What Do I Want To Be When I Grow Up?

Seriously this question is a bit ridiculous at my age since I am going to be 35 in a few days, seven days to be exact. But, I find myself faced with this question once again. I am no longer five years old. What spurs this random line of thought? A collision of emotions and a television commercial talking about kids growing up and drinking milk; that’s what. Who would think something so mundane would prompt me to begin looking at my life again and wondering who I am and what I want to be when I grow up?

The question isn’t really that crazy if you look at my situation. At 29 I found out I had a tumor causing a rare disease called Cushing’s. Talk about a horrible experience. I gained an enormous amount of weight which typically would not be detrimental to one’s thinking but I was training for a triathlon. I was not prepared to not be able to walk around the block and to find that despite a diet of “nothing” I was going to gain almost 100 pounds. I had surgery that was supposed to cure me of this random one-in-a-million disease but low and behold I remain sick five years later and am looking at a few other options, all rare diseases.

Cushing’s nearly destroyed me physically and emotionally until I found a way to let myself think it was only making me a better, stronger person. Honestly, it has in the sense of caring for others, valuing what I have and learning to let go of what I do not but I cannot help falling back into a random day of what could have been. Oddly, I help many others deal with their rare or not so rare diseases and find it quite rewarding except when you get one of those people who just will not let anyone help them, including themselves. It is kind of like being an alcoholic, you need to want to get better or redefine yourself; so some people just cannot be helped. During these random days every year or two I wonder what the hell I am going to do after all this is over and when exactly that will be. Having some of your prime years taken away as well as some options for your future is just not something easy for someone to deal with who was successful and “had it all.” If I was still in my former career I would be worth more than a million dollars right now but low and behold I keep looking at my bank account to see if my monthly disability checks have come in so that I can save some money for my next surgery or a shopping spree in order to keep my life going.

I had to fight for three plus years to get my disability and just recently got it. Now that I have it, I find it a good way to supplement my stay at home activities. Online shopping to update my wardrobe is something I am redoing to make my new body look better than it really does since the changes have been so drastic (my mind is still trying to catch up with the changes as it does double takes when I pass a mirror). I often feel the need to shower people who have stood by me all this time with gifts; not the best use of my money but it makes me feel less guilty about having to borrow money in the past and my major mood swings caused by my disease(s). I bought an Xbox 360 to give me a toy to play with and a Nintendo DS for the long doctor visits which usually are a lot of waiting. Also, I have supplemented my book addiction because going out and being around people still makes me very sick. So I can only imagine what a library book crawling with germs would do for me. Don’t worry, I donate them to charity after so it is not all pure pleasure and a waste of funds. Besides, I get to play with people online and chat on the computer. Oddly I find writing a good outlet and a way to let others understand why I do the things I do now since I have changed so much, and besides people really should be prepared for a life-altering illness or at least understand it as someone they know will probably go through one. Writing is just a hobby but who knows maybe I should and will to be a writer when I grow up. I told everyone in high school I was going to be the editor of The New York Times. Not sure that I will aspire to at this age but I am not willing to give up while I look for what to do when I grow up. Anyway, people need to understand that this is not a “poor me” story when it is really about empowerment. Let’s face it, learning to deal with the shit life dishes out is always a lesson we can benefit from. Other than that, I am also trying to save for a house, pending of course the ability of getting someone to offer a mortgage to someone who lives on disability with no real time frame.

Many people think I am such a strong and brave person so rarely do I find myself able to break down and allow myself to feel the misery these diseases have brought me. Hey, two rare diseases is wonderment to the medical community and when people say how strange that is, I remind them I am just a very unique person. Yes, I am better. I am happy, and I am alive and living to fight another day. I should be proud of this attitude. I still want to fight this mysterious opponent but it gets tiring and I find myself needing to melt into a pile of emotions of “what would have been” had I never gotten ill or something along those lines. - Especially when I think about when I am going to get better and what if I don’t. - What mark I’ll leave this earth with as I am not a believer we live our lives for nothing. The universe gave us a life for a purpose even if it is just to make your mother smile or win a Nobel Prize. See, I do have a lot of options and so does everyone else; it is just a matter of how or if we take hold of them. Ha, this is the first writing I have done in months but it feels right. Maybe I should pay more attention to those TV commercials for inspiration.

Not knowing what lies ahead is a very scary experience and even more so for someone who had a fabulous career and pockets full of money (a lot of debt living that life but it still looked as though I had it all). It is funny; I have more money in the bank now with less debt than when I was working full time. I am not allowed to work now and it frustrates me but I also know I cannot possibly do the long hours and not lay back in my couch even as I write. Heck, I have to shop online because the mall is to stressful to my body but at least I found a solution and now look like I want to live when I walk out the door instead of like a bag of rags the maid threw out. I guess once and a while we just need to let it all out, our tears and fears for someone in my position, or we will end up going crazy. People think it is a sign of depression but since it only happens once a year I am going to peg it up to fighting so hard that the exhaustion just demands I take an emotional break to put life in perspective and think about what it is I want outside of getting better.

This year I married the most wonderful man and I know one thing I want is to make him the happiest I can. I guess he would not have married me if he thought I was going to be the “give up” type of sick person or life obstacle defeatist. Let’s face it my condition is very similar to other major life changes and we all need to learn to deal with them. It is just a matter of getting people to see them in the same light and that they can take charge of the outcome; even if I am sick forever I still can make a difference and change myself and hopefully help others at the same time.

As for 2009 I am not sure what comes other than continuing the good fight and trying to maintain the person I am and that is loved by many…at least I think I am. That is the other thing, being in this condition makes you wonder what people think of you and do they still think you are the person you were before all this. Frankly, I hope that they think I am a better person than I was before all this. I still want to make people proud of me and be proud of what I do with my life even if it isn’t perfect.

So the question still remains…what do I want to be when I grow up? I think I already am that person but now I need to find the answer to - what do I want to DO when I grow up? That is the puzzle I am still trying to work out and maybe you have some ideas. I am open for suggestions. One thing I plan to do, no matter what, is to start a non-profit organization to help people in health positions like me facing medical debt larger than the Empire State building and trying to live a good life with a positive attitude. Even if we just help them with the food bill so they can have a healthy meal would make me proud. But right now I need to wait on that since I don’t have the energy to do it all myself…in the meantime, I guess I will keep watching commercials for inspiration and answers to some of life’s questions. I’ll keep making jewelry (or actually do it instead of just design it), maybe start painting again and work on writing to figure things out since it seems to help me gain some clarity.

As far as what I will do when I grow up, I am still waiting for a sign. In the meantime, I will keep working on fighting to gain my health and energy back to make some of these dreams come true.