acknowledge that the area of concern looks remarkably better than it did on that day in late May. A day later, I opened up the email response from a nurse and in it i could see his careful and noncommittal reply. I felt this wave of heat and sadness immediately roll over me. I felt pressure to be doing all I possibly could to prepare the area, I felt angry, and I felt uncared for in that brief moment. Taking a step back however I could see that this all came from within me, and not from him.  I started to recognize that maybe even though I didn't get the answer I would have liked, that would have easily and quickly made me feel better, it illuminated what I could do for myself.

The deeper work is, how do I walk into the room on Thursday trusting myself, trusting my body, and trusting him to take care of me? How do I show up so certain that no matter what happens, I am safe and cared for and treated to the best of everyone's ability. Recently I watched a woman living with ALS give a talk and she said “I worked with myself to make sure no matter where I go or what I do, I already show up loved.”

That’s it isn't it? While it would be nice for physicians, or parents, or partners to meet us halfway, the real lasting change and work is what we do within ourselves. We have to show up for ourselves, unshakable in our truth and in our trust. 

And at the same time we have to be really self compassionate when we fall short of the mark. Because we will. We will always detour into fear, or doubt, or judgement, but it doesn’t mean we have to stay there. So, after I received that email I got quiet, dropped in and repeated to myself three times ‘I’m sitting with you, I'm sitting with this. I’m sitting with you, I’m sitting with this. I’m sitting with you, I’m sitting with this.’ I felt all that was up for me and let it move right on through.

I don't have the perfect answer in this moment. All I can do is remember the words I told myself that felt so true -that I would no longer let others take my joy and claim for me a truth that is not theirs to claim. My body is a safe place to live in. So for tonight all I can do is recall that, let the tears flow and be where I’m at. As much as a part of me wishes that were somewhere else. It is resisting the waves that breaks our bones, crushing us breathless. It is survival instinct to want to buck against, to fight and kick our way to the surface. Sometimes the bravest fight of all is to simply allow and to surrender. 

To trust.

Option B

A few weeks ago, I had the honor of being asked to share my story on optionb.org

This nonprofit site and movement was launched by Sheryl Sandberg. After the unexpected death of her husband, leaving her with young kids to help move through grief and raise, Sheryl decided to go on a mission to figure out what one does when Plan A goes to hell. Option B is about finding hope, building resilience, and fostering communities of people who can share, support, and lift up one another along the way. Option B although we may not have asked for it, can kick some serious ass in the long run. Click the link below, check out my story, and check out the rest of the site, I believe there is something for everyone there! xo

https://optionb.org/stories/accepting-not-resisting-ourselves-and-our-experiences-actually-allows-for-the-release-in-the-present-moment-s1vjdmatl

Love The One You're With

So today’s post is a love letter, and a story of how profound of an impact people can have on our lives, if we choose to open our minds and our hearts.

My current Caregiver A, told me a few weeks ago that she would besoon moving to Florida. There was a part of me that intuitively knew this was coming, so I absorbed the news calmly. I knew that just as how my intuition had found her in a few short days, that this would happen again. That there are good, kind people in this world who are willing to share their love and help me.

I can go on and talk about how by meditating and praying and trusting, that within twenty four hours I had attracted not one, but two! caregivers that literally happen to live in the apartment right above me, Say what?? And I will eventually share because it’s fucking awesome as hell.

But right now all I want to do is write about A.  A came into my life in January of 2016. I was coming off of a rough year of being hospitalized and then Lily my caregiver and friend of five years, told me she would now only be seeing me one day a week instead of five. I was terrified. I was grieving the loss of Lily in my life everyday, I was grieving my body, and I was unknowingly entering a time of my life of severe ptsd and depression. On top of it the caregiver Lily had hired for me, because I was too overwhelmed to do it myself, never showed. The day before she was supposed to officially start on her own, I texted Lily and said “I just have this gut feelingCC isn't coming tomorrow. I had a bad feeling about her from the beginning but had ignored it. And sure enough, without ever calling, CC never showed up. She left me me with no care, furious and betrayed. So I gathered myself up, put on my big girl pants, and within a week all on my own, I found A.

The process from the beginning was unlike how it had ever been before. I had sent out an ad to many people on care.com and A responded “Sure, let’s meet.” To be honest, I was not very optimistic, but I agreed. She came to my place and I immediately felt a connection and just a feeling of 'this is right.' I went out on a limb and since I had no help asked her to come back the next day and basically just start. No training, no talking with Lily, I just showed her how to wrap and care for me as we went. 

And it was so natural. She was clearly very intelligent, and caring, funny and interesting. I remember that first day she wiped powder off of my shirt and said “We can’t have you going out like that!”  It’sthe little things that are actually the big things in life, and in that moment I recognized a soul that cared about and for people.

Our relationship wasn't linear however, and she has been one of my biggest teachers. I was so used to being practically enmeshed with Lily, and here was a new person who sometimes- we would talk for hours, and some days we would barely say much to each other. She didn't know what I was going through mentally and emotionally, and she didn't push. She once told me “I just want to be here in the background and make everything seamless for you so you are free and have the energy to do your thing, write, whatever you want to do. Again. Wow.

She was with me unknowingly through one of the hardest, yet biggest growth years of my life. She allowed the space for me to heal and find myself again.

She is one of the smartest people I've ever met who challenged me, enlightened me, and made my sometimes small suffocating world seem a little bit bigger. 

She is beautiful and funny and tough as fucking nails. 

She poured love into every task big to small, from emptying my trash to itching my hives for as long as I needed.

We pushed each other. We were sometimes very different and yet so very much the same.

I couldn't have gotten through election season without her. Period.

We talked about love and humanity and kindness.

She taught me to be proud of being a woman, and how invincible and complex and amazing and unique we all are.

