In Memory of Emily

It is with much sadness that I write of the passing of Emily Collingridge -- a brave young woman with severe ME who died on Sunday from complications of the disease. She was 30 years old.

Emily, who was stricken with ME at the age of six (and had been mostly bedridden since her teens), still managed to accomplish much in her short life. She authored the book Severe ME/CFS: A Guide to Living. She also worked as a volunteer advocate for the Association for Young People with ME (AYME) as well as a family support charity called Home-Start. She managed to do all of these things from her bed, but was unable to continue when she suffered a setback in 2005.


Emily graciously allowed me to include her story and photos in my October 2011 testimony to the (ME)/CFS Advisory Committee. In that testimony, I borrowed from Emily's own appeal to tell her story:

[Emily] writes: "I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.

[She states]: "This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

Although Emily and I only corresponded a few times in the last many months, it was enough for me to have considered her a friend. In the brief time that I knew her, I found myself repeatedly touched by her kind nature and her strong desire to help others, even when she herself was so terribly ill. Most of all, I was inspired by her strength, spirit and determination -- all of which she continued to demonstrate to the very end.

Today, I feel both saddened and angered. Emily was so young when she fell ill, and so young when she died. She had such potential; such vitality and desire for life. She should not have suffered as she did. She should not have had to die. We are repeatedly told by government health agencies that there is not enough money to increase funding for research; that things take time and we need to be patient and wait. But some of us have waited an entire lifetime. And for some, like Emily, it is already too late.

I hope that Emily's death will not be in vain. I hope that, in hearing her story, people will start to understand just how devastating this illness truly is, how dreadfully sick we are, and how desperately we need help.

My heartfelt sympathies to Emily's family and friends. She will be missed by so many.

For more about Emily, please check out the following links:

• Severe ME: A Guide to Living
• Indigo Jo: Emily's Appeal
• Indigo Jo: Emily Rose Collingridge: 1981-2012
• ME Association: Emily Collingride: Such a Short Life, Such a Huge Legacy
• 4Walls and A View: The Disconnect Between Rhetoric and Reality in Myalgic Encephalomyelitis

These Small Candles

One thing I think this illness has taught me over the years is the need to maintain a constant sense of perspective.

I can recall healthier days many years ago when I sometimes complained about various inconveniences I now see as luxuries:  long lines at the grocery store, traffic, the high cost of a movie ticket or night out with friends, the tediousness of housecleaning, an especially difficult day at work.

And yet, as I reflect back on those things, I long to find myself in some of those same circumstances, which I now view as great privileges.

Today, I would do anything for the blessing of being well enough to go to a grocery store and pick out my own food, and would happily stand in long lines to do so.  I would be equally thrilled to pay any amount if it allowed me even one night of health to spend out (or in) with my family and friends.  And I would never complain about a long or hard day at work because I'd be so overjoyed to even be ABLE to work that I would be there half an hour early every single day.

When I first became ill, I thought I'd lost so much. And I had.  But despite how difficult my life had become as a result of my health, I was still able (with extreme determination) to continue to work. I was still occasionally able to go to lunch or to a movie with a friend.  Though it was difficult, I could do my own laundry, get my own groceries, cook my own meals.   I didn't realize how extremely fortunate I still was.

And then, I had a life-changing setback which left me housebound. Suddenly, I found myself  once again longing for my old life. Not just the life I had before I got sick, but the life I had just prior to the setback. If only I could get back to my previous level, I thought, I'd never take anything for granted again.

And then another setback struck, this one leaving me bedridden. Then another, leaving me unable to speak above a whisper. Then another, leaving me unable to shower. And so on.

Each time I have a setback, I find myself yearning for what I had before it -- for what gifts I did not fully appreciate as much as I should have, and for things I never even imagined I could lose or would have to go without.


This illness can take away so much from our lives: our independence, our careers, our hobbies and our sense of identity. In extreme cases like mine, it can even take away basic, elemental abilities we don't expect to lose until we are nearing the end of our lives.

As I've mentioned previously, in order to cope with this degree of  loss, I've had to learn to shift my thinking; to try to focus on what things I can do on any given day, and not on what I can't. This is often easier said then done.

Struggling with these challenges, I recently found myself searching for quotes on hope. I came across the following:

"In moments of discouragement, defeat, or even despair, there are always certain things to cling to. Little things usually: remembered laughter, the face of a sleeping child, a tree in the wind -- in fact, any reminder of something deeply felt or dearly loved.

