Finding Peace in a Most Unlikely Experience

It sucks to be sick. There, I said it. It really sucks to be sick. It sucks when I can’t make plans for today or the next day because I don’t know if I will feel well enough to follow through with them. It sucks when sickness goes on and on for months, essentially shutting down my life. It sucks that because of illness I have become less and less active, which in turn contributes to my being more and more sick. I’m not moving my body enough, not getting enough enjoyment out of living, not leaving my house enough. It sucks when life becomes smaller and smaller, and when people stop reaching out to me to do things with them, and when I stop reaching out to others. The fatigue sucks because I don’t feel like I did anything to be fatigued by, but maybe my body is fatigued from trying to manage the effects of a brain mass. It sucks that my husband had a commitment to work in Brazil for five weeks right in the middle of my dealing with illness…mostly because he’s my best friend and I want my best friend beside me for strength…and hugs…when life is majorly sucking. It sucks that we’ve been planning for more than a year to make a two-week trip abroad in July of 2015…a trip that can never be planned in quite the same way, or with the same people, ever again…and now I have to face the reality that the trip will likely not occur for me.

And it really sucks to not understand what is happening with my brain, mainly because I’ve been seeking answers from doctors who don’t understand what is happening with my brain. If brain surgeons don’t have answers, that begins to feel pretty hopeless…frightening, in fact. As an update, my second consultation with a brain neurosurgeon resulted in another "its not the cyst" conversation, but at least the willingness to explore what is causing the intracranial pressure by ordering a lumbar puncture to measure the pressure. Assuming it is abnormal, they would recommend placing a shunt in my brain to control flow of cerebral spinal fluid and thus decreasing the pressure. My primary care referred to this plan as treating the symptom and not treating the cause. But I digress. This post is about finding peace in a most unlikely experience and taking the post in that direction is far from peaceful.

In the midst of everything feeling sucky and scary, there now come these moments of peace, moments of clarity, moments of almost euphoria. I’m not dealing with a terminal illness, at least not that I know of (not so sure the answers I’ve received thus far are without-a-doubt accurate ones, but for now we are going with a belief in a “benign cyst”). Yes, I am grateful for this. Cancer sucks MORE than a benign cystic brain mass for sure! But there are degrees of suckiness. Any kind of abnormal thing growing in the brain is not a positive thing. Certainly one that sits deeply in the center of the brain that is not easy to remove makes an impact on the brain and its functions…the gray that matters to me. This I know to be true because I am living with the symptoms from it.

But the peace, the clarity, the euphoria? What is that all about? I’ve been trying to pay attention and now I realize there are certain benefits to having your life get smaller and smaller. I know, it sounds like such an odd paradox but this is what I’m experiencing. For one, when your life gets smaller and smaller, you become more and more in the moment. I’m not thinking about something in the past, nor am I worrying about something in the future. I’m typing these words, right here, right now…fingers hitting the keys. I’m washing a dish, feeling the warmth of the water on my hands and focused on the goal of getting the dish clean. I’m petting my dog, feeling the softness of his fur on my hand, and watching as he reaches up to place his paw on my leg, as if to reciprocate and pet me too. I’m laying still and experiencing intense nausea and trying not to throw up…and nothing else is going on. Nothing. Just the experience of the nausea. Nothing needs to be done. Nothing is waiting for me to do it. No one is needing me. No one is waiting for me. The mass sits quietly in the center of my brain and it doesn’t ask anything of me. Just…BE.

My definition of misery is wanting something to be different than it is; the belief that something is not right and needs to be changed; not accepting the status quo. You know, like having a brain cyst is misery because it isn’t supposed to be there and it has to go and its make my life suck. And because I hold that belief, I am spending every waking minute focusing on the “not wanting” of the brain mass and pretty soon I am in misery…misery because I want something to be different than it is. So far, I don’t have a lot of control over whether or not the brain mass is there. And maybe I never will have a choice in the matter…MY gray matter. What if, let’s say, I exhaust all reasonable consultations with brain surgeons and the result I hear is “you have an inoperable brain cyst.” Or what if I find a brain surgeon who says “This cyst MUST come out,” but my insurance company denies coverage (a very real possibility with the apparently rare symptomatic pineal gland cyst in my brain). What then? I’m still sick. I’m still losing my vision. I still have short term memory loss and decreased cognitive function. But given those circumstances, I would have to find a way to “live” with it, wouldn’t I? And in that case, I could either focus on the misery of the situation…wanting something to be different than it is…or find some way to accept what is. Or, let’s say, the brain surgeon offers me an operation to remove the cyst but the risks are too great for me to accept, or I’m unwilling to accept what it would take to recover from brain surgery? Because of course that is still my choice to make if the offer is made. My gray matter, my choice. What if I came to the belief that everything is just as it should be and nothing needs to be changed? What if?

These are the thoughts that come to me…that I will indeed be faced with choices...some type of choice to make at some point. And when I realize this, I feel this sense of peace. What if I choose to perceive it differently, believe differently? Can I say definitively whether it is a blessing or a curse? Something I am destined to experience, or something I let destroy me? And then the euphoria comes and I’m peaceful in that moment. No fear. No misery. Nothing to do. Nothing to change. Only to BE…BE present in this moment. The only moment I have because all previous moments are gone and the future ones have yet to come. Only this moment and I’m totally in it because I have nowhere else to be! And that is peace.