Thursday, August 7, 2014

On Suicide in the Lyme Community: In Memory of Heather Askeland (1980 - 2014)

As my readers know, I was planning to write this blog post about my recent appointments with specialists in D.C. But, on Friday, July 25, 2014, my dear friend Heather stepped in front of a train and ended her life.

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.

Heather, I'll always remember how you were there for me, without judgment, last year when I hit my low point and didn't know how I'd ever get through it. You let me cry. You didn't criticize. You didn't judge.

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.


  1. Such love Leila, such love eminates from your words and admiration of such a beautiful soul. Thank you for speaking honestly from your heart. Thank you for the difficult conversation on suicide. Thank you for the appreciation and descriptions of the hell we all endure. This is one very rouged battle we are entrenched in. We do need each other. Blessings to you on this day of remembrance. You and Heather are beautiful women.

  2. Thank you for sharing you sorrowful story and loss of your beautiful friend Heather. Lyme is a disgusting disease that is highly disregarded in the medical community. I commend you for honoring your friend Heather and sharing her tragedy, it is a wake up call to this dreadful illness! We need more people like you, keep on speaking out! I do the best I can, we need to all keep screaming! Please be well, i'm so sorry to read this, and Heather is lucky to have a friend like you to keep her legacy alive - Peace to you.

  3. Not sure if my first comment went through.. Leila, this is beautifully written. Thank you so much for writing, you were right on about everything. You are such an incredible woman.. so generous, kind, intelligent and powerful. I am so glad that I got to know you through Heather, and I am so grateful that she had you as a friend.. what amazing support you offer. Heather loved you so dearly... as do I <3

  4. I didn't know Heather and I don't know you, Leila but your writing nailed so much, so clearly, so brutally honestly on this page. Thank you for taking the extraordinary energy and passion it must have taken to put pen to paper on Heather's birthday and express some tough stuff and to let us know more about the Heather you knew.

  5. That was a very nicely written thing about our fallen Warrior. You did it very well. Your stat on veterans is unfortunately wrong, 22 veterans a day commit suicide from PTSD. Don't jump on me for pointing that out please. free to click and feed needy veterans
    God bless all the Lyme Warriors and the veterans out there.

  6. Leila, such beautiful words spoken. Heather, I hope and pray that you are finally free of pain, weariness and sadness. Fly free Heather and spread your wings. Leila, I pray for strength and comfort to you and to all who are hurting. God Bless~

  7. I have severe ptsd and late stage lyme. I am alone too and have been since i was very young. I think living so long without support and having this disease is why i have such strong ptsd. The weekend she did this I thought the thoughts she was thinking. I didnt know her. the next day I woke and saw this had happened. I feel like I am in such an impossible situaiton but I felt that I have to keep going and I am still grieving what has happened with her. Its like we are so connected. I made a mix to try and raise money, it didnt really raise much but i raised a lot of awarness. Its unfortunate that so many people though are noticeing this after she is dead. or is it that the only people who notice are sick themselves and cant do much to help. ...I wanted to make a video and just felt to embarrassed or sick to do it. I am amazed at her ability to do what she did and put it out there. But its all really crazy to me as I was thinking of doing the same and I NEVER even knew her. this is not what should happen to young people like us who never had the right support. This disease is beatable. BUt like i said in my blog and mix NO ONE can do it alone.

  8. I came here to read and gain understanding about why a young beautiful person would take her life and about a horrid disease that I have little information on. I have an incredible amount of empathy for this sort of thing. I suffer from mental illness as well and every single day is a struggle for me and so I thought I would be able to understand a little of her piece when I read it.

    Then I read this "We aren't just whackadoodles."

    Well done, I too have biological and physiological reasons for my condition as well and I am sorry for your friend and your loss, but you were just a raging asshole right there in that sentence. I read somewhere that less judgment and more compassion makes the world a better place. Try actually practicing it.

    1. Whoa, schizophrenia much in the last paragraph? Clearly you DO have mental illness :-)

    2. Original poster, you completely misinterpreted what she was effectively saying in that particular sentence; she wasn't AT ALL being demeaning towards those with the illness (or other illnesses). She was addressing the issue of those countless untold others who choose to not evaluate the situations of those with an illness with an open mind, but instead view them with pessimism and doubt, subsequently labeling them with demeaning, dismissive titles along the 'whackadoodle' line.

      In short... she was pointing her finger at those who belittle, and doubt the symptoms of, the illness sufferers; she wasn't disparaging those having the illnesses, themselves.

  9. Personally, I took the word whackadoodles to describe how people who did not have the disease, often see those who do. I too struggle with mental illness, but did not see it as a personal attack. The one thing that did make me do a double take was the comment about veteran suicides. We are losing on average 22 veterans a day to suicide.

