In 2008, I develop a chronic and serious medical condition that is not properly diagnosed for the next six years. It is an intestinal condition and here is the thing I learn about such conditions: there is a lot of stigma around them and it is almost taboo to speak about it. So it has taken me over a year to decide to post this.
I am tested for Crohn’s, IBS, a whole gamut of scary conditions—but never, oddly, for the one condition I end up learning I have. I wonder if my problem has anything to do with my diet, so I give up dairy, gluten, and nuts and seeds. None of this works either, and is instead quite the hassle to deal with in daily living as I am exhausted, not absorbing any food I am eating, and scheduling my life around my illness.
Besides the physical illness, however, there is an even stealthier nightmare to contend with: the nightmare of secrecy, shame, self-blame, self-disgust, and isolation. At the same time that I want an accurate diagnosis, I also live in constant fear of its discovery. I believe that if anyone finds out, it will be proof that I must be replaceable and unloved. Sometimes I wish I could never see anyone again. I feel like I am living someone else’s life. I have certainly checked out of the one I’ve been given, but like the lyric in Hotel California, “you can check out any time you like but you can’t ever leave.” I have already made up my mind a while back that “leaving,” which would mean complete apathy or death, is no option for me. I just wish I could be a whole person again.
It takes until March of 2013 to get a proper diagnosis, after which I am immediately referred to a surgeon. I find I am mortified and relieved to finally be taken seriously and have an explanation for the terror and pain. I can finally name my nightmare that has taken over my life, its truth borne silently and in hushed horror. And as I come to accept both that I will not have to endure this forever, and that surgery is my only option, as I work hard to heal my shattered spirit, I begin slowly to surrender to what is. Very slowly.
It has been extremely difficult to prepare for surgery: all the ins and outs of care I need during the hospital stay and then again almost constantly for the three weeks following, the lining up of friends and family, social workers, and dealing with bureaucracy has been almost too much to handle. During all this, four people from the otherworld keep appearing together around my living room. Quietly, with no expectations of their own, they lend me support with silent presence, and it is strangely validating, this vigil of acknowledgement and how they do not judge me for not being whole, or well, and don’t look away. They wear homemade wool outfits, are extremely tall, and carry swords and shields with swirly ray patterns on them, so I can’t tell precisely if I am seeing the symbol for sun or water, or both at once. They look solemn and serious. They rarely move. They have yet to speak to me. That hardly matters. In the other world, whole conversations can occur without words.
I don’t know their names or why they are here, I mean why they are bothering to hang out with me, but I am not ever surprised to see them, it is kind of like arriving home from a long day and finding your family there— ordinary joyous contentment, belonging. I am also way too exhausted and ill to ask questions or even be particularly polite, but they don’t seem bothered by that. I simply except, gratefully, that they are here, as I go about making countless phone calls, and work out my manifest world recovery team who will have to spend three to six weeks assisting me while I don’t have a guide dog. The surgeons don’t want him with me while there’s a chance he could pull on me or cause me to fall.
Now, six months after my referral to a surgeon, around August 20th, I am attending another appointment for a second opinion. I am prepared to take as much control of the situation and my health as possible. I have literally twenty-five questions on my Braille computer ready to ask, thoroughly researched. I’m leaving no stone unturned.
I look around the room and find all four of my otherworld people are here. When our eyes meet, their eyes are kind, with a somber calm within them. I marvel at how they can see into the truth of things, but don’t evaluate what they see. This in and of itself is a gift to me. When I think there is no way I could possibly be safe, I look at my otherworld people and they help to ground me in myself, in a gaze that simply accepts what is.
When the surgeon walks in, I think, well okay, this surgeon dude tries messing with me, he’s going to be really sorry he does. That thought makes me smile despite the circumstances. These four people from the otherworld are formidable looking indeed. They certainly command anyone’s respect, and I surmise, would most likely instill fear in anyone who got on the wrong side of them. The surgeon, I notice, is effectively surrounded. I am relieved and for the first time ever while in a doctor’s office, I feel safe.
