Currently I’m living life from a different perspective or vantage point then I was ten or fifteen years ago. Honestly, I thought “faith” and personal work ethic would create a domino effect that would lead me to walking without pain. (I currently have a disability which hinders how far I can walk. There is tension and tightening in my abdominal area.)
I thought I would have time to share my story through writing. I pictured myself throwing a baseball with my son, or go on day trips with my kids. I thought I would be dreaming of ways to spend a weekend with my husband. Or maybe I would be able to even clean my house.
Often I express disappointment in low moments when I am attempting to live my full life. Regularly my body starts shuttering and my insides start to shut down. The physical response to that emotional reaction is to curl and hide. It’s a reaction of retreat, the body feels studded and unavailable. This is what the pain is doing; if I’m not listening to my body so I don’t go overboard; if I’m not dimming the stimulus of screaming kids or clattering dishes or slamming doors, then the result is shut-down mode.
I am reevaluating why I would like to live. I’ve been in pain far too long. I’ve stayed active, but don’t feel alive.
In this post I share:
As I go back in memory and return to the beginning of my chronic illness story I know that I have been keenly aware of my surroundings. It is a type of super power, to be absorbent to what is actually happening during the day, and linking it to how I feel emotionally1
When I was beginning my inner-awareness journey it was totally overwhelming!
My spouse often reminds me that he enjoys the intentional life we are living and we honestly wouldn’t change it…but, I still desire to be healthy, so I’m still learning and listening to my body as my evolutionary process continues. And yes, I do believe that living intentionally creates a personal evolutionary change inside me.
(I will continue to highlight the subject of intentional living though out this post.)
This week I was talking to Scott, my oldest son, and we were planning out the events for the day. Because it is summer and because he has a W I D E-O P E N schedule he had been watching plenty of TV. I was trying to encourage him to think of something that we could do outside. Something that requires movement for the mind and the body.
He suddenly wore his wide-humorous grin and said, “Mom, you know what I want to do tonight.” I only thought about it for a whole two seconds and realized it was the Major League Baseball Allstar baseball game that happens in the United States once a year. This cute kid wanted to watch the year’s best players on on field.
(Side note: My boy Scott is motivated by MLB. He unloads the dishwasher, first thing, every morning just so he can watch the previous day’s highlights. I love the incentive because I have clean dishes in the cupboard everyday!)
This annual game has a specific memory link, for Curtis and I, from seven years ago. We all had dinner together before the baseball game and I made it a point to share a family story with Scott.
This is intentional living to me: Communicating with people during moments of real connection. (Not when we multitasking or just saying “hi, how are ya?” in passing.) Meeting them, seeing them and adapting to relate to where they are. Usually this involves asking questions, and stopping to listen.
With Scott, he usually doesn’t have much to say, but I keep trying. Often I don’t have much to say either. I’m not a chatty mother, but this day I told him our family story that had to do with the MLB Allstar game.
In 2015, when our second son Weston was a baby, my Grandpa came to “the city” (five hours away from his home) and checked himself into the hospital. He wanted to see the doctors that who were currently taking care of him. I believe he wanted to be monitored for a couple of days to figure out what was going on. He hadn’t been feeling well.
My little family lives in suburbia next to “the city”. On a night he was in the hospital, we went to visit my grandpa to say hi.
I remember sliding baby Weston in his right arm that was resting against the side of the hospital bed. Weston was cradled between my Grandpa’s arm and chest. Baby Wes was four months old, so he was small, and he was calm and easy to hold.
As I slid Weston into my Grandpa’s arms, he said, “Some of us are coming into this world, and some of us are going out.” Such a simple statement, and I felt sad as he said it. I wondered what he knew and what he was talking about.
This was a man I grew up with. Someone that I saw everyday in the summer and three times a week during the school year. His office, where he worked as a civil engineer for our small city was around the corner from my house.
After his two day hospital stay he drove back home.
My Grandpa died two weeks later. The day before he had a day of magic with his grandkids and then that night his body was done. It literally gave out overnight.
As I’m telling this story to Scott, I say, “So, what does that story have to do with the MLB Allstar game and our memory tied to it?”
“The last time I saw Grandpa alive we were watching Allstar game with him when he was in the hospital bed holding Weston. Your Dad and I will never forget that.”
Chronic pain had already played a part in my life before I had conceived Weston. The week that he was conceived I had been to a doctor’s appointment where we reviewed that extensive blood results (that I had previously sent in with the help of my practitioner). The P.A. that was reviewing the paperwork asked if I was pregnant. She could tell from reading the blood work that my cycle was late. When she asked if I was pregnant, I told her no. We had tried to conceive, but it hadn’t happened yet. She replied, “Please don’t get pregnant right now, we need to take care of your body and get it healthy again before you have another child.”
