Windows Open, Windows Close: A Lesson in Willingness

What does it take to build the life you want? I’m learning that such a road is not so simple to construct.

Since October 26, I’ve been trying to establish the healthy habits I need to give myself my best chance at a happy and fulfilling future. For over three years I’ve been struggling with symptoms stemming from a genetic disorder (homozygous MTHFR C677T). During these three years, my life has consisted of working, commuting, therapy, going to doctor appointments, and recuperating from all of the above. I am tired all the time and, as a result, have missed out on so much. The physical symptoms have certainly been challenging and I never really know how I’m going to feel the next day. It has been deeply frustrating and has simultaneously exasperated a lot of emotional baggage I’ve struggled to get past.

When I first got the results from a blood test that positively showed the genetic mutation, I was relieved. For years, I had been complaining about constant fatigue, bouts of dizziness, aches, and sporadic issues with my breathing. Doctors repeatedly told me that I had an anxiety disorder and placed me on Zoloft to mollify my complaints. They also gave me an inhaler in case my lungs acted up; which, for the record, never, ever worked. Even though I didn’t quite agree with the diagnosis, the medication seemed to help the breathing troubles and for about a year, I came to believe that the doctors were correct. I dismissed the fatigue and the dizziness for stress and hypothesized an inner ear issue. However, when the breathing issues came back, even after almost 2 years of being on Zoloft, I knew something more substantive was going on.

On one particular day, I was having an especially difficult time breathing. It wasn’t that my lungs weren’t working, it’s that my throat kept tightening to the point where it felt like it would close – but never actually did. I was frazzled, annoyed, and felt completely let down down. I had been willing the suck up the aches and discomfort, but the breathing troubles honestly scared me and I didn’t know what to do. My family had also become fairly dismissive of my ongoing complaints, telling me that I was being dramatic and needed more activity in my life to be healthier. But I thought I had things handled and under control; I had done what I was instructed: I took the medication, went to therapy, did yoga, and had a full-time job. What the heck else was I missing?

It was around this time that I had spoken with my aunt about my cousin who had been battling a particularly brutal exposure to mold which was causing substantial chronic symptoms (including chronic fatigue). My aunt had begun to think I was similarly afflicted.

I went to my primary care doctor with this information and lots of heaving. However, when I told her about my cousin, she dismissed the issue for the mere fact that she had never heard of such a thing. She then gave me a prescription for Xanax and essentially told me to go calm down.

The neurotically obedient part of me wanted to do as I was told, but the part of me that did not get better after taking said Xanax, was pissed and wanted answers.

Finding an Alternative

After hearing this story, that same aunt suggested I meet with her naturopath to see if he could provide answers. I was a little hesitant to see someone who didn’t have a MD and questioned his ability to provide real answers. But I was also desperate.

Expecting the doctor to ask purely medical questions, I internally ran through all of my symptoms, ready to provide an accurate timeline of all my unhealthy on-goings. However, for the first 30 minutes all he asked me about was my mental health and the emotional challenges I’d long been battling. At first I thought he was leading me back to the anxiety disorder diagnosis, but instead he ultimately showed me how deeply the trauma of my childhood and early adulthood were continuing to affect me. He also suspected that I had the MTHFR genetic mutation, which would explain the confusing symptoms.  

He told me he could help me build the physical health practices I needed, but that I would never be fully well if I continued to drag the emotional pains along with me. I had briefly mentioned the alcoholism that had killed my step-father when I was 16, the taxing 2 years my parents took to divorce, my mother’s difficult parenting and challenges with NPD and BPD (narcissitic & borderline personality disorder), and that day in 2011 when she told me not to come home. Even though, by that appointment, I had spent at least a year in therapy, those events and issues were still deeply latched to my life and I felt like I was suffocating.

So when the results came in and confirmed that I am homozygous MTHFR C677T (I’ll try to explain what this is in another post), I was relieved. I finally had an answer.

And then what followed, was the crushing impact of defeat.

Working Down the Timeline

For twenty years, I had been trapped in a suppressive household with a mother whose love was inconsistent and had to be earned through an erratic merit system. During those years, I desperately wanted to make my mother happy, and in so wanting, gave piece after piece of myself away to image myself in the form she prefered. Of course, that preference constantly changed and my success was never possible.

