Millions Missing & why I’ve been missing from arts on Kauai & my life in general…

I haven’t sent out a newsletter in over a year because after the intense amount of work & energy I put into the Kauai Art Tour I became very ill.

We live in a society that constantly tells us:
Go! Go! Go!
PUSH!
No Pain, No Gain!
Never Give Up!!!

But the tragedy of this is that for people like me with Myalgic Encephalomyelitis – a multi-systemic neuro-immune disorder – that very approach to life causes severe degeneration of our health. (If you can’t/don’t want to read this long post right now but wish to help, please scroll down toward the bottom to the “So what can I do?” section…)

Millions Missing DC protest Donia Lilly Pele flip flops Hawaiian slippahs

I thought having feet of flames / lava were symbolically appropriate for the M.E. Millions Missing 2016 Protest 🙂

So I haven’t been struck down by a new condition, but one that has apparently been the major cause of my deteriorating health for the past 19 years, to the befuddlement of doctors when I finally started seeing them a only few years ago (This is in addition to the Endometriosis I’ve dealt with for decades that some of you know I had surgery for last winter). My Myalgic Encephalomyelitis has progressed from mild to moderate over the years to now severe this past year. At this point, I just hope I never reach the extremely severe stage, like Whitney Dafoe. My heart goes out to him and his family who are racing against the clock to solve this mysterious illness.

I wanted to participate in a virtual protest (most of us are too ill to travel, never mind protesting all day) called #MillionsMissing this year to raise awareness of the illness and lack of funding. I went through the few digital photos I have from over the years (most were gone forever when my house was robbed in 2010) and was surprised and saddened to see the extent to which my life has been eroding away over the years. Because this illness affects memory, only upon going through these photos did I realize truly how long this has been going on.

Millions Missing Special Needs VSA Art Teacher Donia Lilly 2005

If you spent any significant amount of time with me in 2004 & 2005 you were likely aware of the INSANE amounts of pain I was in (and yay for US healthcare: I couldn’t see a doctor because I had no insurance so I didn’t know exactly what was going on). I literally had to hold onto desks while I was teaching I was in so much pain, and even after teaching just 1 class a day, I’d have to race home and get in a hot bath for the rest of the day/night…

Millions Missing Hiking in Switzerland Donia Lilly since 2005

My stamina for outdoor activities decreased over the years until I could finally only go on easy walks. Now I can’t even go on easy walks. Walking from my front door around the house to my back door makes my heart race and I’m short of breath.

MillionsMissing Traveling the World Granada Spain Donia Lilly since 2009

I tried going somewhere new in 2012 and didn’t see anything of the areas I traveled to, couldn’t go to the dance seminars I’d paid to attend, and had to travel home early from an International Artists’ Residency I’d waited years to attend, due to terrible painsomnia. I was so ashamed at the pathetic amount of work I accomplished while there due to my invisible, as-yet-undiagnosed illness. (Gone are the days of being able to rest on any old bed).

 

Millions Missing Community Arts Initiatives Kauai Hawaii Donia Lilly since 2011

I marveled at the amount of energy and stamina the Garden Island Arts Council’s Director had compared to me during this months-long project for Kamalani Playground (Carol Yotsuda – kneeling to my right). She has around 40 years on me! (This was also before I had any idea why I was in pain & exhausted all the time, and it caused me to push myself more than I should have been doing with my illness because, you know, I SHOULD be able to do more “at my age.”).

Millions Missing Tropical Beach excursions Donia Lilly since 2012

I live on an island, 8 minutes from the beach, yet I cannot go there because if it’s at all windy it aggravates my symptoms and I come home with a terrible migraine, and the heat also aggravates my symptoms and I come home with a terrible migraine for days. (But I also can’t handle living anywhere cold as it is a pain trigger, along with changes in barometric pressure!!)

MillionsMissing Singing with Elite Choir Donia Lilly since 2012

Singing brings me such joy and emotional & spiritual energy – singing in choirs has always been an exhilarating experience I’ve loved since I first started singing in choirs at age 6. But I started missing way too many rehearsals due to my health to be able to continue with Kauai Voices. (I’ve also wanted to audition for one of the HCT musicals since I moved to Kauai but I knew I couldn’t physically handle the grueling rehearsal schedule. But I still fantasized about it every time I saw the casting calls 🙂

Millions Missing Childrens Art Teacher Kauai Hawaii Donia Lilly since 2012

Since I could no longer teach part time I thought I could at least handle teaching art just 20 days out of the year for the Kauai Academy of Creative Arts’ summer program. I desperately needed the money and I love working with the kids. But I’d get home on the bus at 7pm, eat and go directly to bed every single night. My migraines got so bad I couldn’t even make it through all 20 days, and after 2 summers, I could no longer teach for KACA.

