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.
