I have been having dreams of my friends becoming wax and falling apart before my eyes. Not only them but everything they give me. Maybe, I miss my friends, need friends or maybe I am afraid of being alone. Maybe my friends are made of wax, who knows. At this point, I would not discount anything. With all the drugs, outside deprivation and total lack of control, I sometimes can’t tell my dreams from reality. Sometimes when I wake up I don’t know if I have slept for a few minutes or a few days. Most of my dreams are painful and vivid. Some are incredibly rich and encouraging. The one thing I do realize is that I cannot exist in sleep and this was my only escape.
I feel like getting a good pain control system in place and moving to an island where I can just be away from everything. I would love to just listen to music that inspires me like Sara Bareilles and write more of my own. I would like to be able to get up and try to swim in a clear lagoon every day, work on writing books, arrange for friends to come and visit frequently and just get away from all the sad faces around me. I hate the look I get as I describe my story. There is nothing worse than slowly seeing a polite smile slowly melt into concern, from there to disbelief and from there the bottom of their expression which is helplessness.
I am tired of asking people struggling to get by to help us get by when I meet people that have more means in their pinky to relieve my financial worries forever and they don’t flinch. But that is the love of oneself or the “I am God, I am self-reliant” complex that you meet out there. C.S. Lewis describes this best in his book “The Four Loves”. People who have little are most likely the ones closest to God and are in touch with loving or giving to others. Those who are self-reliant do not “need” God so loving others and giving are foreign to them in quantity needed.
Don’t get me wrong, the $25 dollar check or maybe even the $250 dollar check you gave is much appreciated. But if you have $25 million then it is almost insulting when you know the need and you know the story. I mean, I could never have that much because I would give it all away to help others in need. When you hit bottom, when you have nothing, you realize that you don’t need $1,286,589 as your “number” to “retire”. What is your “number” as the commercial goes. My number is dead even. Enough to feed my family, be as comfortable as possible physically, and not have to beg for every dime just to cover the unknown of what is coming next week. But I haven’t always been this way. I have had to go through a very painful journey to get here. I am trying to tell others so that they do not have to go through this to get to a comfortable place of loving and giving to others. I am trying hard not to judge others or put them where I am. This is difficult but you have to accept people where they are no matter where you are.
After saying all that, I must say that I am still humbled by the little and not so little things that people do for us and help us with. Mary’s parents allow us to live with them and they help take care of my family. My sister always helps us and never, ever asks for anything in return. She never asks for how we use what we are given or even cares. She just loves us. My good friend and angel Amy Hitchman just sent money for not only my girls to go to their favorite camp, Serenbe but also money for Mary and me to join them for the week staying down there. I can’t explain what this means to me and giving my girls and my family a “break” from reality. With my surgery coming at the end of August, this will be one of the things that I will always remember. God forbid the surgery leaves me on the table in NYC, at least this will be a magical memory for family and something so meaningful to me that I cannot put into words. There is a chance that I could die, become paralyzed or even that the surgery could be successful. But that pendulum of reality will at least get a week off.
There are others that have helped us as well so many and too many to mention. Just know that I love and appreciate your gifts to us.
For some reason, I feel compelled to write a prayer. Even if you don’t believe in God, please believe in the power of all of us helping each other.
God, if I am going to have a slow, agonizing, painful death that lasts the next 6-12 years then God please get rid of everything else! I have given everything, and I mean everything to this disease and it has left me with a life rich with sad friends, crying family and incredible insight. I would thank God for the ground but I feel like I have yet to reach it. I keep falling and falling, hitting things very hard along the way down. I have been shown the amazing grace of God through people and unexplainable events. So I pray for the ground so that I can thank God for the ground every day. I want the ground to be higher but I know that it probably will never be where it was. And I am deeply afraid of how far down the rabbit hole can go.
God make me a vessel of your love and grace. Give me the ability to bring people together to make this world a better place. Through my pain, give my sorrow your triumph in delivering understanding to those that suffer as I do or just need answers. I know that sometimes we are not given answers because if we had all the answers we would not pray, we would not go to you. So give me the strength to not give in to what I have done or what I am, for I am nothing without you. My life was given as a gift to all those that meet me not because I am something special on my own, but because your light shines through my eyes, through the holes in my inadequacies, on the book of my weaknesses and around the wallows of my immense pain.
God as my cup becomes empty give me a smaller cup that I can hold. Give me a cup that will always run over to others and feed the thirst of those who are thirsty. Give me strength to hold my head in humility as you give your grace and your gifts to me to help nourish others that hunger for help, hunger for relief, those that hunger for healing. If I must suffer all the days of my life from this day until the last, I will willingly do so if only to help one person. This promise is not by my character but by your grace that you have given me life and not just a beating heart, but a heart that feels the life of the people around me and the people I see. You gave me a heart that seeks justice for those unable to fight their oppressors and the heart that seeks wisdom in doing what is right with every beat.
God save me from the darkness surrounding this disease and those that would lead me astray. Light my path to those that can help me in my daily life. Surround my spirit with wise souls that can help me with this heavy burden. If I should be so graciously freed from my afflictions allow me the means and the measure to do even more for those in need. If I should go quickly please blanket my family with love, security and the strength to continue your work my life started. If my days should be slowly and painfully measured, then please allow your good works through my suffering to be the light of my story and my suffering be the doorway to those seeking all things great and small from your grace and for your glory.
In your name I pray, Amen.