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Chronic Disease

Broken: A poem about coming to grips with chronic disease

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; in our latest installment, Angelika Byczkowski writes about her experience living with Ehlers-Danlos Syndrome.

Once I was whole. No, better
than whole, possibilities
strewn at my feet, choices
all mine for the making.

Then I got sick, and broken.

Now I struggle to fly with broken wings.
Old ambitions and desires
irrelevant, coming down
to earth with new humility.

Always aiming for superlatives,
now grounded with indistinction,
my new insignificance frees me
to fly from the need to be special.

Now I struggle to run with broken legs.
Can’t keep up, can’t catch up,
and the world passes by oblivious
to my desperate thrashing.

All that’s gained is lost
eventually. I jettison years
of accumulation, learn how much
I can do without, pare life down

to bare essentials, and find
the remaining kernel sufficient,
my load much lightened and easy
to swing over obstacles ahead.

Now I struggle to live with a broken spirit.
This, I think, I cannot do. I
languish, lacking spur of vital impulse,
motivation crippled, desire withered.

Paralyzed by apathy, stubborn
hope insists, after broken wings
and broken legs, after the crash
and pain of loss comes possibility

for something new. Anchorless alone
I drift, restrain my swelling panic
at this formless space all around me,
no purchase to be gained on these

feeble clouds, nothing solid to push
either for or against – I struggle only
with myself. And in this void I must trust,
resist the urge to close, and endure

with broken open heart.

Until she was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo. She lives in a rustic cabin in the Redwood forests of the Santa Cruz Mountains with her husband and two dogs.

33 Responses to “ Broken: A poem about coming to grips with chronic disease ”

  1. Michael Cook Says:

    Wonderful poem. Very calming. Helpful to others with serious conditions.

    Pain like this obscures all else. It “numbs” the mind, though unfortunately not itself.
    Hard to concentrate on more than one thing at a time. Hard to decide to actually do anything.
    Irritating to have the sharpness of ones brain dulled.

    This poem could be about the usual progression from youth to old age (meaning senility), but knowing the writer, it has the added poignancy of someone whose facilities have been impaired so young.

  2. adrienne harrison Says:

    Breathtaking My daughter is an aspiring artist at KCAI. She suffers with Ehlers Danlos as well, and this poem describes her struggles so…intimately. She is having to come home in December so she can get some intensive doctoring and therapy so hopefully she can find a way to complete her degree. Thank you for sharing this poem with us.

  3. Lesa Rhoton Says:

    That brought me to tears. I suffer from Ehlers-Danlos syndrome and live in this world of silent illness. If I had cancer, I would have friends coming to help me do my laundry, make a meal, sit and chat. Chronic debilitating illness that will only get worse with time is all but ignored. Thank you for this poem. It was like it was written especially for me.

  4. Hayley Says:

    Well written Angelika. You capture very well the feeling of having EDS and being, as you put it, “broken”. But a broken spirit is far worse than a broken body. I hope you will stay strong and at the very least, can mend your mind and heart, while keeping the rest of you in one piece. Thank you for sharing this beautiful poem.

  5. Wendy Station / Encephalitis Global Says:

    My heart goes out to you Angelika… your piece is very, very touching.

  6. Heather Butler-Pierce Says:

    So moving to see the experience captured here so eloquently. We on similar journeys know in a more real way what everyone will come to know eventually – all is transient and every working part of a body is a gift not to be taken for granted. Thank you for this piece!

  7. Katrina Says:

    Thank you for writing that poem! Very touching.

    I’m 25 and have had complications of EDS since I was born. I was diagnosed last month. I’ve had 11 surgeries and been hospitalized more times than I can count. Most recently, I was hospitalized in September after having a fainting spell and going hypoxic in a bar. At the hospitalized they figured that I had been drugged with an amphetamine and told me it had nothing to do with the other 100 times I have fainted or experienced significant presyncope. My tox screen was negative.

