Shock, Denial, Anger and Acceptance

Grief…it’s a funny thing, okay its really not funny at all but it is peculiar. Ironically my favorite rockstar has an album named shock, denial anger and acceptance. For him it represents his depression. For me those four words represent the last couple years of my life.

The shock occurred when on a typical Friday afternoon I got a phone call from an LA detective telling me that my daughter was involved in a serious accident. That part of my grief lasted for quite a while. I think I walked around the campus of Cedars Sinai with a look of shell shock and zombie like auto pilot demeanor the whole time we were there, 46 days to be exact. I guess the private jet to Chicago snapped me out of my shock a bit. Denial set in as I settled in Chicago. Seriously, I am living alone in an apartment, visiting my brain injured daughter every day?

Anger…that was a tough one for me. I remember feeling anger after Lauren’s shunt surgery in Chicago when she briefly left RIC for surgery at Northwestern. That was the first time anger reared its ugly head. We were only a couple weeks in to inpatient rehab I and I was just learning the ropes of being a caretaker for Lauren. She was still pretty helpless, she could barely hold her head up without support and or coaching. She was incontinent, and was hard to change due to her inability to move her body. The staff at Northwestern wasn’t competent in dealing with a patient with such specific needs. I remember the nurse trying to administer Lauren’s thrush medicine. She asked her to put the medicine in her mouth and swish it around. I thought, “Are you kidding me? She can’t even hold up her head.” I explained to her that she received her medicine via a sponge wand that needs to be placed on her tongue. The next snafu at Northwestern was when Lauren was brought down to CT and brought right back upstairs. They were unable to get the scan because (as was coldly explained within earshot in the hallway), this patient can not follow simple directions.” This is about the time I lost it…I was mad at the world and shamefully I was mad as hell at Lauren. “Why in the hell did she feel like she could cross a 5 or 6 lane road when the caution light was blinking don’t walk? Doesn’t she realize how she has changed my life? I just want to go home, sleep in my own bed, be with my husband, her siblings, go to work and play on the weekends. Is that too much to ask? To add insult to injury she had just been diagnosed with C-Diff and was needing to be changed every 10 minutes. I took it upon myself to take over those duties, it was a dignity thing and I wanted to protect her from outsiders feeling pity for my formerly independent daughter. Luckily Dave had flown to Chicago to be with me and could see I was struggling. He took over waiting for discharge papers and to go with her as she was transported back to RIC. I went back to my apartment to regroup.

Acceptance…Ah that is a strong word. To acceptance I offer a big fat “screw you!!” It is over two years since my grief began and I refuse to accept our situation. In the early days when I was still in shock, I was told that if my daughter lived she we most likely remain in a semi vegetative state. Her future looked bleak and most likely she would always need long term nursing care for her very basic needs. Sometimes I really struggle with my present situation. Logic tells me that things will always be difficult but logic also told me that my daughter would not survive her injuries. It is not always so easy to be  positive. I realize many people pity me for my optimism, you would half to be half crazy to believe Lauren will return to a “normal” life. Good thing I am a little more than half crazy…I am a certified nut case! I am good at pulling it together. In the words of my favorite movie quote from Bridesmaids, “Carol, get your shit together.” I use that often. Back in St. Louis I am busy with my family and it is easy to hold it together. When you set the example for half a dozen other people, hiding your grief is easy peasy, in the silence of Omaha, it’s not so easy.



The Sunday before Lauren moved in at QLI, we went grocery shopping. I bought some celery. For anyone that knows me….I do not eat fruit nor vegetables so even thinking about eating celery is a big move. I told Lauren that as she started her tough journey on Monday, I would do something tough like eat celery. As I drove away Monday night, I stopped at the store and bought the biggest milk chocolate candy bar I could find. It is now the second week and I am feeling pretty disconnected from everything that makes me who I am. I am on the outside looking in. It is hard because I realize that I am exactly where I need to be but I am just so sad. Without having to hold it together for anyone here, I am falling apart. I have had mornings where I literally make myself sick from emotions and throw up. I try to always find the positive even in dark situations…One positive observation is that I bet celery would taste awful coming back up….I wouldn’t know because I haven’t had any yet. The butter pecan ice cream carton is nearly empty though. Another positive is that I am not throwing up  due to pregnancy related morning sickness. Today Sept 2nd I declare that my  pity party is officially over. I said to myself this morning, “Carol, get your shit together.” I put on some lipstick, my figure flattering spandex bike shorts, and hopped on my  bike to clear my head.

Lauren is where she needs to be and she continues to amaze me. Aphasia just plain sucks… I realize that if she would not have had that portion of her brain removed, she wouldn’t have survived, so for that I am thankful and I can deal with the aphasia for now..…  It will take time but she will get there. Life isn’t supposed to be easy, we got this and I truly believe we are on our way to greater things. The road to recovery often feels like it gets longer and longer. That's okay, because Mama Murphy will not accept what others feel is the future. People do impossible things all the time, I believe in the human spirit and more importantly I believe in the power of prayer. I know that God has put my family on this earth to work together for something amazing. Murphy's rule and they sure as hell don’t quit! In the meantime I will stay in limbo on the grief scale because acceptance is just not happening until I see my beautiful girl walk off into the sunset happy and healthy and whole because I am bat shit crazy and will not stop pushing until that happens.