We talked about faith and how we both believe that love can and always will change everything for the better.

We started off guarded and bit by bit let each other in. 

The first time I met her my intuition said this was the one even though I wasn't sure why.  She taught me I could trust others again and take them for their word…and most importantly she led me to believe in trusting myself again. 

She is in love and about to embark on her next adventure. I am so proud and honored to witness what is about to come, and the new lives she is about to reach and share her love with.

I am going to miss her so very much.. and I hope we can always stay apart of each other’s lives. No matter what I will be forever changed, and I am so very very grateful. 

Special Needs Spotlight Interview

~ A few weeks back I was a guest on This Little Miggy Stayed Home's site. She is a fantastic momma of a fantastic special needs daughter who is doing her part to shed awareness and light on the disability community. Click the link below to head over and read my interview! xo

http://www.thislittlemiggy.com/2017/03/special-needs-spotlight-corinne.html

And I'm Feeling...It All

      So this past week has been both wonderful and brutal all in one go. This week was “supposed” to  be just a wonderful one. Hahahahah. Ok, I'm done I'm sorry. I'm just cracking myself up with that fact that I still think I get to perfectly control how our lives unfold!     

    This past week I played big. I decided to share the story of my disorder in a very public and deeper way than I ever have before. And I was proud of myself in many ways. I was proud that I was gentle with myself in writing the at times incredibly difficult words to write, I was proud of myself for checking in with how it felt along the way, how I was doing, and I was hella proud that I got it done period. 

    After being so truthful in the Spotlight, I felt called to sit down today and write truthfully what else has been showing up for me in a major way this past week. And that is Pain. Not always a fun topic, but something that in one form or another is inevitable in our lives. Chronic Hives that for the life of me I cant seem to figure out, have been back for the past two months and I once again have been going through sleepless nights and literally itching most of the skin off of my body. So my normal every day chronic pain has been ratcheted up big time, and this past week I really hit my limit and was brought to my knees. Wednesday after a morning of usual medical care, but very unusual sobbing hysterically through it, I went off to my weekly therapist appointment and I laid it all out. God bless my therapist! I let myself fall apart and say out loud “I'm so tired of being in pain. Every time a wound heals I get so excited, only to wake up the next morning and skin is missing somewhere else.” The rollercoaster of emotions are exhausting and it feels like a ship with too many holes. Every time I plug one, another leak springs elsewhere and I'm tired of bailing the water out. My arms are sore, every muscle is fatigued, I don't want to do it anymore. 

      My fabulous therapist looked at me, as she does, and said “Corinne, you have no pain management plan. I know you have been resistant, but I think it is time for one.” And so I broke down again and got honest. We started to look at some of my fears surrounding taking pain medicine. I don't even take a Tylenol for pain, so I knew I had to start looking closer. Some fears were practical, I don't want to be a drugged zombie, I don't want to become dependent, and others ran deeper.

     The thing is if I'm being completely honest, I feel shame surrounding taking the drugs. I think “Shouldn't I keep soldiering on without them, and if I was strong enough wouldn't I?” I realized a lot of my identity has been wrapped up in ‘I'm the tough as nails chick, white knuckle, zero pain management’ and that makes me “brave” and “strong” and “inspiring.”  Sitting here today though there is a voice that says Fuck. That. Shit. Who are you living for and what are you really gaining by keeping that facade running? I get to decide to help myself and trust myself and take the damn meds every now and then and feel relief if I want to. I deserve that.

When I got home last Wednesday, my face round with that sexy puff of crying for an hour straight…I cried some more. Girl, you know how to party. Guys I know! 

But there was some clarity in all the madness. I said "OK hives you're back, what are you trying to show me? And this is what I clearly heard in response.

They’re back one more time to teach me that I have permission to take something for my pain. That it is not weak, or failing, or numbing, or succumbing. It is instead, the choice of someone who truly loves themselves, will not let the little girl suffer in silence anymore, and who will start to take her life and her choices back. 

 I was then struck with the thought-  “If I was a mom, and my kids needed me, and I knew by responsibly taking a pill on the challenging days, I had the chance to be more present in their lives, would I take it?”  Hell. Yes.  The answer was so clear. Sometimes it seems so much easier to make that choice when we are thinking of others and not ourselves. But I think the question we are all faced with in big and small ways every day is, in essence, what would someone who loves themselves do?

Someone who loves themselves would not choose suffering. They would reach out for the help in whatever form it takes. They would be kind, they would be forgiving, and they would trust themselves. “I am here, I see you, I will no longer desert you. I Trust you.”

Stop, Drop, Roll...and Surrender

When reading some blogs upon entering 2017, I kept coming across the idea of keeping it simple, using a one word Intention that would be your North Star for the year ahead. And of course because I’m suuper smart and know better than everyone else, I thought psshh there’s so much I want to accomplish this year, I need more than one word! So of course as life would have it, instead of the easy scenic route, I needed to be smacked in the head a bit with my word before really getting it. And when I mean smacked I mean repeatedly hit over and over.

Yesterday I was sitting in my car in the parking lot of my apartment complex. I was staring at my neighbors second floor balcony and had the extremely random though of, “huh, if I jumped from that balcony I probably wouldn’t be too badly injured” (quick note: I am NOT about to jump from a balcony, I have just been watching too many episodes of The Blacklist). Next I reasoned, while making my escape from a crime lord and jumping, I’d have to make sure I rolled into the impact instead of tensing every single muscle. After all, I didn't want to sustain an injury….I know i know, just go with me on this. I then said to myself “psshh there’s no way in hell I wouldn’t tense my entire body if I jumped!” Luckily, I didn't  have to, and so I went about my normal, manhunt escapade free day.

