I thought, upon writing my last post, that the next post I wrote would be some kind of optimistic testament to the gestures I have taken to be in control of my destiny. I got a tattoo, I got a permanent representation of this journey on my body, as a reminder to let laughter flow endlessly from my heart and fearlessness into my heart. And while it has been a positive gesture it just served to cement the reality, the permanence of what I am going through. What was a gesture of retaking my body simply helped me know that I can’t. I thought that this moment would be cathartic and while I am so happy that I did it, the results were not so clear cut as I had hoped. My response and my reaction were and are bound up in bigger discourses of control, health, family, guilt and representation. Being a scholar, I should have recognized that no analysis is so black and white. There are no absolute truths and we must operate in the grey spaces in between meanings we hope for and meaning we have.
I also thought this post would be about the process, the journey of transformation but it was overshadowed by several things. The largest of which being my anger. At who? I don’t know. Just in general. I’m just pissed. Where did this anger come from? Well, it has arguably been bubbling right below the surface for some time now. Getting a diagnoses and trying to laugh through the pain has gotten me through a lot but it won’t encompass the whole process of recognizing those things that “never could happen to me” happened to me. Ugh. Then Sunday I got news from my father that a man that I greatly looked up to had passed. My heart dropped. At 70 years old he had lived a good life but one that still had much potential for greatness. He was a man that inspired me to change the way I approached the world. He advocated for me and so many other people like me through his absolute devotion to Rotary’s youth programs. And he is gone. It made me stop and think that I should have let him know, before he was gone how amazing he was and how grateful I was.
Not too long ago I went to a graduation party for another impressive and amazing rotarian who acted very much as a mentor to me in my life. At this event people walked up to a microphone and announced openly and with warm, loving arms, how much this AMAZING woman meant to them. When thanking people she said she was lucky to have so many wonderful things said “this side of heaven.” She was blessed to feel so much love in this lifetime. It makes me wonder why we are that way. Why is it we honor people in death and not life? Why can we not embrace the people we love fully in life? A student recently met with me and I was inspired by his amazing attitude in the face of adversity. He has dealt with serious health issues of his father who, due to a tumor on the spinal cord, has become paralyzed. He said to me that he “can’t be mad about what he can’t control.” And he was right. He also asked me to help him make sense of the way the media treats people in death. Having lost a friend in a violent way, he was shocked to see the media attention devoted to her in death when the media “really didn’t care about her before,” Her and so many like her, disenfranchised with no where to turn. No advocates fighting for people in life. And yet, he wasn’t mad, he wasn’t angry because it was not something in his control. I pushed him, to recognize the power of his voice. That he can change how we see people in life and in death. That we can and we must be our advocates in this life. IN THIS LIFE. And he pushed me to let go. To relinquish control.
I remember sitting next to my brother several years ago at a funeral of one of his friend’s father, a family friend and neighbor. Through his gritted teeth and with tears in his eyes he implored me to live this life. He told me to make sure not to let anyone take it away from me. To fight for this life. It’s all that we have, it is all we are sure of. We must live it to its fullest. For years I planned a tattoo of that phrase on my body (don’t worry Mom and Dad – I’m not getting another one just yet;)). I felt I needed a reminder to live this life in a fulfilling way. I later realized my family and friends are those reminders.
I guess I have had some optimistic revelations this week after all but I have also been fighting an UPHILL battle. I worked my ass off to prepare a solid class for my students – as I do every week and only a handful of them were prepared and it triggered in me a desire to push them rather than implore them to like me. I abandoned my desire to be well liked and decided that they needed to fight for their knowledge the way I have. To take advantage of opportunities and make the most of every experience. I suddenly wanted them to know that they must show up for me to show up. They must be present or the whole process is a waste. This was after news of my loving friend and pet Teddy’s sickness. Hepatocutaneous something something. It’s not good. It’s not fair. Teddy is a good dog, he shouldn’t suffer. Teddy’s prognosis came on top of a battle with the scheduling department of my own doctor’s office. For all the praise of Dr. Spetzler, I have been less than impressed with his office’s handling of my situation. The inability of the staff of a hospital/doctors office to show compassion to those who are grapling with difficult realities baffles me. Why work in an office that is supposed to save people and then strip them of their hope. To think I was excited to schedule my surgery. Now, I am just frustrated. I don’t want to be that person that people think of and think, “wow she just can’t catch a break.” So I’m not going to be. I decided to snap out of it. I decided that despite all of this SHIT ( I mean let’s just call it what it is, it’s SHIT) I am lucky.
My mom often tells me something in Persian, “Nashokri nakon.” Translation? Don’t be ungrateful. So here are the reasons I am lucky. My FAMILY – a mom who fights for my hope, even when I can’t find it anymore. A dad that patiently listens when all I can do is yell about everything and nothing because the pain in my head is too loud. A sister than calls and worries about me even when there is nothing to worry about. Another sister that tempers my anger with her patience, her cadence drawing me back into reality. A brother who makes me laugh, makes things casual, but guards me with everything he has. A brother in law who is patient, willing to listen, ready to help. A nephew who reminds me that sometimes life is just as simple as playing with our dinosaurs. A neice who in the words “DA DA DA DA DA DA” makes my day. And a boyfriend, who just lets me be me, endlessly flawed as I am, accepting me for my humanity, praising me for learning to stand on my own two feet. I’m grateful for them. I am grateful for every friend that let’s me vent, that checks in, that bothers to care. For the friend that is patient when I spontaneously cry (in a crowded restaurant – mind you!), patient in holding my hand as a shift my reality, my framework of how I see myself. I am grateful for the texts that come through all the time asking me how it all went, how it could go and how it is actually going. I am so grateful for opportunity. I am grateful for the chance to get up everyday and learn, to better myself and the world around me. I am so grateful for the roof over my head, the endless physical manifestations of the immaterial blessings. I don’t really know if I believe in God but I believe in luck, fate, destiny. Why I was destined to be on this path? I have no idea? But I won’t let it strip me of what I have. Of who I am. If I change from this it will be for the better.
That doesn’t mean though, that I won’t have moments of anger, of ferocity, of fear and of confusion. But I am trying, to let the laughter flow and bravery in. To be brave. That is my endgame. In the meantime, I’m a bit pissed off. Wishing I could just go back in time, to my life before, but I am tempering that with the knowledge that this too shall pass and that I will come out on the other side and at the end of the day to see myself as anything but lucky would be just plain lame.
It’s confusing right? All this hope entwined in all this anger, confusion and an endless stream of jokes (I will laugh my way through every day – no matter my mood). It won’t get any less confusing – I don’t think it will at least, but I am doing my best at being alright.
Peace and love –