We all live with certain fears. Some are more willing to conquer them head-on by doing and living what they fear most. Most are phobic about anything that challenges the fears living inside them, the fears floating around their heads. I, myself cannot say that I am fearless. I have certain fears that I will probably die with and I have certain fears that I fight every day.
When it comes to fear there is no logic. It either changes who you are or it doesn't make you blink. It all depends on whether or not you have let fear become a part of you, how deep that fear goes and if you see that living with fear, any fear, takes a certain part away from who you could be and sometimes goes so far as to define you.
I don't fear death or suffering. I do fear not knowing when painful things will end. I give hope to things that don't hold any promise of redemption. Sometimes I fear how I have let my disease, my condition, my situation define me. I have let down myself and those that care about me not because I haven't tried to fight, or to find answers, or to get better. I have failed because I allowed my own fear of living life without answers. I have been living life with a possibly naive hope that things always get better and I will get better one day and return to "real" life again.
Well, it has been four years now of spiraling health, dwindling hope and casting nets on all sides of the boat. But the reality of what has been defining me and what has suffered because of me has set in. It was something I never thought to fear. It caught me off guard because I always knew that I would somehow pull through this and be a great inspiration to all and I would change my own definition one day from this poor suffering soul to someone that is strong and fought through it all. So my fear of being defined by what ails me has brought about an awakening.
For the past several months, my eyes have opened to who I am and who the people in my life really are. While I have been fighting this battle from my bed, the world was moving on without me whether I accepted it or not. I saw the red flags, the warning signs for years yet I chose to ignore them. I feel betrayed by doctors that I gave my complete trust to. I feel abandoned by those that didn't know how to stay with this thing, this person as defined by what I am going through, not who I truly am. I accept the blame and at the same time realize that it isn't all my fault as well, but I now must move forward and accept a greater challenge. Now, I must live without fear of asking for help.
I must live without fear of protecting myself from those that choose to hurt me while they are my lifeline as well. I have to give space to allow this thing I have become, to disappear, to fall apart and be the person hiding behind the curtain. I have been this person hiding behind suffering and behind the plight of getting better at all costs. In the process, I have lost who I am and I have lost those near to my heart.
A few weeks ago, a good friend of mine from college who now runs a hospice was kind enough to speak to me for a few hours. In a short amount of time, she called me out. Not chastising me but calling out the Andy of yesteryear. It was almost as if she had this power to bring the dead back to life making me realize that in my words and in talking with others that Andy was still in there trying to get out. You know the Andy that was always full of life, the romantic, the guy that people just knew was something/someone different. For many years now that Andy has been suffering greater than any disease or abuse that I literally have been going through.
The suppression of one's innermost being, their soul, the person that they truly are is the most painful state one can ever be in. It took many years and an unbelievable amount of suffering and self-loathing to cover this person over. Many people have never met the true Andy over the past several years, only pieces and parts here and there. That probably has been the only thing keeping people around, you know, curiosity of what lays beneath the cover of my skin. People have seen my bones and my will, but not my soul and my spirit. Time to face that fear. I see now that sitting in fear is the end because you become frozen and don't move in any direction. In effect, fear can be an end.
I am about to go on a journey of self-rediscovery from place to place, friend to friend and revive what has been gone for so long. I know that it will be painful because unfortunately deciding to do this isn't going to make me better. It may in fact make my health worse. But with no definitive prognosis to guide me and no promise of tomorrow, no promise of healing, and no promise of what is coming next, I will not sit any longer. Of course, this would be easier if the above prognosis and treatment plan were definitive, but I am going with what I have, not with what has been hovering a mile over my head since the beginning.
I have already talked with some of you about what is coming. I appreciate the offers of places to stay and help getting there and palliative help/care when I am visiting. I am in no way abandoning my family. If I could, I would bring them with me in my trips but I can't do that until at least summer because I don't want to break what little normalcy that they have. Who knows how long the journey will last. I hope it lasts a lifetime however long that time for me is given. If you want to be a part of this journey let me know so that we can possibly arrange it. I can't promise that I will be fully Andy, but I can promise that I am tackling so many fears right now that you may be visited by three or four Andy's. The good thing is you will like the real one, the one you liked in the first place.
I have updated our needs page at andybarwick.com/needs so that you can see all the things going on in that area. I am also going to be working with Keith Roberts on a documentary that we will send out more detailed information on in the coming weeks. It will be through a site called kickstarter.com to be funded and should be something that is quite amazing. Keith Roberts is the filmmaker and director that did a few of the short films you see on my site. His talent is raw, passionate and we have had high interest in the project for a long time from people that are friends all the way to famous directors in New York. Anyway, with the documentary many of you will become a part of it. That's right, you on the big screen! The more money that is raised through the project coming up will mean the more in depth the story will be able to go and the faster that we can get it filmed, cut, edited, perfected and molded into a masterpiece. I am just humbled and excited to be a part of it. It's about real life so I won't be a paid actor or anything but the message of the movie will be powerful, life-changing and will hopefully bring awareness and change to the hearts and lives of many.
In the meantime, just know that I love and appreciate all of you that have supported us financially, prayerfully and in friendship and trust. Whether this be my parting piece or whether it becomes the first of many to come over the years I just want everyone to know how much you mean to me and my family. I know times are tough and I don't want people to give what they cannot. Please just do what your heart leads you to do even if that is friendship. That is one thing that I need so much more of everyday. That and someone to support my love of gadgets that I have been a good boy and kept away from...for now.
Much love - Andy