This morning I woke ironically feeling as if I had indeed taken that balcony dive. My entire body, while always in chronic pain is particularly severe today, and many of the interventions that I have been doing to improve the condition of it, were not helping like they should have. And so I promptly moved in to the fields of anger and despair. I started a dialogue with myself. Why is this happening, I do everything I am supposed to, I go above and beyond in my daily care routine, my nutrition, my sleep, I'm ticking all the boxes why does it sometimes help and sometimes make no difference at all? Should I just give up and not try? No, that feels yucky and not like something I’d be willing to do. So what then, I’m tired of having such high expectations and feeling so disappointed when it doesn't play out as I deem it should. Giving up though isn't an option either. And then a lightbulb went on. Surrender.

I used to think Surrender was this fluff term, where you just give up all control and have a idealist attitude such as “It is what it is”  and "Whatever happens, happens”. It’s only lately that I'm coming to fully understand the term. Surrender doesn't mean giving up, it means giving over, and there is a huge distinction in that. I realized It’s great that I complete the checklist of items I need to  in order to take care of myself. Where I was getting hung up, was that I was doing so and then not releasing the outcome. Instead I have a narrow view of what “should” happen, and anything that falls short is a failure. What would it feel like to take care of myself, to partake in the things I believe are helpful and I want to do, but then to step back and release the results. It may feel similar to I don’t know…taking the step off the balcony and then staying soft, rolling into, instead of, bracing for impact. Wait are you suggesting that my instinct of tensing every muscle before falling, is just a weird metaphor for how I live my life every single day? Ugh ok Universe i get it.

So I guess my 2017 word is Surrender. Surrender my beliefs about my health, my career aspirations, relationships. I’ll show up, I’ll do the work, I’ll keep fighting…but maybe, just maybe, I’ll also let go and stay soft.

Show up.

I’ve been thinking a lot about anger lately, I guess how could you not with the current state of affairs we find ourselves in. As with any concept that is huge and overwhelming on a grand scale, I’ve found it helpful to take a look inward, before worrying about all the noise that surrounds us, and what our part in it plays. I was surprised at what I found though. The past few weeks I’ve been treating myself and my body more gently and with kindness. Which seems pretty simple and straightforward, but in reality has really shown me just how much anger I've carried around my neck like a dead weight. My whole life I’ve heard the phrase “I’m not angry with you, I’m angry at EB” (my disorder). I’ve always wholeheartedly agreed, Yes! It’s my disorder to blame to, hate, beat up on. And with this came the split, the idea that myself (Corinne) and EB were two different entities. I’ve always been proud and held strong to the identity that I am not my disorder, it does not define me or limit me. However, I've just now come to the realization that actually duh we are one and the same. You cannot have me without my disorder and everything both “good” and “bad” stem from it, because it is the lens in which I experience the world.

I have always taken “great” care of myself. I follow doctor’s orders, I go above and beyond to constantly strive towards better health- to never give up and stop searching for a way to help myself. However I have always, whether I knew it or not, done so with a measure of resentment. I have done it out of anger and frustration, internalizing the message the whole time that I have to be hard on myself, push myself, do the things that hurt, because there is no other way. And I sat here thinking that “Corinne” was getting away scot free. That I was pounding on the EB beating it back into submissiveness, unaware that all along the only thing I was tearing down was-Me.

I always thought that the whole “love yourself” kumbaya tree hugging way of life was great as an idea, but just not something I had the luxury of experiencing. This shift these past few weeks has been scary, and yet something that I never knew I was so desperately craving. I’ve become much more aware and able to observe almost as if I am hovering outside of my body, the way in which I treat and talk to myself.

A good example, was something I noticed on Sunday. I was with my friend Steph (hey girl!) at a yoga event over the weekend. We were being led through the poses and I immediately found myself pushing my limits, trying to submit my body to act like everyone else’s, to do the poses no matter how much pain I was in. And then I realized, um- who exactly is it that you are trying to prove yourself to? What is it that you think you gain by hurting yourself all in the name of being “normal”? And so I watched the struggle. I would push and push and then, pull back. I took myself out of the pose and took a beat, only to find myself cracking the whip again. Each time though I was able to witness more quickly when I was doing so, and gently self correct. During one of the last poses I stuck it out longer than necessary and finally took myself out of it and sat back on my mat. When I did, I looked up and one of the assistants was right by my side, she asked if it was ok to touch me and then gently started massaging my neck and back. My gut reaction was to tense and guard against this touch, and then a voice deeper within said “relax” And so I did, I let myself be cared for briefly. And it was beautiful. The thing is if I had kept listening to the enforcer part of me, I would have missed this interaction completely. But by “loving” myself, and choosing myself I allowed for the space for others to step in and care as well.

EB, Corinne, whatever name is used at the end of the day we’re describing one and the same. Anger towards parts is anger towards all. Conversely, love towards parts bleeds into all.  And how can we expect anyone to show up for anyone else, if we can't first do so for ourself? We’ve heard the phrase “put on your oxygen mask before helping others” and the words hold up.  Self-care, Self-love it’s not selfish. By giving to ourselves we are then much more able to give to others.

As I sit here and realize that being mean, angry, and having hatred toward my disorder in essence is really hurting all of me, I can’t help but think of our society. Whether we want to admit it or not at the end of the day we are all one. What hurts some of us, hurts us all. Gabby Bernstein says “show up or it will keep showing up.” I think we are all faced with this idea currently…I don't have the answers to the large issues we find ourselves collectively in and I certainly won’t pretend to. I don't know what will come next, and what my role in it will be. I do know that without having empathy and loving kindness for myself, my totality, that I will never fully have it for everyone else that so needs it. I want to show up for my fellow brothers and sisters, but it all starts with one small decision first. Will I show up for me? Will you?