    I wish that story was a rare one, but it’s not for those of us who suffer with EDS/dysautonomia (and of course other chronic illness). Being able to trust our doctors (we have a lot of them) means the world to us. We see our doctors so much it’s nice to have a little chit chat and be friendly with one another. We don’t want to have to feel scared to pick up the phone to make an appointment wondering if we are going to come away from that appointment feeling worse than when we went in. We want to feel empowered in our lives but it helps so much if our doctors are supportive in doing what they can to enable that empowerment.

    We understand that we are the difficult patients. We have a lot of complications and you are never going to be able to fix us. We don’t ask you to fix us, we just ask that you care (and read up on EDS once in awhile ;) .

  8. kurt schulz Says:

    it’s a beautiful poem angelika it makes me cry because i can relate so well to all your emotion. i also struggle with thoughts of suicide. i’m still not sure what is causing my pain. i am told repeatedly by many doctors that the type of sarcoidosis i was diagnosed with shouldn’t cause the horrible pain i’m experiencing. it’s a terrible feeling not knowing if, when or what is going to happen. the feeling of losing your life, but still living is extremely depressing.

  9. Linn Ash Says:

    There are thousands more of us, with broken dreams, broken wings. Struggling to live day to day, to dream of a dream that somehow can still come true.
    Sitting alone, staring at the screens while our people are gone living their lives, leaving us home. Behind.
    What do we want? What can we do? Who will hear us? The ones who are listening, are the others who are also sitting, staring at their screens. Feeling pain, daring to share it here, with only a few.

  10. Betsy Robinson Says:

    Angelika,

    Great piece written with a big heart. I hope time will help you deal with the uncertainty of the pain and disability. I have unrelenting pain which reminds me that I am alive. Several emergencies and numerious surgeries which I wasn’t sure I would survive. I’m grateful for what I have and I hope you can experience the acceptance of your life and embrace the new possibilities.

    Being invisable is the hardest part for me. It is both the gift and curse of EDS. I’m thinking of you

  11. Roberta Says:

    Thank – you for writing this. You have put my thoughts on paper. I too have Ehlers-Danlos .

  12. Simone Says:

    Thank you for having the ability to put into words exactly what this is like. To go from seemingly invincible to, well, where we are now. I am 43, finally diagnosed at age 40, EDS Type VI, after a lifetime of more dislocations than I can count, endless falls, torn ligaments, and incredible injuries from two car wrecks caused by others. Bless you.

  13. Nadine Says:

    My 20 something niece suffers from a similar chronic condition the forced her to drop out of law school. Perhaps the worst part was that doctors simply didn’t believe what she was experiencing. When the first couple rounds of tests didn’t show any acute problem, they wanted to just send in the shrinks. It finally took a week at the Mayo Clinic to diagnose her disorder. I hope wonderful poems like this will inspire doctors to believe patients and keep looking for the causes, especially when a person suffers from an unusual or under-diagnosed illness.

  14. Nancy Says:

    Angelika,

    What a beautiful, honest poem you have written. As a fellow Ehlers-Danlos Syndrome sufferer, I identify so much with your words….

    “…and the world passes by oblivious to my desperate thrashing”.

    It is a blessing and a curse, for us to look so “normal”. Family, friends, strangers, and especially, Doctors, generally don’t have any idea how much we HURT. My beloved geneticist in Boston who diagnosed me, is the only non-EDSer who has come close to understanding. The last time I saw her she said something along the lines of, “I’m not going to ask you what hurts…..I know it’s pretty much everything, all the time. Let’s talk TOP THREE…”. This is one of the many reasons why I appreciate her so much!

    There is so much I love about this poem. Thank you!
    -your “Unhinged” friend

  15. Del-Lor Lisitano Says:

    Beautiful Angelika,
    My heart aches for you and all those who daily endure EDS. You have eloquently put into words the pain and discouragement my daughter and so many others with Ehlers-Danlos Syndrome feel. I wish I could gently put my arms around you and provide a shoulder to lean on.

