God-Shaped Hole
We are sitting in the car trying to figure out how to get the smoothies we just ordered by phone OUT from inside the cafe INTO our hands. Neither of us can walk. Both of us use wheelchairs and we are on a busy street and all the disabled parking spots are taken. No handicap spots means there isn’t enough space to safely get a wheelchair out of the and even if you do … you’ll be met with a wheelie’s arch nemesis … curbs.
Earlier when considering lunch options, in an attempt to avoid this exact scenario, I suggested finding a place with a drive-thru. As two individuals in wheelchairs a drive-thru is the easiest choice if you don’t want to face potential barriers to access … and … you know … having to carry multiple drinks on your lap as you navigate those potential barriers.
He doesn’t want to trade nutritional value and flavor for ease just because there might be no parking and curbs.
Basically, he’s braver than I am.
We get to the smoothie place and indeed there is no accessible parking and lots of ninety-degree angles (a.k.a barriers to entry). We call the store and there is only one employee inside so she cannot leave the store to bring our order out to us.
We pause to troubleshoot (an ever present thing you eventually get used to on the adventure of being disabled - hey! At least we are creative). He sees a woman on the sidewalk walking by and decides he’s going to call her over and see if she will help.
Im mortified.
My nervous system doesn’t see other humans as an extension of itself. Instead I experience myself as an isolated island that grew up internalizing that my self and my needs were a burden upon existence. My body carries the message that needing help is a stressful and dangerous experience. If you’ve met me in life beyond the screens you know that I can be incredibly warm and open but also paradoxically very walled off and fiercely independent. My original software wasn’t built to connect, it was first programmed to protect and survive.
If I had been alone I probably would have called an Uber delivery to meet me somewhere before asking a stranger on the street for help.
The woman walks over to the vehicle after he gets her attention and he explains that we are two paraplegics (I know, I’m aware… this sounds like the beginning of a bad joke) and need help getting our order. Would she mind being of assistance? With zero hesitation she turns towards the cafe, disappears inside and then quickly reappears with our order. She brings it to the passenger side of the vehicle, where I am sitting. As we begin gushing gratitude she looks me directly in the eye, and calmly responds with, “I enjoy being human”. Smiles. And walks away - leaving only an afterglow of understanding.
Immediately my gut tightens as I realize my heart is about to be made anew with a different relationship to the world. I’m simultaneously experiencing intense joy and fear. Joy as I recognize what is on the other side of the walls I have built around myself, but fear as I begin to see all the internal barriers I’ll have to work through and soften to allow this transformation to happen within my being; the tolerance and trust I would have to develop in placing my safety outside of myself.
In that moment my gut also knows I had just experienced something very important.
Later that day we are at dinner. It’s a nice Florida evening, a rare combination of perfect temperatures with low humidity, so we are sitting outside on the patio. I’m explaining a tattoo I got years ago, when I was a young adult. I got it after reading a novel called, God-Shaped Hole by Tiffanie DeBartolo. In the novel the author states -
“Everyone feels that void. Everyone who has the balls to look inside themselves, anyway. It’s what life’s all about … A search.”
At the time this rang deeply true for me, perhaps as the pervading quality that made up the entire felt experience of life for me. A search for something I could connect with. I decided to honor that tugging on my spirit with some ink. I got the tattoo in the middle of my upper back. A puzzle piece with the outline of a heart. Part of the heart lay within the puzzle piece and part of it outside the piece. The heart that remained outside of the piece was intentionally left unfinished, its outline drawn in dashed lines. I told myself that one day when I understood what exactly it was I was searching for I would finish the tattoo.
I’d spend the rest of my life caught in the gravitational pull of this search.
As a kid and teenager I was vehemently atheist. Science and the material realms were the only foundations worthy of building belief upon. Then one day I read a book called The Quantum and The Lotus. It featured an ongoing conversation between Matthieu Ricardo (previously trained as a molecular biologist then turned buddhist monk) and Trinh Thuan (born into a buddhist family who went on to become an astrophysicist). At one point in the book the discussion turns towards Quantum Entanglement. This is a phenomenon where particles become so inextricably linked that whatever happens to one instantly impacts the state of the other, no matter how far apart they are.
NO MATTER HOW FAR APART THEY ARE.
