Survivors

You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and war.

There is no doubt whatsoever that every one of these brave and triumphant individuals should be celebrated. They have each earned their badge of courage, and they are a symbol of hope and strength to others facing the same challenges.

Still, whenever I hear this word spoken, I can't help but wonder to myself... what does it truly mean to be a survivor? Does it mean to have once been ill and to now be healthy and disease free? Does it mean to have faced an extraordinary hardship and come out the other side? What of those who fought but lost the same difficult battle? Did they not struggle through with the same amount of courage and determination? Did their spirit remain strong and intact despite not ultimately being victorious? And is that not the true victory in the end?

And what of the chronically ill? What of those of us who have suffered a debilitating disease day in and out for years and years on end? What of those of us who face all the multitudes of suffering and loss that come with an unabating chronic illness, and yet do not allow it to daunt our spirits? Are we not survivors as well, even though we remain ill?

I believe, unquestionably, that we are.

Viktor Frankl, a psychiatrist, author and, yes, holocaust survivor, writes: "The greatest human achievement is not success, but facing an unchangeable fate with great courage."

Success isn't always about winning. It's about how the battle is fought. It's about having the hope that we will eventually conquer despite the odds, and striving for that victorious moment with courage and grace. It's about how we face our obstacles, and not necessarily on when or even if we overcome them. There's more than one way to overcome an obstacle. There's more than one way to be a survivor.

Those of us dealing with a serious and debilitating chronic illness can often feel we have failed in some capacity. Society doesn't look well upon those who have not achieved the usual perception or definition of success. This is often further compounded if one's chronic illness is invisible to the casual observer. Others can't always see our struggle, our determination, or our courage. As we fight the battle of our lives, perhaps even FOR our lives, we are not recognized. In fact, we are often ignored. Worse still, we can even be erroneously seen as malingerers. Thus, on top of combating illness, we must also combat against the misconceptions of our illness.

And yet, we still don't give up. We continue to rise to the challenge, even when we may no longer feel we have the strength to do so. We learn to cope, to focus on the small joys of our lives, and every day, to keep up the fight. Stripped of many of the things we once thought defined us, we are forced to look within, and find out who we truly are.

In other words, we discover that we, too, are survivors.

What I Miss Most

Note: This is a personal journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me.  I  pretty much bare my soul. But I wanted to share it with all of you anyway because it shows the degree of loss that can come with this illness, as well as all the hopes and dreams that fervently remain. As I continue to try to dig out of a lengthy crash, many of these emotions have again been stirred, and I wanted to express them.
~~~~
I want my life back. All of it. Every little morsel.

These are just some of the many, many things that I miss most.

I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like diamonds in the sky.

I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.

I miss picking up the phone to call and hear the sound of a life-long friend's voice.  I used to love that first familiar "hello," detecting a sweet mix of love and loyalty and happiness at hearing from me,  knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.

I miss the glorious feeling of a daily shower and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy hair every day, and smelling of scented soap.

I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh --  the kind that makes you catch your breath as tears of joy stream down your face.

I miss going for long scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.

I miss getting to see my fiance's sweet smile each day and the amazing sense of comfort I get in being wrapped in his arms.

I miss sleep -- beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.

I miss the joy of learning to cook and the satisfaction of creating a well-prepared meal.

I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.

I miss having had the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.

I miss going to movies and the fun of getting absorbed into a great story on screen, whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater or even in front of the TV.

I miss reading -- books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.

I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good workout and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.

I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.

I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day and that the world awaits me.

~~~~

I also yearn for what I have not yet had.

I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.

I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love, honor and cherish him every day until death do us part and hear him make those same vows to me in return.
 
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath and to marvel at the miracle of his/her arrival.

I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.

I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow as they make each milestone, and boast to everyone with pride.

I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad; to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally.

I want to be able to play and get to know my niece and nephew. I want to be able to hug and kiss and talk to them so much that they get sick of me. I want to take them on adventures they will never forget and help them make memories they will cherish for a lifetime. I want to be a good godmother to my godchildren, to be their buddy and friend and someone they admire and look up to.

I want a successful career doing what I love. I want to get my master's degree and make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.

I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.

I want the chance to fully be me.

My CFS/CFSAC Video Testimony

At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. 

