Posted by: sistermom1 | August 16, 2013

Living Large

I used to use this phrase to describe someone who was rolling in big bucks, living in a fabulous mansion, buying whatever they desire for whomever they desire…you know – enjoying all of the material goods that life offers with no apologies for the fortune. Over the past few years the meaning of this phrase has changed a lot for me. After all of the reading, chanting, tapping, praying that I have been doing since being diagnosed in 2005 (otherwise known as “my detour”) I have learned that living large is more about completely filling my own shoes and taking up enough space in the world in a productive and positive way. I am ok just as I am — I have real power and can make a difference in the world — even from my wheelchair.

I have recently realized how small I have been living. Since my diagnosis, my world had shrunken to a very small size — the first floor of my house, and occasionally the passenger seat of the minivan, and maybe a monthly SGI meeting at the community center courtesy of Metro Access. This month I participated in a couple of meetings outside of my home, went on a family vacation, a picnic, had great talks with the kids, and

Lately I have been reading books by Brene Brown, a researcher who has focused on issues of courage, perfectionism and shame ( Although I resisted reading Dr. Brown’s work on shame (I really did not think shame was an issue for me), after reading her other books, I was drawn to it and decided to check it out. Little did I know, shame actually is a big issue for me. I really have been feeling a lot of shame about being in a wheelchair. I originally thought it was about feeling vulnerable, but as I read more, it became very clear what I have been feeling. According to Brown, “Shame is the intensely painful feeling of believing we are flawed and therefore unworthy of acceptance and belonging.” Reading this phrase shook me to my core, because it is exactly how I have been feeling since becoming wheelchair-bound.

Much has changed about my daily life since 2005. I won’t list all of the things that I used to do comfortably and easily before my diagnosis progressed. Just know that the impact on my life has been direct and intense — often overwhelming. The effect often left me feeling physically and emotionally weak, and totally left in the wake of what I used to do. Living a pretty small life when compared to life before my diagnosis. I felt my circle of influence had become very small, and I began to believe that I was truly powerless. To be honest, I was ashamed of feeling this way, and reading I Thought it was Just Me (but it’s not) helped me see not only what I was dealing with, but how to regain control and enjoy my life again.

After reading this book for the second time, I have begun to feel differently about this experience. I am releasing the shame and must share with you my realization that this is not just a detour, but it is my journey. Along with my chanting about creating value through this experience, Brown’s book has helped me be much more clear about how I truly feel about it. According to my practice of Nichiren Daishonin’s Buddhism, this is exactly what I am supposed to be experiencing, and I should not begrudge it, but appreciate the opportunity to learn and grow. I am replacing the shame I felt with action to encourage and inspire others, build a happy and loving family, make a difference in the world, and even bake a fabulous pound cake from this wheelchair. And, after reading Lissa Rankin’s latest book Mind Over Medicine (, I have developed confidence about my body’s ability to heal itself in concert with Western medicine. (More about this later…)

Much is going on with me these days. I deeply appreciate everything that the universe is bringing to me. All of the books, the meaningful emails and training opportunities. It is an amazing time on this journey, and this latest stage has enabled me to begin living a lot larger…..


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