    I hope your poem is selected for every Humanities and Medicine discussion group this fall and “invisible” disorders felt if not seen.
    Thank you

  16. Stephanie Says:

    I had a sucessful political career before the Ehlers-Danlos kicked in, now I am having to go back to school to find a new career that isnt so physically demanding. Not to mention I had been a professional dancer all through college. Now I am doing good to get out of bed. This poem is so dead on, as though I wrote it myself.
    Thank you to the author for putting it so beautifully!

  17. Treatment Diaries (@treatdiaries) Says:

    A link to this inspiring poem was sent to us via twitter and so glad to of clicked on it. Such a beautiful poem – you are never alone on http://www.treatmentdiaries.com and there are many there who can relate to your emotions and share in your journey. Thank you for having the courage to share yourself and inspire others!

  18. Joyce Says:

    Thank you for writing this poem, and thank you for posting it for the world to read. Living, or should I say, existing, with an invisible disease that includes chronic pain is so difficult. I’ve learned to be an incredible liar. I’m fine, and how are you? Thank you again for the gentle reminder that I am not alone and that other people suffer silently. And that it’s okay to feel the blues once in a while. Love, light and brighest blessing to you.

  19. Carmen Gonzalez Says:

    Angelika, your resolute spirit shines through this disease. To read how your “stubborn hope persists” despite all the hurdles imposed on your life is inspiring. Thank you for giving everyone an intimate view of your life in coping with EDS.

  20. Antoinette Rose MD Says:

    Dear Angelika,
    I know how bravely you face this, and have confidence that – if anyone can – YOU can and will find the next true place for your life to go. Thank you for sharing your journey so eloquently with us all, patients and doctors alike.
    Best, Antoinette Rose MD

  21. Rose Says:

    Dear Angelika–thank you for putting a voice to our voicelessness. It is so hard to have your life reduced to just a few essential elements, bit by bit, until it is just you, the medicines, and the straining to cope. Good meaning friends call and say, “want to go out?” not knowing that “going out” to anywhere but a doctor is not an option anymore. They remember me “when I was whole.” Like others who have commented here, I too have learned to be an incredible liar. If I said how I really was, I wouldn’t even get phone calls anymore. None of us could have dreamed our lives would be so empty…but the world goes on without us.

  22. dontbesilly Says:

    I’ve just gotten to the place in my life that you describe in your lovely poem. Only I haven’t been able yet to approach graciousness like you have. I would say that its hard for me to lose control but really I’ve already lost it and I’ve just not accepted that. I’m working on it though.

  23. Margaret Polino Nicholas Says:

    What a wonderful poem. Thank you for sharing.

  24. Amanda H Says:

    Beautifully written, heartfelt prose. Thank you for sharing, and for exposing your innermost feelings- a rather difficult task in such a complex syndrome. Blessings to you and yours!

  25. Ivette Rodriguez Says:

    Wow Angelika, thank you soooooo much for speaking for us broken spirits.. I have primary gloumeranephratis with kidney failure. And dr.s could not explain why soooo much pain. You have described my broken wings broken legs and my shattered spirits…. Please keep writing!!, give us hope to know that we are not alone.

    Your reply
    Will be shared with the public.

    By Pelona1

    spirits.

  26. Therese Padilla Says:

    Hey Angelika! You know I have Ehler-Danlos Syndrome also, as does my five year old child. This is a touching moment for me, you made me cry again. But good tears, my friend, good tears.

    All I have to say is WOW. This work is polished, emotional and beautiful. It’s like this diamond forged under the pressure of pain, and cut with emotional suffering. Each facet reflects so succinctly your (our) crushed spirits; each line echoes with your (our) pain. The pain of have your (our) life (lives) taken from you (us) when you (we) know that you’re (we’re) more then a disease with a name that no doctor you’ve (we’ve) ever met can spell.

    That’s right. Not even the genecist who “diagnosed” me. I diagnosed myself and I went in with my evidence all underlined. I did my party tricks. And the transcriber still didn’t spell Ehler-Danlos Syndrome right three times in my lovely letter as “proof” to the other doctors that I do indeed have Ehler-Danlos Syndrome.

