It is April 2nd and I am remembering Monday, April 2, 2012. What a special day. Four years ago today Dr. Sander Connolly saved my life. I remember meeting him for the first time. The first thing he said to me was “You have no other option you need brain surgery.” Then he went on to say if not, I would probably be dead in 2-3 years. So today is a celebration of life because I have passed my life expectancy.
The past 4 years have been a learning experience. Learning to love myself. Learning the order and volume of numbers. Learning what my limitations are and sometimes having to change my usual order to accommodate the new order. Learning and understanding what Brain Flooding is and what a large place in my life it plays. Learning to ask for help when I need it. Learning to do it myself as often as possible. Learning that at 57 years old (or 4 years old depending on how you look at it) life is just beginning and not ending.
I know I cannot take care of or please everyone else and that is okay. Sometimes you have to say “no” to people you love because it is not good for you. Sometimes it means you are not going to hang out with the gang or go to parties, bars, etc. because the overstimulation will put you in bed for a week. It is just something you deal with because nobody knows what it is like and they do not know that anything is wrong because you look fine on the outside. Sometimes it means letting them think whatever they want about you because, you really do not care what they think. It actually means feeling sorry for “small” people who have to talk about others or bring someone else down because it makes them feel better about themselves.
Yet still, after dealing with this I was asked to be a moderator for a global brain aneurysm group. Wow! My dear Sander Connolly is on the Board! It feels good to help others deal with their experiences. Sometimes that is by sharing experiences, or connecting them to resources or simply giving them a shoulder to lean on and an ear that will listen. Sometimes it means offering to sit in Tampa General Hospital while a total stranger gets her first angiogram for her newly diagnosed aneurysm. I remember 4 years ago when they helped me with my recovery. It feels good to pay it forward there, for others.
So on this 4th anniversary of my brain surgery, I am the luckiest person in the world and I remind myself of that every day. I do have to learn not to care about the extra 20 pounds. I have a husband who still takes care of me in those little ways that he thinks I do not notice; who loves me and loves exploring our new city with me. I work with great people who have become such dear friends. On this my 4th anni-versary Dennis and I will go out for a celebratory dinner. We realize we are both so extremely lucky and I AM ALIVE!
I think in March I had a premonition. I must have known in some way that I would be leaving Dr. Connolly. I cried, but he did not know that. I relocated to Tampa in July. It was a good thing to do professionally and personally. It was a perfect time to begin an amazing adventure in a place I had never been. I was having trouble remembering that two years ago I thought I may die and now I was being asked to take on a challenging task, well I never would have thought this would be happening. Even without the physical challenges I have been through, many people at my stage in their career are being hidden in an inside office while the new graduates are being primed to take over. I felt honored that I still had so much to give. So I told Dr. Connolly that I was moving away. I told him that the first thing I asked my firm was for them to guarantee that I could come back every year for my annual check-up with him. I was not going to go if I could not keep him as my neuro-surgeon. They told me I could (sigh). He told me it was probably the best thing I could do for myself and that he was jealous. He said it would work out perfect. I would get my scans done each year here in Tampa and then fly back for my annual with the results in hand for him to review. Well that went well, so why am I crying? Probably because I will be hundreds of miles away when I was so close. Probably because I knew that if anything happened, he was right there, now he isn’t. It scares the crap out of me ….
Well it is almost my 2nd anni-versary. I have to call to get the script for my CTA scan. I had a dream last night that Dr. Connolly was telling me during my annual checkup next month that he was leaving the hospital and moving away and I had to find another doctor! Could there be anything worse? So, that dream tells me that I am a little nervous. It may be partly because I feel good and I worry that something might be lurking there in my brain. Partly because I might be doing so great that my dear Dr. Hero might tell me to get lost, I do not need him any longer. I cannot think of anything worse happening. He is my safety net and I will never give him up. He is stuck with me and I plan to tell him so when I see him. How do you cut the tie with someone who did what he did? Someone asked me if I had a crush on him and I laughed. I said that I guess I did, but in a different way. When I think of him, I see his hands, not his face. I am not sure anyone else in the world other than someone who had brain surgery or open-heart surgery can understand that. So, next week the countdown begins for the annual checks and balances of 2014. Each year is a celebration of another year that Dr. Sander Connolly has given me, and I thank him for that gift and treasure every single moment.
I feel so selfish, is it possible? I am at a place in my life where I need to take care of myself. A few months ago I accepted that and told (convinced?) myself that was the right thing. I felt empowered by that and could feel myself get stronger; I felt my life come together in so many ways. I was mentoring people in the aneurysm community, attending meetings, taking care of myself. Work was going great. It was all just falling into place.
Those who have been following may realize all the negativity that was in my life on top of the brain surgery. Right after the surgery, my dear Aunt Ruth passed away, my sister went to jail, my nephew became ill and dropped out of college (possibly an excuse to live a life like his mother, but that is his choice and I had to separate myself from that), my niece threatened suicide and asked to live with me while I was still trying to heal myself.
