Friday, July 2, 2010

The Facts of Life

You take the good, you take the bad, you take them both and there you have............A life interrupted with Scleroderma.

It's funny how you sometimes see recurring themes in your life, or signs if you will. I am a believer of signs. I try to trust that there is a plan, and that whatever is happening is supposed to be happening. That there is a lesson to be learned from everything - especially in disappointment.

When I was first diagnosed with the Big S, after the shock and fear subsided, the thought about the "Why" crept in. Not the "Why me?" I had a friend ask me once, Did I ever ask "Why me?" and I told her no. Actually I never had a Why Me Moment - what I thought was, Why NOT me? What makes me any better than the women who have lost their lives to breast cancer or when stopped at a stop light - what made me more entitled than the women in the cars stopped next to me.

It was "The Why Now?" What lesson was I supposed to learn from this. I have lived a life of depth with a past filled with many struggles (teenage pregnancy, single parenting, sexual assault) so my thought truly was, why now?

Sadly, around the same time I was diagnosed there was a public interest news story on about a young mother who had battled and lost her life to Colon Cancer at the age of 35. Wow.. That was so heartbreaking and shocking. Why her? I guess what I thought was how grateful I was to have been diagnosed so early and I just felt lucky.
But in these past 9 months I have revisited the thought about the lesson I am to be learning from the Big S. My thoughts on that thus far is that it is a Huge wake up call. A reminder to start living and the live in the moment. To love myself unconditionally no matter what size or what I may look like, and to stop wasting time. I lived my life for so many years always feeling that I was either not good enough, not thin enough, hadnt accomplished enough, wasn't doing enough, was supposed to be doing more- I had the I'm Suppposed to monkey on my back.
I had a girlfriend who was a stay at home mom, and when I looked at her I saw that she was truly content in her life. She loved being a wife and mother. She loved her life and seemed happy. She was a beautiful girl, but she wasnt perfect, or have a perfect body - she was just her and she owned it - and I had so much respect for her. That she was able to be content with the life she had created. What a beautiful and amazing thing.
No matter where I was in  my life, I was always supposed to be doing more, have accomplished more and always felt like I needed to do. And not just be. And since the Big S I have learned to just be and find some peace in that - but boy is it hard.
Lately I have had a recurring theme in my life. I am adjusting to life after 40 and all that brings with it... things are not bouncing back like they used to, things are not staying where they used to, things are growing where they didn't before (chin hairs anyone?), you don't have the same energy you used to (Sclero aside)... and I sometimes have this subtle wish that I need a Life Coach to get me going and push me in a new direction. Get me going again, but differently.
Then last night I was watching a show and saw the ER Nurses helping to diagnose patients, and I thought - that is supposed to be me. I am supposed to be in the action. I wanted to be a doctor...or at least an NP. I wasn't supposed to get sick. But I just dont have the energy to finish. My life has been interrupted.
Ironically, I was talking with my mom who told me about an article in More Magazine. It was about  inventing yourself after 40 and after a catastrophic illness. There were women in there who after breast cancer and double mastectomy's had changed careers and reinvented themselves.
And to my surprise, my mom told me one of the women featured was a news anchor who was diagnosed with the Big S. The article said she was at the height of her career and was diagnosed. She decided to stop working because she was struggling with the fatigue that comes along with the Big S - and her friends all said she was crazy, that she had finally gotten to the top and she could go so far now.. why would she want to retire from TV. I guess she had expressed that she didnt have the same energy and she could feel her body was battling a disease and she wanted to make her life simpler and spend more time with her family and just enjoying life more. 
I found peace in that. I was validated that someone who "Had it all" career wise admitted that she did not have the energy anymore to keep "doing it all" - I think that allowed me to feel ok that I have taken a breather these past 9 months and haven't been "Doing" like I think "I'm supposed " to. I felt so validated and for me - to feel the permission to feel tired sometimes now is freeing. 
What I realized my life theme is now, is acceptance and rediscovery. I realize that it is okay to reinvent myself. My life is different now and my old life plans will not fit anymore. I have a new normal, and that is okay. 
My goal is to reinvent myself. I am 40 - I am not perfect and I cant do it all. What I can do is find peace in the life I have now, and realize my life lesson to LIVE this life to the fullest every day and to enjoy living simply in the moment. 
I am learning to shed the "I'm not good enoughs" and be proud of who I am now... The Big S and all. But boy is it hard. There is a new lesson altogether in that. There is just so much to learn in this life and it truly is an amazing journey.
So - I am working on reinventing myself. It's been a crazy ride on this Sclero-Coaster, but this is a new chapter and it is going to be okay!
Peace and Love ~


  1. I came across your blog, on Inspire. I so can relate to what you wrote about a woman with a disease reinventing herself. I will be 40 in Sept. and can't work as a nurse any more due to my severe fatigue. Although, I am enjoying being a mom to my two teenagers and a wife to my husband, Scleroderma is not a welcome life companion.

    Funny how a diagnosis can turn your priorities around and make you a better parent and spouse, no more keeping up with the "Jones' or every ones expectations of "who" they expect you to be. It has given me a new freedom, It's hard to put into words, I just feel something new in me toward relationships I never knew before. I think better to be a loving, nurturer for a while on this earth than a self absorbed, push yourself to hard type of human being for many years and losing yourself, and those you love in the process.

    Keep writing I will be reading and smiling and crying along side you in this web journey. Thank you for your honesty.

    Diane Dalton Northern California

  2. What beautiful words Diane.

    Thank you so much for sharing.

    I was a nurse too, as was another follower. I find that so interesting how many nurses seem to be affected with the Big S.

    But as nurses, I think we are born nurterers, so when hit with something like this and we are allowed? Free? to change/put our priorities toward friends and families I think our hearts break open and we are able to feel and absorb so much more of our relationships with the people we love and want to spend our "New" lives with.

    It, like you said, is a depth never felt before and so refreshing and eye opening.

    Not sure if loving and feeling so deeply is a nurse thing - cuz I iknow theres a little Florence in everyone - I just think we're born with perhaps a different ability to express and show it.

    I guess what I am trying to say in my rambling way is - Thank you so much for sharing your kind and beautiful words.

    I hope you have an amazing day!