This one came out of nowhere. In a way.
And to be honest, I needed this…this “win” as I’ve been referring to it. Because the more I look back on my life the past year, the more it builds that I keep getting kicked in the face…over and over and over and over. Divorce. Job loss. Disease. More disease. Then most recently I find out my son needs surgery for an “undescended testicle”, a relatively minor and common operation, but an operation none the less. Part of the reason for taking care of that situation is to reduce the risk of cancer later in life, and as it seems right now, considering the disease that seems to be intermittently weaving its way through my immediate and extended family, that’s nothing to risk. Still, I can’t help but think, “When does this stop?” Where is “bottom”, knowing full well there is no bottom, no predictable trajectory of success and failure. Our experiences are more separate threads that weave and unravel before us, holding us together at times and letting us fall apart at others. The good with the bad. The wins with the losses. The light in the dark. And for quite some time now it seems like the lights keep shutting off, and yet others only dimly turn on, or at least flicker against the black. I just can’t win.
Then I got an email. On the day of my last infusion.
I’ll spare you the details, but let’s just say it was highly complimentary, risky (not risqué), and abrupt, as if sent with a dose of courage, yet reserved out of sensibility. It was from a stranger of sorts, who I had not met, but was connected to through social media and with whom I had developed a distant, safe, disconnected interest. I mean, let’s be real here. It’s social media. And I have cancer. But she emailed me…and I emailed back a, now admitted, “feeler” email. Hers seemed to express a deeper interest in me, but I didn’t want to read too much, so I sent back a similar response. And then suddenly the emails and texts switched from a trickle to a flood and a more immediate connection was quickly established, turning into late night phone calls and Skype sessions that made the mornings a more difficult, but worthwhile, drudgery. But, it didn’t have to be like this. This was initiated through social media, a less than solid foundation for any sort of deeper relationship, but very quickly we found intense commonality between each other, in our interests, our perspectives, our experiences growing up and now as adults. Much to my surprise, this disconnected form of communication actually established something of a legitimate connection…and….well..the lights turned on. Amidst all the relative darkness, I suddenly had an intense light filling my days.
Finally. Finally I got a damn win. A risky, but more reliable situation that has brightened my days. And let me tell you, for many reasons which I’ll try to clarify, this is huge for me. But to summarize, I needed this win, because right now it seems nothing in my life is reliable. Not my health. Not physical comfort. Not my running. Not my future. Nothing. So much has seem to have been stripped down through this experience and I’ve been trying hard to hold onto what I’ve got, keeping some semblance of my former life, whether that is through running, riding, a part-time job, friendships, etc., but it has never been easy and always feels quite precarious. Amidst all that, I NEVER thought a deeper relationship could develop. I mean, come on, whatever I may have going on as an individual, there is just as much stacked against me, against the practicality of a relationship. For a long period after my surgery, the potential of a relationship didn’t matter and there was a comfort in not having to care about it. I was so destroyed from my surgery that even the idea of being in a relationship was ridiculous and I felt so unattractive to myself that it would have been quite a stretch to imagine someone else being attracted to me. I was basically an unpleasant, physically and emotionally, body lying still, in wait, waiting to rebuild itself back to a functional state. But slowly, very slowly, I did start to build back up and found little bits of my life, physical and emotional falling back into place. Still, the idea of a relationship just seemed ridiculous. Somewhere along the line though, that started to change, and I found myself a bit torn by the realization, that slowly, again very slowly, I was feeling the desire to be in a relationship, as if I was capable of loving again, but found that desire up against the wall of my reality, my periodic and difficult physical deterioration and an incredibly uncertain long-term future. But…there’s no denying that desire was still there, and growing, which caused an emotional conflict I was trying to work through, but struggled to find grounding within. I was left..just….left there. No conclusion to the matter and curious how this would play out in the future, whether I would be able to develop a relationship through this experience or just go my days alone as I often had. To be honest, I can manage either…but I know what I would prefer.
And I got that email. She turned on the lights.