My mind was blown open at this concept. In that moment … although I wasn’t ready to claim a belief in “God”, I was certainly ready to admit maybe reality didn’t work the way I thought it did. This was enough to crack the door open to curiosity in this whole “bible” book everyone was on about. I was also dating a very Christian dude at the time … so … that certainly helped.
I began to study The Good Book. Deeply and obsessively. I bought study versions of the Bible that included lengthy footnotes breaking down the historical context of each passage and the etymology behind the specific words chosen. I read scholarly commentaries on the evidence for and against the existence of a Jesus of Nazareth. I really had to build a foundation for myself to make myself comfortable with this whole “church” thing. And I still didn’t “believe in God”. I was just … ya know … wanting to be open to being convinced.
Exploring my options some would say.
During my studies I really took the whole concept from Matthew 7:21 to heart. In which Jesus says that merely calling him “Lord” is insufficient if there is no genuine, relationship.
“Not everyone who says to me, ‘Lord, Lord,’ will enter the kingdom of heaven, but only the one who does the will of my Father who is in heaven.”
I took this to mean trying to actually BE transformed by and live in a Christ like way. To LIVE the spirit of the gospel. Not just to blindly believe and accept salvation. I have to admit … I still live by and believe in the example and message of Jesus. However … what I saw happening in the church did not seem to align with this message. So. I left.
This began my foray into the spiritual realms. Trying to answer the call of this “search”. In Christianity, as a religion, I had found a transformative teacher and I understood taking refuge in these teachings, but at that time and in that place I did not find “God”.
My search led me further and further inwards as a certain flavor of discontent always nagged at my being. As a child I only found safety and solace in my own inner world, so diving further into this inner space only felt natural. You could say, as a kid, my inner world was vibrant and alive, as long as it stayed hidden from others… but when it came to expressing myself in the external world, I was completely locked away. Due to this inward facing proclivity I binged material on psychology and the human mind. I eventually learned about neuroplasticity and realized I had to at least try to work on changing this baseline state of discontent. I studied and practiced various types of meditation and subconscious work. The more I quieted my mind, the more realms opened up to me. Within this inner temple I found Love and also truly realized I could never possibly be alone, as a biological being, in an organic world … OF COURSE I am deeply connected, and always communicating with the world around me.
But I did not find something I could unequivocally call “God”.
So here I was - at dinner describing this god shaped hole and my tattoo to my new friend and how its placement felt ironic to me in a way. The accident that left my body paralyzed burst my thoracic vertebra at T3-T4, following which I got an emergency spinal fusion from T2-T6. The tattoo was right over the area of the fractured bones and I now have a long surgical scar traveling through the middle of the tattoo.
I tell my friend that I find it interesting … it seems poignant … that in some weird way my accident relates to whatever it is I’ve been seeking.
When I finish my story I realize I need to go to the bathroom. With my degree of paralysis I can’t exactly control my bladder if it gets too full … To mitigate this I just try to take care of my bladder BEFORE this happens. Some women who have had children will be able to commiserate with this. When I leave the patio to get to the bathroom I realize I’m going to have to wheel up a very steep, very long ramp, at the end of which is a heavy door.
…You try swinging a heavy door towards you while balancing on wheels on a steep incline with a full bladder you can’t control and tell me how that works out for you…
I look at the obstacles I’m about to have to navigate and just hope I’m not returning to the table on a wet seat cushion. I’m with another paraplegic, so as tragically embarrassing as that might be for an able bodied person that hasn’t had to come to terms yet with the fragility of the human body … eh … not the worst thing that could happen.
But sometimes a lady just wants to finish a dinner without pissing herself.
Lawd.
I exhale deeply and grip the wooden railings of the ramp, immediately realizing the amount of strain its going to take to get to the top. As soon as I begin trying to gain momentum for my first push the back door of the restaurant behind me swings open. A vertical sliver of artificial light slices open the night and then I’m making eye contact with the cook that has opened the door. As soon as we make eye contact, without hesitation he asks if I need a push.
“Oh my god. Bless you, yes please I would love that”.
He pushes me up the ramp, opens the door that leads to the bathroom inside and with no drama, saying nothing actually … quickly disappears back to whatever he was doing prior to helping me. I didn’t have to worry about the ramp. Or the heavy door at the top. OR pissing myself.
As I washed up in the bathroom, all of a sudden I have this full knowing descend over my body. THATS what God is. THATS what has been missing. My connection to the OUTER world. I immediately broke down in tears as the truth of this rang through my body.
