How do I express what it is like to live a life that feels so foreign to anything I could have ever imaged for myself? The last several months have been a whirlwind of emotions (nothing new, sadly); but something has changed in the way in which I process them. I have been quite happy and hopeful at times – actually seeing progress – or opportunities missed – coming back around.
I love my children, more than I can ever say with words, so maybe that is why I find myself – by any means necessary – seeking safety to provide them opportunities to thrive. Maybe this is why I take failure so hard, I know in my heart I am trying with everything that is within me, to change the course. There is a complete disconnect between the woman I thought I was, the family I came from, and the course in which life has taken.
I have had to accept that no matter what I say or do to help does not mean that there will be a positive outcome. Sometimes you can run a race until your heart stops and still come in dead last.
To almost lose a child on multiple occasions, regardless of doctors, therapists, family or friends well-wishes… sometimes there is nothing you can do to change the course of something that began years before you had any awareness.
Working on a film provided me with some understandings – not solutions. I wanted to reach her, inspire her own passion to help others. I am sure our story can help others (cautionary tales being what they are), but most of all, I think I wanted to stop the hands of time. So many families have lost their children to disease, mothers write memoirs about children that take their own lives… I swear to myself I will not lose my girl, but I cannot control what I do not understand. Part of me hopes that spending time inside the darkness that inhabits the mind of a traumatized young person can somehow lead them out towards light. I foolishly hoped that my ‘faith’ would inspire motivation to fight for a better life. Some illness carries with it… a host of problems that cannot be seen unless you are closer to it. Living on my own, is not something I imagined would be a part of my ‘story’. I crave having a hand to hold when I am overwhelmed, or a hug, or a restful sleep. The last time I remember relaxing, was after my diagnosis in 2013… I was a resident of Barnes Jewish Hospital in Missouri and getting that second stem cell transplant. I remember it was the most relaxed I have ever been… I was alone, but I felt close to God somehow. I used to crave the company of people, friends, family, being a caretaker, nurturer, and a clown for the sake of love or friendship… I am not sure where that person is now.
I cannot rest, I can barely sit still on most days. My mind is weighed down with the uncertainty of multiple myeloma resting inside of my bones, and always wondering if any small sickness is related to the cancer. People cannot “see” myeloma and every doctor seems to forget I have it, until they open my medical records. My finances are a mess with student loans & medical bills that rival the cost of a home, and I would work more if I could – beyond caretaking. Seems impossible to rise above the ocean of debt to breathe freely. If I were alone, my benefits would be adequate – for that I am grateful, but I am responsible for others. My mind is weighed down with what doctors instructions… remain stress free, rest, care for my body, eat right, rest and maybe it will extend the cancers remission. Oh and my daughters doctors have a list as long as my arm that I am supposed to be working on as well. It is almost a guarantee the cancer will come back – especially if things do not improve. Who in this world can be stress-free anyway? What does a mother do if she wants to live, but she cannot inspire her own child to seek recovery for her own sake? A child that only complies to appease a mother, is not living, the fight MUST come from within the self.
How many times will I arrive to discover an unresponsive child, how many times will I need to experience forms of death, and not understand what for?… My faith as a young person was strong; yet I was naive; blind, and insanely hopeful. (I would give the world to feel like that again). Now questions plague me at night. Nothing I was taught or learned has prepared me for the damage that occurs to a soul when faith and belief does not match up to reality. I could have lost her again this week – and each time she comes home; I think she is inching towards recovery because I remain close by, and I stay vigalent… It is hard to admit there is a blindness when it comes to my love. Addiction comes in many forms.
I would ask for well-wishes, but I know that nothing can be done until she is ready to fight it. Time passing is my only constant… The world spins around me, as I stand still, waiting at doors – the wooshing sound of happiness slipping from my fingers, time spent waiting and wishing for what was lost to be found. (or wondering if happiness was ever real at all). I am not trying to bum anyone out, but I want to find a way to get back to living a life that matches my soul.