So, like my journalism professor at The University of Texas taught me on September 12, 2001, planned pieces take a back seat to breaking news. The summary of my appointments in D.C. can wait.
Heather Askeland wasn't just a Lyme friend. Over the past almost four years, she had become a close friend. At this time, I'm trying to grieve both a personal and communal loss. In this moment of overwhelming sorrow, I feel propelled to address something I thought I'd never write about—suicide in the Lyme community and factors behind it.
At the same time, in this entry I'd like to honor the memory of my absolutely incredible friend through the ways she affected both me and the world at large.
Please note: Any personal matters I share in this post were publicly shared by Heather on various websites such as YouTube, her donation page, Facebook and other community sites, and therefore I feel are not a violation of her privacy. I don't claim to know everything she went through toward the end of her life, and I'm sure nobody does. But I include details of her struggle that I feel are relevant to the topic—both her story and Lyme suicide at large.
|Heather in 2011|
The online Lyme community averages about one suicide per month—a tragic and shocking statistic up there with military veterans, both groups that have been failed by the very systems set up to help us.
I think this issue needs to be talked about. And I think that, while Heather's life was obviously uniquely her own, there are underlying commonalities in the Lyme experience that push people to take their own lives at an unreasonably higher than average rate.
When news broke of Heather's suicide, reactions varied—as they typically do—from despair to disgust. Folks ascribing to the "suicide is such selfish bullshit" and "she should have gotten help" type logic were quick to voice their opinions. To those people, I would ask they take a step back and try to get inside the head of a person so void of hope that they want to die. Just try.
Imagine, as in Heather's case, that your mother had just passed away, you just broke up with your significant other, you had to withdraw from your exciting graduate school program, and found yourself quickly homeless, broke, and sicker by the day.
Now imagine experiencing all of the above while an infection raged in your brain. Not just any infection, but an infection that alters your perception of reality, depletes your brain of neurotransmitters (such as serotonin and dopamine), and impairs your ability to eat, walk, or speak coherently. Imagine you've become debilitatingly weak, virtually bound to your bed, living in and out of hotels thanks to generous donations, and continuously sicker by the day in spite of access to acclaimed Lyme treatments which have, for whatever reason, been ineffective on you.
Maybe knowing that Heather went through all that can elicit a sympathetic response from the more judgmental audience. As I always say: less judgment and more compassion makes the world a better place.
Let me be clear: While I certainly don't encourage or condone suicide, and wish with my whole heart she was still alive, I can understand why she lost hope. I think it goes without saying that a suicidal person should seek help, but it's also a reality that often a suicidal person can't see past their crisis, and doesn't want help.
Here's the thing.
What non-Lymies don't realize is what a beast Lyme is. And herein lies one of the most fundamental problems in the Lymeshere. People chalk up Lyme behavior to "mental problems" without understanding why. Sure, most—if not all—late-stage, neurological Lymies have mental problems, but they are based in the biological and physiological. Simply put, we have actual brain damage. We aren't just whackadoodles.
Why is it that Lyme's closest relative, syphilis, can be acknowledged and validated for how it alters people's behavior, but Lyme is still commonly dismissed as insignificant. I knew Heather well enough to know that she felt painfully invalidated and criticized for her unwellness, and that itself is one of the main tragedies that propelled her toward destruction.
Heather's deep-rooted feeling of being misunderstood, judged, and invalidated is something that Lymies know far too well. And it's a horrible shame. We feel it from family members, society at large, and our own doctors (until, exhausted by doctors appointments, we stumble upon one who's willing to help us). In addition, our treatments aren't covered by insurance. You heard right! Treatment for Lyme is so insanely expensive that most people either go broke paying for it or won't even start it because they can't afford to.
As if that's not bad enough, the treatments are very hit-and-miss. While some people do in fact recover, a lot are left just as sick (or sicker, even, than before) after doling out tens of thousands of their own dollars.
The system is broken, plain and simple. And until more research is done to find better, more effective cures, and doctors are willing to step up and acknowledge chronic Lyme disease, and health insurance companies are willing to cover treatment, and families start validating the reality of the Lyme experience, people are going to keep taking their lives. I hate that I'm even writing that, but it's true.
Now let's turn out attention to the beautiful, radiant, warrior spirit of Heather. Let's never forget how brightly her light shone on this world.
To me, Heather embodied the ideal human. Unhardened by the harsh world, she loved people, she loved cats, she loved to love. And boy did she love. She stood for goodness and fairness, equal rights among people of every race and sexual orientation, and her heart bled for those who had less. She gave what she could, when she could. She took nothing for granted. She was a talented musician and poet, although she never called herself either—and never realized how brilliantly talented she was.
Pardon my language, but fuck. The world needs more people like her, not less. We can't afford—the world at large cannot afford—to lose Heathers.
Today is Heather's 34th birthday. I want to wish her a happy birthday, but I can't. Is she dancing with the angels in heaven? I want to tell her I'll always remember everything, until I'm old and my body decrepit, while she stays forever a young, porcelain-faced beacon of innocence.
I think I'll tell her now.
I'll always remember when you fell in love with Kelly last year. You couldn't hide the excitement in your voice on the phone when you told me all about it. It felt, for a brief period, as if love truly could be the cure to all ills. You sounded as good as you'd ever had been—newly in love, and newly enrolled in grad school. I remember the happy timbre of your voice.
I'll always remember that you read my blog. This very blog. And would write me with questions or comments afterward. And you listened to my songs. Do you know how many people listen to my songs? Most of my best friends and family aren't interested enough to listen. But you did.
I'll always remember how deeply and unendingly grateful you were that my friend Bea allowed you to stay at her home in Palo Alto last summer. Or how much you loved Bea's toddler, Sienna, who had just developed a new fascination with ketchup. And how much we both wished I hadn't literally just weeks prior left Palo Alto for Tennessee so that you could have hung out with me.
I'll always remember our complex discussions about PTSD, and how very clear it was that this was a daily struggle for you.
I'll always remember your love for Ani DiFranco's music, and how happy you were when Ani issued a proper apology after unintentionally offending her listeners last year.
I'll always remember your angelic, porcelain face, flanked by perfect red curls. And how beautiful you looked when you smiled. Or when you posed in selfies with your kitties.
I'll always remember how hard the anniversary of Liberty Rebekah's death was for you, and how you hinted every late July that you wished you were with her. And then, this late July, four years later, almost to the day, you joined her.
I'll always remember your poetry. It never hid your struggle. It never lied.
I'll always remember you and your unwavering heart.
Thank you for your friendship.
I'm sorry I couldn't save you. But I forgive you.
Love love love love forever.