It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them.  In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.

In the meantime, I've included a link to the video below.  A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube channel.

Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!
 




Thanks for watching and for hearing my story.

*Update: I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m.  I am very excited and happy to receive this news! The two day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/

Much thanks to all who left me such kind comments and words of support!!

"Have you tried (insert remedy here)?"

Something odd happens when you tell people you have chronic fatigue syndrome.

People’s reactions are not often quite what you’d normally expect following the disclosure of a very serious and debilitating illness. Typically, there are a few standard responses. Below are some of the more common replies I've had in the 13 years I've been ill.

First, there is often laughter. Yes, sometimes people actually laugh. They then usually make a variation of the same joke, something along the lines of "Oh, I think I have that, too!!" Or, "Yes, and don't we all!!" I also once even had someone say to me, "Man, they make up syndrome names for every little thing now, don't they?!"

Other times people are able to restrain their amusement to some degree, and simply smile. They smile because they think you basically just told them that you're a hypochondriac who can't really cope well with life.

And then, of course, there are the rare instances when you meet someone who actually is informed about CFS, knows someone who has it, or who is just generally compassionate, and they thus respond to you with sympathy and kindness. But this happens far less frequently than it really should.

I find that, most often, when you tell people you have CFS, you get unsolicited advice. This used to surprise me: the idea that someone who had no real conceptual idea of CFS or the pathogenesis involved could be so certain they had all the answers for me. I often would wonder if I instead had MS, cancer or late stage AIDS (illnesses that the CDC equates CFS to in terms of symptom severity and disability), would they be so quick to offer a fast and easy remedy?

Now, don’t get me wrong. Most of these suggestions, especially when coming from caring friends or relatives, are all very well intentioned, and sometimes they can actually be of value. For the most part, I find people quite genuinely want to help. And, of course, suggestions from fellow sufferers and others aware of CFS are ALWAYS welcomed. One unquestionably wants to hear what others in a similar situation did with any measure of success. I’m referring here primarily to the passing suggestions of strangers and acquaintances who don’t otherwise know me, or have any idea what chronic fatigue syndrome is even about. And don’t get me started on doctors. ;)

For the sake of amusement, here are some of the more memorable "Have you tried....?" type of suggestions I've received at one point or another in the many years I’ve been ill.

• "Have you tried drinking extra coffee in the morning? I couldn’t get through the day without a lot of coffee either".
• "Have you tried drinking Jolt or Mountain Dew? How about No Doz? That stuff will totally rev you up."
• "You may be depressed and not even realize it. Have you tried seeing a therapist?"
• "Have you considered just taking naps?"
• "Have you tried smoking marijuana? It’s very calming."
• "Have you tried drinking Sleepytime tea at night? It always knocks me out and I wake up feeling great!"
• "You look fine to me. You just need to get motivated!"
• "You probably just need some iron. Have you tried taking iron?"
• "I’d be tired too if I sat around doing nothing all day. Have you tried taking up a hobby?"
• "Are you getting enough sex?"
• "Why don’t you just ignore it? I get tired, too, but I don’t let it interfere with my life."
• "Have you tried splashing water on your face throughout the day?"
• "You just need to exercise! Exercise is great for energy. Have you tried step aerobics? I feel great after step aerobics."
• When magnetic therapy didn’t work for me: "Wow, I'm shocked it didn't help you. Magnetic therapy always helps with fatigue. Have you tried seeing a doctor? You might actually be sick or something."
• "You are lovable and worthy of being well. You know that, right? You won’t get well until you can love yourself."
• "You create your own reality with your thoughts. As within, so without. If you are sick, it’s only because you’re thinking all the wrong thoughts."
• "Have you tried eating sugar for an energy rush?"
• "Have you tried eating less sugar to avoid energy rushes?"
• "What benefits do you think you get from being sick that might be keeping you ill?"
• And among my favorites: "Do you pray? God will heal you if you just pray." (Yes, I pray). "Well, you are clearly not praying hard enough, Sweetie."

Again, I know these suggestions are all well intentioned, of course. With a name like chronic fatigue syndrome, it's easy for people to assume you are just sleepy all the time, as that’s what the ridiculous name implies. And such a problem can surely be easily remedied. After all, it's true: who HASN’T been chronically tired at some point in their life?