Pearls of wisdom from down under

So books save my life. Always have, always will. Gabby Bernstein’s The Universe Has Your Back-says it all in the title. I had the honor of seeing Gabby speak live at a conference in 2013 and her presence was palpable. I immediately connected with her and her message. Little did I know it would take me three hellacious years to come out the other side, in no small part to her and to the Universe. There’s a lot more I will be saying on my journey with her message and how its impacted my life in a BIG way, but it’s election night and I'm gonna keep it light and mostly dumb. And by mostly I mean completely… Our Founding Fathers might be blushing in the grave from how many times our country has publicly uttered the word ‘Pussy’ over the course of this election. They might even ask what the hell does an innocent pussy cat have to do with a presidential election? Oh by pussy that means vagina…got it…wait no still don't get what THAT has to do with an Erection heh heh I mean Election… I assume the Founding Fathers had the humor of a prepubescent boy. Anyways I digress.

So in honor of this election, I'm here to talk about my very own Vajeen. There’s a sentence I never imagined typing.

Last Thursday I had my annual OBGYN visit booked. I called the office before leaving my house to confirm the appt. and was told that my doctor was actually not in today and they forgot to call me to let me know. They did however have a midwife named Ursula who could see me. In my new state of “go with the universe girl, maybe this will be a good thing” I said um ok?

-Actual first thoughts when they said I was going to see a midwife named Ursula…darling it's better down where it's wetter take it from me...so true Sebastian. So true.

So, off I went for my clam shell to be pried open and sent a quick prayer that I would fare better than my fellow sister Ariel had.

Ursula ended up being a lovely 61 year old german woman, and not a sea monster. Close call. After going over my history and getting to know each other very intimately, Ursula had some parting words of wisdom. And I didn't even have to pay with the price of my voice! (just my dignity that was on the floor alongside my pants). Sweet Ursula kept telling me in a very serious tone- I'm a beautiful person, to keep the faith, and hopes I find a good man and relationship. Amen sister and Right on Universe!

...She also hoped I was seeing a doctor for my brain i.e. Therapist. I assured her I was and upon further reflection imagine I was screaming out to her 1. I'm emotionally unstable AND 2. I need to get laid...honestly fixing number problem 2 might cure problem number 1

....lessons learned all around.

‘Murica! Freedom of Speech! You're welcome for the unsolicited Vagina Monologue. Like Ursula says keep the faith! We’re all gonna be just fine…

The Road Less Traveled

  I haven't written here in years and I kept thinking how can I just pick it up, so much has happened. Too much has happened. So I choose to do the only thing we ever really can, start with where I am, right now in this moment.

We all are probably familiar with the quote “ Two roads diverged in a wood, and I- I took the one less traveled by” - Robert Frost’s ‘The Road Not Taken.’ It has been a long time since I have read this poem, and so I went to Google to make sure I quoted it correctly. What really struck me however, were the opening lines. They read as: “Two roads diverged in a yellow wood, And sorry I could not travel both.”

Wow. Yup. Lightbulb.

You see, I’ve always believed I had two lanes in my life that I would hustle and sometimes not so gently jostle back and forth from. Lane one- my body is physically broken down, I’m on the side of the road, and there’s no choice but to pause and get my hands dirty, slick with the sweat, work, and tears of trying to recover and gain my strength and wellness back.

Then there is Lane 2- Autopilot, where I can take my hands off the wheel because I am feeling healthy enough, capable and able to participate in my life the way I so deeply desire to. I’m able to show up for myself and for others. And I would struggle with how the pendulum kept swinging, sometimes becoming angry and resentful. Why cant I have both? Why can’t I be healthy and take care of myself physically, and accomplish, and do, and see, and be, without paying the consequences later on?

I thought there were only two gears, two lanes. Flying High and Feeling Free, OR Major Burnout, Danger Zone. Stop your gas tank light is screaming E!!!!

It’s only now that I am realizing there has been a third lane hiding in plain sight.

In this third lane, what if while I was feeling good, relatively healthy, able to create and serve others, what if, as I got to the top of the hill, I gently started pumping the breaks. Just a bit. Each day. What would happen if we took time along the journey to refuel and fill up our stores. That we didn't need a health crisis, or a crushing loss to send us to our knees and wake us up.

The past few years I was brought to my knees so hard that I began to wonder if the indentations from my fall would ever leave the earth.  I tipped to one extreme. Hustling for my life and my health became my 24/7/365 job for two years straight. And I had to, I was literally fighting for my life, but it did come with a cost. It didn't kill me but I lost myself somewhere along the way. And so as soon as I could I see-sawed myself back over to the other lane, trying desperately to fill in my life and my days with things that brought me (or used to) bring me happiness and fulfillment, ignoring when my body was giving me signals that it was tired and needed off the mat.

So about a month ago I started to surrender (not gracefully mind you) and I gave my body the break. I took the steroids I was so afraid of, I went back on the feeding pump (more on this later) and I got really still. I didn't have the numbing distraction of food, I dragged my ass to my yoga mat. I meditated. I prayed. And when I opened my eyes I realized I was on a whole new road. New and strange, but one that had been waiting for me all along.

I’ve already been tested in a small way by the Universe and just so y’all know I kinda failed it so have no fear I’m not Mother Teresa yet. Last night I finally felt inspired to write, which I haven't in over a year. And I was in the zone. My creative energy was flowing and my adrenaline was running and I felt incredible. Except that I didn’t. Because it was already late at night, I hadn't slept well in two days and I had been on my feet more than usual as well. I knew I needed to put myself to bed, that if I kept going, I wouldn't give a shit about what I had written or what ideas I had because I would feel so physically bulldozed the next day. And so listening to my wise self I went off to slumber town. JK! I didn’t! And everything I “predicted” came true. I woke up this morning feeling exhausted and in so much pain and who gives a shit that I had a funny joke using a Justin Bieber lyric last night?