No man is so poor as not to have many of these small candles. When they are lighted, darkness goes away and a touch of wonder remains."

-- "These Small Candles" (attributed to a tombstone inscription in Britain)

It reminded me to take a moment and reflect on what small (and even large) candles still remain in my life. Here are just a few:

Friends and Family

Sweet Notes from my Fiance

Hearing those 3 words....

Flowers to Brighten My Day

Hot Cups of Tea

The Rare Chocolate Indulgence

Comfort Foods

Sweet, Healthy Fruit

Audiobooks (and getting lost in a good story)

Bird Song

Window Views, Blue Skies and Puffy Clouds

Soft Breezes

Beautiful Music That Carries Me Away

Photos of my Niece and Nephew

Little Kid Drawings (made just for me)

Childhood Memories
(that's me climbing our maple tree)

Humor and Things That Make Me Smile

Memories of Past Travels
(This is a photo I took while in Venice, Italy)

Hope for the Future

Dreams --
For it is in dreams that I am almost always healthy.
It is there where I can still walk, talk, run, dance, travel
and even fly.

What are some of your small candles?

_____________________________________________________________

Photos that are not my own are courtesy of weheartit.com or gettyimages.com

Testimony: A Glimpse into Severe ME/CFS

The upcoming CFS Advisory Committee (CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS.

I had hoped to make another video testimony for presentation at this meeting; however, my health simply did not allow for it at this time. My testimony was therefore submitted in writing. You can find it below.

My goal was to show the faces and tell the stories of some of the more severely ill -- stories about this disease that are not often told. I wanted to do this not to evoke sympathy, but to create awareness and incite action.

Regretfully, I was told the testimony would not be accepted with the inclusion of photographs. I therefore had to resubmit it, excluding the pictures of the patients. However, I am posting my testimony here as it was originally submitted (including the photos) because I think it's so important for people to see our faces.

Much thanks to all those who granted me permission to share their stories and photographs. I am in awe of their strength and spirit.

~~~

Dear ME/CFS Advisory Committee,

Myalgic Encephalomyelitis (ME), often inappropriately referred to as chronic fatigue syndrome (CFS) in the U.S., is a serious and debilitating neuro-immune disease. While cases vary from mild to severe, studies have shown that many patients experience a level of disability equal to that of heart failure or late-stage AIDS.

It has been estimated that 25% of ME/CFS patients are fully disabled --often housebound or bedridden for years on end.

Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors. Patients are often too sick to tell their story. Some are living in darkness, some in silence and some in both. Some have not been able to leave their bed in years. Some struggle to eat, drink, speak and even breathe.

The following are just a few of those patients' stories.

My name is Laurel. I was 24 years old when I came down with ME/CFS following an infection with mononucleosis. I was active, ambitious, successful and well-educated. I loved travel, adventure and spending time with friends and family.

I never expected, at the prime of my life, to spend over a decade bedridden -- stricken with a horrible disease that has a trivial name and no effective treatments.

I am unable to stand, walk, speak above a whisper or fully bathe and care for myself. I have lost 15 years of my young adult life -- 15 years which can never be retrieved.

~~~

My fiance, Jim, was a former athlete in high school and college who earned a PhD from Carnegie Mellon.

Jim fell suddenly ill at age 19 after developing mononucleosis. He's been sick for almost three decades - more than half his life.

His dreams and ambitions cut short, he's been housebound and unable to work for years. He requires a wheelchair because he can no longer walk. He longs for the day he can run again.

~~~

Nina was struck down with ME/CFS at age 27 following a flu-like illness.

A young woman with many hopes and dreams, her life was suddenly turned upside down. She used to love to dance. Now she is unable to leave her bed and needs constant care.

At one point, Nina became so sick that she was struggling to eat, drink, talk and even breathe. She has been hospitalized several times. Her biggest wish is to be strong enough to sit in a wheelchair again, if only for a couple of minutes.

~~~

Alexis before ME/CFS

Alexis -- an ambitious, successful and energetic young woman -- also fell suddenly ill in her late 20s. She has been sick and housebound for many years now. As a result, Alexis' hopes for her future have all been forced on hold.