It took everything to walk away from the only love I thought I would ever have. For even though her treatment of me was deeply damaging, I never stopped craving her approval.

While that relationship ended abruptly, there was nothing else clean about the cut. For one thing, I had, and continue to work through, an eating disorder and substantial self-loathing. Up until one year ago, I had to keep a blanket over my mirror out of shame for the way I look. I am a 27 year-old woman and I can still feel my mother pinch the skin of my stomach, derisively snark about my “fluffy” attributes, and threaten surgery for an already fixed under-bite because she feared I would become disfigured.

By that appointment though, I had spent some time working through the emotional bruises and thought that I was doing fairly well. Yet, when I realized that having a genetic disorder meant I’d have symptoms for the rest of my life, I felt all the doors I’d shoved open slam shut on me.

As I saw it, this disorder was another prison and that my very short window of freedom was over. I had already given up my entire childhood, teenage years, and early adulthood for my mother and now this health issue was claiming all the years that would follow.

For the following 8 months (about), I had horrible brain fog that wiped out my ability to problem solve, I was drowning in constant fatigue, had deep aches running through my neck and shoulders, could not retain an ounce of new information, lost chunks of my memory, and struggled to understand words when people spoke to me or when I tried to read. Even though we knew about the genetic mutation, we still didn’t (and to this day do not) know the full causation for these symptoms. Nor did we know how long they would last and/if they would return.

Windows Open, Windows Close

Fortunately, the symptoms did lighten up that spring and I was ready to pounce on a better life. That opportunity ended up being in Washington, DC at a climate organization. When I got that job offer, I promised myself that I would fill this opportunity with all that I have and that this window of health would not be for nothing. And so I did. I was the first one in the office and was often the last one to leave. I put in every effort to each of my tasks and strived to be as dependable as I could be. I then carried those habits into the job that followed.

And when the symptoms starting ramping back up last fall (2017), I chose to ignore them, push through, and see how far I could extend my limits. I wasn’t ready for my window to close.

Of course, my window did close on October 26 when I ended up in the ER, tapped to a bag of fluids, and reprimanded by doctors for my very evident symptoms of exhaustion. Once again I felt defeated and angry at the Universe for impeding my ability to live a full life.

But within all of that anger, I sought something that could help me see the situation differently and give me the strength to pull myself together. For although my symptoms are challenging, they are not terminal, and although they are uncomfortable – sometimes substantially so, they are not debilitating.

Willing a Different Perspective

That’s when I decided to start this blog and track my wellness journey. That’s when I knew I was finally ready and fully willing to tackle my whole health.

Here is what I am able see now, that I wasn’t able or willing to, back in 2015: my health is not a prison. It is my opportunity to give my body, mind, and spirit all the love, health, and attention it needs and was deprived of for so long.

To be clear, I am not dismissing the challenges it brings nor the disappointments I’ve experienced and may experience in the future. I am also certainly not saying that this mindset is the right one for anyone else who struggles with their health. But, I see now that I will always have to put my health first, even after 27.7 years of it existing at the very bottom of the priority list. No one (that I know of) has ever put me first and now that gets to be my priority for the rest of my life.

It feels a little weird to go as far as to say that this is a gift – because I would have prefered a nice bouquet of instant confidence or peonies – but I think that’s what this may be.

Today it all feels a little extra poignant as it has been one week since my job ended and I officially began my healing hibernation. In these last few weeks, my co-workers have swarmed around me and provided me with more love, care, and support then I think any other person or group ever has. Their kindness has been a substantial motor of motivation to get my health on track.

Although there is a bit of an abyss ahead of me and my health continues to be a challenge, I am so grateful for this space and time to focus on myself. Between my obsession with Gabby Bernstein, my bi-weekly art therapy sessions, and following the amazing team at Tone It Up, I have all the resources I need to be successful in prioritizing my whole health. I also have a willingness and determination that is no longer tethered to old existing suppression.

So to return to my initial question: What does it take to build the life you want? I don’t know all the steps, but I’ve got the first one down: be willing.

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