All those years I had spent spiraling inward to find my Self were necessary … but as the spiritual path goes … when I was finally at a point in my life where I had found that inner core that I desired to express outwardly … my life circumstances fell apart in a way in which I HAVE to fix the wounds preventing me from spiraling back OUT again.
Now that I’m paralyzed - other humans ARE my freedom. My ability to travel safely and freely around the world depends on them. No matter how independent I am as a paraplegic I can no longer have a wall between me and other humans. I would be severely limiting myself if I insisted on doing everything myself and the more I refused to see asking for help as an option the more fear I would carry in my heart.
The more this wall collapsed..
the more freedom I had.
Not long after this dinner I attended a ceremony at my church. I was sharing this experience with a dear friend of mine and how I had recently been trying to integrate God as the relationship between … more so than this “concept” we can understand or that can be ultimately understood in one ecstatic moment … but instead is something lived in relationship. Not with any one person, but with all living beings.
He smiled and told me about a book he was currently reading - I and Thou, by Martin Buber, about this very concept. Before the retreat ended he gifted me a copy of this book. In this book is something described as a reciprocal offering where God and man act as partners in the ongoing creation of the world. That humans, by meeting the world with the fullness of being, meet God.
That the only acceptable sacrifice is a broken and contrite heart. I know that sounds deeply uncomfortable at first … but … how can we meet the fullness of our being until we fully meet the brokenness that hides the fullness from our sight?
I do not like this injury. It sucks. The way my body feels and the adaptations I have to bring into almost every second of the day require an amount of patience and humor I don’t always have the bandwidth for.
But I will say … the way my heart is being forced to transform is a gift. Not one I would have asked for … but … here we are. Prior to this moment I had already experienced how I was slowly becoming free of a lot of identities humans cling to. My social value dropped off the face of the earth when I lost the ability to stand. This entire Substack has been dedicated to detailing those many identity deaths as I experienced them, so I won’t go into that here. But … previously I have also mentioned some of the spiritual freedoms I have gained with the loss of much of my physical experience. Here I am, yet again, suddenly realizing yet another new landscape filling out that I previously didn’t have access to.
The landscape of feeling secure within human connection. That only in my brokenness I could even begin to see.
A few months after my outings described earlier took place … I was at another dinner with three family members. They were each discussing loneliness. Loneliness in their own lives and the pervasive loneliness found throughout our culture today. The life drained out of them and the air felt heavy as they talked about this. I suddenly realized the horrible gift of my unique situation … I didn’t feel this loneliness they speak of at all anymore. On one level … I have a deep connection with myself … and within that connection I’ve naturally experienced SOME of the many subtle ways we are connected with life that goes beyond what is visible to the human eye (the bounds of this I’m sure are endless to explore and endeavor to distract me for a lifetime). And on another level I’m being forced to open up to my own humanness and what it means to BELONG to the extended family of humanity in my full humanness. (I know … thats a lot of HUMAN … do you get it yet?)
Cue the song “All of My Days” by Alex Murdoch - “Now I see clearly / It’s you I’m looking for / All of my days / Soon I’ll smile / I know I’ll feel this loneliness no more”.
That all being said… I know plenty of disabled people who also still feel incredibly alone and disconnected from the world.
I’m not suggesting that going out and getting your spirit broken and your body mangled is some guaranteed path to any answers you may be seeking.
I’m just detailing my particular path of experience.
I don’t have the answer for the loneliness epidemic. But I do suspect that a good place to start looking …for a great many things … begins with quieting down enough … slowing down enough … to see the fractures that lie within ourselves and between us and the world. And beginning the process of allowing wholeness to be experienced again.
Truly we don’t actually have to search beyond ourselves or the very moment we find ourselves in.
“Once upon a time, tells the Brahmana of the hundred paths, gods and demons were at strife. The demons said: “To whom can we bring our offerings?” They set them all in their own mouths. But the gods set the gifts in one another’s mouths. Then Prajapati, the primal spirit, gave himself to the gods.” I and Thou - Martin Buber



Absolutely brilliant, more than merely human, and beautiful...
Hi Amber! SO deeply moving and powerful. Thank you for the power that is in your heart. And also here is to more curbless, 0-entry architecture and landscapes!