Millions Missing from Latin Dancing Hawaii Donia Lilly since 2012

I LOVE dancing – all kinds, but especially Salsa. Like singing, it brings me so much joy and bliss that transcends myself while I’m doing it. But another red flag for pushing myself too far with my illness (had I known what to look for then) often manifested after ecstatic dancing sessions: even though I’ve never drank any alcohol in my life, my friends would often tease me as I walked back to the car, saying that I walked like I was drunk.

Millions Missing Creating new art Hawaii Artist Donia Lilly 2013

This one was the saddest to realize when I looked at photos and where the time has gone: I haven’t been able to do any art at all since last summer… but even though over recent years I’ve done small bits of art here and there, I realized I haven’t been able to finish any new paintings for 3 years. It’s heartbreaking.

Millions Missing Performing for Annual Benefit Concert Kauai Hawaii Donia Lilly Malama Pono 2014

Even though I couldn’t regularly rehearse and perform with choirs anymore, I still tried to do some singing at the annual Malama Pono Kauai Sings benefit concerts. Only 1 group rehearsal and 3 nights of performances. But even that proved to be too much for my waning health.

 

MillionsMissing Open Studio Art Event Producer Kauai Tour Hawaii Donia Lilly 2015

The Kauai Art Tour was a great success, but at the expense of my health. I worked relentlessly for months from home (at weird hours, from wherever my body tolerated) and after the last day I literally couldn’t get out of bed for the month of May. Then my word-recall started going and I started having *scary* memory problems, which put me down the path of finally figuring out what the heck was going on…

 

Millions Missing Exhibiting Artist at Kauai Hawaii Art Fairs Donia Lilly 2015

Even just doing 1 or 2 Art Fairs per year became impossible due to Myalgic Encephalomyelitis…

Millions Missing International Art and Wine Festival event Hawaii Donia Lilly 2015

I looked forward to the Aloha Expressionism Exhibition at the 2015 Hawaii Food & Wine Festival on Oahu for many months. Just the 40 minute flight and drop off of my art left me sick in bed up until 4:30pm that day (the event started at 5pm). I took some painkillers and powered through the evening, but I had to catch a much earlier flight back to Kauai and was bedridden for weeks after this event that lasted just a few hours…

Millions Missing from Spending time with friends kauai hawaii 2015

I can’t go anywhere socially anymore beyond my friend Leslie’s home 500ft down the road without being bedridden in pain for weeks. And even if someone comes to visit me, I have to be careful not to talk too much or visit for too long or I will end up in pain… Unfortunately it’s an illness that is almost completely neglected by governments and research grants around the world, so there are millions of people affected that have no idea what’s happening to them because their doctors aren’t educated about this illness in medical school (even though it’s had an official designation from the World Health Organization since the 60s!) and are written off as “hysterical” or hypochondriacs or simply in need of psychological therapy (!).

 

Unfortunately it’s an illness that is almost completely neglected by governments and research grants around the world, so there are millions of people affected that have no idea what’s happening to them because their doctors aren’t educated about this illness in medical school (even though it’s had an official designation from the World Health Organization since the 60s!) and are written off as “hysterical” or hypochondriacs or simply in need of psychological therapy (I can’t believe it’s 2016 and we’re still stigmatizing the ill like it’s Victorian times).

 

 

Myalgic Encephalomyelitis affects the autonomic nervous system, the brain, and the immune system which in turn can affect so many other systems in the body. (It’s similar in some ways to Multiple Sclerosis but is often even more debilitating, affects at least twice as many people in the US, yet gets only 5% of the research funding that MS does). They suspect that it involves mitochondrial disfunction. But the crazy thing is, they don’t know what causes it nor how to treat it. (When a subset of patients were labeled with “Chronic Fatigue Syndrome” (which is sometimes used synonymously with M.E. but they’re actually not the same illness, and “fatigue” is the least horrible thing about M.E.) that new label gave doctors and the public apparent leeway to trivialize and neglect a real illness for decades).

I am writing such a long post (which took me 3+ months to make!) about this because there is no reason why an illness which for decades has been affecting as many people as AIDS should be getting 1000% LESS (yes, one thousand percent less) research and education funding. Male Pattern Baldness gets six times more funding than M.E.!!

Also, if I had been diagnosed much earlier, I would have known that overexerting myself and passing my broken anaerobic thresholds would mean that I wouldn’t recover like I should (some of you are aware how after I do some activity or event I’ll be sick in bed for days). This includes not just physical activity, but socializing, and mental exertion as they all require physical energy from our bodies. It is very likely that my disease wouldn’t have progressed as far as it has, had I known what was going on and how I could avoid exacerbating it. (My recent Postural Orthostatic Tachycardia Syndrome diagnosis is tied to this and could be caused by damage from the M.E.) But, for many reasons, including the medical community’s lack of knowledge, and my Christian Science upbringing / attending CS schools where nothing was done when I first became severely ill (my freshman year at Prin college), I had never even heard of something akin to Myalgic Encephalomyelitis and what it could do to my quality of life until 17 years later.

