Today was a really great day! I do not have visitors very often, so when my best friend Kasey and her girlfriend Kourtney let me know they were coming to visit me today, I was over the moon. We sat outside having girl talk for about four hours. We laughed until we cried. We watched our dogs play together. The kids enjoyed their company as well. I felt alive today and alive is something I have not felt in such a long time. What a beautiful day to spend out on the front porch visiting with great friends. I have not seen her in a year and now she lives literally forty-five minutes from me. Excellent! I definitely need friends in my life.
Already a pretty hardened – some (like my husband) might say fairly unemotional – person to begin with, in a way cancer and being part of the cancer community, has made me even more stoic and cold. Within the last 6 months, I have experienced enough heartache, pain and disappointment, and my response has been to grow a thicker even more impenetrable skin so that ideally nothing and no one can hurt me quite that deeply again, not being told no when I ask for a donation to my fund, not hearing about the death of someone I know, not even, if it were to come to pass, being told that I have cancer and IPF everywhere in my lungs and that I won’t be here to watch my children grow up, nothing. My attitude these days is more often than not, “Shit happens – so what?” Sure, I show the appropriate social responses when someone tells me about a tragic illness, injury, death or disaster, but inside I feel little, like that part of me that was once capable of human compassion has died, killed by the cancer and the IPF.
While in some respects the story of my diagnosis was a nightmare, I think it is ultimately a story of love between me and all those who came to support me. In my moments of elusive faith, I believed the hand of God brought me to TMC then so that I could know that kind of magical and singular love, a love that I had never experienced and, I daresay, that even many of those who have lived many more years than I have never experienced and will never experience. Sadly, it’s the type of love that is only shown when life is threatened, when for a few minutes, hours, days or weeks, everyone for that short period of time agrees on and understands what really matters. And yet, as transient as that love can be, its magic, intensity and power can sustain the most hardened among us, as long as we allow ourselves to luxuriate in the glow of its memory. This disease may bring me to the final days of my life on this earth, but the story of how cancer came into my life reminds me every day that while it has taken from me the innocence and untarnished happiness of my old life, it has also given me the gift of human love that has now become part of my soul and which I will carry with me forever and ever.
Most of my posts takes hours and hours to write, which sometimes means days. My life has been filled with spending time with Kevin and my children and less time spent in doctors offices and hospitals. Yes, they drive me nuts often when they won't change their clothes or eat their meals, but at the end of the day, I love them beyond measure. All-in-all Kevin and I have found a new equilibrium that is working for us. And sometimes we even manage to forget to that I have cancer and IPF and can truly live in the moment with a joyous abandon I've never known. Sometimes...
Alas, the realities of cancer and IPF and that part of our life always resurfaces, and Kevin and I have to deal with them.
I wonder why it is that the memories of that most traumatic time of my life have not faded with the passing of the months, weeks, days, hours, minutes and seconds, why it is that, despite my senses being bombarded by a plethora of new experiences since those early weeks that have been traumatic and overwhelming in their own right, the images and feelings I associate with being told that I had cancer have an unparalleled and unprecedented grasp on my consciousness. The clarity of most memories dull with time, even the good ones that I want to hold close for all my life, like falling in love with Kevin and seeing my babies for the first time. But the recollections of the pain and shock and all the minute details of my cancer diagnosis just won’t leave me for I’ve forgotten nothing about that time.
Perhaps, this is so because the story of how I came to be diagnosed is not your run-of-the-mill cancer diagnosis tale (to the extent there is such a thing); no, mine is a story that borders on the incredible. Perhaps, this is so because there can be nothing more momentous or memorable than facing death. Perhaps, this is so because I have some kind of post-traumatic stress syndrome. There’s a reason why war veterans wake up screaming in the middle of the night as they struggle unsuccessfully to forget the details of their horrors that visit them in their nightmares. Now, I am a soldier of my own war with my own demons to battle, the worst demons being the memories from six months ago.
