14 Lessons from 14 Years

 

In November of 2004, I started seeing all kinds of doctors–family doctors, cardiologists, nerve conduction doctors and pain management doctors.

I was passing out or collapsing while running, and I wanted to know why.  This was the beginning of what has been a long and grueling 14 years in Western medicine.

I do think of my life as before I started seeing doctors all the time, and after.

This November has felt deeply grounding–and I’ve needed to move through the world more slowly than I usually do.  Figuring out “why” hasn’t been the point, and yet one day, I just thought, “I’ve been ‘sick’ for half my life.”

That moment felt significant.  Because these last 14 years have been intense.  And because I  want my next 14 years to feel different.

Labels are helpful and labels are limiting.  I believe both to be true.  I also believe healing is a journey and we never “arrive,” and yet also believe the journey is the destination itself.  Paradoxes abound, and language is limiting.  And that’s okay.

However, I do refer to myself as someone who navigates chronic illness–even if my illness has morphed, changed, and in many ways, I have healed.

This post is honoring this second half of my life so far–what I have learned, and what I desire to pass on to others.

Anxiety grows in secrecy.  

My sophomore year in high school, I became really depressed.  I didn’t know what was going on in my body–the symptoms kept worsening and it was getting harder to get through cross country practice.  I was put on a medication that made me really anxious, and I didn’t know how to talk about any of it, so I bottled it up.  And not talking about it, just made me even more anxious.

I remember the day I chose to quit the track team.  I was done performing, done pretending like I was okay when I wasn’t.  Quitting was the beginning of my healing.

The body is always speaking.

I spent years pushing through what my body was saying.  And I don’t mean just ignoring my body’s signals–but actually recognizing them and choosing to push past them anyway.  So all the collapsing, passing out, high heart rates, leg pain, menstrual pain, extreme fatigue, and anxiety–I pushed right through it.

What I missed in all those years of pushing through was hearing,

“Slow down, please.  Rest.  You don’t even know how much you deserve it.  I wish you did.”

It took me pushing, and going from one intense thing to the next, for my body to truly shut down.  I just couldn’t live like this anymore.

When I finally listened and responded with, “Okay, I’m listening now” the real work began.

My truth doesn’t have to be yours.

I’ve spent a good portion of my life people-pleasing, shrinking, hiding who I really am.  I was terrified of my own difference.  Terrified of disagreeing with those in authority, particularly white men.

Wanting so deeply to live into my purpose and yet unable to trust my own intuition and gut instincts.

Terrified of my internalized racism, sexism, homophobia. Unable to sit with my own discomfort and let it transform me.

As a contemplative spiritual practice grounded me enough to be able to see my own strength and my own complicity, I could more freely stand in my own truth. I could trust what my body was communicating.

I could see my own privilege and my own marginalization–and know that I’m both ally and allied simultaneously.

No one can truly tell me what’s mine to do–and yet to distance myself from community is both unwise and unhealthy.

Finding one’s truth just isn’t as linear as we would like to believe.

Ancestor connection is vital. 

I am more connected to my lineage, my purpose, my truth as I connect to my ancestors.  As I connect to what particularly needs healing in my family line, I stand in the world more grounded, needing less affirmation or understanding from the world.

Accept mystery & let go of needing to understand everything cognitively.

Easier said than done.  Also, just not much more to say here.

You are not making up your illness AND unexpressed emotions are the underbelly of disease.  

These are difficult to hold together.  I was told over and over again that I was making up my illness, that I was a hypochondriac who was just depressed and over-exaggerating everything.

I knew that I wouldn’t get help unless I found a doctor who believed me.  That was true, to an extent.  I’m glad for the treatment I received once being diagnosed with Hashimoto’s.

And when I started making the most progress was in my work through yoga, EMDR, qigong, breath work.  I needed to enter my body and allow emotions to come to the surface.  They needed expression so I could heal, so I could let go, and live more freely.

Less attached to “doing things right” or “finding the right doctor” or “living the best lifestyle to keep fatigue at bay.”