All of this made it so difficult to spend time taking care of me. Then, because I wanted to take care of me, I felt as if I were a selfish little witch who only cared about herself. How dare I not care more about a suicidal 13-year-old than myself? How dare I judge my 25-year-old nephew who wanted to lay home in bed and not get a job yet complain about his mother who did the same thing her whole life? How dare I complain that I had head pains 24 hours a day and did not really feel like shopping and cleaning the house on the one day I had off after working 6 days for over 12 hours a day? How dare I not care about everyone else more than I cared about me?
Well, just as I was about to break, life fell into place and all the boulders on my back fell away. They seemed to take care of themselves before I had to take drastic actions in my life. I was able to take care of me. I started seeing a neurologist and the headaches are gone. I started seeing a therapist and corporate coach and life has found balance and work is wonderful. I started attending aneurysm support groups and mentoring others and I feel as if I have something to share and I see myself making a difference. I started working on myself and my needs and I lost 25 pounds.
Then the email came this week while I am in the Philippines, my niece is in the hospital and has threatened suicide. She wants to talk to me. What do I say that will not break her young heart? What do I say that will tell her how much I love her but also help her understand I have to love myself too? Will she understand she cannot live with me? Will she understand I am not equipped to parent her? What if she does not understand and something happens to her, is it my fault? Will I be able to live with myself? I know I will not, I know my sister will not, I feel lost as if I am floating and very alone.
It has been far too long. Months actually. I have graduated. Yes, you read that correctly. I have graduated from monthly neurologist appointments to every three months. I feel as if I am “normal” again. The meds are working like magic. It is sometimes hard to remember the last time I had a headache. I actually made my neurologist smile the last time I saw her, which is also a major accomplishment.
I cannot wait to see Dr. Golnaz Moazami and Dr. Sander Connolly and tell them how great I feel. I still send Dr. Connolly my email now and then so he does not think I have forgotten him. How could I ever forget the man who saved my life?
So, I welcome in 2014 and say that I will continue to be my own Champion! I will celebrate me! I have lost over 25 pounds. How, I’m not sure, perhaps a combination of everything. I have been eating properly since the summer but I was just not in the right frame of mind, so maybe feeling well has something to do with it. My neurologist says the meds also can cause some weight loss so that coupled with eating right and feeling good all hold hands I guess.
I leave in two weeks for the Philippines. I am excited but also a little nervous. This will be my first time since right before the aneurysm so it will be so good to hug my Nak. I need to see my team and I feel they need to see me, at least I hope so. I need to feel the warmth of the sun on my face. I need to remember a time long ago when there were no worries. I need to return to my second home.
Well it has been two months since I started taking care of me instead of taking care of someone else. It feels good. Yes, perhaps it is selfish, but good. I feel healthier. My headaches are subsiding. The neurologist I am seeing has tweaked the meds and they are helping so much. The days where I do not have to take any pain meds are beginning to outnumber the days when I do. That is a major accomplishment.
My niece seems to be doing very well. I still get nervous when I speak with her that she will want to come back and I really do not know what I will say. I would want to say yes but I know that I cannot. I know that I am not healthy enough to take care of her yet. I know I still have to worry about me. I also know that it feels good to be able to worry about me again and I need to hold onto that for a while longer.
I realized how angry I am at my sister for letting her daughter call me from a mental hospital and ask me to allow her to live here. What did she expect me to say? How could she put me in that position not even 6 months after brain surgery? How could she do that to me? To her daughter? How could she still not know what she did? How does she still not understand what she is doing to everyone? I am angry yet I know I will not say anything to her because I understand a little better what she goes through every day and my being angry at her will do nothing to help her or help me.
I started attending a support group for brain aneurysm survivors. I cried at the first meeting because the neuro surgeon was speaking about the area of the brain where I had my surgery and he discussed changes in personality and visual perception and numbers. It all started making sense and I just cried. Then I noticed the woman next to me crying also. We just looked at each other. Nobody else could understand until you have been there.
The parking garage for the meeting was on the fourth floor and you had to drive up a circular incline. When I got there I thought, “Whose bright idea was it to have a bunch of brain surgery survivors meet here?” We are lucky we all made it. Funny though, you could tell who was going to the meeting by the way they were driving up that incline.
Dennis’ cousin Rosalie had a brain tumor 12 years ago. She is doing great. Every time we see each other, we start jabbering about things only we could understand. The whole “bald spot” problem, the headaches, the drinking, etc. Stuff others do not get. It is like a very private club. I saw her last week and it was great to catch up.
I received the thumbs up from Dr. Hero for long flights. I am ready to return to the Philippines. Scared to death but ready. Wow, I have not been there since before surgery. It will be an amazing homecoming.
Well this will be the quickest post ever (I do know I have been lacking lately). I have had 7 days this month headache free! I cannot believe it. This has not happened since my craniotomy last year. I spoke with (another term for emailed with) Dr. Connolly, and he gave me the thumbs up for flying to the Philippines. I cannot wait. I miss everyone in my adopted family so much. Now I actually feel comfortable going knowing that I will not be in constant pain the entire time (and acting like a little baby).