“I don’t need a cloak to become invisible.”
~J.K. Rowling, Harry Potter and the Sorcerer’s Stone
I found out earlier this week that a fellow Lyme sufferer in the USA took her own life. I never met Heather, but I know her journey. All late-stage Lymies know, and understand, because so easily, that could have been us. The news of Heather’s death made me sad. So very sad. And angry. But anger won’t bring her back.
The news of Heather’s death made me feel helpless too. I never knew of her struggle until it was too late. This wretched disease that has wreaked havoc and destruction in the lives of so many, including mine, became too much for this young woman to cope with on her own. People need to know. It isn’t right.
Sadly, Lyme disease, like most ‘invisible’ illnesses has a very high suicide rate. Sufferers get worn down by their illness, by the cost of treatment, by the contempt of friends, family and many in the medical fraternity who don’t believe that they are sick. When you are desperately ill, and you can’t work, and you have no money and no safety net of family or friends (or you wore out your welcome, or spent your family’s last dollar) and you can no longer take care of the most basic survival tasks in your life, you run out options pretty fast.
But that’s not why I’m writing this post.
I’m writing to honour Heather Askeland as a poet, and an artist. I wanted to share her work with you. I wanted her to be remembered with the fullness of who she was.
This is a poem she wrote about selling her beloved violin to help pay for treatment:
the sold violin by Heather Askeland
the A string keens, a notch flat, lost
songbird carrying morning.
the sun is a steak knife slicing dust.
you crouch, release the zipper’s
low whine. case like a toothless mouth.
there is no music here.
no wooden neck to cradle
like a newborn’s head,
no thin steel creasing prayer
into fingertips. no satisfied tendons,
no sweat
other than the nightly fever.
you used to play Tchaikovsky.
your fingers were silverfish,
the audience thunderclap your
favorite drug. now bright lights spin
you like a top. snap you in two,
a severed dandelion.
you are lucky. illness is expensive.
you trade horsehair and childhood
recitals for antibiotics.
how many centimeters of soundpost
for homeopathic injections? for the
metronome of an IV drip?
how much varnish for hair loss?
for the skipping stone
pulse, for each battle between gut
and bread? which Bach sonata
for the skeleton memory?
your neurons are sunken ships,
the dead fish sing you lullabies, let meat
rot in cupboards and crackers grow freezer crystals.
for a moment you panic. wonder why
the case is empty. check the windows. the cats
are two otters in their sun pools.
you remember: the violin is gone.
the violin is everywhere.
it is white cells, methylation pathways
morning yoga sessions. medication three times
a day and herbs that taste like molding twigs.
the 1812 Overture blasts its cannons
with each push of blood from chest to toes.
no one can hear it but you.
your arms are warm.
the music never left, is waiting for you
to turn it up.
And this is the final video Heather made, her one last shot at trying to find help. As you already know, it never came.
Spare a thought for Heather today. Say a prayer, send a blessing, wish her peace. Honour her short life for the artist she was – not as her disease, not as a lyme warrior – honour her for her poetry and her caring heart.
I happened upon this entry whilst looking for another of your post’s, Nicole. Thank you for sharing. RIP dear Heather. I give thanks for the advances being made in educating the medical profession about this insidious illness and look forward to governments acknowledging and raising their awareness and becoming less political and more pro-active for those suffering Lyme’s devastating effects.
Heather was my step sister. We were very close. I admired her talent and sweet heart. Her entire family loved her. She lost sight of this in the end.
Heather also suffered from mental illness for much of her life. She was never able to grasp the importance of treating her mental illness but instead purely focused on Lyme disease.
Her family did not forget her. She died far from penniless. I begged her until the very end to stabilize her mania. She refused. I have many regrets. I loved my sister. If I could have changed the world. If only for Heathers sake. I would have.
