“It’s really about humility…”

10/26/24: writing in bed. it’s 11:36 pm. robert just asked if he could call me. :) man, do i miss him.

i came home from treatment yesterday feeling utterly exhausted. i took a nap around 3 pm and didn’t wake up until 8 am the next day. clearly, my body desperately needed rest. i am very grateful it is the weekend. it’s nice to have some time off treatment to recuperate and focus on my soul rather than my body (although me being me, i am always trying to do both).

today was a beautiful day. i woke up feeling a tad more rejuvenated than normal. most days upon waking, i feel completely worn out and depleted. i haven’t woken up feeling anywhere near well-rested once since this all began two years ago. the nonstop debilitating fatigue (this word seems to barely scratch the surface) has been my most persistent symptom and has prevented me from being able to fully participate in life. i walk through each day feeling like i’m a few breaths away from death. suffice to say that waking up today feeling a little bit better than usual was a wonderful blessing. it must have been all that rest. oftentimes, rest is the most productive thing we can do for ourselves.

i am deeply struggling, but can taste the freedom waiting for me on the other side of this treatment. i just have to keep pushing through, no matter what it takes.

it’s sad to say, but it’s honestly hard for me to remember what it feels like to live inside a healthy body anymore. i can only imagine and pull from old memories. for a long while, i have felt trapped by the very vessel that sustains my being. my body feels like my prison. i often wish could just drop my body (and the unremitting pain along with it). still, it truly amazes me beyond comprehension how long and hard my body has fought for a second chance at life. for over a year, i wasn’t sure i would wake the next morning… honestly, the discomfort was so intolerable that i was often more afraid of waking up than not… but my body held out. it did not give up.

that meant i could not quit either.

sometimes, it bothers me that i will never be able to explain in words what i have experienced these past few years… that no one besides myself and G*d will ever understand what i’ve endured… but isn’t that all of Life?

i will never be able to truly understand what you are battling, and you will never really be able to understand what i am facing. yet, we are deeply connected by the universal experience of pain. once you have known true suffering, you know all suffering… and you also know the scope and boundless power of Love. suffering, when overcome, fosters empathy and wisdom unlike anything else. ram dass calls it “spiritual sandpaper.” everything is your guru if you allow it to be.

anyways, my mother and i met up with our lovely friend gail to go check out an ocean-side art market downtown this morning — there were over 100 different vendors selling art, food, body care products, doggie treats, etc.

if you know me, you know markets are hands down my favorite public place to hang out at. i simply adore seeing people’s unique creativity come to life in their own quirky and idiosyncratic ways. i always wonder what in life led each person to their specific art form. whatever it was, i sure am glad it happened, because it ultimately connected them with their soul’s passion... and now, i get to witness it come to life!

it’s so wonderful to see all of the different people putting their differences aside and gathering together in the name of supporting these local creators. someday, i hope to travel with my art to markets and festivals selling poetry, paintings, holistic concoctions, and all sorts of other passion projects.

i also love people-watching. markets always bring in such an eclectic group of human beings. plus, how can someone be upset when every third step they take, they see a new baby or a puppy? live music never upsets either.

we strolled around and checked out all of the tents together, with all of the usual friendly remarks that are secretly messages of affection to one another: “this reminds me of you!” “your daughter would love this!” “you would look beautiful in this top!” “that is cute, but not $65 cute.”

there are many ways to say “i love you.”

i stopped in my tracks at a small tent filled with hand-knitted and crocheted tops and skirts. they were beautiful, although a little risque. they were the type of tanks you’d wear over a bra to a festival. the skirts almost looked like they could be worn for belly-dancing. it felt empowering and sensual, and called out to my inner wild woman. my eyes gravitated toward a sky blue top. before i could say a word, it was being tied around my neck and chest. i heard gail whisper “you have to get that for her,” to my mom, and i smiled. honestly, i could go with or without the actual shirt. i’ve never been one to dote over the materialistic things in life. it’s the sentiment and thoughtful comment in the first place that filled my heart with joy. again, there are many ways to say “i love you.”

my mom bought the top for me. gail and her both insisted i wear it on a date with robert with giddy grins plastered across their faces. oh, how i love girlhood. there’s nothing in the world quite like it. it’s something that i have dearly missed these past two years while i was living in such isolation.

once we had our fair share of the market, we walked over to a cute restaurant, sat on the outdoor pati0, enjoyed a nourishing meal (it was a miracle we found a place we could all eat with our crazy restrictive diets!), and chatted for hours. the sunlight illuminated our table, kissing us in a soft glow that whispered promiss of a better future.

