I gratefully thank you, oh Gracious One, for restoring my soul to me.
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.
May I be peaceful,
May I have ease of well-being,
May I reach the end of suffering,
and be free.
-- My Morning Prayer--Adapted from Different Sources including Judaism and How to be Sick by Toni Bernhard--
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| My Favorite Place |
7. My Story Is One Of Hope When We Think Hope Is Lost. At my last appointment with Dr. ANS, he remarked to me that my case was one that reminded him to keep hope alive even when it seemed like there was not hope. And I consider this guy an optimist! He's never wavered in his commitment to bringing me to improved health, even if inside his heart he felt it might never happen. I have seen over 100 doctors in the past 17 years. I have been told that I am one of the most complicated, complex, challenging and REFRACTORY cases ever seen by any of these practitioners. I am in awe that I have been given this gift of improving health.
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| Sunset Outside Our Condo Window In Sunset Beach, NC |
8. It's all about the TEAM. Where I am now health-wise is all because of the team of people I have assembled: Dr. ANS, Dr. GI, Dr. Listener, cardiologist, pharmacist, massage therapists, physical therapist, counselor, acupuncturist, naturopath, etc. To all of the 100 or more practitioners I saw before I found this team I want to say: "I listened to my body. I did not take no for an answer," as a geneticist at Hopkins so wisely told me to do in 2004. Dr. ANS is by far the most instrumental human being in my healing. It took 6 years from the day I got sick until I found Dr. ANS. It took until last year to find the team I have now.
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| Pine Cones |
9. I Feel Sad About Babies. I still feel sad about not being a mom. Some days it feels like a cruel joke that so much healing is occurring at the end of my childbearing years. This is made even harder when I look into the eyes of the man I love and think about how I had always dreamed of having a child together with my life partner. I am keeping my heart open to what life has to offer in the way of children. Adoption. Or maybe no children at all. How far can my healing go? Can I reach a point of being well enough to care for a child (with the help of a village)? How much can I ask of a partner? Of family and friends? I don't know. I'm still not at peace about this part of my life. Just today, I read David Brooks's editorial piece Hearts Broken Open, in which he discusses finding life's meaning. "I was struck by how elemental life is," he writes. "Most people found their purpose either through raising children or confronting illness and death." Even my Ph.D. pioneer of a mom would say her greatest accomplishment is having me.
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| A Dreary Day |
10. There's No Such Thing As 'Catching Up' On 17 Years of To-Do Lists. I Also Probably Owe You Something. Every time I get behind (which is all of the time), or especially during times of crisis (a lot of the last 17 years), we attended to what we absolutely had to and left the rest for 'later'. This has resulted in BOXES and BINS full of papers and things to be sorted, cleaned, responded to, etc. My inbox alone has thousands of messages. I always thought: when I feel better I will write that testimonial for the Lowchen breeder we used, I will write those thank you notes for all the flowers/gifts/kind gestures I received, I will get those photos organized, I will...I will...I will. What I'm finding is that I'm doing my absolute best to keep up with the NOW and I'm still behind, so there is just no such thing as catching up. I don't know what this means will happen to the 17 years of STUFF that has been piling up. And I guarantee it means I owe you a baby gift, a wedding gift, a thank you note, an email, a phone call, a birthday card, a new job card, or a zillion other things. Letting go of the fact that you won't get these things is really really hard. I probably even have a card that I bought and never got written to you.
Every day I am trying to figure out how to catch up, how to live in the present, and how to look ahead.
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| Sunset Outside Our Condo at Sunset Beach |
11. How I Remember June 18, 1998. I woke up with a flu-like illness that was different only in the fact that it was accompanied by an unrelenting migraine type headache that persisted for days along with chest pain and shortness of breath. This happened one month and one day after college graduation. I never returned to my previous level of functioning.
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| Breathe In, Breathe Out! :) |
12. Going from Illness to Wellness is a Process. It's at once exhilarating, exciting, wonderful, glorious and terrifying, confusing, and full of trepidation. I wonder if this is really going to continue? Will I ever be as sick as I was during those most awful years? What will relapses look like now? For 17 years, I have mostly been part of a world of the sick, a world in which I felt like an outsider looking in, like an observer of life. Now, I am finding myself somewhere in between the world of the sick and the healthy. I'm much less of an observer and much more of a participant.
Figuring out a new balance is incredibly challenging. I've been pretty greedy with my new freedom. I just want to do EVERYTHING. And NOW! I want to grab the bull by the horns. I want to say YES to LIFE! Part of saying yes, though, is also saying yes to staying in, saying yes to down time, etc. Right now, staying in and down time are much-needed but I realize they are scary because they remind me of so many years of not having any other choice.
Having so many possibilities and choices is a good thing. It's also a very new and difficult thing.
I feel almost manic. I shop too much. I go out too much. I eat too much. I push too hard. I say "yes" too much.
I'm not complaining. I'm just sharing what is a new and different balancing act for me.
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| Sunset Beach Pier |
Blessings,
Emily
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