    1. I would not have taken that personally as well if she hadn't prefaced it with "biological and physiological reasons for my condition" implying that with who merely have mental illness don't have those things. As for her comment on veterans, it seems inaccurate however I can't find valid numbers on suicides for Lyme sufferers. Something close to 40% of vets died at their own hands in 2012. I cannot find a number for those affected with neurological conditions attributed to Lyme, although I did find a study saying a 1/3 suffered from suicidal ideation,

    2. Precious Leila,
      Your deep love and deep anguish resonate. We are grateful that you composed this piece for Heather and for all of us.

  10. I will keep it simple. Thank you and I am sorry for your loss. I have battled the suicidal thoughts from time to time. Lord knows if I didnt have 3 kids who still love me (even though the ex-wife asked me to leave in Jan. 2013), what choices I may have made. I would never do anything that could affect their life negatively. Still trying to balance out reality and whackadoodleness. Keep battling.

  11. So extremely sad and shouldn't have happened! RIP Heather �� I never knew you but know what you where going through!

  12. Very heartfelt and sweet written Leila <3

  13. How touching.

  14. Is anybody ever 'just a whackadoodle'? Nobody ever deserves to be ill, physically, mentally or a combination thereof. Although I find it extremely sad when somebody doesn't see any other way out anymore than suicide, it can be very real and should not be judges by other People. As for Treatment; there is a lot of suffering from Lyme and other illnesses that cannot be successfully treated, very sad but true.

  15. How sad but how beautifully written. I too am a Lyme Warrior and I too am preparing for my demise. It will be a great relief and release for me, sad to think about how it may impact the very few left in my life (2). I am guessing that Heather was alone in the world. We don't all start out that way but many of us end up that way - the battle then seems so futile. You become locked up alone in your dark and miswired head, hiding in shame. Who wants to live that life? I am sad for your loss and sad that she suffered so, but hoping she is in a better place.

  16. How was Heather so 'alone' if she had so many friends (you one of them)? Why did people go on and on about her - where were those friends when she needed them? I know that only Heather made the decision to take her own life but .. heck.. she had more than I ever will. Remission? Grad school? you have to be near 100% for that. A relapse is just that.. a relapse. I feel extremely sorry for her but more than that I feel sorry that her so-called 'friends' let her down when she was mentally at her worst. Another big reason I stay away from the Lyme community - lovely words Leila.. but only words. RIP Heather.

    1. Re: "I feel extremely sorry for her but more than that I feel sorry that her so-called 'friends' let her down when she was mentally at her worst."

      Hi, Anonymous. I felt I should comment here. Not sure if you knew much about Heather's situation toward the end. Her friends did not let her down. We (her friends) offered her places to stay, and through vigorous fundraising raised $10,000 for her on her YouCaring campaign. Many of us were there for her, but could not be close physical proximity after she moved out of state. It was then Heather who shut off her phone and stopped communicating with us. In retrospect, it's easy for a person to cast blame on a deceased or suicidal person's friends and family for letting them die. But in truth, that is just an assumption made on false information. Truly knowing the mind of a suicidal person is knowing that all the love and support in the world isn't enough to keep them wanting to live. It's not fair to cast blame.

      A Friend of Heather's

  17. @ A Friend of Heather's, thank you for clarifying. I guess I was reacting to the holier-than-thou tone of this blogger - asking myself if she and Heather were such 'close friends', why she didn't ask her to live with her... so thank you for clairfying. I did also comment above that no one can really *prevent* someone from committing suicide if they really want to do it. I didn't know her but from your comments and others I have read on her FB page I think she was a very lucky young woman who really didn't appreciate all the help that was given to her. (sounds terrible). Many if not most of us have very very little money to spend on things beyond food, shelter, some tx. If someone gave me $10k towards tx I can guarantee I could do a ton with it. Heck.. pay someone to cook/clean for you - I do it and I'm no millionaire. I don't remember the young lady's name on her FB page who kept giving Heather advice on shelters, housing, caseworkers, etc. but it seemed like there were always excuses. Now I learn that Heather stopped all contact with her friends who had done so much for her. That is why I feel (personal opinion) that Heather's mental health issues, NOT her lyme (yes I'm aware that Lyme can cause mental health issues but I have a feeling she had been suffering from them well before she ever got sick) are what she finally succumbed to. Many of us have been thrown out of stable situations with much less than what Heather had - she had her health, many years ago while taking a break from tx she was playing the violin at weddings and loving it, so I refuse to believe her physical downturn is what caused her death.. yet I wonder if she ever got real help for her problems which were to any lay person, psychiatric. I did not mean to lay blame on her friends at all, as I said, grad school, good health, etc.- sounds like the death of her mom and her break-up led her to go downhill. So sad. Thank you for clarifying.