So I did my usual dance of beating myself up and despair. Until I made myself get still, look at the situation with a softer lens, and magically the third lane appeared.

This is just a small example in how we can all be kinder to ourselves and to honor all of our parts. Yes self, I am thankful for your creativity and ideas, I will make a note of them and then put it away. Yes Self, I hear you, you are exhausted and the best gift you can give me right now is sleep. I will see you in the morning, projects, ideas, and to-do lists.

Whatever you are carrying be it good, bad, big or small, it will be there in the morning.

So try the third lane on for size. Get honest, start small, and then walk. Maybe one day you won’t even want to look back…

*Footnote- I wanted to finish up this post last night but I made myself take my own advice, shut the laptop and get ready for bed. I put on Lady Gaga’s new album Joanne while getting ready and the first lyrics I hear are-

“ Oh I could use some two or three or other kinds of way to be, but today I wont be so hard on me. I’ll walk alone down a different street and smile at all the new strange I meet”

For those of you who know me all I have to say to that is….whaaaaatt?!

This past weekend I somehow stumbled across a book by Amanda Palmer called The Art of Asking or How I Learned to Stop Worrying and Let People Help. Amanda Palmer is a musician who caught attention for raising 1.2 million dollars over on Kickstarter to fund her latest album. She maintains that she learned the most about creating connections and community from her days standing on a milk crate as a human statue handing out flowers in Harvard Square. I immediately felt possessed to click that Amazon Prime purchase button. My brain was screaming - um you need this book and you need it now. I was so overcome that I even paid the extra $3.99 in order to receive one-day shipping. You see, in my mind, this book was promising me I could easily learn how to ask for help. I suspect I’m not the only one who fails miserably at this everyday task since apparently a whole book has been published on the topic. Growing up with an illness, you might think "wait, don’t you ask for help like, I don’t know all the damn time?" And you’d be right. Sort of. Asking for help has always made me feel like a huge burden though and strangely sometimes even harder than asking for the help was actually receiving it. I remember once in college I was hanging out in the library with this guy from my class. I had just whipped out my stapler and was attempting to staple twenty pages together. The pile was thick and I was fumbling majorly. He kindly said “here Corinne, let me get that for you.” And I was mortified. And offended. What makes you think I cant do this on my own? I mean apart from the fact that I can’t but that’s soo not the point jeez. If you begin to dig a little deeper, which time and distance sometimes allows for, beyond the defensiveness, shame and vulnerability were laying in wait. It was the feeling of "oh shit." My carefully and painstakingly painted veneer was cracked. He could see I needed help, and instead of feeling grateful I was left feeling pathetic.

But this is just one small example. We all need help in big ways and small. From asking if our neighbor would watch our dog to asking our partner if they will love us for the rest of their lives. We all ask of each other and in the asking lies the wonderful gift of being able to connect with and assist others. It is how we create community and connection. And when we ask “has anyone else felt this way?" we allow for the collective sigh of a “Me too”. I thought I was alone, but me too.

Lest you sit there though and think wow Corinne is such a fast learner, I’m jealous. Fear not. Just two hours ago, I texted a friend to ask her if I should email my doctor to ask for help with something or if that would be too annoying… Womp womp. Hey I asked my friend for advice though that’s something right? Work with me here. Awareness is half the battle. Asking isn't always easy. We may ask the “wrong” person, we may ask at an inopportune time. But we can never ask for the wrong thing. Because what a person needs should never feel bad, or too big, or wrong. So that thing you’ve been meaning to ask for, go ahead. Do it. Just Ask! Unless you’re asking to eat the last of the ice cream in the freezer. Don’t be a dick.

P.S. Here’s Amanda Palmer’s Ted Talk, it’s worth the watch.

https://www.youtube.com/watch?v=xMj_P_6H69g

Won't you be my neighbor?

This time last year during the lovely polar vortex, due to recovering from foot surgery, I spent my days sliding up and down my apartment stairs with a chic garbage bag tied to my waist in attempt to keep my bum somewhat dry. I know how to party.

Leopard scarf with cinched garbage bag skirt...don't tell me I don't know how to accessorize. Also instead of helping me, Lily thought this would be a good time to capture the moment...my friends are the best.

In honor of the snow and bitter cold this week I thought this would be an appropriate story to flash back to…

~It was just another Monday, sliding up the cold concrete steps on my ass, taking solace in the fact that at least the left side of my body would be jacked and gorgeously toned by the end of this latest adventure. So I make it to the top of the landing, wheezing as per usual, and preparing myself for the final choreographed move in this daily dance with the stairs. It entails me swinging from my butt onto my right knee, making sure my right foot doesn’t hit the ground, than grabbing the railing with my left hand, pulling myself up on my left leg and swinging into the awaiting wheelchair.

This all goes down right on the threshold of my neighbor’s front door. I’ve never met this neighbor, but I once had a dream that they were French and in a band, and was seriously convinced for awhile that this wasn’t a dream and actually true. Well sadly that day I debunked that belief, for my neighbor whom I had never had the pleasure of meeting, decided to open his front door at the exact moment of *right knee on pillow, ass in air*

I don’t know who was more surprised, me that someone actually lived there and probably really could hear me belting out my version of Beyonce’s If I were a Boy at all hours of the night, or him, confused as to why this strange woman was ass up on his welcome mat. Welcome indeed. I did a quick awkward wave, because what else is there really to do at this point and he naturally averted eye contact and walked around me.

I really think we’re going to be good friends.

