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Part 6: Our Lives are in a Constant State of Construction
We are who we are, basically. Some things about us are simply genetics. But other parts of our lives depend on so many other factors. Experiences, upbringing, health. I could list 100’s of things that impact our lives. Each of us is in a constant state of construction.
How Could Yesterday's Health Have Affected Today's You?
Warning: This post may get a little deep in self-reflection.
When I started this series, The Emotional Side of Gluten Free, this title (State of Construction) was not one I had in mind. But my guess is that many who have lived for years with unnecessary challenges due to un-diagnosed celiac will be able to relate to this post.
How different would life have been? How different would life be now? (This is not about regret or self-pity, by the way.)
Why Would I Be Different If Diagnosed When Symptoms Began?
This question would be answered differently for each of us, depending on the affects un-diagnosed celiac had on us, of course. I’ve read time and again, for example, of women who struggled with infertility who then became pregnant once gluten free. And, as I shared in another post, some didn’t discover the impact of gluten on their health until after those child-bearing years. It can leave a woman with the question, “Was gluten behind my struggles with infertility?”
How often, however, does the result mean children a family couldn’t imagine living without? Families brought together through adoption. There is often a whole lot of beauty that shines through.
Today
Before we move on, let me emphasize something. Today is what we have. Today is often more powerful because of the challenges of our yesterdays. It is ALL life experiences that creates this person you are today. There is always something beautiful that can emerge from the rubble.
While yes, I’m reflecting on some personal “what ifs” in this post, it is just that, reflection. And it is motivation to reach those still un-diagnosed. I have a never-ending need to reach others and help them reach their fullest, their healthiest, and their happiest potential.
My Was
For me, living with un-diagnosed celiac meant a deficiency in living. Huge lack of energy and motivation. Feeling unwell through a big part of many of those years. Issues and consequences connected to being malnourished.
My health affected not just me, but it affected my family. It affected my family as a child growing up, and it affected the family I created as an adult. And in reflection, I wonder how many in my family (my mom? my dad? grandparents?, siblings?, and on and on) were possibly impacted by un-diagnosed celiac. I’ll never know the complete answer to those questions.
I’ll never know how different my own life would be had I been diagnosed when symptoms began. But it’s not something I put a lot of time and effort into thinking about. I do wonder sometimes, though.
Life Since September 2000
A diagnosis that followed a lifetime of symptoms was amazing. Wonderfully positive health improvements.
What followed, however, were some big life changes of another kind. They say that moving, divorce, and job change are life’s biggest stressors. Well, stress became a side dish to this amazing chance of health I was blessed to be served.
Would This Roller Coaster Have Been Less Hilly?
Gluten impacts me not only in a physical way, but emotionally as well. I was a crabby (unhealthy) kid. I was a moody teen. Very moody. Whew, maybe it was normal teen stuff, but I wonder. I wonder how many of those mother-daughter explosions would have been less emotional had I been gluten free (because I know how much more reasonable and focused the gluten-free me is).
I don’t like the me when I’m glutened. There is no reason for anyone else to like the glutened me. It makes me sad to know I lived that way for so very many years. It makes me sad for those I could have been better for, including myself.
But it also drives me to keep doing what I do, knowing there are so many others living that same life.
Premonitions
1) Life's Ups and Downs
There are two recurring dreams I remember having. One was of me on a roller coaster, at the top, with no place to go but down. That fear was greater than any I knew. I remember starting that plummet straight down, and I remember being so relieved to wake up before I hit bottom.
I’ve been blessed to discover that this roller coaster (that is life) does always go back up. Even that most devastating plummet, on February 19, 2012, (that I wrote about in my book, The Syrup Maze. Not gluten related, but it does include another frightening reality: Hospitals and rehabs are not always prepared to safely feed their patients who require gluten free).
But life’s roller coaster crept back up even then, and gradually made it back to the top.
I haven’t had that dream, by the way, in several years.
2) So Many More Doors To Discover
The other dream I had over and over became extremely significant to me as life went on. It began with me in my house (or what was “my house” in my dream). It appeared to be a very small house. But as I walked through, I soon discovered SO much more. My house was huge! So many more rooms. Endless rooms to explore.
And this has been my life. And this is anyone’s life. There is SO much more than what we see in front of us. Unfortunately, however, we too often don’t discover the existence of those other doors until we are forced to seek them out.