    1. Not sure you really get it, and not sure I can actually clarify the situation accurately. However I will say one thing - the writer of this blog (Leila) was one of a handful of people who did offer Heather to come live with her. Heather declined. Leila probably didn't include that in her blog because she is anything but "holier than thou" and doesn't seek acclaim or bragging rights for asking Heather to come live with her. But many of us witnessed Leila pleading with Heather and even offering to pay her airfare to come live with her in Tennessee. Your first sentence basically set the tone for your whole comment. Nobody should have to defend this blogger, but I'm all for sticking up for her anytime people want to hit below the belt with accusations. Leave Leila and her humility alone!!

      - A Friend of Heather's (AND Leila's)

    2. get lost, troll .
      we don't like your holier than though tone .
      all your judgements are not welcome here .

  18. I was one of many people who offered and did help Heather. Sometimes people can't see through their pain to receive that help. And sometimes people's inner demons, regardless of what causes them, are just too big. I once heard a doctor speak about the mental health situation in our current world. He believes that nearly all mental health issues (yes, nearly all) are infection based, and in 20 years, that's how we will treat them. I think he is being optimistic on the timeline. But it sure makes sense. It seems like the above poster thinks he/she has the full picture of what Heather was going through. Nope. NONE of us do. Nothing we do to theorize that won't change that she is gone. So don't make "figuring it out" your mission. Because you won't. Mental illness that results in suicide is so much more complex than any of us will ever figure out. Thank you, Leila, for loving our friend.

  19. Hi Leila,

    Thank you for sharing this sad story about your friend Heather. It's very touching, and I am sorry for your loss. I felt compelled to comment due to what you wrote at the end of your letter to Heather:

    "I'm sorry I couldn't save you. But I forgive you."

    I recently posed a question on Twitter that is a subject I think about quite often:

    Does someone suffering from depression, untreated or not, owe their loved ones an apology for attempting suicide?

    Based on what you wrote in your letter to Heather, I'm assuming that you would answer that question with a "yes." I'm also assuming that Heather very well may have been suffering from depression at the time of her death. If she was suffering from depression, I am very curious to understand your thinking behind why Heather may need to be forgiven by you or anyone else.

    Depression is a behavioral health disorder that can lead people to act irrationally, I know from personal experience that it led me to do so when I nearly killed myself almost 17 years ago. I hadn't slept more than 3 hours in a single night for three months straight, and I went literally insane as a result.

    Following up my former question - do you think that I owe my loved ones an apology for the pain they went through as a result of me nearly killing myself?

    For the record, my answer to this question is not a simple yes or no, and I'm very curious to explore the subject with others that seem to be more decided on the subject than I am.

    Thanks again for sharing this story.

    Warmest regards,
    Francesco Bellafante

  20. I am a lot like Heather... I am also struggling with lack of support and understanding and a lot of judgment. I can relate to a lot of her experiences and feelings. We had mutual acquaintances, I believe, but I did not know her- however, I read about her after she died, and this may sound strange, but even though I am often suicidal and have been most of my life, something about her story is one of the things that keeps me going.

  21. I know some may think it is inappropriate to post this here, but I'm desperate. I am not really getting support from family and only a little from friends (though they are all pretty much as poor as me). I am unpopular for being queer, non-neurotypical, and non-gender-conforming, and for not having the same religion or politics as my family, and have always been treated differently because I'm adopted and don't "match" them. I have had health problems all my life and they have only slightly and sometimes been taken care of, some of them. In 2002, I had an infected cat bite that almost killed me (my aunt finally found me delirious and got me antibiotics) and have since had Bartonella rash two or three times. About 11 years ago, I had an infected tick bite and was told it couldn't be Lyme due to location (I have since found confirmed Lyme cases from the same place), and my health took a steep dive downhill. For a while I could hardly get up or walk. My other medical issues were greatly exacerbated and new symptoms showed up. I have yet to get any treatment or testing. I have not been able to keep jobs and I get rejected for any for which I apply. I have made an appointment in May with a Lyme literate doctor. We do not have enough of the money together for the appointment, treatments, or testing he might order yet. I am not asking you personally for money, but I am having a hard time getting anyone to share my fundraiser or art page, so if anyone could share it, it would be so appreciated and such a big help. Please just help me get some attention to my attempts to save my life. Thank you.

    1. I also want to mention that there have been times when my partner and I have been homeless and hungry and without any medical care at all.

  22. I think Heather would want people to help me. I think she'd want people to help and support anyone in a similar situation to hers.