Marking my Nine Year Anniversary...

"Into Your arms I entrust my spirit and my healing while I sleep and while I wake. And with my spirit and my body also, as long as You are with me, I will not fear."

I have recited this prayer almost daily for the past several years after discovering it (and modifying it a bit) in a book called "Jewish Paths towards Healing and Wholeness". Many days I pray it over and over again as a form of meditation.

Today, I mark my nine year anniversary of getting sick.

I mark it this year, as I do every year with mixed emotions, and my coined phrase of 'grief and gratitude'.

When I first got sick nine years ago at age 22--one month and one day after graduating from Davidson--I never anticipated that I would still be sick nine years later. My thirties certainly felt VERY far away! I felt that I had so much time--so much time to get better and still get on with my life, marriage, family, career, schooling.

Now, I find myself continuously redefining my dreams, redefining what getting better means, and redefining what a life will be for me. Suddenly at 31 I don't feel like I have all of the time in the world to get better without losing so much more time. I'm having trouble not being 'in a hurry', not losing patience, and holding onto hope when it's needed the most. At the end of the day, I try to remember Steven Spielberg's favorite ending: HOPE, but some days this is more difficult than others to achieve. For the first time, I've found myself really struggling to say 'this IS a life, it's just a different path...'

Since turning 30 and watching a couple more anniversaries go by, I have struggled as I watch my friends settle into careers, marriages, new homes, and having babies. While I joyfully embrace my friends' joys and accomplishments (I wouldn't wish anything but happiness for them), I admit to a bit of sadness and coveting on my end of things. This has been my greatest challenge of late: to be happy for them, to grieve my losses, and to find value in my own life.

When I read the book Gilead (which I could hardly get through...Blach!), the writer of the book spoke to me deeply on one front. She said that the commandment "Though shalt not covet" is one that is impossible to keep. This very spiritual novel reassured me that I was human to covet, human to want these things that I thought would be mine, human to covet being out in the world like my friends and family.

Some days I try to imagine what it was like to move freely in my body and I can still just grasp what that feels like, but it is almost as if I have been sick so long that this ability to feel that muscle memory, or even cognitive memory, is fading. Just the other day I spoke with a friend who also danced and now also has POTS--we both spoke of dancing to Enya. The last dance I choreographed was to her song Ebudae and I often try to imagine what it would feel like to dance again.

I continue to struggle to find ways to feel full in my own life, as most days I am too sick to engage in activities that nourish me creatively, intellectually, emotionally, spiritually, physically and socially. Aaahh, but this is another topic for another day for another post!

Lest I end this post sounding as if life is a complete downer on this anniversary...there is also much to be grateful for. This brings me to another Jewish prayer recited each morning upon waking:

"I gratefully thank You, Oh Gracious One, for restoring my soul to me."

I understand that this time is NOT 'lost' time. I understand that I have learned more spiritually and emotionally than I might ever have learned in my lifetime if it weren't for this illness. I have learned so much and am always eternally grateful to those who support me with love and kindness, especially my parents.

I am also grateful that as I mark this anniversary we can truly say that I am in a better place physically than I was a year ago at this time. It's very slow (tortoise pace), but it is there if I watch for those subtle changes in pain or sleep or energy. This gives me a better sense of peace that we may be on the right track medically. The pace is a bit scary though--I may not have been too far off when on my 30th birthday I labelled this a 'decade of healing'.

Does my 'grateful section' of this post seem shorter than my section on grief? This is for two reasons: First, I have been grieving more lately and experiencing a 'dark night of the soul' more deeply. Secondly, I hope that my gratitude has already, and will continue to come through in my other posts which tend to focus on the 'ups' in my life. I hope my other entries reveal that even when I grieve, I cherish life and sustaining love.

Perhaps as my friend Marla said in an email to me about my journey: "I'm reminded of a line in an Anne Frank movie I saw once (Mary Steenbergen played Miep Gies, the Dutchwoman who befriended the family): "Every day more [of waiting and hiding] is just one day less of it." It's a rather profound way of looking at things that must be endured."

Perhaps each day of enduring this difficult Lyme treatment IS one less day of being sick. I do hope so and pray so. In the meantime, I grieve my losses and joyfully embrace my blessings. I work every day to make my life a blessing, and will continue to do so, illness or not.

Blessings,

Emily

Photos: Our redbud tree in early spring. Our irises in full-bloom in June.