Saturday, November 26, 2011

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 actually long to find myself in some of those same circumstances, which I now view as great privileges.

Today, I would pay any price for the blessing of being well enough to go to a grocery store and pick out my own food, and would happily stand in line for hours in order 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 even 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?

Any photos not my own are courtesy of weheartit.com or gettyimages.com
_____________________________________________________________



Note: I will be offline more than usual in the coming months.  Wishing everyone a wonderful holiday season!


Wednesday, October 19, 2011

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.
_________________________________

Edited

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

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.


Thursday, September 8, 2011

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.

Sunday, August 21, 2011

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.

Saturday, July 2, 2011

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

Pretty Goldfinch

Hummingbird

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 hell 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.

Thursday, June 9, 2011

Compassion and the Power of Words

A few months ago, a friend shared with me the below video. It really struck a chord. Before I say any more, I'll let you watch it for yourself:



First, let me say that I understand why some people have a problem with this video. Blindness, of course, does not necessarily (or even frequently) render a person homeless or financially dependent. The blind are able to live just as independently and successfully as any sighted person, and indeed many work hard to do so. I certainly understand that.

However, I don't think that's really what this video is about. It isn't about the blind, the homeless or dependency. It's about humanity. It's not meant to evoke pity, but compassion. It's about finding the right words to open people's minds and thus change what they see.

After watching this video, I couldn't help but wonder about our own plight within the ME/CFS community. For nearly 30 years, we have been struggling for people to understand the reality of our illness and thus finally take appropriate action -- action which matches the full scope, urgency and severity of this disease.

Yet, despite all our efforts, the obstacles remain. How do we break through some of those barriers? How can we change our message so that people actually hear us? What can we do and say so that people finally see us?

Those with ME/CFS have a lot to be angry about. I'm angry too. I'm angry at the lack of care and treatments, the lack of funding and research, the lack of respect and recognition, the lack of government response, the lack of understanding within the medical community, the lack of public awareness -- the list goes on. I'm angry that I've lost over 14 years of my young adult life, suffering from a horrible physical disease that has no cure and no accepted treatments, and few people (beyond friends, family and some doctors and researchers) seem to care.

But is anger necessarily the best way for us to advocate? Are public personal attacks against those not on our side -- and even, at times, against those who believe that they are -- really helping our cause?

I recently wrote a very short email to Deborah Kotz, a health reporter at the Boston Globe. I wrote in response to an article she'd written in which she referred to this disease as "chronic fatigue" rather than chronic fatigue syndrome. I explained the difference between the two, and why I feel the word fatigue is both inappropriate and grossly inadequate. I told her a bit of my story and shared with her my 2009 video testimony. I never expected her to reply.

But she did reply. In fact, she not only responded to my email, she actually followed up with an additional blog post in the Globe. She posted my video, acknowledged that CFS is much more serious than she may have first realized, and asked the question: Does Chronic Fatigue Syndrome Deserve a Better Name? (Click on the link to vote).

I was able to reach this reporter not through my anger, but through her sense of compassion.

Most people are not even remotely aware of the full scope of this illness because no one actually sees it at its worst. The suffering goes on behind closed doors. Patients are confined to their beds, often in darkness, unable to speak, unable to tolerate interaction, unable to tell their story. Yet, these are the stories that need to be told. These are the stories that, once seen and heard, cannot be easily dismissed.

Is touching upon people's sense of compassion one of the more powerful ways we can reach others and advocate for ourselves? I don't know. But how can one read the stories of Lynn, Emily, Ben, Sophia or Zoe and not be affected? How can anyone watch the below video and remain blind to what they see?


Voices from the Shadows Trailer from Josh on Vimeo.


What I do know is that there have been years upon years filled with beautiful days that many of those with ME/CFS, confined to our homes and our beds, have not been able to see or fully live. And we desperately want to be set free. We desperately want to see every beautiful day, and have the freedom to live each one fully.

Thursday, May 12, 2011

The Magnitude of Time

My window is open and I can hear the birds singing as a warm breeze brushes against my face. I watch a squirrel sprint up a freshly budded mesquite tree in search of nourishment. My amaryllis plant, sitting by my window, has burst into a bold and colorful blossom with soft swirls of white and pink, as though in some sort of unspoken celebration. Spring has arrived once more.

It's been 10 years now (14 years ill) that I have watched the seasons come and go beyond my bedroom window. Ten springs have turned into summer, and 10 autumns have slowly given way to winter. Ten years of passing seasons that could have been filled with work, children, travel and adventure have slipped away from me, never to be retrieved. Ten birthdays of each and every one of my friends and family members have passed by without my presence. There have been many hundreds of unexplored weekends, thousands of missed opportunities and adventures, and millions of small everyday moments, never experienced, forever lost.

