The Importance of Strong Toes

We with chronic illness are badass warriors.

I thought I was done. I thought I was free. I thought a new chapter had begun.

I even made a (now) embarrassing YouTube video about how I “beat Epstein-Barr in 12 weeks.” I’m an optimist with bipolar disorder, can you blame me?

BUT I always want to be transparent and as disappointed as I am, this is simply not the truth.

I was mostly bedridden for around 6 months, made dramatic changes to my diet and supplements and became free of all EBV symptoms along with my co-infections in 12-weeks. This is true.

And I felt great for almost 3 months, until I had a flare-up last week that I blasted out in 3 days and was back on my feet with great pride and was just about to post a YouTube video about it when I got HIT HARD.

I’ve been feeling like I felt for those 6 months for 4 days now. I can barely get out of bed. I’ve had fevers, joint pain, a sore throat, phlegm, coughing, sinus and headaches and crippling fatigue.

I’m going to get an IV next week – I stopped getting them after I thought I was cured and chose to use that money on somatic therapy, (which is amazing and that’s a whole different blog post).

After all I’ve walked through in my life, I know this is only a speed bump. It’s not a wall. Surviving 4 years of postpartum depression taught me that – I hit many walls back then and I still managed to find a ladder.

This is clearly a speed bump.

I’m working on a memoir about living through postpartum depression and I dug this writing out from that time. I found it helpful for my current situation. Maybe you’ll find it helpful, too.

………….

I feel like I’m walking a highwire.

Some days, I wake up wobbly, but I have my balance pole handy. The elements still effect me – the sun can burn me, the rain can soak me, the cold can still enter my bones – but I manage.

Other days, the pole is nowhere to be found, but my arms give me the balance I need. I feel surprisingly confident on the wire, so I get brave and do some bouncing. Before I know it, I’m levitating just a few feet above the rope.

People start to notice and admire my lightness. Small crowds gather and I entertain them with my stunts. Above the rope, I’m free to do so many tricks I can’t do when bound to the rope. I’m having such fun that I flap my wings and, to my surprise, I start to fly!

Flying is the best feeling on earth. I feel invincible. I feel like all things are possible. Things that used to frighten me I now laugh at.

So I keep flapping, flapping, flapping and going up, up, up.

The crowd turns on me. What they once found amusing they now perceive as bazaar and unpredictable. They think I can control my flight. They want me back above the wire doing tricks for them.

Some sneer, others judge and many walk away. It no longer hurts me. Most people simply don’t understand the lure of the eternal sky.

I fly up, up, up until the sky goes dark and it gets cold. I start to lose oxygen. I know I’ll die if I don’t get back to the wire, so I finally turn around.

The next few days I spend fighting gravity to get back down. Upon landing, I collapse from exhaustion.  

I sleep the clock ‘round. I wake up confused, not knowing if its AM or PM or February or July. I’m on the wire, but my arms are tied behind my back.

And it’s been snowing. I slip on the frozen wire. I can’t get my footing.

Then a gust of wind knocks me down to the ground below.

I don’t have the strength to get back to the wire, so I stay down on the ground awhile. The snow covers me like a blanket and even I forget where I am.

Eventually a ladder drops and I climb back onto the wire, legs shaking all the way.

I fear one of the falls will kill me. I fear I won’t be able to get back on the rope. I fear I’ll stay down forever.

I’ve lost control over the balance pole. Some days it shows up, but there’s no rhyme or reason to its appearances.

So I only have control over my toes.

I grip with my toes as long and as hard as I can to stay on.

I take a step forward.

I stop people pleasing.

I take another step.

I feed myself.

I grip the wire.

I go to therapy.

Tight.

I go to work.

Tighter.

I listen to my body.

Tighter still. I no longer martyr myself back into sickness.

I hang on.

I show up for my son.

I stay on.

I don’t kill myself.

I live.

Some days holding on feels impossible, others it’s a breeze. It’s in the learning and the listening that I get to stay on the rope. The crowd has been replaced by a new one who doesn’t need tricks to love me.

Because I finally love myself.

We cleanse, we die, we are reborn.

Death & Rebirth

My phoenix tattoo. It’s impossible to get the whole thing unless I do a video.

I’ve lived many lives. Abused child, bullied kid, Semi-popular high school student, drug-addicted teen, actor, alcoholic, crazy-fun, crazy not-fun, sober, scholar, wife, playwright, mother, mental hospital patient…

There are actually too many to name.

My latest incarnation is health superhero and I’m loving her. But like the phoenix, it took suicide to rise and be reborn.

Yes, Suicide. Most people don’t know the Phoenix lights her own funeral pyre. Because death and fire aren’t negatives for her. Fire cleanses her so she can be reborn. She does this over and over again in her lifetime.

See, the phoenix is not a victim.

She knows when it’s time to get clean.

She is me.

After 6 months being bedridden most days with the Epstein-Barr Virus, I finally threw in the towel. I decided to kill myself.

But instead of lighting myself on fire – ouch, no thanks – I called my psychiatrist and my mom. My psych meds were adjusted and my 77-year-old mom drove 8 hours from Tahoe to give me a life-saving hug.

A few days prior, I took my health into my own hands – remember, the phoenix is not a victim – and I started a new health protocol that felt right.

My doctor is okay, but was missing the mark in quite a few areas. I followed my intuition & was led to 2 books: Medical Medium & The Epstein-Barr Solution by Kasia Kines. A lot of the Medical Medium resonated with me, but Kasia Kines is the medically researched version of the Medical Medium which definitely jives with me much more.

(BTW, I’m making no money off these links – I’m just sharing with you in case this will help you or someone you love.)

Her book, along with that hug and med adjustment have given me a new life. I’ve been healthy and energetic and haven’t been bedridden for 18 days as of today. The longest I went for 6 months was 3 days.

I still have the virus, but I feel like I’m kicking its ass.

I’ve risen again.

These small deaths will continue and I accept that’s part of my process.

But for now, I’m going to enjoy my newfound freedom of flight.

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