But CFS is not about being tired. It's about being sick. It's about immune system dysfunction, mitochondrial damage, and disturbances in the endocrine, cardiovascular and autonomic nervous systems. It's about viral activations/reactivations, gut dysbiosis, orthostatic intolerance, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, and delayed low V02 max (maximal oxygen utilization) following exercise or exertion.

So, as much as I appreciated the above-mentioned suggestions, I'm afraid a cup of coffee and a few splashes of water on my face isn't quite going to do the trick. But what the heck, I'm willing to try anything. ;)

A Note on Lyme Disease

Something I have yet to really mention on this blog is my dual diagnosis of Lyme Disease (which came in 2004 -- eight years after becoming ill). This is in part because I've always struggled with how big a role Lyme is actually playing in my case, and on when, where, how or even if I really have it.

Testing for Lyme is complicated, confusing and not very reliable. False negatives are common. I was negative for Lyme with standard tests through regular labs, as are (from what I understand) most patients if tested years after the initial infection. I tested positive, however, through a specialty lab called Igenex. This in and of itself might leave some doubtful, as Igenex (with good reason) considers certain bands indicative of Lyme Disease that the CDC does not. But I was not just positive by Igenex standards; I was positive by CDC standards as well. Twice. I'm told this is quite a feat, as antibodies may no longer be present so late in the game, and the Lyme-causing bacteria (known as B. burgdorferi) are not always easily detectable. Apparently, they are a bit sneaky, and like to hide.

Given these results, and thus assuming that Lyme is a contributing factor in my case, how did I manage to contract it on top of viral-induced ME/CFS? Two possibilities come to mind. I did once have a tick bite as a child. I was about 11 years old, and found a tick on my back almost immediately after it bit me. It was not engorged. My mother removed it with tweezers, and that was pretty much the end of it. I never developed a rash or any other symptoms, so we didn't think much of it. Is it possible I contracted Lyme then but it remained latent all those years until I got mono, sending my immune system into havoc? Maybe, though I'm skeptical. I was quite vibrantly healthy up until that fateful day I fell sick, and there's no doubt that my illness had a clear and sudden viral onset.

However, for a few months previous to that onset (following a trip to Colorado), I remember feeling unusually tired quite a bit of the time -- almost like I was constantly fighting off a cold that never actually came to fruition. The fatigue was not anywhere near enough to interfere with my life at all, but it was enough for me to take slight notice. This makes me wonder if I may have somehow contracted Lyme during that trip, perhaps unknowingly getting a tick bite while hiking around a bit in the Rockies. Then, when I came down with mononucleosis a few months later, my immune system went berserk on me, ultimately resulting in ME/CFS.

I will never know for sure, I guess. Still, I feel ME/CFS to be my primary issue; not just because of the viral onset, but because I fit that picture so much better than the Lyme one. I don't tend to relate to Lyme patients as much as I do to those with ME/CFS. I don't have joint pain, tremors, numbness (other than from poor circulation) or all that much muscle pain unless I over-exert. Also, if I were to say what my most debilitating symptoms were beyond or even above the severe exhaustion, they would be orthostatic intolerance and post exertional setbacks (a worsening of all symptoms upon even the most minor of activity) -- the latter of which is considered to be the hallmark of ME/CFS. This is true of Lyme as well, of course, but it is something you see more distinctly and profoundly in ME/CFS, it seems.

It's also quite plausible that chronic Lyme is yet another form of ME/CFS; that is, if ME/CFS is caused by an infectious agent (viruses or bacteria), the bacteria that causes Lyme could be one of those possible triggers.

Of course, all that being said, assuming I do have Lyme, it is clearly complicating my case. I have tried a multitude of treatments for it, just as I have for ME/CFS: a growing list of antibiotics, mepron, herbs, diets, protocols, IV's, nutritional supplements and alternative/natural therapies. Thus far, nothing has worked.

So, what do I do after being diagnosed with two illnesses that are poorly understood and lacking in viable treatment options? The only thing I can: keep trying, keep searching, keep looking for answers, and keep hoping.

For a brief trailer on a newly released documentary on Lyme called Under Our Skin (now in theaters), check out the video below. It is a must-see.



