A New Story

Vulnerability is key to story telling.  The best stories are open in the scary way.  The "what if they don't like me anymore" way.  Willingness to tell the story, to be vulnerable, is how we form human connection though.  I keep trying to get a new start with this blog.  I keep trying to figure out what I'm going to write about now that the African Adventure is over.  I keep trying to avoid writing directly about the one BIG, major thing happening in my life (my last few & far between posts have dabbled in it).  I decided today was a symbolically perfect time to go ahead and write about illness.   I introduced lots of people to the realities of expat life in Africa, so why not introduce you to this reality.  (Raise awareness, right?)

Today is September 26th, 2012.  One year ago today, I woke up ill.  The illness got worse in the days after September 26th.  I was diagnosed with malaria.  I evacuated from West Africa.  I spent days in a European hospital.  I completely changed the plan I had for the next year of my life, because the illness did not end.  I left my life in Sierra Leone, I spent four solid months separated from my husband, and I quit my college courses (the third time I have set aside my degree aspirations), because the illness grew.

In February, I finally got a name for the illness.  Celiac Disease.  So many things became clear in the moment I heard those words.  I'd been sick for many years.  It was a slow sick.  So slow.  I had clues it was coming for a long time.  Little things had been off for years.  When I woke up sick on September 26th, 2011, it was just the culmination of Celiac's arduous progression.  It wasn't malaria at all, it was a Celiac crisis.  It was the mother of all misdiagnoses.

I immediately went 100% gluten-free.  I didn't get well though.  By May I was regularly in the E.R. with severe allergic reactions and suffering from crippling anxiety.  That was when I began learning about the Paleo diet & the connection between my autoimmune disorders (Celiac Disease & two others).  For the second time in less than a year, I dramatically changed my life in order to attempt to treat the illnesses I am facing.

Since May I have learned volumes of information about the link between diet, lifestyle and illness, especially autoimmune disorders.  I've learned so much not only about navigating our health care system in the U.S., but also about its nature.  The way it functions compared to other countries, the way it serves us and fails us.  I have improved my health in many ways and I have had numerous set backs and plateaus.  I have had a few wonderful highs, thinking I had conquered illness completely and I have had many valleys, realizing this journey . . . even though it is already a year old, is far from over.

I have had moments of clarity where I suddenly see the connection between sick rivers and sick people.  Bad soil and bad hearts.  The way that greed on a grand scale is literally starving us.  There are some, like those people in that other country that we don't see, who don't have enough food.  And then there are some, like us, who are getting sicker and sicker eating pound after pound of non-food.

I'm not a saint though.  Life, mine anyway, probably doesn't have enough lucidity.  I've had actual temper-tantrums over the foods I can't eat anymore, even though I know it will make me ill.  (Don't get me wrong, I have had an iron will 'cause I really, really don't want to be ill, but that doesn't mean I have always done it gracefully.)  I have cried gallons of tears wondering why I have to have a disorder that has attacked my own body and why it has to be so difficult to heal it.  I have had arguments with doctors and my husband.  I've privately carried heartbreak over things as simple as going out to eat with friends.

My goal is to start blogging regularly about this journey.  I want to tell you all about autoimmune disorders.  I want to tell you about how I eat to maintain and hopefully long-term improve my health.  I want to tell you about other people who eat like me and how it has improved their health.  I want to connect the dots between how we eat & our health (physical & spiritual) & our world's health.  I want to tell you about what good days are like and what bad days are like.  I want to tell you how having this experience has changed how I relate to others and how I understand the ways that illness impacts individuals and families.  I want to tell you about some of those insightful moments and be really open and vulnerable about the bad moments.  I want to tell you some new stories.

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10 thoughts on “A New Story

  1. I am also on this journey and it is good to know I am not alone.

    I have not yet found the right balance of keeping the details of my illness and efforts to heal through better nutrition to myself and sharing with others. I'm glad you are choosing to share.

    Reply
  2. Jackie

    I am listening! I,too, have shed many tears over the foods I can no longer eat. I have come to dread going out to dinner. This has been a particularly bad week -- reading this reminded me I am not alone.

    I applaud your courage to open up. There are few who know my struggles.

    Reply
  3. I think you will be pleasantly surprise at how many people out here are suffering along with you. Can't wait to follow your stories. I am only gluten intolerant, but something else is wrong, and I have to find what is causing my illness. Thank you.

    Reply
  4. Thank you for sharing! Even though I suffer from auto immune disease, and am in pain every day, I seem to torture myself with food, knowing that I shouldn't eat certain things but just don't seem to have the will to not eat them.

    Reply
  5. Anonymous

    Thank you!! I still struggle. I haven't yet reached that point of being able to give up the foods I enjoy - in spite of a heart condition, horrible pain in my belly, headaches, joint pain and insomnia due to eating them. I keep trying though. The good days are amazing. The bad days are all consuming. I hope for peace with this before I've done too much damage to go back. I'm sensitive to gluten, sugar, nightshades and dairy.

    Reply
    1. Jean

      You could be describing me. I was doing really well after two years (with occasional small slips, mostly traced to traveling, and holidays), but the small slips have turned into longer and longer stretches, and I finally tipped the balance. Headache, joint pain, uneasy stomach, all when I woke up this morning after an unsatisfying sleep.

      I'm committed again. Feeling good, sleeping well, having reduced or even no pain -- it's worth it. I had achieved those. I know it's possible. I hope it can work a second time.

      Reply
  6. Anonymous

    I am so pleased for you that you have found that food will heal your autoimmune conditions. I look forward to reading of your blossoming into good health 🙂

    Reply
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