I just happened to be scrolling through my Facebook late in to the morning hours, as I couldn’t sleep. I am familiar with Heather’s story. I found her Video on a blog and reposted it on our Facebook page and Website. I am saddened to hear this! We were praying that her story would be heard, & she would find a place to get well. Rest in peace, Heather 💝
I am a Lymie who did not see Heathers plea until just after she took her sick body and hopeless heart to peace. I wonder what I would have done had I seen the video before she died. I know me, I would have done something. Yet I see pleas for financial help all the time from Lymies, or family and friends of Lymies, and I don’t always help. I can’t help everybody. The need is getting greater and greater – its completely overwhelming. The burden of Lyme is astronomical. We are desperate upon desperate.
What happened to Heather is a wake up call. Over 50% of Lyme deaths are suicide. Hardly anyone can afford to have Lyme disease, and many if these deaths are a result of not being able to afford or get proper treatment like sweet Heather needed.
After 13 years of witnessing the horrors of Lyme, I am seeing that things are changing slowly but surely. There are scientist, doctors and activist on the frontlines fighting hard for us. Fighting the IDSA for changes that will help and SAVE so many lives. Thankfully ILADS just came out with their own Lyme guidelines for doctors to follow. This is a major step in helping people get a proper diagnosis and treatment. These new guidelines will help so many and will save lives. Send these guidelines to your family doctors!
I see hope on the horizon for all of us chronic Lymies. Please don’t give up.
Thank you for your information. Blessings
As a fellow lyme sufferer this brought me to tears. Waking up every day trying to find a purpose to live, when your body is just so so so so so so soooo worn out. I truly understand what she struggled with, physical and emotionally. The difference between us, is I have the support of my family and i know without a doubt if I didnt have them, I would have taken her route also. I tell my mom all the time “I dont want to be someone else’s reason for living, I want to be my own reason for living.”- Watching this video was kind of surreal, now I feel its my duty to continue to fight this seemingly losing battle for her and not give up.
In memory of Heather. Rest in peace. Thank you for telling your story and sharing your talents. Many blessings and love.
I am heart sick. What a fabulous poem!
How terribly sad that such a gifted young woman could not get the help needed to continue her life.
Amazing young girl …so sad she is not here . If only there had been someone to help . I will be reading her poetry and my poetry group next week . I have strong admiration for you Nicole, with this retched illness …take care .
Cherryx
Such a lovely soul to be wreaked by this disease…RIP Heather.
heart wrenching!
So sorry to hear. Thank you for this beautiful tribute.
Ah, so terribly sad 🙁
R.I.P Heather
Oh my goodness. How very, very sad. Makes me realise my issues are so trivial.
And finally, Nicole – we love you and send you huge support hugs . With much love XXXX
I loved this
Makes me very thankful today for health…it can be a fleelting gift.
All I can do is honour Heather and send love to her soul and to all struggling souls. Such beauty.
I just watched the video and am in tears, so sad no one would help such a beautiful heart. Heathers and your courage inspire me, love and blessings to you, prayers to Heather, may you be at peace and feel the love that is coming to you now. xxoo
Reblogged this on Paging Mrs Zen and commented:
Heartbreaking story of Heather Askeland who lost her battle against Lyme Disease.
This is heartbreaking. 🙁 I never knew of her plight. I wish I could have helped, somehow. How her own family couldn’t believe that she was sick is just gut wrenching. Damn this invisible disease. I hope she’s found peace and inner harmony now.
just heartbreaking. I listened to her last youtube, the least I could do to honour her courage and vulnerability in asking for help. lots of love xo
Rest easy now Heather. What a beautiful soul, with a kind loving heart, and a true gift with words. I too am sorry you did not find the help you sought and wish you all the peace, love and blessings you need.
Thank you for sharing
What a moving blog and what a sadness she saw no alternative for herself.
The video was so very touching and her poetry so beautiful. I am so sorry that she didn’t get the help she needed. I am holding her and you Nicole in my heart.
She is beautiful. Her work is stunning. Her disease heartbreaking, I am so very sorry. Thoughts, hopes, prayers.