The biggest news I received that day was that I had a the two variations of the MTHFR gene mutation, which isn’t helpful for the functioning of the body. (At a basic level, with this gene mutation the body isn’t able to fully break down folate and utilize it in it’s broken down form.)
Back to the story…
The next week the nausea started, and I knew these signs of pregnancy. I had felt this before. I didn’t have time to take care of my body (so it seemed) so I started my second pregnancy with a warning, but at the time I was not yet on a personal health journey.
Six weeks after giving birth to Weston the metaphorical stormy clouds started moving in. My head felt so heavy. The only description with words that I had “It feels like rocks sitting on my eyeballs”. I began the pregnancy with a healthy thyroid, but now had an under-active thyroid. I literally couldn’t move without convincing my feet that it was a good idea.
I was so discouraged. All the loss-of-energy weight felt so heavy. At the same time all of this began I also felt that I had a blood sugar imbalance. The label for my specific imbalance was called “Reactive Hypoglycemia”. At a physical level it meant I would eat, and get a headache as a result of high blood sugar, and then about a half hour after eating the hero the pancreas kicks in and says, “I’ll send insulin to the rescue” as it secretes into the system then the blood sugar get very low, leaving the body sluggish and feeling low.
There isn’t a medication to take for this condition. What it initially meant was NO sugar for me. It was a serious health risk if I ate sugar with delayed pancreatic support.
I was still dealing with chronic pain, and I remember the day when I was laying in bed, my family was at home, but I felt so alone. That dark day I relented. I knew that my diet had to change.
It is not the case for most people, on their health and wholeness journey, that they address diet first. For me there wasn’t a medication that I could take to help my condition (except for synthetic thyroid, and I reluctantly started taking that after under-active thyroid was flagged.) I hadn’t ever been to “talk” therapy. The only practitioner I had in place was the P.A. that told me not to get pregnant yet.
My goal was to get my blood sugar under control.
I could feel a difference in my mood, the heaviness in my energy and the headaches if I didn’t keep my blood sugar in a low grade roller coaster motion.
The summer of 2015 I had a new baby and was thrown into the learning curve of how to save my body.
I was rapidly loosing weight. My nerve function was so disconnected, and the health of my body was so depleted that rapidly my muscles started to shrink. This put a lot of stress on the tendons. I couldn’t just quit life. There was a baby and a toddler to take care of. Basic movements were necessary.
That same summer, at the end of July my Grandpa died. My health was compromised and I was inundating myself with holistic health reading materials. My study lead me to diets that could possibly be helpful for reducing inflammation and diets specifically to help the symptoms of fibromyalgia.
The idea was drilled in that sugar leads to inflammation.
This was the period of time that I show up at my grandpa’s funeral. I loved this man, I was often by his side at the family ranch or in his home. He was at all my home sports games watching me play. He regularly took me to “the city” when he traveled out of town.
We stayed at my mom’s house that weekend, but my uncle’s house was a gathering place. We ended up at his place over and over again for meals or to gather with extended family.
I watched the outpouring of love come in, specifically with food. Following cultural norms, love came in the form of food!
The first day I was at my uncle’s home I saw well-meaning people come with sheet pans of rice crispy treats. Full-sized boxes of cookies. Pans and bags full of dinner rolls. Pans of cinnamon rolls. With my sick body and my inundated mind, I only saw sugar flood in those doors in the form of “white carbs”.
My uncle has a large kitchen with an eight to ten foot island counter top. The counter was covered in mostly white foods, including the deserts that had been received. There was probably some ham. I remember a swarm of people lining the bar serving food over the countertop. One by one, I’m standing and witnessing the scene, questioning—Can’t anybody see what I am seeing? Is nobody questioning what I am witnessing?
My anxiety was high already, but it was a numbing feeling. The experience was isolating and completely draining.
On day number two of the gathering (again at my uncle’s house, around the same counter top) a friend that loved my grandpa, made dinner for the whole family. He made fry bread (which is like an American scones) and brought everything for Navajo tacos. I ate some chili beans that were available. My blood sugar crashed and I was so low I ended up leaving in tears. I literally could not eat anything available.
At my parent’s home a neighbor brought over a bowl of cooked crooked neck squash. She had melted cheddar cheese all over it. It was steaming and looked rich and gooey. It was such an amazing gift, but I chose not to eat any because of the cheese.