If we are able to let go of that “woe is me” (which is a challenge sometimes, I know—I’m working on that one right now as I type)–but if we can allow ourselves to be open, we allow ourselves to discover the scenery that another path might take us.
Door One Slammed Shut
I found myself single two years after I was diagnosed, at a time when I was finally living healthier and happier than I could ever remember being. This was the year 2002. I’ve certainly moved past this, but this was my life after my diagnosis with celiac. Two separate roller coasters. One going straight up, the other going straight down.
I’ve certainly moved on since then, but divorce isn’t easy. Rejection. Picking up the pieces. A family broken. Going through the motions. Sharing the kids on holidays.
The kids. It wasn’t just about me. I had three kids I needed to be present (and my best) for. Unfortunately, “my best” wasn’t great at first. It took some time to pick myself up and kick myself into gear.
Steps
I remember my dad. One of our conversations. Me crying. “I should go back to school. I need to go back to school. I don’t know how to go back to school. I’m too old to go back to school.”
My dad: “Stop crying about it and just do it!”
And he was right. I needed to hear that.
So that’s what I did. One foot in front of the other.
And I Wonder (Sometimes)
If I had been the me (that I am gluten free) during all that time, during all those years, would our marriage have even lasted those 20 years? Was it “less than” for more reasons than just my health? Would I have been strong enough to take that first step to move on? Would I have already had my education degree? Would I have been teaching through all these years, financially able to retire?
Or—would the marriage have been better because *I* would have been better? Was it all “my” fault?
Funny how being sick can leave a person with guilt over not being a better person (even though I had no blame in not knowing). But I felt the guilt of not being a better partner. And I feel the guilt of not having been a better mom.
I know I would have been a better mom had I been gluten free back then. I certainly wasn’t a bad parent. But I sure would have been happier. I would have had more energy. I would have had more patience. I would have had more ambition.
Of course, “mom” and “guilt” are just two words that go great together, like chocolate and peanut butter.
Clarification
*I am NOT remorseful over that divorce any more. I haven’t been for several years. It was a raw part of my life, however. It is a reality that I’m sharing with you—-this big part of my un-diagnosed celiac life.
It certainly contributed to my state of deconstruction. And more, it contributed to my state of construction. It forced me to work harder on building my life and the person I am today.
Like I said, life always offers new doors to open. I allowed myself time to grieve and to heal and to move forward with the single me before I started dating. Let me tell you—that whole dating thing was scarrry! But I did it. It became fun. An adventure. And just as I was ready to put my dating life on hold (while I finished my last two years of school) along came Steve (who I am now happy to share the rest of my life with).
I always struggle deeply with life changes. All I want is to feel settled. Life has other plans for me, however. “Settled” isn’t in my cards. Divorce and job loss are devastating for anyone. Its far from easy. But who wants to remain in a crumbling heap on the floor?
Passion For Celiac Awareness Is My Constant
Once I was diagnosed, at the age of 40, I could feel my strength build, literally. I became not only stronger physically, but emotionally. And with this, and with my awareness of the fact that so many others were living this life of unnecessary health issues, I developed a need to yell it from the roof tops.
I had the will, the need, the confidence, and the drive to create a support group. I wanted to connect with others who were already diagnosed, and I needed to reach those not yet diagnosed.
Celiac advocacy became a BIG part of my life.
Strength Emerges From The Struggles
Yup, my life would have been different had I been diagnosed as a child. But one thing’s for sure. Had I been gluten free since symptoms began, I would not be writing this blog today. I would not have known the impact gluten had on my health. It would have just been who I was, not who I became. And who I became is a person who greatly needs to impact others through celiac awareness.
There are many who I have reached and impacted who may not be living life to the extent they are experiencing without the answers they discovered through my advocacy. And this—THIS—is a need and a never-ending drive.
Conflicts
But this drive battled within me with another drive, another need. Security. Finding myself newly single, meant I had to make some life choices. I had only recently started working part-time after 15 years as a stay-at-home mom. I now needed to find a way to support myself.
So—-back to school I went. And, at the age of 47, I graduated with a degree in Early Childhood Education. I can honestly say that this is one of the biggest gifts divorce has given me (besides the man I now share my life with).
