Tuesday, September 17, 2019

Inherent Worth

Up to 2015, I was a career professional with name notoriety. When I picked up the phone, important people answered. My work was easily accessible by Google search. I even had my own IMDB page.

But then the illness hit.

Overnight I went from working woman to woman whose body wasn’t working. And within a few short weeks of falling ill, it became apparent that working professionally just wasn’t gonna work anymore.

I tried – honestly I tried – making those VIP phone calls from my hospital bed, penning stories for a major medical news outlet that would never run because I couldn’t keep the pain, nausea, and other symptoms at bay long enough to finish them.

I was still alive, but I’d lost my life, and all that was left was to try to build something useful out of the broken pieces…

Growing up, I was driven to excel – a straight A student, honors graduate, Captain of various school groups, a scholarship recipient with both undergraduate and graduate degrees. I was an independent one-woman powerhouse whose self worth was tied up in my accomplishments, and, if I hadn’t “earned my keep” on any given day, that day was a day wasted.

But then I got sick. And my life – each and every single day – became a waste.

Or so I thought.

Recently I’ve been pondering the “worth” of my long-since limited life. I can’t write like I used to, lead a newsroom like I used to, run a film set like I used to. To date I haven’t even been able to hold down part-time employment because my symptoms are too severe.

So, if I can’t produce like I used to, can’t earn a paycheck like I used to, can’t clean the house or raise children or even feed myself like I used to, then where does my worth lie?

I’ve spent the four years since 2015 feeling that, because I could no longer contribute to society in my old ways, that I had no worth at all, but recent weeks have shown me this could not be further from the truth.

Friends, so many of us look at our limited lives this way – but it’s these viewpoints, and not ourselves, that are limited, and limited viewpoints mean we don’t see the whole person.

Let me say it plainly: You are infinitely more valuable than your illness and your pain. Even if all you managed to “accomplish” today was brushing your teeth, you have value. Immeasurable, undeniable value.

You are not a burden on those who love you.

You are not lazy or selfish or an impediment.

You are not worthless.

This shift in tone is recent for me, and please believe me when I tell you it was imperative that I make a change. My inner monologue since 2015 has been one of relentless bullying and despair. Because I could not bully my body into getting better, I instead bullied my mind, repeating mantras of my uselessness.

But I am not useless.

And neither are you.

The bullying brought on the despair, and every day was a misery. In his play, “The Last Days of Judas Iscariot,” Stephen Adly Guirgis writes: “Despair … is the ultimate development of a pride so great and so stiff-necked that it selects the absolute misery of damnation rather than accept happiness…”

Friends, a few weeks ago I realized I was being prideful and stiff-necked. If I couldn’t have my old life, I wanted no life at all. I chose misery over possibility. I chose the damnation of my own mindset over happiness. But I don’t want to – I can’t – make that same choice anymore.

And I don’t want you to either.

Change isn’t coming easy for me, but it is coming, and I’ll tell you how I did it. You can do it too.

1. Find a chronic illness accountability buddy. Because I could not summon positive thoughts on my own, I found a friend who’d mastered the art and I asked for her help. Yes, that’s right – stubborn, relentlessly independent me reached out for help – and my friend agreed to provide it. We now check in with each other every week, and share resources we’ve found to keep each of us in a hopeful headspace. Which bring me to point #2…

2. Resources. Don’t tell me you can’t find them. If you’re reading this, you have the internet, and therefore your options are endless. Even if you can’t leave the house, major retailers will deliver books to your door. If you’re like me and your vision was affected by your illness, audio books are amazing and you can get some for free (books too) with your local library app. And then there’s always YouTube videos, lots and lots of YouTube videos. Lately I’ve been inundating myself with YouTube healing meditations, and it’s awesome.

3. Online groups. Chronic illness groups are everywhere and can be a great place to find your chronic illness accountability buddy or new ideas for treatments or ways to more productively spend your time than lamenting your limitations. For some, groups can be intimidating or triggering, and if a member is pressuring you to buy some rare berry that only grows in Botswana in April to cure your disease, you may want to forego the groups in favor on #4.