gail truly is a one-of-a-kind human being. she has a heart of gold and a powerful strength about her. there are so many adjectives i could use to describe her, and still, they would all fall short. she’s motivated, compassionate, nurturing, creative, and badass… not to mention freaking hilarious. she has that “i’m going to cross the line and you’re going to deal with it” type of humor that i absolutely love. this woman has made my mom and i belly laugh more times than i can count. i love a person who can traverse beyond “controversial” barriers and the fear of judgment, and laugh while doing it.

one of the things i love most about gail is her unconditional love for her daughter maggie. the pride and awe in her eyes while talking about all of her attributes and accomplishments in life is enough to make any heart melt. gail and maggie are tight. they have the kind of mother-daughter relationship every girl dreams of. maggie can tell gail anything. one time, gail even told me a story about the two of them taking edibles together. hearing about their connection and spending so much time with my mom is making me so excited to (hopefully) have a daughter of my own someday in the far future. i vow to shower her in all of the love that i never received.

it simply wouldn’t be right to move on without mentioning gail’s god-given talent of writing. she is the very woman who inspired me to finally find the courage to create and publish this blog in the first place. gail’s writing is (i almost don’t even want to try and describe it because anything i say will only belittle her gift, but i will attempt so you can at least have a generalized idea) deeply moving and inspiring. her strong spirit shines through in every word. she has a way of convincing one to see and believe in GOOD again. she paints vivid pictures that come to life and makes those in her world feel so embraced, seen, and loved exactly as they are. the lens through which she looks out at existence is stunning. she effortlessly captures and emphasizes the majesty of existence and human connection. i would love to live inside her head for a day. i bet there is never a dull moment.

i encourage you to go and check her work out yourself. :) i haven’t been so inspired and energized by another person in a long while. she lights up every room she walks into. https://gailmbillman.com/

anyways, once we all agreed that we had been hogging our waiter’s table for too long, we walked gail back to her duplex and split ways. my mother and i headed back to our condo on the water. it was so nice to have another “normal” day and to share laughter and conversation with such a wonderful woman… and to be able to get out of the condo at all. most days, i am too ill and exhausted to do anything.

my mom and i left with our cups overflowing. i had forgotten how fulfilling friendship alone is. i crave that deep sisterhood bond after being ostracized for so long. the only consistent people in my life have been my boyfriend and immediate family members.

on the way back to our temporary '“home,” i received some difficult news from two separate friends of mine. i nervously called one of them to check in and lend a listening ear. i wasn’t sure how anything i could possibly say or do would in any way help her situation… but i knew i had to try.

we talked quite a bit and both hung up the phone with immense clarity. i wanted to note a few things we spoke about because they were so profoundly poignant and i want to ensure i remember them.

she kept reiterating that she was always here for me as a safe place to land and a nonjudgmental listening ear. she was basically asking me to open up to her more often. i explained that i have some issues being able to open my heart up to friends these days.

after i got sick, so many relationships i had faded away, which was extremely hard on my heart. i naively thought that during hardship, those friendships and family bonds would strengthen. i hold no bitterness and resentment toward anyone and understand that nothing was personal. most people simply didn’t know the depth of what i was going through or were simply trying to survive through their own hardships, and to be fair, i didn’t have the energy to reach out to them and explain.

ultimately, i knew that i had everything i needed and more within me and that i couldn’t rely on others to get me out of this mess… but i desperately needed a support system to lean on. i was so viciously lonely. i had to learn to do everything on my own. i became my own advocate. i knew no one was coming to save me, so i studied biochemistry to try and better understand and find potential healing paths for my condition while being bed-bound and hardly able to lift my head from the pillow, let alone read at all. i learned that the only true support system i had was myself… and as a result, i was left struggling with trust issues. i have been afraid to open my heart back up to human connection for the fear of feeling deserted again, especially by family and other females. i have lost a lot of friends throughout all of this.

honestly, i also felt “unloveable,” or perhaps “unworthy of love” in my sick and burdened position. i was a ticking time bomb, ready to erupt with sadness and grief at any moment… and i didn’t want anyone i loved to be hit with my emotional shrapnel. i was simply carrying too much. so, my defense mechanism became pushing people away before they could abandon or be hurt by me, and isolating whenever i was deeply upset or afraid. i thought that if anyone saw me in that state, they couldn’t love me. i felt somehow deficient or not enough. i thought i was bound to be judged and criticized in such a “weakened” position. my ego wanted to protect its idealized image of self.

while explaining all of this, my friend stopped me and said something like, “i hope you don’t take this the wrong way… but whenever i feel in crisis and start withdrawing from the world, i have to find a certain level of humility to be able to open up and be vulnerable with my friends. you have to be willing to be humble to let someone see you in such raw darkness… to admit that you need help. it’s really about humility.”

when she said this, something in me immediately clicked and shifted. “holy shit… it’s actually selfish to deprive my support system of seeing me in such a vulnerable human state,” i thought aloud, “thank you so much for saying it how it is… i desperately needed to hear this… it’s actually a gift in a way to open up to my loved ones about my struggles. it provides a chance for deeper connection.”

