A close friend just told me my blog was depressing last week. Said I was to negative. I want to respond to that comment now.
You need to understand, my life is depressing right now. Some days the only thing that gets me out of bed is the routine and the knowledge that if I stayed in bed I would worry my wife. The fact is I have a monster inside my body that is trying to kill me and there is no cure. There are shots, scans, pills and tests but there is no cure. Don't think about it some say, well I give myself a shot every day of a drug called Kineret and I won't know until February if it is even working. That's hard not to think about.
They say this isn't a cancer but it crushes veins, invades organs, and moves throughout the body in unpredictable ways. People who get this disease...they almost all die. I might not die, we may make enough advances in the study of the disease in the next 5-10 years to save my life. Might and May are my hope, but you think I'm to negative?
What I find depressing is the thought that I won't get to travel the world with my wife when we retire, because the truth is there is a good chance I wont be around to see that day come. I find the thought of not getting to see my four kids grow up so depressing that every time i think about it I cry, but the reality is I might not see them grow up! I fear no longer being able to work and thus loosing my contact with the world.
And every week I lose more weight...
You see this blog is for me! It is here so I can unload my burdens. If it bothers you don't read it! You can join the 95% of the people in my life who would rather just say high as they pass. To which I will smile and you can go on your way pretending like everything is okay...or...you can walk with me through this valley.
You need to understand, my life is depressing right now. Some days the only thing that gets me out of bed is the routine and the knowledge that if I stayed in bed I would worry my wife. The fact is I have a monster inside my body that is trying to kill me and there is no cure. There are shots, scans, pills and tests but there is no cure. Don't think about it some say, well I give myself a shot every day of a drug called Kineret and I won't know until February if it is even working. That's hard not to think about.
They say this isn't a cancer but it crushes veins, invades organs, and moves throughout the body in unpredictable ways. People who get this disease...they almost all die. I might not die, we may make enough advances in the study of the disease in the next 5-10 years to save my life. Might and May are my hope, but you think I'm to negative?
What I find depressing is the thought that I won't get to travel the world with my wife when we retire, because the truth is there is a good chance I wont be around to see that day come. I find the thought of not getting to see my four kids grow up so depressing that every time i think about it I cry, but the reality is I might not see them grow up! I fear no longer being able to work and thus loosing my contact with the world.
And every week I lose more weight...
You see this blog is for me! It is here so I can unload my burdens. If it bothers you don't read it! You can join the 95% of the people in my life who would rather just say high as they pass. To which I will smile and you can go on your way pretending like everything is okay...or...you can walk with me through this valley.
Brad,
ReplyDeleteHang in there! I look forward to reading your blog and seeing how you are making it on this journey. I am glad the conference went well. I am sure you have a lot to digest from those couple of days.
Lockie
Your blog is depressing at times, but it is also well balanced, informative, insightful and at times entertaining. To Hell with everyone who feels they have the right to criticize. Do what makes YOU happy, do what makes YOU feel good!
ReplyDeleteIt must have been hard to hear a good friend say your writing is depressing. But the comment above this is true. Your blog is a way for you to filter the events that are happening to you not just for the moment but every minute you are awake. Being depressed simply goes with everything else. It's not easy and anyone who says "don't think about it" is simply unable to understand. Just hope and pray they never have to experience what you're going through. Try to enjoy every moment with your wife and kids. You are the backbone of your family, They need you as much as you need them. Continue to reach out to doctors, conferences and websites to help you gain information and cope. Thank God your insurance is a safety net to help off set the financial burdens so many ECD patients have. I read your blog and it's a true measure of the person you are and are becoming through all of this. Dream big Pastor. See your kids growing up and you traveling with DawnMarie. All of these things can happen even if it's only in your mind. I heard it said, if you can dream it, it can be a reality. You never know, with your persistence, you just might nudge a doctor/scientist to find the cause and cure of ECD. Get some rest and I'll see you soon. Gloria
ReplyDeleteIts okay, I understand that sometimes my posts are a little blue. I understand that people just want me to be better. But the truth is sometimes you have to walk through the muck of life. It just can't be avoided!
ReplyDelete