*Note: For those who are more knowledgeable about Lyme than I am, please feel free to correct me if I got anything wrong. I am much more well researched in the area of ME/CFS than I am in Lyme Disease. :-)

For those looking for more info on Lyme, please see some of the websites linked on this page.

A Personal Lesson in Humility

The CFIDS Association of America recently took a poll in which, among other things, they asked their members what kind of personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

In that light, one can probably anticipate which stories were among those that generated the least amount of interest. Who did they not want to hear from?  People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can feel so isolated and invisible. We often (quite literally, in my case) don't have a voice. No one wants to hear our story. Not even, it seems, many of our own fellow sufferers.

But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn't want to hear them either. It was too scary and depressing. I refused to believe becoming homebound or bedridden was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.

In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.

People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.

But it didn’t quite turn out that way. Not yet, anyway.

If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedridden, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more insight from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.

If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:

First, don’t worry. If you listen to your body -- truly listen to it -- then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own failing health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.

Now this isn’t in any way to say that it’s not possible to recover from CFS. While full recovery is  rare, it is most certainly possible. Nor do I mean to imply one needs to let go of ambitions or stop trying to achieve in any way. Far from it. I certainly have not let go of any of my life-long goals and, given my health, I overcome more obstacles now in one day, comparatively speaking, than I did in a full 40-hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.

Of course, finding appropriate treatments (should they someday exist) would be of tremendous benefit as well. 

In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.

Waiting from Within

I wrote this poem several years ago, not long after first becoming bedridden with ME/CFS.

WAITING FROM WITHIN

I lie each day
beneath the thick covers of my bed,
my body slowly descending downward
far beyond the realms of exhaustion
and sickness,
as though I am perpetually dying.

And yet,
the very center of my being,
the essence of who I am,
remains deeply alive;
familiar, constant and unyielding.
It exists of a strength and vitality
entirely its own
as it waits silently from within
for its wondrous moment
of release.

For now,
I can only watch as the days pass
outside my bedroom window.
In the distance,
I can hear
a baby crying
and a woman laughing
as birds sing out their songs.
I imagine that their expressions are my own.
They each speak for me
with a voice and a freedom
I do not yet possess.

--LB © 2002

The opening of this poem was inspired by (and slightly borrowed from) the following quote:

“Each day as I would slide into the downward spiral of my symptoms, I would feel as though I were suspended at the edge of death. As if I were perpetually dying.”

Susan Griffin, describing CFS in What Her Body Thought: A Journey into the Shadows

If a Tree Falls in a Forest

I wanted to share a very moving article I recently stumbled upon entitled "If a Tree Falls in a Forest..." It really resonated with me and seemed to express many of the things I've often wanted but failed to convey for so many years.

The article is written by Jody Smith, and is being reposted with her permission. You can find the original on her site at:
http://www.ncubator.ca/Tree_Falls.html


If a Tree Falls in a Forest ...
by Jody Smith

If a tree falls in a forest, and no one hears it...
does it make a sound?

To the chronically ill, this is more than just a
philosophical question.

We are people living out of the loop and our
connection to the rest of the world can be tenuous.
Some of us have more of a social network and some
of us have less.

Some people with a chronic illness are very much
alone.

Most people don't want to hear the long descriptions
of symptoms, the loneliness, the feelings of isolation
and alienation. They don't want to be the sounding
board for the person who feels they've lost any
normal semblance of having a "witness" to their life
and existence.

The invalid is very self-absorbed. They have to be. It
is a full-time job rebuilding their life and they can't
afford NOT to be very, very focused upon this. And
they will repeat, and repeat and repeat the things
that they need someone to hear.

When the sick one has a revelation, and no one
wants to hear it, they are lessened. Their sense of
self, of their place in this world, becomes
precarious.

I remember being told by a well-meaning friend a
few years ago, that I should not think that my value
as a person was any less now that I was not able to
"produce".

But she was wrong.

Should my value be less? Should my life be less
significant than the life of someone who is healthy
and productive, connected to others through
activities, who makes an impact on the world and
other people? No, of course not. But it is less. I
started out believing otherwise but over the last four
years, I have had it pounded home to me.

In a family gathering, the sick kid may be in the
background, on the outskirts. He is the least able to
draw attention to himself, because he is weak and
easily tired. And he has, really, very little to say. He
has no stories about school or work to tell. He has
no achievements to share and be praised for.

