Wednesday, July 4, 2018

Being Human-Part One-My Story

I've been thinking about what I want this blog to be about going forward, if I'm even going to keep it. I initially created it to share my self, openly and vulnerably and I feel, that while I've done that at times, it's become more of a 'spiritual insight' blog. Not that there's anything wrong with that. Yet, I feel myself shifting more and more away from theoretical subject matter and into a more human experiential context. That's not to say, I shut myself off from spiritual oriented topics. I still find them immensely helpful as a grounding source for everything else.

I've found that so much of what I've written early on this blog has come through me from a higher part of myself. At times, insights would just flow and I would try to express them in the best way possible through my writing. Yet, at the same time, there has been a lack of vulnerability in some of my posts and I really want to be more open here in this one. I've tip-toed around certain things out of a fear of what I should put out here. With the encouragement of a friend today, I want to share a little deeper about my own story of dealing with chronic illness.

This will be a multiple part blog post detailing my own experience and the second part will be a little more theoretical, but I will try to segway the first part into the second part.

My intention here is to use this platform as an expressive sharing for and of myself, and also, to hopefully help encourage other people to understand that it's safe to be yourself and express yourself, and it doesn't need to be difficult, but you do need to trust that it's safe within yourself. There are people out there willing to listen to you and hear you for exactly as you are. Dividing aspects of our experience into 'good' and 'bad', 'positive' and 'negative', is what keeps us stuck in the first place of not feeling good enough. But, I first want to do a little open sharing of myself. So, for anyone who reads my blog, they will know a little more about my own journey and who I really am. I'm not sure if I will delete this or not. But, for now, here goes.

I've dealt with chronic illness since 2006/2007 when I was in my mid to late 20's. At times, I've felt better and other times, early on, from 2007-2009, it was so difficult, that I wanted to escape it so badly, and had a lot of thoughts about 'leaving'. That's how bad it was, especially early on when my symptoms began and I didn't know what was wrong with me.

Of course, I've only shared this with a very very select few. But, when you feel like your life is never going back to the way it used to be, and there's no way out, the over bearing stress of living a life alone, with awful symptoms, with no one who understands what you're going through is too painful to bear. I never actually considered suicide, in the context of doing it, nor would I. But, the thoughts of leaving this world went through my mind a lot in the early going. The thoughts of how much easier it would be, without the stress. When I first got sick, it felt like my life was over as far as I was concerned. I just wanted release from the stress of living in a prison. But, there was something inside of me that kept pushing me each day to get through, at least it felt like.

Often,  I was just a walking zombie, going through the motions. Trying so hard to get through each day with chronic fatigue like symptoms and a slew of other symptoms. But, I was never sick enough, where I was bed bound like so many other poor people, although many a day, where I could barely get out of bed. I was functional, which was a blessing and a curse, with a job, in grad school, and then post grad school, going on interviews, doing internships. I was dating constantly. I was going out. I was traveling. I just pushed myself to do things and would numb myself with alcohol on the weekends in the first few years of being sick. But, then when I couldn't even drink alcohol anymore, I felt more and more lost and trapped. I could no longer escape what I was feeling and that was the worst feeling in the world.

A lot of my nightly dreams that still occur, that reference those early years of dealing with the chronic illness (first few years) have some of the most profound emotions of pure.......despair. Despair is the best description of the emotions that encompass those dreams. It was the lowest of lows, and the most 'alone' feeling I have ever endured. The blackness of those dreams comes with the feelings of just unspeakable solitude, emotional repression and just a desperate longing for someone to hear me, hold me, understand me and tell me it was going to all be ok. I felt so disconnected from the world and most of all, from....myself.

I felt so strongly in that time period, that life was going on without me. Everyone was getting on with their lives. But, I was failing. I was petrified to fall behind. This has been one of my core fears that I still have, from early childhood, and it was triggered mightily during the period of chronic illness. Basically, the massive insecurity of falling behind and being in the wrong place. If I did, who would be there for me? Life would leave me behind and I would get sucked into a black hole of abandonment, rejection and loneliness, and most of all, I would lose love from others. Ultimately, I would be failing at life. As good as my life was before I got sick, it was only recently with the help of therapy and reflection that I came to see how I lived much of my life up until the point of chronic illness, in a perpetual state of compulsive behaviors of trying to control everything to ensure that I felt safe. I never really felt safe in my life. I avoided vulnerability often, like the plague.

It feels strange to say, but I really never had a concept for who I truly was through much of my life, and lived my life depending on what others thought of me, incessantly seeking validation in different forms from other people.

Being sick, meant something was so terribly wrong. I inherently, was wrong. Can you possibly fathom how awful that feels, to truly believe that the core of your essence is wrong?

