AS I sit waiting for the results of the latest test to reveal the cause to the increase in vomiting, retching and rapid weight loss, I am waiting for someone to find something to explain what is happening, but mostly I am waiting for someone to put a “name” on this thing that affects every minute of everyday of our life. It is like somehow if I could only figure that part out I, would be able to get us a plan, understand how to manage everything better and something to fill the deep desire to know what is coming next.
Is this now how our story starts? I wonder how many times I have asked myself this...It was until recently did I figure out that we are in the middle of our “story”....It hurt... But why have I not recognized that this is our story...
I have supported many journeys in my career, and I could always envision a picture of possibility in the middle of very difficult end of life experiences. I guess that is my super power, to see the possibilities and help people build better stories. I could see it and at times feel it with them, but I was only feeling what I could identify with, there is a whole host of other messed up feelings, uncertainties and deep sorrow I could not see, nor could I feel.
There is comfort in familiarity, as I sit here waiting I am looking for what I know and understand because I need something to make sense, I need to know when we are supposed to start “the journey” the journey I have walked with people a 1000 times. The reality is, there is no familiarity in watching the love of your life disappear before your eyes. There is no familiarity in watching endless suffering. I feel like screaming “please someone just tell me what the hell is going on because it looks like my husband is wasting away as he throws up in a bucket and his body is shaking from the weakness and exhaustion for the physical effort that takes.” Someone please give me the words to know what to say when he looks at me and says “I don’t know how much longer I can do this..” cause all I got right now is “i know”...
We need to understand as Professionals our impact on these journeys. I think the miss for us as healthcare workers, is that we do it so many times in so many ways, and we create a picture of what it procedurally looks and with intention try to do it with love, kindness and support.
What I have discovered is that we have a much bigger roll than I ever knew. No book or workshop can help you understand what it is like to be so far down the rabbit hole, that all you can do is pray that something or someone comes along to pull you out that brings clarity and familiarity. As Professionals we are these people, think of it as being their personal Field Guide to navigate rough waters.
These are the things that matter most as I sit here today, these are the things that change lives and create the space for amazing stories. We all deserve amazing stories the will live on far after the patient has died. We are the ones who make sense of things that make no sense, we bring a clear direction of how to move forward, and we know how to relieve some of the pain and suffering that has been controlling their lives for a long time.
What we need to understand, is that we are also the place were our Patients need to be able to say “I’m scared, and be courageous enough to sit with them in their fear and bring some kind of normal to it. We need to be the place where a Wife can sit with you and say, “is it weird for me to want him to die....?” and be able to say, it’s not weird, you have both been suffering a long time. We have to be the place where silence is golden and understanding that presence is more powerful than words, because there are none. We have to be the ones who pick people up, dust them off and say this is going to be hard, but you got this, and then without condition have it.
The reality is that the picture is and has been being drawn every moment of every day. My subconscious knew it, but the shift wasn’t until today when my conscious knew it. Today, there are no answers to the rapid weight loss, so I am grateful he started out a fat man. Today I watch him suffer because yesterday he just wanted to live his life, the story I choose is to be compassionate and supportive enough to to know that there is dignity in suffering and not give him the beat down for doing something stupid. For today I am going to choose to lean into the uncertainties of Gulf War Illness and build a story of love, laughter and togetherness.