The Notion of Love
I need to clarify something here. I will use the term “love” in this writing, but not out of naivety and ungrounded hopefulness. It’s funny though, how the excitement and newness of a relationship drives us towards these terms, that feel so right, but can often leave us in embarrassment. Our vocabulary is limited. The emotional spectrum seems limitless, with infinite increments along the way, and yet we seem to rely on “like” and “love” to encompass them all, or confusedly use “love” in so many complex manners that it tends to lose meaning and power. And yet to deny the idea leaves us using grade school terminology more suitable for one’s first romantic attempt instead of a deeper expression. We do it all the time. “I love to run”. “I love my cat.” “I loooove coffee.” And yet, they don’t even come close to explaining what we mean when we say we love someone in the context of a growing relationship, but at the same time, it’s not ideal to just throw around the term amidst ones developing, waxing and waning feelings in the newness of a relationship. It’s triggering. It’s confining. And yet, it’s also liberating. To be succinct…it’s just damn confusing. For the sake of this post, however, I will use the term freely for its power and leave it up to you to suspend your judgement of it’s meaning and just accept the context. Deal? Deal.
And so, I’m totally in love. In that I love this experience. In that I love my life. In that I love what I know about her. In that I love feeling enthusiastic again. In that I love the color of my days. In that I love waking up with purpose. In that I love having a distraction from my disease. In that I love being inspired. That’s what I mean.
It’s funny what being in love does to one’s emotional state. Because, technically, I’m still dying….and yet, everything is suddenly transformed, brightened, positive, hopeful. I can’t explain it. As artists and intellectuals have tried since the beginning of communication, it just can’t be explained. It can only be felt. And in the midst of so much darkness in my life recently, this new, alternate state is drastically different, an emotional extreme heightened by the divergent imbalance. Things have been so bad that something so good is…well…just so damn good. It’s like the colors are brighter. The music louder. As if I’ve downed 10 cups of coffee in a row. Each day is laughing, smiling, exuberant…despite it all.
How do I convey how incredibly important that is in the context of this experience, this precarious existence?
I don’t think I can. I can only state to you plainly. This distinct emotional excitement feels heightened, more intense, more IMPORTANT in the context of a potential life and death situation. It..it feels like winning. It feels like having overcome a seemingly insurmountable obstacle and then riding that wave of accomplishment far into the future. It undoubtedly feels like a fist in the air, in your face, standing on the podium, sort of winning…and at the same time a kind of collapsed, accomplished, calm and contented, lying weakened in the grass sort of winning too.
Fault me for perceived hyperbole…but this IS how it feels. And in the context of life and death, who am I to deny it?
Risk and Reward
I will concede you the risk though.
Love IS a risk…it always has been, in living or dying. No one denies that and yet it is this risk which infuses it with so much greater meaning, and sometimes, devastation. Risk gives love its power. It’s overcoming the potential emotional devastation of being left behind, of falling out of love, of investment with little return, of disappointment, of so much frustration…and yet we take the risk over and over again, because the reward is always worth it. The comfort of another, the successes together, the sharing of experience. The rewards are just as enticing as the risks are frightening, and so we often err on the side of risk taking, jumping from the cliffs edge, leaping over the fire…against taking good notes, fiscal responsibility, driving under the speed limit.
My situation is no different…or maybe it is. On one hand, what do I have to lose? If my existence is to be abrupt, why would I ever hesitate in taking this risk…of jumping over this fire? And on the other, what if this risk fails and I’m left alone again, the light dimming yet again, the disappointment adding to my already accumulated disappointments? Well, that is my risk to bare, right? To be honest though, I can handle it. What’s a failed attempt in the midst of everything else seemingly held together by frail threads? I’ve come to expect a lack of consistency, of quickly changing circumstances, of future plans spun out of control and out of reach.
Ultimately though, I refuse to let my unwritten future dictate my actions in matters such as this. I’ve always sought to deepen the experience of living, to take risks, to fall in love when the opportunity presents itself and so I’m accepting this risk with the same sense of abandon that I did before it became infused with so much more meaning.