His biggest achievement lies in the fact that he
managed to get out of bed and dressed, and now
is curled up in a corner of the couch, while the
people around him share their normal life.

Lucky is the sick person who has a champion in their
corner. And that champion is likely carrying a heavy
load. Because the sick one has a great need to be
heard. To be affirmed and acknowledged. To talk
about their symptoms, their fears and their hopes.

They fear that, like the vampire, they have no
reflection. They do not have an effect on the world
around them. They throw a pebble into the pool and
the ripples are so insubstantial that ... they fear that
they may be disappearing. And that they may
disappear without anyone even noticing.

That's why I'm here. Because I fell, a long time ago,
and I want to be heard.

Can I get a witness?

Please visit Jody's website and blog at:
http://www.ncubator.ca
http://ncubator.ca/blogger

On Being Treated with Humanity

Note: This is an old journal entry I wrote years ago. While it initially starts out by describing some of my experiences with the homeless, it is ultimately about treating people with dignity and humanity, with (I hope) a clear tie-in to ME/CFS at the end.

My sophomore (and first) year at Tufts University, I decided to join the college weekly newspaper as a photographer.  During my first day on the job, I was told they were doing a story about the homeless in Boston. They wanted me to go downtown and take some photos of any homeless people I happened to come across. Fabulous, I thought. That sounds like loads of fun. While the assignment was not what I'd anticipated, I hesitantly accepted the challenge.

I took the T to Harvard Square, hoping I’d find someone in the subway or thereabouts curled up in a corner and covered in a blanket, and I could snap a quick photo without notice and be on my way. But there were no homeless to be found in the subway that day.

I climbed the stairs leading to the Square and walked around the shops until I found a man standing on a street corner with a duffle bag, holding a sign that read “Will work for food." I tried to casually snap a quick shot of him, but I realized I couldn't get a close enough photo without him seeing me. I was afraid this might anger him. So (realizing this might not be the best idea either), I decided to simply approach him and ask his permission to take his picture.

I explained to him that I worked for a local college newspaper, and that I would like his okay to take a photograph of him for an article we were doing on the homeless. "Well, that depends,” he immediately responded, "What does the article say about us?" I admitted that I did not know; I had not seen the article and wasn't even sure it had been written yet.

He then went on to tell me a bit of his personal story. I don’t recall all the details now, except that he was an educated man and had once been a professor, and that he’d merely fallen upon hard times. He went on to say that people often think the homeless all have similar stories that led them to where they are; that is, that they're all drunks, or mental cases, or drug addicts, or uneducated and lazy bums who couldn’t make do in the world. But that's not the case. While that stereotype may fit some, even many, every homeless person has their own story just like everyone else. One photo of one homeless man, he told me, could not possibly represent the homeless as a whole.

I admit I was surprised by his words, and by how articulate he was. I am not sure what I’d expected him to say, but I know I had not expected to engage in an intellectual conversation. Perhaps, I realized in that moment, I had been guilty of making such stereotypical judgments about the homeless myself.

In the end, he agreed to let me take the photo, but only if I made sure the article did not paint the homeless in a negative light. I wish I had spoken to him longer, had thanked him for his words of insights, and had not agreed to a promise I couldn’t keep. I don't think I realized at the time, though, how much his words had impacted me.

I thought of that man often after that, and never looked at the homeless in quite the same way again. Many years later, after moving to Arizona, I had another similar experience which also left a lasting impression. I was sitting on a park bench one day, reading a book on medical intuition in an attempt to solve my own struggles at the time (this was after I got sick, but obviously before being bedridden). I looked up from my book for a moment, absorbing a thought, when I saw a very young (and admittedly very scary looking) homeless man approaching me. He was probably just in his early 20s, and I vaguely recall he had piercings and tattoos all over him. I looked back down at my book, in part not wanting to stare, but mostly because he made me a little nervous and I didn't want to draw his attention.

I heard him stop in front of me and ask for change.  I looked up at him and smiled, apologizing that I did not have any money on me. Despite the news that I had no cash to give him, his eyes and face brightened at my reply, and he seemed surprised by my friendliness. He asked me what I was reading. Too embarrassed to say it was a book on medical intuition, where people claimed to be able to tell you all that ails you with one simple glance, I quickly responded "Oh, nothing interesting,"

“Well then, why are you reading it?" he asked, and this made me laugh.