Same Old New Year

The New Year is fast approaching, and as society has drilled into us, it is time to evaluate where we are at in our lives and what we would like to manifest as we propel into January. I have many goals and ambitions for myself in this upcoming year, as I am at a point in which I am ready to make the leap  both in terms of my writing and potential work as a patient advocate. All of these goals and desires while exciting also fill me with a mixture of great fear and unknowing. Yesterday I was sitting in Freehold mall having shopped till I dropped, when all of a sudden a familiar feeling overtook me. It is one I have experienced many times before. When there is a lull, however small it may be in the roller coaster that is my health, out of nowhere a panicky feeling bubbles up within. I suddenly get visions of myself, snapshots from battles past. Me in a hospital gown, or IV’s snaking in my arm. It is more than just a image in my head, in those brief moments I am experiencing the moment all over again. It is visceral and unyielding. The first feeling that surfaces is usually panic, panic in not knowing when the other shoe will drop, when the next challenge will present itself, and feeling that this reprieve I am in is just too good to last. It always is.

But these feelings are not the ones that frighten me. Instead the ones that follow next are the ones I am always ashamed of. I have the thought of, “well at least dealing with a health crisis is a known entity.” It is comfortable, familiar territory. I am equipped to deal with whatever springs up and I am good at it. I am good at feeling horrible and having to puzzle through the next saga. It doesn’t mean I like it or want to be dealing with it, far from it. However the known unknown of my health sometimes feels a lot less overwhelming than the complete and utter unknown of what I call my “actual life”. The me apart from my illness. My ambitions, passions, goals etc. And I immediately feel guilty for thinking this way. Am I nuts? When I am sick all I dream about is feeling better and getting back to “normal.” So why then am I sitting here scared of it, of potentially even experiencing success and fulfillment.

When looking back in my journal I came across a brief entry from around this time last year. It seems to sum up perfectly what I have been struggling with lately.

12/2/13 -Why is it the things we really want in life, we dream about them, turn them over from every angle in our mind, imagine living out these moments- yet when they are actually close to coming to fruition, we are suddenly panic stricken and terrified? Maybe I don’t actually want this, I won’t be good at this, who do I think I am, or my favorite, I’m not ready. When are we ever truly ready for any experience good or bad? That’s why it is called an experience. We are learning as we go and deriving meaning from every encounter.

So have I learned anything in the past year about fear? I’m not sure.

I know that I’m more afraid of not trying than trying. I know when I ‘m experiencing a big surging wave of fear that most likely means I’m stumbling onto something great. That I can and should push forward and take the next step, be it baby or giant. And I know beating ourselves up for being afraid is counterproductive. We all have something we are afraid of; fear is innate and serves a purpose. It is what we choose to do with it that matters. It’s saying Fuck It and holding on tight for the wild ride ahead.

So yee-haw here’s to 2015. May it be a crap your pants terrifying, exhilarating, wonderful and brand-new year for you all!

Ain't no hair do crazy enough, to keep me from getting to you babe.

So I’m pulling out this story from two years ago because just a few days ago this almost same exact scenario happened yet again. You’ll see. Two years ago: It all started one lazy Sunday with Lily and myself. Lily is much more than my caregiver; she is my sounding board, partner in crime and all around badass of a person that I somehow lucked into having in my life. That morning I had asked dear Lily if she could throw a few braids in my hair; in attempt to get the beachy goddess wave look going on. When I looked in the mirror I could see she had instead given me full on snoop dog, going in a million crazy directions cornrows. After a gentle reminder that yes I am her sister from another mister, but no I do not have black hair, I shrugged it off knowing I was spending the entire day on the couch. So to complete the ensemble I threw on my Aladdin Genie Blue Adidas pants. Yes I like to describe colors based on Aladdin-Jasmine Turquoise is my everything. I topped the look off with my senior week shirt from college. Stunning. I then settled in for a nice marathon of USA network’s fine programming, White Collar. A few short hours later the phone rang from that same beloved Lily.

Me: “Oh hey girl what’s up”

Lily: “Oh not much, um I crashed my car and my mom and I are in the hospital”

I immediately jumped into help mode and asked what she needed from me. She asked me to bring a spare pair of underwear because she may have peed herself a little. Spoiler alert, this won’t be the last story I tell involving accidental urination. Anyways, I jumped in my car and rushed to the hospital, only to realize when I arrived that I looked crazy. I mean ape shit crazy. So in attempt to hide my ‘hurr do I casually threw on an off white beret I had lying in the passenger seat of my car. I’m gonna be honest here I think it really set off the entire look. Did I mention it was July? The next text I received as I was working my way into the hospital was “oh by the way Darrell’s here”

Darrell, oh ok as in your boyfriend and love of your life that I’ve NEVER met. And I’m about to meet. And I look insane. As soon as I strode through those ER doors, Lily started laughing immediately. I soothed myself by feeling happy that I could put a smile on her face in times of crisis. Hey, I’m a giver. I spent the rest of the day bossing around the ER nurses who were doing a shit job. I think my ghetto hobo look added that extra something to help them view me as a serious mature adult. Yes Nurse Jones I may look like an escaped mental patient but I know what I am talking about, and my father is a physician at this hospital. You paged him to confirm? He refuses to acknowledge that we are related once he peeked in and saw me? Oh.

---------------

Last week:

So here we are, almost two years later and it’s just a normal unassuming Monday. Lily had just finished putting a deep conditioning treatment in my hair and placed the plastic cap over my head. I sat down in the kitchen to answer some emails when Lily’s cell phone rings. I can immediately tell something is wrong and as soon as she gets off the phone she bursts into tears. Her mother in law was calling to say that Darrell, Lily’s now husband may have just been in a car accident. Lily is shaking and trying desperately to reach him, and I’m not going to lie to you guys, my first thought was, Shit. I can’t believe we are meeting Darrell again at the hospital and I am once again looking like some kind of fool with a madea-esque shower cap on.

It’s all good we can laugh about this guys, turns out her husband was fine and it was just some thugs scamming her and trying to get money from them. Just another Manic Monday.