Alexis recently suffered a severe setback, leaving her unable to tolerate light or sound due to the neurological problems imposed on her by severe ME/CFS. She must now live in darkness and silence 24 hours a day/7 days a week.

Her family currently communicates with her using Tactile Fingerspelling – a form of sign language for the deaf and blind. She cannot even tolerate the sound of whispers.

~~~

Ben was a healthy, active 18 year-old when he became suddenly ill following an infection with mononucleosis, which later led to a diagnosis of ME/CFS.

Now 23, Ben is essentially completely bedridden. On a good day, he can take a few steps with a cane. At 6'2 he weighs just 118 pounds. He needs others to wash his hair and cut his food.

Ben spends every day in bed as his friends and peers move on with their lives, doing and experiencing all the things he longs to do but no longer can.

~~~

Marian was a former registered nurse (RN, MSN). She created a company called TrakMed, which provided trackside medical care for many auto racing teams. She partnered with General Motors Racing, providing innovative care for their drivers and teams.

Marian became suddenly ill in her 40s following a flu-like illness. She has been ill with ME/CFS for 10 years and is currently housebound and mostly bedridden. She often has trouble sitting up in bed, and she requires supplemental oxygen to breathe. Her sister, who also suffered from the illness, died of heart failure as a result of ME/CFS at age 49. Marian sometimes worries that she may meet the same fate.

~~~

Emily became ill with ME/CFS when she was just 6 years old. She's now 30. She's been sick for 24 years -- almost her entire life.

She writes:"I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis and pain so severe she sometimes hallucinates.

"This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

~~~

Please listen carefully to the testimonies being presented today. Please see our faces, hear our stories and understand our desperate plight. Some of us are quite literally fighting for our lives.

In return, we are not asking for much.

We are simply asking for the basics of what should be expected with any illness:

• a clear and accurate definition,
• an appropriate name that doesn't belittle the disease,
• adequate funding for serious biophysical research,
• clinical trials of medications in search of treatments and a cure,
• and increased awareness/education about the true nature of this horrible disease.

That's all. It's what is done for every other illness of equal severity. It's even what is done for illnesses of lesser severity. Why has it not been done for ME/CFS?

We've been waiting 30 years for the government to take action. We cannot wait any longer.

Thank you.

Note: Due to my health, it took me over three months to complete this testimony. All photos and stories are presented with permission.


March 2012 Update: Tragically, Emily, one of the young women mentioned in this testimony, passed away on March 18, 2012 due to complications from severe ME following a prolonged hospital stay. My thoughts and deepest condolences to her friends and family.
_______________________________

To read this testimony translated into German (thanks to Nina!), click here.
To read this testimony translated into Dutch (thanks to Zuiderzon!) click here.

New Reason to Hope

This past summer, a group of highly respected specialists and researchers from around the globe published a paper in the Journal of Internal Medicine entitled Myalgic encephalomyelitis: International Consensus Criteria. In the paper, the authors note that the original medical term for this illness is myalgic encephalomyelitis (ME), and suggest it is time to cease use of the inappropriate term 'chronic fatigue syndrome.'

The label 'chronic fatigue syndrome' (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term 'myalgic encephalomyelitis' (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3).

The paper goes on to describe ME as "an acquired neurological disease with complex global dysfunctions, pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport."

The authors state that the primary goal of their report is to establish a more selective set of clinical criteria that will enable patients with ME to be diagnosed and enrolled in research studies using a case definition that is acceptable to physicians and researchers around the world.

You can find a summary of the ME International Consensus Criteria here.

What does this mean? For many of us in the patient community, it means a lot. It means hope.

Recognition and Reflection

The below journal entry was written in 2001 sometime after becoming mostly bedbound and unable to speak above a whisper. I had lost so much, and had no real means by which to communicate that loss. I was still living in my small apartment then, and at the time, could shower and heat up food on my own. However, doing so took every single tiny morsel of energy I had and rendered me otherwise bedridden. I had no real computer access, as I could not read or sit up at the computer long enough to write mail (I did not have a laptop or portable email device yet). I couldn't talk on the phone or carry a conversation. I had not yet met my fiance. While my friends and family did what they could, geography and my own limitations in communication often left them at a distance. I was essentially alone. It was then that I started to keep a journal.

Journal writing had its own difficulties, however, as I could only hand write a few sentences at a time. Typing with one's eyes closed is one thing, attempting to write by hand with your eyes even partially closed is another. In fact, writing proved so difficult that some of my old journal entries are completely illegible.