He stayed and continued to chat with me, even briefly joining me on the bench.  I don't remember what we talked about in that short amount of time, but I do remember he asked me if I lived nearby, and if  he could use my bathroom to perhaps take a shower and wash up.  I emphatically turned him down.  He asked me if it was because he was a "bum."


“No,” I said to him, “it’s because you’re a stranger. I’m not in the habit of letting strangers into my home so that they can have a shower.”  He laughed at this and told me that was fair enough.

In the end, when he got up to leave, he looked at me and thanked me for talking to him. I gave him a somewhat absent-minded but friendly “Sure!” and suddenly he looked very serious. "No, really,” he said, “thank you for treating me like a human being."

This caused me to tear up a bit. I was deeply saddened to think this man had been so continuously judged and mistreated that he actually felt the need to thank me for responding to him with basic kindness, and recognizing his humanity.   My heart broke for him.

Despite the difficult circumstances I now also find myself in, I am grateful I live in a beautiful home with plenty of food and water and shelter from the rain. I have a wonderful companion (now my fiance) with whom, though long-distant, I feel the greatest of support, love, friendship and encouragement. I also have family and very dear, lifelong friends who care for and love me. But I now understand, at least on some level, what it feels like to be regularly misjudged, and to be seen only for where you are, versus for who you are. People who don't know me are quick to make assumptions, and people who do know me seem to sometimes forget that I am still that same energetic, ambitious, adventurous person inside, with the same dreams and desires.

I would even say that, at times, I actually do feel homeless in a way because I am trapped in a body that no longer feels like a true home to me.  It does not match the spirit and energy of my soul.

Several years ago, I had the unfortunate experience of seeing a doctor who, upon hearing I had ME/CFS, immediately responded "I don't do CFS. I don't believe in it, I don't treat it, and I certainly don't do disability forms for it." She then wrote down "major depression" on my chart -- without asking me one single question about my symptoms, my medical history or my beliefs. When I told her I wasn't depressed, she simply replied "I don't believe you." This happened in the first five minutes of entering the room before she even examined me, all merely from my stating I had CFS. It was the first time in my life I had been made to feel less than human, like I was a piece of trash. Much like, I suspect, the homeless feel on a regular basis.

Wherever we are in life, whether it is in a good place or bad, we are not defined by our circumstance. Life can change in an instant, even when you're doing all the right things, and all that you once had, all the things you once thought defined you, can suddenly be gone. And when you find yourself faced with such incredible obstacles, all you can do is give your best and try to face each day with courage, optimism, hope and some grace. But no matter who you are or where you are, each and every one of us has the undeniable right to be treated with kindness, respect, dignity, and above all, humanity.

My story

I remember the exact moment I first became ill. It was December 31st, 1996 around three o'clock in the afternoon. I was walking down the hallway of my cheerful, two-bedroom apartment, about to shower and get ready to go out with friends so we could celebrate the new year.  As I got about halfway down the hall, I quite literally and suddenly felt like I had been hit with a ton of bricks. I remember stopping in my tracks as I leaned my hand against the wall to hold myself up. "What is happening?" I murmured out loud, astounded by how abruptly ill I felt.

Dizzy, I made a beeline to the living room so that I could lie down on the couch and rest, hoping somehow that would be enough to make whatever this was go away. What bad timing, I thought, to have apparently come down with the flu on New Year's Eve. I turned on the TV in an attempt to distract myself from how sick I felt, but the images on the screen seemed so dizzying that I could barely tolerate two minutes of it. I had to turn it off.

My roommate walked in and I told her I thought I might have the flu. I didn't think I'd be able to go out that night. As I said the words, I distinctly remember thinking (and perhaps intuitively knowing) this was something much more significant than your average virus.

However, not one to be deterred by a silly bug (I virtually never called in sick to work), it didn't take much for my roommate to convince me to go out anyway. I told myself I'd feel better after I showered. I didn't.

We took the city bus to a club in Boston where we were to meet up with friends. As I sat in my seat, eyes closed from lights that felt too bright, I remember everyone's voices seemed simultaneously too loud and yet somehow distant and muffled, as though we were all mysteriously traveling underwater. I felt myself sweating from fever, though it was below freezing outside. My temperature that night, I later learned, was well over 104.