The moral of this story is- friends before split ends.

Disabled is the new Abled

So when starting this blog I knew I wanted to strike a balance between talking and starting conversations about the hard stuff, illness, pain, loss, vulnerability, and also sharing my other passions such as music, fashion etc. It is easy to pigeon hole someone as ill or well, book smart or street smart, into fashion or math. Yet that does not paint a picture of people. All parts make me, and so, I decided I would be doing Fashion Fridays.

I've been obsessed with clothes, style and fashion since I was a young girl. I’ve always had a flair for the dramatic-aka there is no such thing as too much leopard. I would even put on fashion shows for my poor, supportive mother. I was always a giver though and made sure to provide imaginary popcorn before the start of each show. I would then yell at her when she wasn’t eating said imaginary popcorn correctly. Me? Control issues? No, that won’t be a theme on here. I'm not sarcastic either.

I woke up like this...                                              Flawless.

Anyways, I sat here getting ready to post fun pictures of myself in my favorite outfits for winter after I was inspired by this quote by Kate Spade. “Playing dress-up begins at age five and never truly ends.” I have a playground right outside my apartment window and thought Bingo. I thought this would be fun and light and then out of nowhere a few nights back it hit me that there was a much deeper issue here to discuss. Shit.

I started to reflect on something that has bothered me my entire life. Why do people feel it is ok to comment on and confront someone with a disfiguring disability? (hate the word disfigured, we’ll get back to that). I would be a millionaire if I had a dollar for every time a complete stranger has asked me a litany of questions ranging from “Did you get burned? to “what’s wrong with your hands? Or, my favorite, “does it hurt?” And not in the cute did it hurt when you fell from heaven pick up line way. No,  the- I am a complete strange let me ask you about what looks to be very painful and personal. I think I get a lot of comments too because since my face is “normal” to most it looks like something just “happened” to my hands. No one knows, nor should they necessarily, that I have a complex severe illness that has left my entire body “disfigured”.  How when I catch your eyes on me I instinctively pull my shirtsleeves down to cover my hands, or adjust the collar to make sure my neck hasn’t peeked out.

Body image must change for those with physical disabilities. Just as we wouldn’t (hopefully) go up to someone who is overweight and ask "What happened why are you so fat?” our bodies should also be respected and not viewed as a perverse curiosity.

Why does the term physical disfigurement even exist? If the media, celebrities, your local congregation all preach and espouse that there is not one type of body and we should all embrace however we may look, then why are physical disabilities put outside this chart? The ideal stating that there is no one size, shape, type and everyone is beautiful. Physical disabilities seem to be the asterisk on the bottom noting- except if you have an illness or other type of disability. If you have been burned or scarred, if your face has shifted from a stroke or brain bleed, if you walk differently or belabored, if you have lost a limb, or breasts, or an eye.

 Each week, I want to continue to delve into an issue that I've honestly hid from for a long time. When I would hear snippets of arguments presented once in a blue moon about the dangers of all body types not being represented in the media, I never thought to stop and consider myself a part of this. Yet I now recognize the danger in not being seen and the shame demons that spring forth from the shadows. We as human beings are afraid of what we do not know. So I am not here to sit and blame the world and everyone else. I have to stop bitching and start leading by example.

 So I will push myself and begin with not hiding my hands. This may seem so small to some but is one of my biggest hurdles. Body image issues span greater than just the world of "disability" though. Just as it may seem like a nightmare when I picture walking into a room with just a tank top on, another young woman "able bodied" may feel overweight or not good enough and have the same paralyzing fear. I want to create a space for all to be seen and celebrate one another. I know I’m tired of hiding. Are you?

*also I look fly and style is fun. It’s not that serious so let’s have some fun…

I so did not wake up like this... 

Can't Kick the Chronic

Every week I will be throwing back to a “that time” story. They will nine times out of ten be a mixture of absurdity and embarrassment. So here goes… Remember that time I wrote a rap?

Let's just dive straight into the insane world that is my brain shall we? I wrote this chronic illness rap, when all true rappers write their best shit...at 3am. In bed. Unable to move due to recovery from my latest surgery and ironically, dead sober. Took an unsexy turn there didn’t it? I spent the next hour furiously on my I-Pad typing notes to myself so I wouldn’t forget it (although I really wish I would have.) There was even a note to myself saying *compose chorus on piano. I mean…

I'm sorry did I mention I had been stuck alone in my 1 bedroom apartment unable to walk for the past five months? Yea context may help me plead my case of not being a total weirdo. Or not. Ok, ok, I'm procrastinating. Without further ado I present a sampling of my mad skillz. And three, two...

mm yea. mm yea. (picture sick beatbox, got it yet? mmm feels good)

Verse One:

Jacked up off that chronic, if you don’t fix me up I’m talking plagues-Bubonic.             Got it in my veins and I’m going insane.                                                                 So damn ill can I have another pill?                                                                        I'll be your patient but my patience runs kind of thin, like my skin.                     Losing sleep and piece of mind, someone get this girl an Ambien.

I've been up a creek, no paddle. Put to pasture moo, cattle.                                  But I keep climbing up that hill, like Humpty Dumpty took a spill.                        Don't know about all these kings’ horses and men but docs put me back together again.

Uh what up doc? Like bugs bunny I've tried to be funny.                                       But to end lets take a serious turn. The world has got a lot to learn.                        It's not outrageous we're not contagious EB won't spread, that's what I said.      Spread love not fear because we're people and we hear, and we see, and we feel.    We all bleed when we are cut, real deal.

----------------------------------------------

I’ll spare you the rest of my insomniac delusions. But Wiz Khalifa if you read this, you know where to find me.

See you all on Friday and I promise I won’t be rapping…

(drops mic)

Chronic Illness and it feels so good...