I don’t wake up in the middle of the night screaming, but the memories do come back to me unbidden, sometimes triggered by being in a particular place or by what someone says or by nothing at all; sometimes, they feel like waking nightmares. They play out in my mind’s eye like a Greek tragedy in which I am watching myself with dread, knowing that I, the protagonist, will meet a terrible fate even as I go on so innocently and stupidly believing that my pain was just an autoimmune disorder or some other obscure breathing disorder, but certainly not cancer or IPF. As the tragic hero of my own play, I will be brought down by my fatal flaw, my hubris, which would have me believe that I am young and strong (with my five-times-a-week-workout schedule) and that I am immune from cancer. But as a member of the audience, I know what’s coming and I want to scream at my alter ego, warn her so that her fate might be something other than what it already is.
I’ve often heard people say that within every lie is an ounce of truth. I think the same concept applies to acts of kindness and goodness – within every act of selflessness, there is (at least) an ounce of selfishness. It’s something I’ve pondered over the last year as I’ve sought to find (or more likely impose) the good or purpose, if you will, in me having cancer.
No doubt, everything I’ve done has had an altruistic, albeit probably very attenuated, effect of saving lives or comforting those hurting. But the truth is that my good deeds have also served me well for they’ve made me feel good about myself as a human being; they’ve made the fact that I have cancer seem less senseless; they’ve dulled the anger, soothed the fears and pushed me out of my personal darkness; they’ve led me to a community of people (some of whom have become genuine supporters and friends) who understand my disease and pain; they’ve given me some comfort in the faint belief that as part of some karmic order of balance in the universe the global good I do and sacrifices I make will spare Kevin and my kids from all the horrible things that could happen to them. So, while I do all this because I truly do want to help, I also do it to help myself.Such contradictions are part of the complexity and nuance of human nature.
For me, I have found these acts of altruism and egoism have taken on a greater significance as I face mortality at the young age of 35 an age at which most people are usually too absorbed in their busy lives of career- and/or family-building to think about death and all of its consequences. I find myself wondering whether these acts may serve as my legacy, about the impact I will have had on the world, about how family, friends, strangers and those who are yet to be born will remember me, about the bad and the good that will be said of me. Creating a legacy is perhaps the ultimate act of selflessness and selfishness.
After I was diagnosed with cancer and as I continue to wonder everyday how much time I have left on this Earth, I have come to understand why. I too now feel the need to have my name permanently etched somewhere (if only metaphorically) so that it (and hopefully the memory of me) will withstand the obliterating effects of time. As narcissistic as it may sound, I don’t want to be forgotten after I’m dead and gone for I want my place in history, however obscure. I don’t want my life to have been meaningless; I want it to have mattered, hopefully in a good way; I want it to have left a resoundingly positive impact on the world. Even though I will be dead and presumably won’t care about such mundane matters, I know that creating the legacy I want is part of living a more complete life so that when my time comes it will be that much easier to let go of this life. Cancer has given me the opportunity, an opportunity that not everyone has, to thoughtfully shape that legacy before it’s too late.
But the conscious crafting of a legacy is about intentionally making those ripples and making them powerful so that their effects will resonate, e.g., having children. For most people, their children are their greatest legacy to the world, the production of hopefully well-adjusted, smart, happy members of the next generation who will ideally make the world a better place. This is absolutely true for me too. But for me, that isn’t enough. Although the love I feel for my children is unparalleled and I would gladly lay down my life for theirs, there is much more to me than being a mother and a wife, a fact that I sometimes forgot in these last few years as my life was consumed by the overwhelming business of raising three children and giving them everything I possibly could. The truth is that while motherhood fulfills a big part of me, it could never satisfy my entire soul. For that reason, the shaping of my legacy, which by definition should be a reflection of my soul, must entail more than my children.
Make finding a cure for cancer part of your legacy to the world.
Love you all, mean it and God loves you too,
Shanna xoxoxo
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