I honestly am not sure how I got through the evening, except to continuously tell myself all would be better in a few days. I remember laughing and drinking and even dancing on the dance floor. With the exception of my roommate, my friends remained clueless to the fact that I felt even remotely unwell. As midnight approached, I counted down the seconds with a room full of people as we all shouted out loud: "Ten... nine... eight..." Little did I know at the time that I was not just counting down the last few moments of 1996, but the last few moments of my life as I had known it.

The next morning, I woke up in a pool of sweat with swollen glands and a terrible cough. I got out of bed and clung to the walls as I made my way to the shower. Moments after turning the water on, I collapsed and fell to my knees with dizzying exhaustion. Something was dreadfully wrong. I fumbled my way back to bed and called my doctor.

Two days later, the nurse phoned to tell me that I had mononucleosis. I would need to stay home for at least two weeks, she said. "Two weeks?" I replied in dismay, “I’m going to feel like this for at least two whole weeks?" In actuality, it’s now been 13 years, and I am regretfully still counting.

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (two years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease.  Its original name (used in the U.K and some other countries) is myalgic encephalomyelitis (ME).  ME is currently classified under the World Health Organization as a neurological disease, though it also affects the immune, endocrine and other organ systems. The CDC recently acknowledged ME/CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD and end stage renal failure. It has been estimated that ME/CFS afflicts at least one million people in the U.S.

Yet, despite this, ME/CFS is still one of the least funded of all illnesses in the United States. More money is spent studying hay fever every year than on ME/CFS.

Due to such limited funding and research, to date there are very few treatment options currently available (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, not one has worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (three weeks after the original onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever had returned and I was unable to work for another three weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground and, though I knew this, I did it anyway. I was of the mind-set that I could push through anything and that, with enough determination, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that ME/CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the ME/CFS community as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was nine years ago. I have spent what were supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

As with many of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well-educated young woman. I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly two months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

Despite my situation and isolation, I was fortunate several years ago to have found a friend and companion who can relate to my struggles and who brings me hope and laughter every day. We met online, and we write daily. His friendship and sense of humor are my strength. He, too, has a severe case of ME/CFS, and is wheelchair bound. And he, too, became ill at a young age after a severe case of mononucleosis. He has been ill for nearly 25 years now.

Somewhere in the midst of writing each other for over five years, we became best friends and fell in love. He’s the most extraordinary person I know. Last spring, he found the strength to fly out to surprise me and propose, and I enthusiastically said yes. We are now thrilled to be engaged and can’t wait to be well enough to get married someday. We dream of having children and raising a family. We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do. A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD in mechanical engineering from Carnegie Mellon and might like to teach someday.

I hope to someday get my master's in speech pathology and work with deaf or special needs children. I also have aspirations of perhaps starting my own business.

I dream of the little things, too. I dream of someday being able to walk down the hallway or outside to stroll in the yard. I dream of being able to take a bath or a long, hot shower instead of a sponge bath. I dream of being self reliant and not relying on others for basic care. I dream of being able to call and spend time with my friends and family, and of the ability to speak for hours about their daily goings-on as we catch up on so many years lost. I dream of being able to play with my niece and nephew instead of being limited to letters to communicate. I dream of holidays spent with loved ones instead of all alone, as I am currently unable to travel and my health cannot handle many visitors. I dream of walking, and running and dancing. Most of all, I dream of the vibrant, glorious feeling of good health, and I strive for it every day.

Meanwhile, I remain forced to watch through my bedroom window as time slips by. The battle goes on.

I share all this with you today so that you can help spread the word that more needs to be done. More needs to be done to raise money for research so that treatment options or even a cure may be found. More needs to be done to help raise awareness and understanding so that those with ME/CFS are not made to feel shamed for being ill on top of all else that they go through. More needs to be done to educate doctors so that patients are not so easily dismissed or mistreated. And more needs to be done to change the name to one that doesn't trivialize the condition, and doesn't merely focus on just one of the many different symptoms associated with the disease. The word “fatigue” doesn’t come even remotely close to describing what we experience. We are sick, not tired.

Above all, more needs to be done so that those of us stricken with the disease can have our lives back.