And so far…it has been a risk well worth taking.
Love in a time of Dying
Our conversations are pretty normal, in getting to know each other through stories about growing up, explaining perspectives and detailing interests…but sometimes I have to address the obvious. The dynamic that makes our situation so unique. Recently, I stated to her with a compassionate seriousness,
“You have an out. I want you to know this, that you have an out. If this gets too heavy for you, too much….just know you have an out and I will completely understand.”
She tried to shake off the idea, but I had to reaffirm it, to let her know just how real this is and how deep it can get depending on how this story writes itself down the line. I may become physically destroyed again. I may have that second surgery. I may increasingly deteriorate. I may become cut short. But then again…I may become stronger, more intense. I may come out of this unscathed. I may have a future to write. Time will tell and the experience of moving through that time holds a lot of unknowns, unexpected and abrupt changes that may pull me one way or another. I don’t know. I’m doing pretty damn good through it all so far, I can tell you that, but I can’t rely on much right now….except hopefully her.
At the 9th infusion my doctor said to me, “Your blood counts are beautiful. You’re doing something right….but I have no idea what that is…just keep doing it.” and followed that up saying, “What we are dealing with is very rare. So it is nothing short of a miracle that you are doing so well in this.”
That was encouraging, in as much as it was discouraging..or maybe frightening. But at the same time it alluded to a hope for a future that is still brightly lit instead of the one that tends to lie in a darkness I strain to see beyond. It was also an accumulation of a hope that caught me off-guard in a conversation with her that ran late into the night.
I don’t talk too much about what is beyond this experience….because there is no “beyond” that is garuanteed to me just yet. I remain positive and I remain hopeful IN THE NOW. I don’t remain positive about the future….for that I stay neutral, in a manner that protects my emotional state from being pulled into extremes. Just as I refuse to cower and hide, give in to self-loathing or despair about my days, I also refuse to imagine a future, know a victory and see beyond the darkness. And yet, we were talking casually about subjects not related to cancer, specifically about my son, and without hesitation I made a statement about the future, about what my sons relationship with me will be like when he’s 30. No sooner than I had said it, I suddenly felt a confusion build inside me, a conflict between a future that might not involve me in his 30s and an immediate hope…and almost expectation….that this was merely a temporary obstacle that I would overcome with her and move away from into a more stable life where I would see what the relationship I’m building with my son turns into. I was caught off guard and felt somewhat disappointed in myself for thinking past my reality….and yet couldn’t help but recognize this as another effect of her influence, of giving me something so valuable and intense that I want to hold onto desperately, that I don’t want to lose, that I want to extend further into the future…past cancer.
She has helped me turn on a light that lets me see something past this darkness…but I hesitate with my finger on the switch, not quite sure I’m ready to keep looking that far ahead. In that brief, foreign moment, however, it felt good to look ahead without reservation. Without cancer. Without a dying.
Everything is Good
Genuinely concerned friends often ask me, “How are you DOING?” The emphasis underscoring their honesty and attention. I’ve often found myself torn between addressing my precarious positivity and offering the honesty this experience demands. There was always hesitation in my response before I could answer. But now…before I even formulate a response that brings the two sides together, I can genuinely respond, “I’m good. I’m doing really good.” Because I am. Because suddenly she paints my days like this. Because I think about her and about us and not about cancer. Not about the weight upon my shoulders. Not about the darkness that always hovers in the distance. Just like that I’m suddenly “good”, distracted from the struggles of my days by the focus and excitement that consumes a new relationship, that has given me a new “baseline”, that puts me in an emotional state I forgot I was capable of experiencing.
I thought I was good before. I truly did. I thought I was moving through this experience with a mental and emotional state that was pretty damn good considering, but now, well, I realize it was still compromised, still lacking…darker. It was darker than I could realize. And her presence made me realize just how much brighter it could be, how genuinely happier I could be. So now, everything is good….despite it all…I’m really quite good. The light in my days is simply brighter, much brighter.
For so much darkness around me…she sure did bring in a lot of light.