Things simply became about accepting and letting go–and of course resistance & expressing all the “difficult” emotions of sadness and anger, shame and guilt.

You can trust yourself and you must.  If you don’t, you will never belong.

Trusting myself didn’t come easily.  It was a lot of hard work honestly.  And it just came down to the question, “Am I going to a live a life respecting myself or am I not?”

And a lot of my fatigue surfaced when I went against my gut instinct.  When I “went along” because I didn’t want to inconvenience people or be “different.”

I also felt paralyzed in taking risks.

“What if I try that and I get more sick?”  “How do I know if I’m well enough to try something new?”

The questions are unending.  And I also was tired of living a life that wasn’t mine.  I had moved so far away from who I really was—and I felt the loneliness in living someone else’s life.

I knew that trusting myself would sometimes bring loneliness and yet if I belonged to myself I also wasn’t truly alone.

There’s a lot of things doctors don’t know.  And I deeply respect them. I just don’t respect them more than I respect myself.  

Doctors aren’t saviors.  They aren’t the ones with this seemingly unreachable external answer that will solve everything.

But I treated them this way for so long.  I was miserable, so exhausted and just wanted an answer.

Once I believed that trusting myself was how I must live–then more difficult questions surfaced.  “What is my body trying to say that I’m ignoring? Pushing through? What will it take to adjust my life and listen?”

I have “answers” too.  The key is sharpening my awareness and acting on what I know.

There’s value in both Western & Eastern-based medicine. 

I’m thankful for and have benefitted from both.  I still go to the pharmacy every month & pick up my prescription.  And I needed to be introduced to older frameworks of understanding health in order to see how my emotional and spiritual state affected my physical health.  Everything belongs.

It takes a lot of energy to run from your purpose because you are scared of being lonely. 

I know my purpose now.  A lot of it entails resting, slowing down, rerouting ancestral patterns of survival and relational and emotional scarcity.  Bringing balance to myself, my lineage and the earth by healing myself.  To cultivate my inner world and my creativity.  To speak the truth.

But for so long I was scared to go inward.  I craved it and was terrified of it.  I didn’t know how to be alone and not be scared.

I settled for trying to be busy to feel important, and to fit in–and I became so tired trying to chase a glimpse of “fulfillment” while being terrible separated from my own desires.

You can show up & choose; and most of life is outside your control.  

Preparing to die before I die feels sacred.  Life is wonderful and beautiful and challenging and downright cruel sometimes.  Joy and pain cannot truly be separated.  And so I want to show up for the present moment.

(Also a hint from someone who really gets chronic fatigue: It’s a HUGE energy waste to try to always be in control!)

You can waste a lot of energy explaining and defending yourself & your existence.  Instead use that energy for yourself.  You are worth it! 

This one goes against a lot of activist circles and activist thought.  I’ve spent a good portion of the past 14 years trying to get others (including doctors!) to believe that I had an illness.

Then what? Well, I received treatment that I’m really grateful for.

Then what? Well, my cycle of relating to people including explaining and proving my existence.  This is unhealthy, unsustainable, and not enjoyable.

Undoing this “putting up a front” because you already assume people are not going to understand you–and they are going to leave you–goes so deep.

The fear of abandonment when dealing with chronic illness is very real.  And makes relationships challenging.

And yet, if you belong to yourself, you will know that people come and go.  Having relationships leave, change, morph or shift can still bring up intense emotions and the question truly is, “Will you be there for yourself? For whatever you need, want, and desire?”

If you have the genes to manifest a disease, you have the genes to heal it. 

Quantum physics!

Rest is yours. Always.

Rest is resistance. And is always available.  We must trust ourselves.  Know what we need.  Create the space to rest.  And not just to fall apart and get back up to live at an unsustainable pace again.  But to rest because nature asks us to mirror our lives with its seasons.  Because liberation means rest and play and celebration.  It means letting our bodies experience what it feels like to be open and receptive.

Here’s to the next 14 years of living, loving and learning.

 

 

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