In the early years of illness, I clung so tightly to certain people in my life at the time, who are no longer in my life now; but, people who were also struggling with illness. So afraid that they would get better and leave me. If someone close to me was dealing with the same stuff I was dealing with, I felt safer to relax, because if others that I was close with, were in the same boat, it meant, I wasn't alone dealing with this and I was so afraid to be 'the only one who was stuck'.

But, if the other person got better and moved on with their life, it meant to my already over hyper-vigilant/frozen nervous system, once again, that I was all alone dealing with my own internal hell....by myself and dear god was I scared of that, having to face myself, because illness was like this giant red banner, thrown in my face saying "Oh boy, this is not good. You're fucked buddy". I had no choice now, but to face myself. That was not an option though. I couldn't accept that limitation of illness.

Chronic illness prevented me from living the life I thought I was supposed to be living. I was stuck here in this body, in this moment, and being stuck here, in this body, in this moment, was not an option. Yet, I could live up there (in my head, in that story of Derek) easily, and in order to feel safe, that story of Derek needed to have complete control over his life. But, chronic illness took all of the control out of my hands, forced me into a box of limitation, and literally has forced me out of my head, and into my bodily experience which I avoided for years. I'm only first finally now, learning how to explore this.

That fear around being alone with chronic illness is still so prevalent in my life, granted I have a lot more awareness now when it arises. Yet, there is a lot of shame here in acknowledging all of this as well that comes up. The ideal perfect image I might have once had of myself as this strong man; this man of spiritual magnitude; this man who wants to be seen as someone who has complete control of his life; a man who has it all together, has all of the answers, is confident and powerful, has been replaced with this flawed, imperfect vulnerably weak scared child. The risk of showing that side to you, and to the world is the risk of not being loved, or perhaps what I have always believed love to be. And this child has dictated so much of my life for years as it turns out, as it....is the one who wants to be seen as strong in the first place. It is the one who wants so badly to feel warmth, love, security and safety in the first place.

It was ingrained into me through my family, society, culture, etc, that I needed to be someone in this world. I needed to get somewhere and achieve goals. I needed to become someone. But, even beyond that, I was so desperately hungry for validation and love from other people, which is why I was always seeking out a new potential romantic partner. This started when I was a little kid. I couldn't even really sustain any kind of real relationship when I was sick, because of my limited lifestyle. I again, had no context for who I truly was, and I looked for myself, in others. And now, I couldn't even get the validation from others.

Being sick was simply not an option. How could I keep going and going and going and keeping up with the Joneses, if I allowed myself to actually stop.....and move into my inner experience....and actually.....make it ok...... to be sick? What if Being sick was PART of my path, and not some impediment to getting somewhere else? This wasn't even a concept for me at the time. But, when I started exploring zen meditation around 2009, there was some sort of realization awaiting to erupt in me.

My nights and days were filled with researching and researching in order to find the right modality to heal and get on with my life. And lord knows the internet is filled with so much information on healing, that the overwhelm one feels is almost too much to bear. Back then, there was even more confusion on the internet, because this topic was much less well known and the internet 10-12 years ago, was not what it is today. The stress of NEEDING to find the answers was a weight on my shoulders that I could not remove. I so desperately wanted to get better, because I so desperately wanted to get back to my old life....which was becoming more and more a distant dream as the years went by.

I will close myself off, when I feel the people around me, are not safe enough to share myself with, out of the primal survival fear of rejection. I've yearned to been seen, understood and just fucking accepted. I've wanted so badly to let go, surrender and just be.....me, illness, flaws and all. But, it's been so difficult because it's just never felt safe enough, to be me; to allow myself to love what's already there, as deemed by my dear nervous system which has believed that we have to keep pushing and pushing through to get somewhere else....perhaps somewhere safer. Early on, I felt too weak physically and emotionally to surrender. But, surrender was the calling home, that I so desperately longed for.

There was so much rage and sadness that was hiding within me during the early years of the illness and anger was something I dealt with for years prior to that even as well. I could not express it, because it wasn't safe to express it. It just becomes more and more internalized. I didn't feel worthy enough to share with the people who were in my life at that time period when I first got sick, the cacophony of emotions and symptoms I was dealing with. I didn't feel those people were a safe haven to allow me, to be me. I was never taught that it was safe to be me.

So, I needed to get approval from others, that it was safe to be me, before I could actually trust myself.....that it was safe to.....be me. And being me, meant.....being human and embracing everything I hated about myself, and everything I've been ashamed of about myself, instead of trying to run from it or make myself appear different....just to get love.

 But, being human is the hardest thing as I am finding out today, as it's like jumping off the cliff with your eyes closed and trusting that it's safe to dive into that unknown (the vast ocean of the body) while trusting at the same time, that it's safe to let go of the comfort of the top of the cliff (the mind and the story of who I believed I was). I'm only just beginning to learn how to be human, which I'll explain next.

Part two of this blog post to come.

Thank you for reading.

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