I've been through something that I don't think most people understand... it's something I don't believe you CAN understand unless you've experienced it. I just finished watching "My Sister's Keeper"... I'm probably one of the last people on the planet to see this movie... and everyone I know who's seen it reports becoming emotional, I even know a few men who've reported shedding some tears while watching this movie...
I had to pause this movie many times to sob... I am beginning to get misty eyed again as I type.. I don't just mean that I found it to be a sad story and it made me cry... what I experienced is something very different. I sobbed. I cried tears that I have been holding deep deep down inside in a hidden part of my soul. I cried tears I didn't know I still had inside me.
I cried for all of those years that I too spent so sick. I cried because it flashed me back to a time that I prefer to forget.. I cried because I suddenly realized how much my illness affected my family. I cried for all the days that my whole family was focused on me and my illness rather than my brother or my mom or my dad. I cried remembering laying on the bathroom floor for hours at a time only moving to lift my head to the toilet to vomit. I remember right after high school getting sicker and the bouts of migraines and joint and stomach pain becoming more frequent and I remember wanting to escape it... that maybe if I just could forget about it that it would go away. If I pretended it was no big deal then it wouldn't be... and in my 20s I remember all the nights I laid in bed before I went to sleep just begging a God that I was beginning to hate to please just let me die already. I cried as I watched this movie because I remember feeling so ugly and disgusting just like Kate did. I was not bald but I was too tired to shower and didn't care anymore what my hair looked like and was embarrassed by the numerous symptoms I had. I cried because I remember feeling so happy for my brother when he got married but at the same time I was so angry that I was "stuck". I remember my life revolving around the tv because tv was my escape. I cried because I remember a depression so great that I do not wish it on anyone. I remember all the thousands of hours my mom spent driving me to and from doctor's appointments, PICC line insertions, ER visits, hours on the phone with the insurance company... I don't remember telling my dad I loved him even once during those years.. I probably did but I don't remember doing it. I DO remember yelling at my mom and dad because I was taking out my frustration on them.. and then I remember crying and saying I was sorry. I remember day after day, year after year being in pain... I remember all the anxiety. I remember feeling embarrassed that I could not seem to take care of myself. I could feel myself reverting back to acting like a helpless child and it disgusted me.. at the same time I just didn't care because I was tired. I remember being embarrassed because I had a huge rash on my face and Bell's palsy. I day dreamed about being pretty again. I remember day dreaming about going back to school and going on a date and falling in love and getting married and having children. I always wanted to have children. I just wanted to have a "normal life". I also remember looking in the mirror and barely knowing what year it was and realizing I could never go to school in this condition. This movie reminded me of so many things I would much rather forget... but it's part of my story.
I am a miracle. Unlike Kate I survived... for reasons we may never know some of us get to keep going and some don't. Cancer and chronic Lyme disease are certainly not the same thing... but dealing with chronic illness and it's effects on the sick person and the whole family is universal. I still do not feel like I deserve any of this life I have today. I think there's some small part of me that still thinks God might have done that to me because He was angry at me or something. The rest of me knows this is not true. There's a part of me that lives in fear that this illness will come back and steal the life I have today. I may not have everything I've always dreamed of... I have yet to meet "him".. to find love.. I probably won't get to have children.. but I DO have so much that I never never ever thought I would get to experience. I had given up on every feeling happiness again. I have a social life again today. I got to go back to school and become an RN. Maybe some of you will read this and suddenly understand why becoming a nurse has been something I have been incredibly driven to do. Becoming a nurse to me is not even about the job or the role of a nurse... it's not about prestige or education or career or money... it's a God thing. It's the only way that I feel I can give back. I don't think that "normal" people can understand what it is like to lay in a hospital bed waiting to die unless you have been there... otherwise it's impossible to truly understand how someone can want to keep fighting desperately but also just want it to be over. Hope mixed with hopelessness.
There is no way that I can ever thank my family for what they have done for me, what they have given up, and how much they have fought for me when I wasn't even willing to fight anymore. I really want to just go on with my life and pretend this never happened... I want to forget but it seems important to remember.
It's important for me to remember so that I never take even one day for granted. I need to remain grateful for little things I have now that I didn't have before... like I can drive, work, cook, talk to friends, and spend time with my family. I get to be Grace's aunt. I don't know if my child was going through all of that if I could have handled it with as much grace and love and devotion as my parents did. My brother never yelled at me for being the one who got most of the attention... it's very humbling.
My mom had a box of old medical records from that time and asked me if I wanted them.. I opened it and started to read and wanted to vomit. I just can't go there yet. It's too painful. I told her to throw those records away. It's in the past. There's so much pain there still. The only explanation for my recovery is God. Nothing else makes sense. God saved me and my life now needs to be about something bigger than just me. I forget sometimes and feel sorry for myself or angry about silly things like someone driving too slow on the freeway or taxes being too high for my liking... stupid things. I've read 100s of NDE's... near death experiences. Whether you think they are real or not is up to you... and I'm not saying I believe all of them but I DO know that what I've gotten from reading them is a spiritual truth.. that when we die we will finally realize what truly matters and it ain't stuff or feelings or any of that... it's love. God IS love. That's all that matters. Maybe my experience with 15 years of chronic illness are a blessing... it's a painful lesson but I believe it changed me in my soul. It's a God thing... that's the only way I can explain it.
It's still so painful to remember....