I chose not to because I was breast feeding Weston. He was five months old, and it had been clear to me, for his sake and the sake of his health, that dairy was not what I should be eating.
I misjudged what I could handle. I thought I could be part of my family and be close to them, but I was sifting and mourning as I entered the biggest learning curve of my life.
My insides were screaming that weekend! It was flashing massive red signs! Indicators to STOP—but stop what? What I didn’t know at the time, but I know now—it was all too much. Deep down inside I wanted to die.
Through the sensory of pain, and sensing through what I could see, all the anxiety was saying was POISON, they are all POISONING THEIR BODIES (in the form of white carbs)! What are they eating? Why is this the social norm? It was obsessive but it was also involuntary reactivity. And at the time I didn’t know what else to think.
After that weekend I remember telling my mom, who had just lost her father, that he ate himself to his death. I apologized later. My grandpa really did love a good treat! His eyes sparkled while eating desert.
I was so sorry that I was REACTIVE during my personal health crisis! I recognize this was my way of dealing with my pain—angering out. It was a way of me handling frustration that I couldn’t explain.
To tell you the truth, I don’t remember eating during that weekend stay, except for the bowl of chili beans. I’m sure I had to, but I was so confused with what I should be eating.
The other sad, but hard truth was I don’t remember the funeral at all. I remember where I sat in the church. Other than that I don’t remember anything said. I was so consumed with my inner grief.
I knew seeing food as POISON was the begging of an eating disorder. As soon as I went home I started going to therapy and kept going therapy shopping until I was pointed to a therapist that specialized in grief and loss. Becky was gentle with me and listened to my grief. She was a stepping stone in my therapy journey.
It was clear to me when I started therapy that an eating disorder wasn’t the screaming issue (although it got me in the door). It was my time to mourn. Mourn this body that wasn’t working. Mourn the letting go of the food that I had been accustomed to. Mourn that marriage wasn’t working out the way that I envisioned it to be. (Same with parenting.)
I was in pain, and my body was shrinking and I had no idea what to do.
This story is the beginning of my SCRAMBLED mess! Obsession and reaction were cues that I had no idea what to do. The clouds of isolation were clearing as I entered my next phase and all I could see was my baby. If I’m going to live, I’m going to do it for my baby and allow him to have a mother by his side.
I used my agency (or personal choice) and chose my Purpose to be:
Second, I started adapting to him.
Weston’s skin was peeling. It was apparent that a rash had formed covering him from his head to his feet. As I ate, breast fed, then observed him, I watched intentionally to see if his skin would flare up or not. I was eating a Paleo Diet faithfully from the time his was six months up until he was one. He seemed to do better if I ate this way. If I ate avocados he would usually get a rash, so I didn’t eat them. He was mildly allergic to eggs (according to the allergist I saw). I cut out eggs. When he started eating table foods he ate what I ate. Around his eight month mark is when he started to table foods easily. He liked everything except green beans. He hated green beans, and his body hated them too. They would come out the other end quickly (within hours of eating them)!
Third, I took this time to really connect with baby Weston by:
I cherished the days I had with him. He smiled every time I set him down. He was easier to have (then not to have) because helped the whole family to smile. He would laugh when I put him to bed. (I wish that was still the case!!)
I still had a long way to go. Years of experimenting ahead. Pain and suffering that I wouldn’t wish on anyone, but I was taking steps. The first steps focused on him, and for that phase of my life it kept me going.
The following chart is the preliminary stages of living with intention. I have created this illustration specifically for people with chronic illness. The answers for each stage of life will vary. This example is specific to my personal story.
Notice as I discovered my purpose, I had a reason to live. I questioned what I could change. Then I took an actionable step. This does not feel good at first. And it is contrary to how my life was previously lived.
At the beginning of this post I wrote about the health challenges that I am still experiencing. These symptoms indicate dysregulation that is happening in the autonomic nervous system. This year I have regularly been experiencing disassociation which is also a autonomic nervous system response. I define the specific word “disassociation” in this blog post.
During my experience this year (in 2022), I have felt the lowest forms of depression, which in turn has led me to the basic level of intentional living again. I will continue to use the chart above to illustrate the choices that I have made this year to balance the branches of intentional living, once again as I progress in my personal health journey.
>>>Remembering what true connection looks like. Read more in this blog post: Digging into Depression, Productively
I love studying the researchers of quantum physics, because their studies and finding link possibilities that genes can change! (Bruce Lipton is my favorite scientist to learn from.) Also as I studied the work of Anthony William, he gave inflammation the credit the MTHFR gene mutation, when it was flagged in the blood work. And then he credits inflammation to a whole list of environmental factors.[↩]
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