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My intention in writing this blog has been to (hopefully, if even on the most micro of levels) help shift the ohhh-so-often all consuming lens of fear and despair that most people with these ‘dis-eases’ are seeing and moving through life within. If I can be the tiniest seed of inspiration, or catalyze the tiniest shift in the way someone might be experiencing the absolute absurdity and terror that comes along with suffering from ‘this’, that is really all I could hope for. In all honesty, I have been hesitant to write anything since my last blog post. My insatiable will to live and ability to connect with and speak from the part of me that is ALWAYS WHOLE AND COMPLETELY UNTOUCHED, has been (unfortunately) somewhat compromised. The fear, anger, loss and complete break down of my body has sadly been overriding my miraculous transformation that was (and hopefully still is) fueling my ability to connect with the strength and stability beyond any physiological processes… the kind that would usually result in a state of utter hopelessness and dread. Also, trying to process the death of one the dearest people in my life, while getting sicker and trying to figure out survival type issues has been quite difficult. (not to mention, feeling like I owe it to Heather, to not give up.. EVER)

I am hanging on with everything I have to the idea that these “doubtful moments” are all part of the process, that I have indeed not lost the strength and will to get through this (perhaps even ‘thrive’ through this) just because I have had one hell of a week filled with moments where I felt like ‘I can’t go on, period’.

I have been writing this blog for almost two months now with the genuine belief that there is hope, not only to get better physically, but hope that I (we) can experience and walk through ‘this’ without being consumed or guided solely by the fear and panic that is inextricably associated with these illnesses. At times I feel that my ‘purpose’ in life may very well be to transform my relationship with how I experience ‘this’ and to also explore the possibilities that exist around healing-creating new paths of recovery that some may deem ‘impossible’.

The truth is:

As I am writing this, I literally feel and see this little itty being deep inside of me that is so desperate to communicate some semblance of clarity, this being that so badly wants to express this experience without it being muddled by the 3 foot layer of solid muck: headachy-toxic-brainfoggy-terror ridden-short circuited-energy depleted-painful painful –VIBRATING lead body- running out of life force- MUCK…. As I write this, I am crying because I know: I AM STILL IN HERE! I can feel that part of me that is so vibrant and so clear, and it devastates me (all too often) because it feels so far away, out of reach… like a distant ghost. However, I refuse to give up on myself, I can not let these physiological and external factors rob my spirit of its truth and vitality, yet at the same time, it is incredibly exhausting giving every bit of my ‘tiny reserve of energy’ attempting to stay in contact with what’s left of ME.

This whole concept of ‘ME now’ is something I am continuously learning to come into acceptance with. Every day I am having to let go of aspects of the old ME: The girl who could beat ALL the boys in every sport (or game) usually dominated by ‘the males’ ME: The quick witted-class clown who easily entertained entire rooms of people. ME: The girl who painted in 20-hour increments, only stopping (maybe) once or twice to pee. ME: The girl who read books like ‘a tour of the calculus’ for fun. Me: The athlete Me: The piano whiz Me: The chess master Me: The social butterfly ME: the poker shark Me: The gifted Me: The CAPABLE. ME: The girl who could do anything she put her mind to.

However, I feel it’s important to mention: There was a whole other side of Me’s that seemed inextricably connected to all of my ‘gifts’ (that are currently jeopardized from this dis-ease), Me’s that sabotaged any joy or contentment that may have come from having such qualities to begin with. I may have been (unknowingly) extremely capable, intelligent and unrelenting (and obsessive) in my pursuits to become masterful, but in all honesty, I was terribly uncomfortable inside my own skin, had no idea how gifted I was, and did ANYTHING AND EVERYTHING TO ESCAPE.

ME: The girl who starved herself in attempts to quiet EVERYTHING. Me: The girl who NEVER felt she was good enough, pretty enough, capable enough or worthy enough. ME: The girl who was TERRIFIED of her own mind. ME: the girl who from a very young age had the deepest gut feeling that something was terribly wrong with her ME: The girl who was TOO MUCH Me: The girl who never felt seen ME: the drug addict ME: The out of control RAGE Me: The Shame ME: crazy ME: not okay, not okay, never okay.

Luckily (before I got sick) I had already been in the process of doing deep emotional/trauma recovery work and letting go of the many aspects of myself that I so desperately clung to. Maybe that made for a little bit of a softer blow, as one by one, so many of the things I thought made up ‘who I am’, so many of the things I loved to do- all my passions- were slowly stripped away.

I think I can speak for everyone when I say illness is not an easy teacher, and chronic invisible illness reaches something on a whole other level. In all honesty I truly believe that people enduring these illnesses are a special breed, and the gifts gleamed from the (what I believe to be) hardest imaginable lessons are as equally precious as they are gruesome. Sometimes I wonder, why the hell do my lessons have to be SO EXTREME!? Is there any other way I can learn to connect to the deepest part of myself? Is there another way to shed the parts of me that are not serving my highest good? Another way to be humbled to the bones? Another way to gain profound insight and compassion? Another way to SLOW DOWN, learn to love and take care of myself with all of my being?

Is there any other way for radical or continual growth without having to be in a crisis situation!?

I certainly hope so, and by golly I am holding onto the possibility that I no longer need to be in crisis situations to experience and know what is REALLY important in life. I am holding the possibility that all patterns and themes that seem to pop up in our lives OVER and OVER again can absolutely be worked with and even disintegrated. I am holding the possibility that I can transfer all of this ‘growth through crisis’ karma or whateverthehell it is into helping others and continue to grow while living a peaceful, simple life.

Yes, I may have lost the ability to do a lot of the things I loved.. I may have to live a pretty radical isolated lifestyle (hopefully just temporarily).. I may never be as quick or as gifted as I once was… and sometimes (often) I can’t believe the horrendous state of my health and the fact that I have to go through this without the support of medical professionals or family.. Some days this absolutely boggles my mind, and some days I feel a rage and sadness so deep building up inside of me… and I have no clue how to see a silver lining, or how I could possibly express this without my physical body collapsing.

AND, with all of this being true:

If I had a choice to live the life I was living, without ever getting sick… or live the life I have now with all its challenges and gifts.. I would, without any hesitation, not change a thing.

Because of this experience: I love myself on a level that I could not have fathomed was possible. I am learning how to work with a lifetime (even before I was sick) pattern of fear that completely ruled my entire life. I get the opportunity to know myself far beyond hobbies, habits and potentials. I get to experience a very special and deep kind of compassion that only comes from extreme hardship of living with chronic illness. I am learning to trust in people and in the universe in a way I never thought was possible. I am learning to trust myself, my strength, my voice, my capabilities, my power and my ability to heal myself and help others. I am learning to walk through the storm while keeping my center, which may just be the most valuable lesson for all of human kind.

Since leaving my house and all my possessions to move outside and attempt mold avoidance.. I have been met with nothing other than radical love, compassion and support. Even if I do not get better at all on a physical level from engaging in such extreme pursuits.. the love and support I have received (and continue to receive) on this journey is worth more than anything I could put a value on. The lesson I continue to learn throughout all of this: PEOPLE ARE GOOD!!!! And even though support may not be coming in all the ways I want, and from all the people I want if from… it is coming, it keeps coming, and I am incredibly grateful. Every one of you who reads my blog is supporting me in a way that you can’t imagine.. Every one of you who reaches out, messages me or comments about what I am writing, touches my heart in ways I cannot express.

I want to thank you all from the bottom of my heart. I could not do this without you.

With love,


llbeanad Livin the dream 🙂