I thought I'd share one of my first (and more decipherable) entries with you today, as it expresses some of the loss, isolation and self-reflection that severe, chronic illness so often imposes on us. It also speaks to the undying, inner spirit within, and of the deep desire to have a witness to our experiences.

~~~~~~~~~~~~

June 2001

On most days, being virtually bedridden, I often lay for hours with nothing to keep my company but my own thoughts. I have an incredible need, at times, to make sure I get these thoughts on paper. Not because I feel they are noteworthy insights at all -- in fact, usually they are fairly simple observations. It is more that getting my thoughts on paper seems to legitimate my existence somehow. It makes me feel that my time here locked up in my bedroom for months on end is not entirely wasted, and that, someday when I am well, I will be able to look back and see what was going through my mind while I spent week after week in solitary confinement. Perhaps someday I will read this journal, written in the darkest time of my life, and remember never to take anything for granted again. Perhaps, too, it will serve as a reminder that, even in the worst of times, hope can still endure and there is always something for which to be grateful.

I think, of course, that I also need some form of communication... some way to tell my story, to explain my experience, and to process it all so as to better understand myself and what is happening to me. Having virtually no contact with the outside world, this journal is now my only real outlet.

Cut off from others, I also feel that others are cut off from me. No one knows my daily thoughts, my current hopes and dreams, my joys and sorrows of each day. No one knows the enormous amount of strength and determination it takes for me to get through each moment of this illness. Thus, in this way, I feel twice made invisible, not just by the decline of the body itself, but by the subsequent inability to express myself.

In What Her Body Thought: A Journey Into the Shadows, ME/CFS survivor Susan Griffin describes this need for expression well when she says:

The hope is not just for the healing of the body, but for an emphatic understanding. To be seen. To be known. ...Shaken, left without any way to articulate the nightmare, and therefore isolated not only by bodily trauma, but by its incommunicability, I have felt an overriding desire for recognition.

In my case, I think I'm searching for recognition not just from others, but from myself as well. I think it is impossible to suffer a serious illness without seeking deeper meaning and trying to understand who you truly are, and why you are here.

Despite the multitude of limitations this illness has thrust upon me, I do feel the core of me still remains. Having been stripped of almost all attachments and all the things I once thought defined me, I am often struck by that indestructible sense of "being-ness" inside me that I still recognize as myself. In fact, I see it with more clarity than I ever did before. In losing the healthy body I had always depended upon, the center within me seems to want to emerge more profoundly than ever before. I have such respect for that part of myself, and that part in all others as well, that shines from within.

I am reminded of a short story I read in college called Pale Horse, Pale Rider by Katherine Anne Porter. The story, set at the time of the 1918 flu epidemic, is a semi- autobiographical account of the author's own experience with illness and that precarious edge between life and death. As the main character, Miranda, falls deeper and deeper into sickness, Porter writes:

....There remained of her only a minute fiercely burning particle of being that knew itself alone, that relied upon nothing beyond itself for its strength; not susceptible to any appeal or inducement, being itself composed entirely of one single motive, the stubborn will to live. This fiery motionless particle set itself unaided to resist destruction, to survive and to be in its own madness of being, motiveless and planless beyond that one essential end. "Trust me," the hard unwinking angry point of light said. "Trust me. I stay."

What that inner light, that will, or that undying and untouchable sense of "me-ness" actually is, I don't know. But I silently thank God every single day for its presence.

I have so many more thoughts I'd like to express right now, but so little energy to say it. And yet, such is how it is. I have no choice but to do what I can with what I have. It's all anyone can do.

______________________________________________________________________

Edited August 2011

Recognition and Reflection was originally published in Life Skills Magazine, 5th edition (June 2010). It is being reposted here with permission of LSM. If you would like to receive a free copy of Life Skills Magazine, you can sign up here. Please also check out Discovering Purpose, a blog about creating a purpose-driven life.

Small Moments of Grace

Not much happens in my world. The days come and go, the sun rises and then falls again, the seasons repeatedly turn and the traffic outside my window zooms by. As I remain here, sick and essentially motionless, I watch as everyone else hurries to work, to dinner, to a friend's house, or to some event or adventure I cannot partake in.