4. Disease-specific organizations. Nowadays theres a non-profit or research group for pretty much any disease you can think of. Google them and then send an email, call, or join the message boards. Reach out to others who can sympathize with your struggles, and connect with experts (many orgs have disease specialists on their boards) who can point you to some areas of hope you may not yet be aware of.

5. Volunteer. Whether you’re able to leave the house or not, there are thousands of organizations out there that could use your special talents. Maybe you can do a few hours a week at a local animal shelter or volunteer at a food pantry. If you’re housebound, perhaps you can donate to the food pantry or crochet blankets for the homeless shelter. Meet the needs of another. Nothing feels better.

6. Reach out. Chronic illness can be so isolating, and isolation is depressing. Any form of human contact, whether meeting a friend for coffee if/when you’re able, or even just the weekly check in with your accountability buddy makes the world feel a little less lonely. If no one comes to mind, see numbers 3 and 4 above. There are always options. Don’t give up!

7. Share your gifts. Each of us is good at something. Find a way to do your thing. I recently saw a man with ALS in a wheelchair, fed by a tube. As he could no longer paint in his preferred way (with his hands, intricately, on canvas), he found a work around. Now he places canvases and paint on the floor, and rolls his wheelchair around in them to make beautiful designs. He’s still painting, and it brings him great joy.

A friend recently told me that happiness is fleeting, but joy comes from within and nothing can take it from you. That friend suffered a massive stroke 10 years ago, and is still paralyzed on her left side, yet she is one of the most joyful people I know.

I want that.

I want you to have that.

There are perfectly healthy people on this planet who are miserable. As members of the chronic illness community, we may have more reasons to be miserable than most, but friends, every day is not a misery. Every day is a gift – even if that gift didn’t come in the package you wanted.

We may need help to see the good, and that’s okay.

I’ve finally come to a place in my life where I can ask for help and am ready to receive it.

I don’t know why I waited this long. It’s bringing me joy, and I’m worth it.

And so are you.

Monday, August 19, 2019

The Quiet Man

"My gift is my song, yeah. And this one's for you."

All I have to give is words;

they're all I understand.

Repeatedly I give my words

to my Quiet Man.

No sooner does he open them

then they are swept away.

I wish I had a greater gift -

one that would stick and stay.

Words, they might be powerful;

to stimulate or sway

But what are words to a Quiet Man?

What do they convey?

When every night he makes my meals

after working through the day.

When every day he sees my tears

and keeps my fears at bay.

Sometimes I feel I need the words

they're all I understand.

But words are not the way of love

for my Quiet Man.

Would that I could do for him -

I try as best I can

but what gift do I have to give

to show my Quiet Man?

Action is a gift of now;

words echo throughout time.

Action is my Quiet Man.

Prose and rhyme are mine.

Even now I'm falling back

it's all I understand.

Even now I'm crafting words

to gift to Quiet Man.

He sees love in action

and action is my plan

to the degree that I am able

I'll give to Quiet Man.

To show him that I love him

in a way he understands

my every thought is of him

I love you, Quiet Man.

Tuesday, July 30, 2019

Post Mortem

Death - most people fear it - think it's the worst thing that can happen.

But for me, with my chronic illness, it's no longer death I fear; it's increasingly limited life.

When I first got sick, I was frightened, but I had hope.

Hope that the medical community would fix me.

Hope that this or that med would help me.

Hope that God would heal me.

Hope that, if nothing else, I wouldn't get worse.

I no longer have any of those hopes.

What do I have?

Ever increasing disability.

The one thing I feared and fear more than anything else.

A prisoner in my own, declining body.

A victim of my own ignorance, the ignorance of my doctors; a victim of Big Pharma, and of poor choices.

Over a period of 4 weeks, I was given 6 (unnecessary) antibiotics, all of which are known to cause mitochondrial DNA damage; these meds were paired with counterindicated meds.

And I had no idea.

So I let them do it.

And now I have a degenerative acquired mitochondrial disease that's impervious to medications and insidious in its actions.

It's destroying my nerves; it's taking my hearing. My vision could be forfeit.

Most of my hair fell out. I am in constant pain.

Those body parts made of collagen? My joints and tendons? Disintegrating.

