I believe in miracles. Actually, I know for a fact they exist. People may have different names for them, and some may even try to explain them, but miracles as I see them are gifts that cannot be explained. I am not very religious (a traumatic religious upbringing and setting pretty much took care of that) but I am fairly spiritual. I don’t believe in karma (want to!) but I do believe in the unexplainable, good and bad, energy, reflection and whenever someone might refer to God, I refer to the universe. To me, miracles, are gifts from the universe, and I believe in them because the fact that I am alive to write this is one such miracle.
That is the word my doctor used in May 2010. Actually he used miracle and gift interchangeably. Because I was supposed to die, I was all set, and then I was just better. My fight started in July 2009 (on my 25th birthday) and I did die, albeit just for a little while. I can’t say I remember it, just flashes of the emergency room, the spinal tap, thankfully the seizures, strokes and fever of more than 109 degrees took care of anything concrete to hold onto. And then I was in this state of limbo for what felt like weeks, and was actually three or four days. Not a coma, not conscious or lucid, on and off support. This was the easy part. I know that sounds nuts, but looking back on what would happen only a few months later – it really, really was.
A few months later, I was diagnosed with a rare autoimmune disease that caused my kidneys to fail and my lungs (and then the rest of me) to fill with fluid. Within ten days of being diagnosed that was it. I couldn’t continue treatment of phase A, which needed to be completed to get to phase B, and I could not do the two of them together. I can’t say I was in the right frame of mind, because there isn’t a right frame of mind to be in. But I had a doctor apologizing for a disease and people wanting me to get my affairs in order, so I figured if I was going to go out, I was going to do it in classic Michael style – fighting. I did both phases, my body was too unstable and within a few months all of my organs were angry (a nice and simple way to put it), my left arm was on the chopping block (amputation seemed likely) and a very loud clock was reaching its end, since my port started to fail and I was overrun with infections. And then my less than 5% kidney function became over 40% over night. After ten months of fighting, the universe handed me this incredible gift. And what as my reaction? Return to sender.
When my miracle first happened that was my reaction, for several weeks. I was always told best case was organ transplantation (kidneys were up first!) and being suddenly better, with no explanation, meant I was no longer on the list. A transplant you understand, how it works, what to expect, and real best and worst case. But a miracle? I had never received such a thing before. How could I rely on it when my doctors now had to see me four times as much because they didn’t know when things would change. They hoped they wouldn’t but there was no roadmap for my case now. Who knew miracles could be so inconvenient?
I got past that over time (obviously) but it doesn’t mean that receiving a miracle is simple. I am grateful, every day. I try to appreciate life to the fullest and I feel a stronger drive than I had before (and I was quite the activist before I was sick!) to make the world a better place; to give back, because I have a debt to the universe that can never be repaid. People remark that what happened, happened because of me, because of my fight, because I am strong. And I am, strong and full of fight, but the thing is, so is everyone else I have ever encountered who are facing death or already written off. Very few people are like, “All right death, let’s do this,” at least when it comes to young people. I say this, not being ageist, but if you have led a long and full life, letting go is much easier to do (or so I am told by said long and full life folks). I had a lot of people who loved me, thought of me, prayed for me. So do most people who go through this. I fought like hell the entire time. So do most people who go through this. I am no different from the people who never received a miracle or those who lost the war they raged against invisible assailants. The only thing that is different is that I was lucky. I got the miracle, not because I am oh so wonderful, and true I was not finished, so are so many who ultimately lose.
In July 2010, I made a promise to myself, to be different. To be better, to live with the lessons dying and being reborn (but not in the religious extremist kind of way) taught me. I didn’t make good on that promise for another five to six months, but hey I have never claimed to be perfect. I like to think I have made great strides in keeping that promise. It will never be made until I am done, and I am constantly a work in progress, as I should be. But then there are times (it is actually almost always there, just more background than front and center most of the time) when I am reminded of all of those people who aren’t lucky in the sense that I was. And I feel like a thief, stealer of miracles.
I know it is ridiculous, with no rationale to hold it up, but feelings are feelings and logic rarely plays into how you feel. When it comes to anyone younger than thirty who is sick, or anyone with kidney failure, I always think, “Did I take their miracle?” Before I was sick, I led the bandwagon on care baskets, support, and bringing people together in times when someone was sick. Now, if it is a child, I am there, but nowhere near the front. I tell them I am here, and if they would ask for something I would make it happen, but no one ever asks, just like I wouldn’t when I was sick. I stay in the background, not because death scares me or I cannot handle being around people who are sick. Because they are just people. Their illness does not change who they are, it simply changes their situation and circumstances. But I do this because I feel their circumstances as if they were my fault, and feel an incredible weight of stupid ‘it doesn’t go with anything’ guilt.
That is the word for it, if I am going to be honest. When my husband reads this he won’t let me live it down, because in the past he has always said I feel “survivor’s guilt” and has even looked into groups that deal with such things, but I have always turned it down and when he says such things, I just say, “You read too much.” (I know, I know, pot, kettle, what?) I know it is not rational, the world is not fair and does not work that way, but you can’t unfeel something. You can choose to let the feeling pass, and not act on it, but you can’t try to banish or repress it because it just gives that feeling that much more power. At the same time, I can’t be on the frontlines when it comes to the instances that trigger my guilt, because then I am making someone else’s experience, grief, fight, life – about me. And how self-centered is that?
It is this balancing act of being there enough and hiding the fact that seeing anyone go through a dialysis treatment, watching a child battle cancer, seeing families bury their loved ones – those gone too soon, the ones who didn’t get a miracle, tears me up inside. These losses don’t weigh on me day in and day out. Usually, they pass and it isn’t until I think of the person no longer here that the feeling returns, like a shadow. It is nothing compared to true grief, but while fainter, the feeling is just as true.
I have been aware of these thoughts since the beginning of 2011, when a friend’s child was diagnosed with Tay-Sachs. And then another friend’s child got cancer, and another friend’s child, and then several friends found their siblings and parents on dialysis, and then some of my closest friends were battling cancer and one even lost that battle. And I always feel at least the glimmer of guilt, along with the loss, sorrow, empathy and anger that goes along with the territory of dealing with terminal illness. Sometimes I am able to tough it out and be part of the core support and sometimes I wish I could be better. I try to retrain my thoughts and perhaps one day I can be on those frontlines again. For now, I juggle doing everything I can and keeping a distance because someone else’s journey has nothing to do with me (you know what I mean).
It’s funny, because miracles, like life I guess, are tricky. I don’t know if I will be okay forever. When I hear about someone being sick, I feel horrible, and I wonder if I stole their miracle, and then I am instantly gripped with the fear that the universe will see my thoughts as being ungrateful and take the miracle back. No more remission that never should have been, no more health, no more life. And then I beg for a few seconds to keep my miracle – that I am grateful and promise to make it mean something. And then I feel shame for not volunteering to switch places with whoever is sick, as if the universe was offering some kind of deal like that.
Being aware doesn’t make it easier, but I hope to eventually master the balance regardless of how I feel. Because no matter what, I do not think the shadow damning me as Michael, The Miracle Stealer will never fade entirely. But in the end, being here to feel such a weight is still something I will always be grateful for.
*The thing that inspired me to write this out (I never have before) was a book I just read called “This Star Won’t Go Out”. I have not had a book move me so much in at least a year, probably two. It will make you feel… everything, and is totally worth it. Check it out here: Confessions of a Bookaholic: This Star Won’t Go Out.