Fortunately, the surgeon is thoughtful and respectful, and doesn’t hold limiting stereotypical views about people with disabilities. He answers my questions thoroughly and to the extent it is humanly possible, puts me at ease. I am so young and otherwise healthy that he is confident the surgery will be a success. He corrects my misinformation and this in and of itself silences many of my fears. Meanwhile, my otherworld people keep their vigil around the room, holding space for me, keeping me centered, their presence silently challenging my belief that until I am well I am not valuable to anyone. I cannot seriously have this thought and look into their eyes at the same time, and so unless I need to be looking elsewhere, I never look away from them.
I arrive at the hospital on September 17th. Trembling violently from cold and nerves, I enter the unusually frigid operating room. This is when I realize I have a choice: resist or surrender. Up until this point, I believe that surrendering means giving up the deepest part of me. It is my dignity and respect which needs fighting for, and it is this dignity that the surgery and the hospital stay, with its inevitability of rendering me profoundly dependent on others, surely threatens and compromises. But suddenly my need to heal overrides my desire to continue with my defenses. The anesthesiologist begins to read the affirmations I have written up for her to say while I go under, each to be repeated three times. “You are whole, safe, and secure,” she says soothingly. “You are whole, safe and secure.”
I let go, completely, and by the time she repeats the affirmation a third time, I’ve lost consciousness. When I awake, I know I am well. I still need to recover, but my body feels like mine again. My first words are, “I’m so happy!” I realize surprisingly that at the moment I am not in any pain at all, despite just having gone through an intense major procedure. But that is not the only gift I receive from this experience. I know that my choice to surrender is the greatest gift I could ever imagine: I come home to myself. I do not lose myself, but find it again. I find peace, and this peace stays with me wherever I am.
I spend six days in hospital. I do recover well, but there is still all that uncomfortable and gnarly stuff that comes with having major surgery. Incredibly, amazingly, my other world people stay with me the whole time, regardless. They hold space for me, and protect me so all I have to do is heal. I don’t need to see them. I can feel the light that surrounds me, and it is like being a child who finally experiences what it is like to be held.
It is only after six weeks of recovery (after which I can eat whatever I want!) that I see my four otherworld people vividly, in front of me, like I normally do. And when I do, it finally occurs to me to ask who they are. When they tell me, my rational brain goes on strike until further notice and I am caught in between impossible and possible, acceptable and unnervingly unacceptable reality.
I spend the first week in a bit of stunned denial, and ask them at least twice a day to come again with who they are. Occasionally I worry that I am engaging in the most outlandishly creative act of imagination ever conceived. Have I lost it? But no, somehow I know I am probably not making this up at all, and the adage ‘truth is stranger than fiction’ would absolutely apply and I’d be incapable of dreaming all this even if I tried. Also I am definitely not dreaming. Also, I have been too busy preparing for and then recovering from surgery to try. Also, if these really are the people they say they are, I absolutely have to believe them.
Still, I am having trouble accepting this reality. Moments strike me at random in which I am confronted with trying to come to terms with what is going on. Why would these four people, who I don’t even know, choose to spend days with me in which I can barely get out of bed, am often in pain, and need help doing almost everything under the sun? How can they see the state I’m in and not judge me? Why is it that, though they never look away, I feel peacefully, utterly safe? I am beyond grateful. But why? Why do this for me?
But when I do ask Caoilte about it, ask why, why would he and his sons Faolán and Colla, and his cousin Oisín, be so unconditionally here for me, he simply replies, “Why not?”
It’s a response that effectively separates itself from any line of argument to the contrary. It causes me to think seriously about the negative view of myself that I hold and always have taken for granted. I know that if I were given a reason why, I’d try my best to come up with why I still did not deserve it. But there is no reason. I am given instead an invitation to accept what is. It takes some time, but acceptance does come. I accept despite my culture’s aversion to spiritual experiences that make no sense, I accept though this leaves me in profound humility, gratitude, and wonder. And I am forced to confront my incredulity that I could ever be worth doing such a thing for, ask myself whether I have been wrong my whole life about lacking value unless I am exceptional or perfect, whether, regardless of my blindness or health or illness or strengths or weaknesses I might just be enough. Really? And why? But as I will come to find out, there are many preconceptions of myself and the world that I’ll be turning on their head, reevaluating, and growing from, letting go into awe and gratitude and wonder, coming home.
a href=”https://thesoundofwhathappens.wordpress.com/2014/12/02/the-antlered-branch-_-when-two-worlds-meet-part-13/” title=”The Antlered Branch _ When Two Worlds Meet: Part 13″/