Did you know your rib cage can actually hurt? Mine has for 2+ years.

Antibiotics took my ability to have children. They destroyed my thyroid.

I was a writer...but the brain fog is taking my words.

The worst is probably the neuropathy - if you can't feel anything, then all you feel is sorrow.

I am overcome by my sorrow.

I have been sick for 4 years. Pretty much exactly. And in that time, I have watched, helpless and hopeless, as one by one the dominoes of my healthy body fell.

I can no longer feel my feet or my hands. Or my position in space.

I can still feel the pain though.

Ain't that a bitch?

I'm developing trigeminal neuralgia. And my hearing continues to decline.

There's a daily headache now. And I can't sleep.

Constant tooth pain, but I can't go to the dentist. When he filled a cavity last year, the double dose of novocain he gave me didn't numb the pain.

Did I mention drugs don't work on me anymore?

I cannot adequately describe the terror that is living a body that you can actually feel dying.

Having constant dry eye, throat and nose so bad you actually bleed.

What I have basically mimics having MS, rheumatoid arthritis, Sjogrens and hypothyroidism all at once.

It's a nightmare from which I cannot awake.

And one from which I cannot escape into sleep.

In my heart of hearts I know that I am dying.

Dying slowly and painfully, which is really the worst kind of death.

And there's nothing they can do.

They killed me in 2015...I'm just taking my sweet time about getting there.

There are others like me, but we are few and ignored.

We'll die - early - robbed of decades of life and experiences.

I have a beautiful husband, home, and dog. And I cannot give them everything I want to give them. I cannot be for them who I want to be - which is just pre 2015 me.

What happened to me was the result of greed - Big Pharma greed.

And ignorance. Doctors don't know what they're prescribing or how it works.

And lies. Lies were told to get me in the position I was placed in to receive those meds. Lies were told and facts were ignored.

And my life is the price that will be paid.

I wonder how long I have left sometimes. But most of the time I just cry for my poor, diseased body and the health that I lost.

Grieving.

We do it for death.

But I am grieving while living.

Every day is a mini death - the loss of yet another vital function.

And I don't know how to cope.

I often dissociate - feel as if I am watching myself from outside myself.

Watching and mourning what's happening. But feeling as if it's happening to someone else. Because this simply CANNOT be happening to me.

I reach out to a few others who suffer. There is some comfort in knowing you are not alone. But that comfort last moments. And the pain never relents.

I marvel at the resilience of some others - how they endure despite overwhelming odds.

Many of these people lean heavily on faith - on the idea that there's a heaven, where they will once again be whole.

But I haven't the benefit of that belief.

Chalk it up to yet another thing I've lost in this process...

As I think about the limited time I have left, I consider what legacy I want to leave.

Sadly, I don't know how to shoulder that burden either.

I'd love to say I was a good friend, a defender of justice, a light - however small - in the darkness.

But I don't see any light anymore.

I'd give just about anything to see some light - to have some hope, however small.

To think help is just around the corner, so long as I hold on...

But I'm a dead man walking.

Friday, July 12, 2019

Madison

“Dead people receive more flowers than the living ones because regret is stronger than gratitude.” ― Anne Frank

When my sister died in July of 2007, she went from being someone I loved who was frequently on my mind, to someone I lost, whose memory I could not escape, even in my nightmares. Many's the morning I'd wake, having dreamt I was chasing her - down streets, through malls and places we'd been. She'd run, and, just when I'd give up hope of ever catching her, she'd stop, turn to look at me, and laugh, encouraging me to follow her.

I'm haunted...

Friends, give flowers now. Give phone calls. Give texts. GIVE TIME.

It's your most finite and most valuable resource. Guard it ferociously and gift it wisely.

Saturday, July 6, 2019

Surreal to see the shadows of your healthy life taunt you from your Netflix queue

My former "friends" on Stranger Things: why y'all don't come 'round no more?

We was close til I got sick; fair-weathers ducked out/side door

Can't believe these're the vestiges of what I fought so hard for

Thought we was love, in it for art but nah, you all just fame whores.

Friday, July 5, 2019

I don't think my family ever understood this about me.

If they had, maybe things would've been different.