~I am so much more than my EB, on the good days it is the smallest part of me, inconsequential and just one part of my complex puzzle. But then there are days where unfortunately all I am is EB. It is inescapable and all you can see in front of you. It consumes all of your time and energy and it is exactly who you are and in that moment the most important part. So this is the challenge of living with a chronic illness. Learning to live with the constant ebb and flow. To know the bad days won’t stretch on forever and that the good ones will pass by all to soon. ~ I wrote the passage above one year ago, in the midst of recovering from my latest health hurdle, Squamous Cell Carcinoma of the foot. I was sitting, as I had been in my apartment unable to walk for the past five months. (More on this later) There I was, forced to literally sit still and examine many parts of my life-how I took care of myself physically and emotionally, my relationships with others, my career path and ambitions. I was sitting broken in more ways than one. And little did I know at the time, healing in more ways than one. Who doesn’t love a good existential crisis and awakening at twenty-four years old? Yeaaa….

Anyways let’s fast-forward for now to November 2014, a month ago, where I had the privilege of experiencing a truly full circle filled weekend, as I crossed the threshold of Emerging Women live in NYC. I find it fitting for my first post to be about this experience, since going there is what has set me in motion again and finally given me the kick in my ass to share parts of myself with you all.

Going into this event, created for professional women ready to emerge and take a bigger stake in their lives and the larger world, were many women I was incredibly excited to hear speak and be in a room with. One in particular was Kris Carr. Unbeknownst to her, this women played an instrumental role in not only keeping my sanity over the past year but in helping me to explore issues I had always been grappling with and forcing me to ask the hard questions of how did I want my life to look like moving forward.Kris Carr is the creator of the Crazy, Sexy, Cancer Series. Over a decade ago she was diagnosed with terminal cancer, sent home to put her affairs in order. And today she is thriving, discussing how you can go about healing, which is not the same as being cured. The first time I saw her was on an episode of Oprah’s Super Soul Sunday. Yes watching Oprah became a thing during my five-month house arrest, do not judge. But I digress. So here I was mildly paying attention to this women who had appeared on the screen, beautiful, blonde, seemed healthy enough, when all of a sudden she spoke these words:

 “I completely accept that I am a woman thriving with cancer. Its part of my life, It’s not something I am ashamed of or reject. There are pieces inside myself that may not be as well as other pieces. Would you curse the ground because a spot of grass is missing and should look like a perfect lawn? When we truly embrace acceptance that’s when our body exhales and can begin healing. At a scan years ago, I was so unbelievably tired, in my bones. And I felt like giving up. Not on myself, or my life, or my loves, or goals, but on the idea that until they say I am perfectly healthy, I am broken. That was a dragon I would be chasing my entire life If I didn’t change my thinking. I may never be healthy on paper but I am well...live for yourself, not your parent, spouse, career, illness-but for you. That’s the golden ticket.” –Kris Carr.

And cue the waterworks. I found myself sitting there on my couch sobbing, feeling something within the recesses of my chest crack open. She was saying what I so needed to hear. That for my disorder I might never be cured, but that doesn’t have to mean I am not whole, that I have to keep waiting for that magical day. This, this right here is my life so what am I going to do with it? And how much more time am I going to spend wishing it was different, or being angry at a body that though parts are broken, is also incredibly resilient and strong.

So here I was ten short and incredibly long months later sitting front row and center, looking into her eyes and hearing that familiar and comforting message. I remember at one point looking down at my right foot while Kris Carr was speaking and was filled with a powerful sense of gratitude. That I did it, I got myself here not just in the metaphorical sense but physically. My body provided for me, even when at times I did little to nurture it or show it my kindness and faith.

I’ll leave you with one more story from the conference. The days were long and packed with speakers. I wanted to be present and absorb everything, but after day one of sitting on a chair for hours my body was yelling at me. Big time. The wounds on the backs of my thighs were throbbing and I knew I had to make a choice. Either suck it up, continue to hurt myself and make it through, or to not attend every single workshop and speech. In the past every single time I would have chosen the first option, no question I would grin and bear it because damnit I want to be there and I’m not going to let my stupid body “win”. However that day a third option popped into my head. “What if Corinne, you put your feet up on a chair in front of you, that way you can offload the pressure and still attend everything you want to?”

Immediately evil Corinne…let’s call her Helga. Sounds like a punishing enforcer. (sorry to any Helgas out there!) She said, “Don’t be an idiot, everyone will stare at you, or worse think you’re lazy and just putting your feet up. Don’t stick out, don’t call attention to yourself, just BE like everyone else.” This time however I pushed back. The only person I am punishing is myself and wait just a minute... I kinda like myself! So I challenged Helga and called her bluff. I walked into the conference the next day and put my feet up on the chair in front of me. And I was Hella uncomfortable (or should I say Helga-heh cracking myself up...I do that a lot here. #sorrynotsorry. Oh I am so sorry I just resorted to that...) Sorry back to the story. I was extremely uncomfortable-emotionally at least, physically I felt fabulous. I met everyone’s stares. Some looked confused as to why I was hogging a chair, others didn’t notice. Just as I was starting to feel really anxious a woman arrived in the row behind me. She sat down-and turned around the chair in front of her, putting her feet up while leaning back.

Holy shit. Did I just give someone else permission to make themself comfortable? Did that woman think, “what a great idea, I’m exhausted and that looks really nice.” And that’s when I realized, when we allow ourselves to be authentic and ask for what we need, we in turn are letting others do the same. It is a trickle effect showing up, being present, and being authentic and I know moving forward I want to push myself to embrace my needs, my desires, and my truth. Because I sure as hell want to live in a world that is doing the same.

Music Monday Rec: Love the original My Body, by Young the Giant, but had to post a fellow female's version for this post...

http://www.youtube.com/watch?v=OAE9KWmRFus