“exactly! your loved ones WANT to love you! your support system wants to support you! it’s up to you to let them do those things! you don’t have to go down your contact list and vent to everyone… just choose a few trusted people and reach out when needed.”

without total vulnerability, a relationship cannot be authentic.

genuine friendship isn’t about hiding flaws and sharing only the best moments; it’s about experiencing and talking through all of life’s highs and lows together. it’s about finding the courage to admit our imperfections and frustrations with life, as well as celebrating our little wins and joys. it’s about convincing each other to believe in GOOD again (just like gail does with her writing), while acknowledging the bad. as long as i am wearing a mask and playing pretend in any relationship, i am selfishly withholding a piece of my heart in an effort to protect myself from nonexistent threats. i am not 100% invested. i am constantly on my toes, waiting to pull out and run away at the first sign of potential heartbreak. that is no way to live life. that isn’t living at all.

yet again, it seems i have unconsciously let fear and perfectionism sneak in through the back door of my mind and rule over my thoughts. i thought i was sparing my friends and family by suffering alone all this time… but in truth, i was only hurting them (and myself). self-sacrifice is not love. it is people-pleasing, and people-pleasing is ironically the most selfish behavior one can partake in. it’s all about protecting one’s own self image by swooping down and saving/ gratifying others. actions are coming from a place of self-preservation rather than a genuine desire to help others. it’s not real kindess.

all i know is that every time i have found the courage to really truly entirely open up to someone, i have never regretted it. i always leave the conversation feeling lighter and inspired, knowing that life is indeed worth living. by dropping the facade of being perfect and happy 24/7 and meeting in the heart of life, we are always able to connect on a deeper, more authentic level. both sides leave feeling restored and seen, knowing that such a raw unfiltered conversation was exactly what their soul needed. so, how silly is it that we withhold our struggles and sadness from each other? imagine how much better and stronger we would be if we shared what makes us human. i dare you to be vulnerable, to openly share a fear that you have been keeping to yourself and see what happens. odds are you will inspire the other person to do the same.

how many people have sat next to each other in the same room and could have been soulmates or best friends, or had a piece of advice that could have significantly changed each other’s lives, but never had the opportunity to find out because they were both too afraid to put themselves out there?

The Japanese have a saying that goes “一期一会”. Its English equivalent is along the lines of “One life, one encounter.” It means that one should always treat each experience as a once-in-a-lifetime opportunity, one that should be valued as if it were to never occur again.

what if the only “healing” that needs to occur is the idea that we need to be “healed” in the first place?

what if we were never really broken?

what if we are inherently whole and all we need to do is remember and accept that?

what if miracles are our birthright (and the very nature of existence)?

there is nothing innately wrong with any human being. that is a lie we were brainwashed to believe. our true nature is a reflection of a perfect loving G*d who does not condemn or judge - those, too, are human actions that we project onto a nonhuman being. so much false anthropomor-phism.

The Divine could never hold a grudge against anyone, for we are an all extension of its love. G*d does not need to “forgive” you, because in Truth, there is nothing to be forgiven. the love and the power of the Creator are not only with you, but within you.

you are significant and precious. you are cherished and loved beyond measure by the Creator just as you are… no changes need to be made. in G*d’s eyes, you cannot be anything but perfect… and all else is a lie.

open your arms if you want to receive.

do not hide any parts of your being from this world any longer.

a conversation with roma :)

K: “it would be nice if God could send us down an angel to comfort and tell us what to do when we are lost… but maybe he already does that through allowing us to talk with each other.”

R: “that’s exactly why we need to have the courage to open up to each other!”

K: “you’re right. do you ever think that creation is actually perfect and every moment is a miracle, but we just cannot always sense/tune into it because we are so self-absorbed in our own illusions?”

R: “i think that when i die, God will show me the infinite opportunities i had to experience love and miracles in every moment… and i will be amazed at how many i missed.”

K: “we’ll just be in total disbelief that we didn’t notice what was all around and within everything (including us) quite literally every moment…. the older i get, the more i realize that being connected to Spirit is simply about slowing down and paying attention to Life. i think the art of compassionately noticing what is, is the greatest religion of all.”

remind myself to stop investing belief in the lie that i am broken and to claim back my inherent G*d-given perfection.

read this, but put your name where mine is… :) 

i am resting easy tonight, feeling held by some power greater than me. i’m channeling creativity like never before and loving every moment. it feels like i am being divinely inspired and propelled onward. i am being encouraged to have faith that anything is possible. the miracles that happen everyday along this health journey never cease to amaze me.