    Sorry, Angelika, I’m ranting. You know I do that.

    Doctors who are reading this: this is our life. This is MY life. Angelika speaks for so many of us, the painfulness of broken dreams, our broken lives. Please, don’t dismiss us because we are complex and difficult patients. Just because we are demanding patients we are people who are so broken inside by our disease.

    Ehler-Danlos Syndrome is invisible. It is tortuously painful. There are so many other rare conditions associated with it it’s not funny. Be open, be real, do your research and listen to us.

    Thanks for writing this Angelika! I really loved it. If not for me then for my daughter, who I’m trying not to have her wings broken at all. I can dream, right?

  27. Karlyn Says:

    Congragts Angelika! I too suffer with EDS and my life has become nothing but doctor visits and surgeries. Thank you for putting our cause in the public eye.

    To the doctors who read this, ask yourself why you chose this profession. Do you really want to help people, and if so, what will you do differenty. The way we are “treated” is typical of your industry. You are overworked, understaffed, and really don’t want to be bothered by difficult patients.

    I can no longer work, but when I did, I loved for someone to present something that was challenging to figure out. I have yet to find a doctor that is excited about being challenged. I would love to find a website that list doctors that love to learn and solve new problems. Until then I will have to continue to suffer and the hands of the rest of you.

    If I could have one wish it would be that “CHRONIC PAIN” would get the attention it deserves.

  28. Kevin Porter Says:

    I have a dear friend who found out she has EDS but has an appointment with a specialist to find out what type she has. I know she is scared to death, because her mother died about 21 years ago and she didnt know it at the time, but it is pretty clear to my friend that her mother had EDS and lived silently in terrible pain most of her adult life, but still managed to raise 3 children to adulthood and also took care of a disabled husband. Her mother ended up having a heart attack and dieing some days later, and my friend is now thinking she is going to die from this terrible disease and she wont come out and say it but I know she fears it will happen at any time and I wish I could help her in some way, but I dont know what to say anymore to comfort her. I also suffer from a chronic disease and chronic pain, so I can relate in a way to what she feels, (Which,this poem describes beautifuly!)For all of you out there suffering with EDS, or some other type of chronic pain or illness,my heart and prayers go out to you.

  29. Angelika Says:

    Thank you for all your kind words, your generous praise, and your encouragement. It heartens me to see so many others like me speaking out here – and it saddens me to see how many of us must live with chronic pain and illness.

    I appreciate that you took the time and energy (a precious and scarce resource for us) to write such eloquent comments. While I’m pleased and proud to have my poem published here, your numerous impassioned responses are making a far greater impression. By commenting on this theme, you are making visible how many of us there are.

    Invisible and silent no more!
    -Angelika

  30. hinda Says:

    I can relate to your feelings although I am dealing with different issues. For me trauma has often left me feeling that I am looking out the window at others living their lives, and although I so want to join in and belong so often I cannot seem to move, paralyzed by past experiences. there is much to learn from all of these limitations, still the process is challenging. May you be blessed with humility and love in this difficult journey.

  31. Shell Says:

    Many thanks for this poem which gives a truthful insight into living with a chronic illness. I don’t have EDS, but a rare inflammatory condition called Sweet’s syndrome. I run a FB group for people with this condition and posted a link to your wonderful poem. The members really appreciated it.

    Kind regards,

    Shell x

  32. Lexie Says:

    Thank you so much for admitting what I cannot…yet. EDS has robbed me(us) of all the things most people take for granted. I have found doctors excited about something new, until they realize they can’t fix me. Then they are done with me and no longer look at me or see me or answer my phone calls. My faith in God makes suicide out of the question but I think that without my faith, I wouldn’t be here anyway. May God grant us His Peace!

  33. Sharon Nash Says:

    Being a meningitis and encephilitis survivor, I too suffer daily with pain, fatigue, and identity issues. Thank you so much for putting our suffering into a beautiful poem. The tears are still falling!

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