I looked back and realize that it has been almost one year since I posted my story of my journey. So much has happened so where do I begin? I guess it is best to start where I left off.
My AVM is responding! Great news! I have been introduced to group here in my hometown that is raising awareness and funds for AVM research as all AVM's are not operable as of this moment in medical history.I got to see my son graduate from high school with a GPA of 4.1929! He is in college with a full ride due to his accomplishments and my financial situation!! Great news!My son still remains my hero.
The remainder of my story may seem sad and it was to me at the moment but I now take from my journey even more strength than I knew I had, more support than I knew exsisted for me.
I was engaged to a man by the name of B. Jolly, a hospital administrator. Notice I said was. When I fell he accompanied me to my first visit to the surgeons office. Note pad in hand he listened to my diagnosis and asked questions as I sat in utter disbelief as the docotr said I had a 13% survival rate without surgery. I was focused on coming to terms with my diagnosis and he was focused on the information at hand. I was emotional he was practical, we made a good team in that reguard.
My surgery date approached and it had already become clear to me that he was not going to handle this well at least not the way I needed him to handle me. I needed to be held. I needed to be reassured. I needed to feel safe. He needed to act as though nothing was wrong. He needed to pretend I was not going to be changed. He needed to drink and escape. I couldn't escape my own brain as it was turning on me.
I tried to return to work and life with the same expectations of those around me. I am strong. I can do this. I was wrong and unfaithful to myself. I was not as kind and caring to myself as I was to those around me. I did not want to admit I had a brain injury.
I have had a Neuro Physcologist help me navigate my journey but not until recently did I accept that it is what it is, a brain injury. Partly because I didn't want to beleive it myself. Ironically enough my fiance's director of nursing taught classes on living with family memebrs with brain injuries and since I didn't have a limp, didn't have a speech problem or any other visable signs he felt he didn't need to go. I allowed that action to minimize what I knew to be true, I have a brain injury and need understanding. It was that daily denial on my part and his that brought us to a point of separation. I still love him and mourn the loss of my future with him but realize that although I have no choice but to live with my brain injury he did have a choice. He chose no to live with it. He chose not to understand it. I chose to do all I can to understand it and recover to the best of my ability.
I started to do extensive research on AVM's and their impact on my brain. I found that every issue I was having were right there in the description of AVM's. I felt empowered as I was not crazy, I was not a damsel but I was a patient. I had a meeting with a group here in town that assists those with brain injuries and although I thought they would not be able to help me because truly I didn't have visable signs of an injury and I am not that sick. It wasn't until their letter of acceptance into tier program came that I realized I have a brain injury. It is in writing. It is as plain as the nose on my face. I became a bit calmer, I had finally accepted it.
I have a meeting with an attorney to help me with SSDisabillty as it has become clear to me that my days require me to approach even the simplest task from a new direction. "I do not have disablites" I used to say but have "new abilites". Although that still remains the same my new abilites keep me from working in a "sustainable" manner. That was hard to admit. Just like any other road to recovery starts with "admit", admit to yourself, to others and to God I had to do the same.
I have lost my future husband. I have lost my precious dog of 14 years. I have given my son his wings and he is gone from my home. I have lost my abilty to work and the financial choices that came with it. I have lost friends. I have new friends now. I have a new dog. I have a new understanding of myself and my goals as well as needs. I have help now from my doctors and groups and my attorney. I will never be Mrs. B. Jolly but I am happy. My son spends more time with me now than before because it is planned. I have a new life and it is good. I am happy.
Thank you all for taking this journey with me. Thank you for giving me the place to go and feel safe. Thank you for being the strong people you are and giving me the strnegth I need to do the same. Thank you for being my friend.
WOW...That is an amazing year! Thank you for keeping us posted!
It has been quite a ride so far and the best is yet to come. Hang in there girl... it seems like you lost so much but you and I know you gained so much more. ;) I hope that site has helped a little and continues to help in your struggle. Thank you for the warm and wonderful update and I hope you're feeling well. No matter what, we're always here for you. Thank you again.
Thanks for checking on me!