As I watch the various budding leaves and cactus flowers bloom into another season, I wonder how to measure so much loss of time. A full decade has gone by as I lay on the sidelines -- forced to spend each day in this tired and lonely bed, quiet and immobile. While time escapes me, the magnitude of that time does not.

What would my life had been had I not gotten sick? What would the lives of 17 million others afflicted with this disease have been?

Today is International ME/CFS Awareness Day. For the millions who are sick, for the millions who have lost years of their lives, and for the millions more who will later become afflicted, please take a moment from your day to reflect and remember. If you know someone with ME/CFS, take the time to write them a quick note and let them know you care, and you have not forgotten them. Take time to learn more about this devastating disease and help spread the word to increase awareness. Take the precious time and the blessing of good health that so many ME/CFS patients have lost, and savor it. Savor it not just for yourself, but for them. For all of those who have lost so much, and who so desperately want their lives back.


This post was written in advance and pre-scheduled to post on this day. I continue to be offline more than usual as I recover from recent activity and subsequent setbacks. However, I welcome comments as I always love to hear from you! It just may take awhile before they are posted. :)

Saturday, April 23, 2011

Make A Difference: Vote for the WPI

Thank you for all your kind and supportive comments in response to my last post. I continue to be offline even more than usual as I recover from recent setbacks and ongoing activity. However, for those who may be unaware, I wanted to tell you that Chase Community Giving is holding another charity contest, offering a share in $2,500,000 to the 100 charities that receive the most votes from its Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities for which you can vote.

In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to: http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" on top of the page
3. Go to: http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease.

You have 10 votes you can use, so you are free to vote for any other charities of your choice as well. There are also a few other ME/CFS organizations in the running if you'd like to vote for them (search for CFS, CFIDS, ME/CFS, chronic fatigue syndrome or myalgic encephalomyelitis to find them).

Before concluding, I want to take a moment to tell you of a friend of mine who also has severe ME/CFS. Late last year, she suffered a crash that left her eye muscles so weak she was forced to wear an eye mask 24/7, rendering her essentially blind. I have just learned that she recently experienced yet another setback that has severely altered her tolerance to sound. She now lives in total darkness and silence 24 hours of every single day. She writes notes with her eyes closed in order to communicate. In return, her boyfriend replies by spelling out words, letter by letter, in her hand.

Visual problems and sensitivity to light and sound in ME/CFS are not uncommon. I myself suffer from these same symptoms, though thankfully not to such a severe degree. I know many others who also experience these difficulties -- no longer able to be online, read or watch TV. Some are living in darkness, some in silence and some in both.

I have received many emails in the last couple of years from bedridden patients or family members of bedridden patients, telling me details of the utter devastation that this disease has afflicted upon their lives. Some have not left their bed in years; some struggle to eat, drink and even breathe.

I tell you this not to evoke sympathy, but to explain why it is so urgent that we receive funds for research. ME/CFS is a very serious, treacherous disease. It often strikes suddenly (typically following a viral infection), and can afflict men and woman of all ages -- including young children. As with any illness, the disease can range from mild to severe, with some patients experiencing a level of disability equal to that of late-stage AIDS. Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors.

Despite its seriousness and high prevalence (approximately 1 million Americans), ME/CFS remains one of the least funded of all diseases in the United States. More money is spent studying hay fever. We need proper funding to find the answers, discover treatments and a cure, and thus finally end the suffering of millions world-wide.

Thank you so much for your time in reading this, and in voting for the WPI. Please note voting ends on May 4th.

5/5/11 Update: The WPI came in 5th place and won the $25,000! Thank you to all who voted. Please stay tuned for the 2nd round of voting, and a chance for the WPI to win $500,000!

5/27/11 Update: Round two has now ended and the WPI came in 12th place! They won 40k in addition to the 25k in the first round -- with a final total of 65k. Thanks to all who voted!
 

Sunday, February 20, 2011

The Remaining Sunlight

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship. I say imagine, because fortunately I've never actually been in an abusive relationship (please take note, CDC). However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For reading one too many words? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

Cooper's Hawk
(he was much bigger than he appears!)

Cooper's Hawk

Road Runner (beep beep)

Finch Singing

Finches Munching

Another Finch Munching

Mourning Dove and Goldfinches

House Finch Flying Above Goldfinches

Hummingbird

Female Cardinal

Gilded Flicker Woodpecker

"Hey, isn't it my turn yet?"

Two Finches Kissing
"Get a room!" says the third finch :)


Finch at sunrise



Birds sing after a storm; why shouldn't people feel as free
to delight in whatever sunlight remains to them?
--Rose Kennedy


Here's hoping there will soon be more sunlight for us all.