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Grateful and hateful

  • November 23, 2017November 27, 2017

It’s that time of year when friends and families gather together to celebrate all that they have. Facebook and Instagram feeds blow up with hashtags like #Thankful, #Grateful and #Blessed. We focus on silver linings and bask in the light and warmth of bright sides.

I am a huge fan of gratitude, be it on Thanksgiving or any old regular day. I wholeheartedly subscribe to the notion that regularly experiencing gratitude improves one’s internal emotional quality of life, as well as one’s physical health. But sometimes I wonder if the push towards gratitude and “positive thinking” is incompatible with the messiness of life. As humans, we tend toward binary thinking- people are either good or bad, decisions are right or wrong, feelings are happy or sad.

We are grateful or we are unappreciative.

Throughout the last 11 years of living with this progressively debilitating disease, I have learned that I can actually hold multiple opposing feelings in one hand. I don’t have to choose one over the other.

I am grateful that this disease has allowed me to evolve psychologically and spiritually and I hate that I have to have this disease at all.

I am so grateful to have a disease that is not killing me and I hate that I have a disease that is slowly killing all of my muscles.

I am grateful to have a disease that does not require any therapeutic surgical or toxic pharmaceutical interventions and I hate that there is still not one FDA approved treatment or cure.

I am grateful to have a physical disability for which there are now so many assistive/adaptive devices and I hate that these same devices require extra time, extra money, extra upper body physical strength and a high tolerance for blisters and physical discomfort.

I am grateful that my disease is progressing in an age when there is access to a variety of electric scooters and wheelchairs and I hate that the vast majority of office buildings, shops, restaurants and doctors’ offices (!) make it almost impossible to enter or exit independently while using one.

I am so grateful that last weekend I got to experience the majestic magnificence that is Yosemite National Park with our good friends and I hate that I didn’t get to climb over boulders towards the waterfall with everyone else.

I am grateful to be able to swim in the ocean where I can feel truly free and be reunited with my pre-disease self and I hate the treacherous and often injurious journey required for me to get there.

I am grateful to be a mother of two wonderful children and I hate how limiting and inconvenient my disease can be for them.

I am beyond grateful that I am married to a man who is truly my best friend and soulmate and who would do anything for me and I hate all of the hardship my disability puts on him and the damper it puts on our (my) fantasies for the future.

I am so very grateful for the love and compassion from all of my family and friends who continue to travel with me on this journey and I hate that this is the journey they have to accompany me on.

I am grateful that I have learned to make room for all of the feelings. It is the only way for me to feel truly fulfilled and at peace.

I wish for everyone a meaningful holiday today.

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