 

So what can you do?
Well, there are quite a few things, depending on your time and resources.
1. Share on Twitter
2. Share on Facebook
3. Sign this letter to your Congress people
4. Donate to my YouCaring page to help me get an adjustable hospital bed as that’s where I must spend most of my day, otherwise I get sicker – these days even from standing a short time.
5. Be compassionate to people with chronic illnesses. I can’t tell you how many people over the years have jumped at the chance to help someone with an acute illness only to turn around and completely ignore, belittle, and/or minimize a chronically ill person and/or their illness with well-meaning (or not-so-well meaning) advice and judgments.

 

Chronic illness is inconvenient:
-for the people who may want to help but there’s no end in sight
-for the people around the chronically ill person who think we should just “get over it” or “get on with life like everyone else does.” (If you’ve never been in severe pain 24/7/365 you really, REALLY don’t know how physically impossible that is)
-for the loved ones who witness our suffering day in and day out
-but most of all, for the chronically ill who can’t live the lives we want to be living because of the physical limitations placed on us through no fault of our own.

Please know that being dismissed and neglected by those we care about often hurts just as much as our chronic illness. Just because we have to continually turn down invitations or don’t have the stamina (or memory) to call/email you back doesn’t mean you should forget about us…

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16 Responses to “Millions Missing & why I’ve been missing from arts on Kauai & my life in general…”

Read below or add a comment...

  1. Van says:

    Thank you for sharing, Donia. I know how hard it is to share struggles and ask for help. Hopefully sharing will educate and break stigmas of chronic illness, but most importantly allow for more research and funding. Big love to you. X

    • donia says:

      Mahalo Evangeline – I appreciate the kind words. I hope you are doing well. I know people in Aussie who suffer from this condition have it just as bad over there unfortunately. Any increase in awareness and funding helps and your sister was so kind to share my post and so generous to donate toward my future purchase of a hospital bed!
      hugs…

  2. Leslie Hagen says:

    I have seen first hand the painful struggles you have been going through and LOVE that you still maintain a good sense of humor. I am saddened you can no longer dance and sing and produce your fabulous art. My heart goes out to you. Hang in there pretty woman, help will come when you least expect it.
    Love,
    Les

    • donia says:

      Mahalo Les – as one of the *very* few people who have actually seen first hand what’s been going on, your help and humor as well has been invaluable and I appreciate it so very much. I am so happy you and Leo are my neighbors 🙂
      hugs

  3. Susie Whittlesey&Melinda McMillen says:

    You are loved and cherished by God and we love you too! Melinda and Susie

  4. Valerie says:

    Many, many years have passed since high school, yet you’ve always held a special place in my heart. Sending you much love, hugs, and smiles. Thank you for reaching out, Donia. I’m happy to contribute to your fund and spread the awareness. With much affection, Valerie

  5. Marin says:

    Donia, I will donate to your cause! My heart goes out to you and the struggles you’ve been having physically! I know how chronic pain can put people in a very depressed place mentally and also makes your perspective on life shift significantly. (I had a severe injury a few years ago that had me in chronic pain…in pain, the mind can go to yucky places.) Please know how LOVED you are. Think on that when your symptoms seem so severe — Your very best friend (your intimate Father-Mother) wants to hear from you and talk to you every day. Her angels are all around you every single second. You can DEMAND that its your right to hear those healing angel messages. Much love to you!

    • donia says:

      Thank you for your kind words, Marin. I’m sorry to hear you have dealt with chronic pain as well — yes, it is such a drain mentally and emotionally – not just physically – and if someone has never experienced it, there’s no way to know what it’s like… I really appreciate your love and support!!
      hugs and love to you…

  6. James says:

    I’ll support this as I am able. I have compassion and understanding for the chronic conditions which affect the entirety of your life as well as the lives of many others. I hope and pray for treatable solutions.

    I too greatly admire your humility and honesty, and seeing the grace you are responding with!

  7. Nydia Rivera says:

    Hi. Donia.

    I hope you are well. I did not know about your illness. My family and I will donate for your cause. If you need my help let me know. You are very special to me.
    Besos y abrazos. Te queremos.

  8. Patrick says:

    This is heartbreaking! I want to help in any way that I can. I shared this post to my 5,000 friends. This is also the first time I’ve heard of this disease. Not enough information out there. I would like to donate as well. Since I live on Kauai though, I can’t help but ask if there is something more I can do? Really just say the word, I understand the pressure of being a creative professional and building a livelihood on your passion. That’s not easy even at 100% health! And we went to the same little castle art college in the Burren. I feel called to help you in some way but I don’t know exactly what. Please let me know if there is. Even if you just need a pen pal! 🙂 Thinking about you Donia. Sending healing vibes! <3 -PK

    • donia says:

      Mahalo nui Patrick – I didn’t see your comment until now, but I appreciate your sharing this and will be in touch!

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