We are in charge of our own direction, but sometimes it takes a little discomfort to get us to move.
Something Had To Give
I went from major self-pity, and yes, even a year of anti-depressants, to “Look at me now!” That fear transitioned into self-confidence and higher goals for myself. Those years of being back in school, selling my house, and moving on and forward, and yes, dating again, also meant something had to give. That something that had to give was my involvement in the support group I co-founded. And this was another very sad separation.
While physically un-involved, however, I never could totally leave it, if only in ideas for the future, when time would allow. And eventually I did pick back up, just in another way.
And That Roller Coaster Continued
Life moved forward. I was immediately hired after graduation. I was now a PreK teacher, and I loved it! And a year after starting my new job, I was remarried. Life was good.
But then, after teaching for three years, our state budget crisis meant many PreK classrooms had to close. Here I was, age 50, a career developed, a plan and passion in place, and now I was spending hours a day packing up my classroom. I found myself hugely displaced, and sad beyond sad.
Back To The Drawing Board
Damn, this was hard. Of course, had I developed this career in my earlier life, I’d have had tenure. I’d have had years put into a pension I could rely on (or hope to be able to rely on). And I’d certainly be bringing home a bigger paycheck! But now I was back in that, “What do I do now?”
The Transition Back Into Celiac Awareness
Temporarily unemployed had me putting focus on an idea that had come to me years earlier. A children’s book that helped adults understand gluten free.
I self-published and I thought, “This is why. This is my direction. This is my purpose. This is what I’m supposed to do.” Kids were my life, celiac awareness my passion. Maybe I was supposed to provide this resource, helping kids who need to be gluten free..
This book continues to be an effort, and continues to be a resource for families, but it certainly wasn’t, and isn’t, enough to make a living.
A Blend Of Celiac Awareness And a Job I Loved
I finally found work. I was able to remain in my field, just in another direction. It was not as amazing of an income as a teacher’s salary (yes, I’m being funny here; we all know teachers’ salaries aren’t amazing–but it had been good for me). This new job was one I loved. I finally felt settled. This job was perfect, and seemingly secure. (Insert laugh track here–and many, many tissues.) Things don’t always work out as planned.
Maintaining My Passion For Celiac Awareness
Each time I’m at the bottom of this ride, I become stronger in my advocacy efforts. And each time I hear my little voice telling me that THIS is my purpose. The human brain fights hard with the spiritual side of me, however. My brain tells me I need that concrete source of security that comes under the headings of “job” and “pension.” My “little voice” tells me I should be putting my efforts into this passion—celiac awareness.
Yes, I wonder what life would be like today had I always been the healthy me that I became at 40. But one thing’s for sure, I would NOT be the me who is sharing with you today. I would NOT be the me who advocates for celiac awareness and testing and for gluten-free safety for our kids in school and for patients in hospitals.
I'm Not The Only One
I know I’m not the only one who lived this life of “Wow!—finally an answer!” after years of not knowing what the heck was wrong. I’m certain I’m far from the only one whose life would have looked differently today had the answers come more quickly.
I’ve learned so much in this past dozen and a half years. And I’ve learned that I’m not done learning. I taught myself (years ago) how to self-publish (and have since learned how to improve on my archaic beginnings). I taught myself (years ago) how to create a website and blog, and now I’m learning how to create one that’s better. Improvements. Life is always about improvements.
I started out with a lot of question marks, “What’s my purpose here?” And now, I’m taking what I’ve developed into and I’m learning more. I’m developing more. And I’m holding on to the hope and the vision of reaching far more people than I ever did before. That is the dream.
I fantasize about a world where everyone who needs to be gluten free is. It shouldn’t have to be such a battle, but it is.
Stay With Me Through My Life's Construction
Life. We can’t reach for something higher when we’re in a place of complacency. Well, we certainly can, but too often we just don’t. These efforts and changes only occur when life makes us uncomfortable, (or we sit in front of the TV in self-pity and escape. And yes, I’ve done my share of that).
We are never done working on building our lives, are we. I sure feel that I am under a constant state of construction.
Stay with me. Move forward with me. Together, let’s reach those who are like we once were, wondering, “What the hell is wrong with me?”
Let’s work on preventing others from having to live a lifetime without answers.
The Emotional Side Of Gluten Free
A 12-Part Series (discussing the highs and the lows)
