Sometimes these days I get really, really angry. After all, I am 38 years old; I have a beautiful wife and two beautiful little girls. But that is about as normal as it gets. I am bedridden most days so my daughters climb into bed with me every night to snuggle up next to me or watch a movie with me. I can tell that my disease affects them in so many ways. My six year old was lying next to me last night in bed and I could hear her restless words mumbled as she slept, “Daddy, Daddy”. She told me a few weeks ago that she is afraid that I am going to die in my sleep. My almost three year old treats me normally. She has never known me as a well father so this is what she expects as normal. But I suspect that she is beginning to realize that it is not normal. And then there is Mary. She has taken on the weight of the world and all my household duties that I used to do. She cries daily now. Which I think is good just from a relief standpoint. It is finally hitting her that this is real and this is happening. Holding it inside just really tears you apart. I still have a hard time expressing what is going on inside my heart and my mind but I started a while back little by little. Eventually the emotional dam that I had built up burst and I felt like I was getting a lot of bad stuff sucked out of me. It felt good but it hurt at the same time just like pulling out a splinter, a really big splinter.
Most of you could understand why I would be angry. I mean who wouldn’t in my situation. I could be angry at looking at a murky, unknown prognosis of 1 to 40 years slowly or rapidly dying in crippling pain. I could be angry at losing everything that I had worked for professionally for so many years, and my family losing our home, our savings and all retirement funds. I have gone through stages with all of this. I am over the loss of material goods. I actually hate money and what it does to people with greed, lack of reality and just how little people give to help others and work with charities and those in need. I don’t get this “woe is me” attitude although everyone around expects it from me. I believe that stuff happens because we live in a dying world. I have bad genes. It isn’t my parents fault or anyone’s fault for my makeup. It is just life. We live in a dying world and everything from pollution, pesticides, stress and all of the unnatural things that we add to this world are to blame. I often joke that someone peed in my gene pool. I have so many major disease genes it could be that I have more than one disease occurring or something completely new that just looks like what I have been diagnosed with. Regardless, none of my doctors understand fully what is going on inside me. And I mean top doctors from across the United States which scares me at times and also gives me doubt about where I stand as far as my time here on earth. But none of us know the answer to that question unless you have a definitive disease in the final stages.
Most of my anger believe it or not is with how my disease has emotionally, physically and spiritually affected so many people. I have always been the type of person that hates the limelight and doesn’t want to ripple the water in people’s lives. I have always wanted to change the world but not affect personal lives at such intimate levels. I see people crying around me, around Mary and about my situation. People are afraid to come and see me and talk to me. Friends that I have known for years that just let things be and hope that I get better. But I know that so many of these people really and truly love me and my family. So I wonder, is there such a thing as being angry at love? I think that it does exist and is one of the hardest things to deal with. You feel guilt for things that you have absolutely no control over. But the good thing about love is that it is love and not hate. Hate has so many things that rot your soul just like secrets.
So what can you do for our family? This is what is asked by so many people when they talk with Mary and me. First, I ask that you pray that I have more good days. Right now, I have so many more bad days than good. A good day is a day when I am not in bed all day and I can reasonably control my pain. Second, I would ask that do what is in your heart when it comes to helping us. If you have cheerful, willing money to help then that is certainly needed. Our medical costs have gone through the roof (ironically we may be moving because of this under a new roof). I hate money but gosh do we forever more need it. If you don’t have money but have time, help us around the house whether it just be sitting with us with your company or helping do a few chores, babysitting or something else around the house. You can also organize a fundraiser in your office or your church. We have information on my www.andybarwick.com home page about the Helping Hands organization. Helping Hands is a 501c tax-deductable organization that collects funding for those in need. Help us or pick so many of the long lists of good people that need help. The list is so long. I want to get off their site eventually and be self-sufficient. Right now it just isn’t in the cards. If you don’t have time or money then let me know so that I can pray for your relief. I think we all need to balance our lives to where we can make our lives “to be of service”. That has been my mantra for so many years. After all, no one on their deathbed says that they wish that would have done less. Helping one another helps to “pay it forward” so that when and if your time comes to be in need that the community you have built and loved for so many years will take care of you.
I know these are tough times. I hope that something in my situation helps your life or your perspective on life. Please always feel free to share your perspectives as well. God knows I am always looking for fresh perspectives to help with the anger, the sadness and the gamut of emotions.
As always with so much love and respect from the depths of my soul.