I long to re-enter the world of the living; to wake up one morning free from all bodily constraints, able to jump away from this bed and the disease which has taken so much from me.

In the meantime, I continue to try to remind myself that my life, with all its physical pain, sickness and struggle, is not without its own quiet moments of activity, beauty and purpose.

A couple years ago, a friend of mine from back east (who also happens to be a former boss, and one of the sweetest people you could ever know) sent me an amaryllis plant for Christmas. I watched in wonderment as it slowly transformed from a tiny bulb to six individual, colorful blossoms.

This spring the plant bloomed for a second time, going from this:

to this:

It's an interesting thing, watching a flowering plant bloom. There's a serenity to it; a sense of wisdom, elegance and quiet patience. I could do well to learn to possess such virtues.

Ironically, I've never been one who was good at resting, nor at being still. Even confined to this bed, I want always to be doing, to be accomplishing something, to know I am somehow still making a difference in the world. I struggle to just be. I appreciate nature's silent and gentle reminders that sometimes there can be beauty in merely being present to what is; to existing, breathing and hoping.

As I struggle with my forced solitude, I am happy to have a new bunny living outside my window, keeping me company. I seem to have a new rabbit living in the front yard with the arrival of every new spring and summer season. So far this particular bunny has been rather quiet, preferring only to be seen in the early morning hours or just before sunset.

Fortunately, the bunny apparently found a safe hiding place when this coyote showed up in hopes of a tasty breakfast.

Even though he probably would have had little interest in me, I was still glad there was a wall to safely separate us. :)

One morning I had the privilege of seeing this beautiful deer strolling the yard. She took my breath away.

I've had my share of the usual window nature sightings as well: a variety of squirrels, gophers, lizards, birds, birds and more birds. Here are a few of said creatures:

I'm told this is an antelope squirrel (not a chipmunk),
but I'm not convinced

Gecko (not to be confused with Geico)

Finch and Cardinal Hang Out

A pretty goldfinch

Hummingbird

Cooper's Hawk

I mentioned in a previous post that, on "good days," my parents sometimes wheel me to their bedroom where I get to have a much nicer view of the mountains, sky and landscape. While those jail breaks have been less frequent than I would prefer, I am grateful for every one of them. It is on those days that I get to see views like this:

The view is even more beautiful in spring and summer when the trees are all in bloom. This photo was taken in winter, and that white stuff you see on top of the mountains (look real close) is snow!

Earlier this spring, my brother, sister-in-law, niece and nephew came to visit, and I got to see them for the first time in two years. Visits are always hard on me, and it broke my heart that I could only spend a few short minutes with them each morning. However, I was so grateful even for that time, as it was such a joy to see their smiling faces every day.

My niece and nephew had grown so much, and I absolutely adore them both. I wanted so much to play with them, to go on adventures with them, to interact and talk and catch up and just get to really know them. I wanted to tell them what a fantastic and super cool aunt I would be if my circumstances were just a little bit different. But, my circumstances ar what they are, and we all made the best of it. I hope I was somehow able to convey how much they mean to me through my silent expressions of joy upon seeing them, and my little whispers and words of affection.

Here's a small collage of photos showing some of their various adventures while they were visiting (all photos courtesy of my brother):

While I was unable to participate, I loved hearing the stories and knowing they were having a good time.

In the last few months, I also became a godmother twice-over. I am already the proud godmother to my nephew, and I am now also godmother to the youngest daughter of my best friend from college. I wasn't able to go to the ceremony, of course, but I was there in spirit, and am privileged and honored to hold the title to such a sweet little baby girl.

Jim and I are still doing very well in terms of our relationship (not so much in terms of our health). I am in continued awe and gratitude to be blessed with such an amazing man as my fiance. I only wish we were healthier, and we could see each other more often.

This past spring made 8 years since we've been writing each other every day. For our anniversary, Jim printed out all our email correspondences from the first month we began writing (back in 2003), and placed them all in a beautiful album for me. It was such a sweet and thoughtful gift, and one I will always cherish.

Speaking of my health, things have been very difficult. Sometimes I prefer not to go into the details because I simply don't want to relive the physical pain of it all over again. This illness is so brutal and so utterly pervasive; there is not a single second of any day that it doesn't dominate or alter in some way. That's why these little moments of escape are so lovely, and so necessary. And that's why I am so grateful every day for their brief but welcomed grace.