Monday, May 11, 2015

Help Fund Research for Awareness Day

May 12th is myalgic encephalomyellitis (ME) awareness day.  ME is a very serious and complex neuro-immune disease which afflicts as many as 17 million people world-wide.  

One way to raise awareness is to help fund research that could lead to a definitive biomarker and a better understanding of the disease, as well as to potential treatments or even a cure.   If you are able, please consider donating to the Open Medicine Foundation's End ME/CFS Project, which aims to conduct the first comprehensive study on those like me who are severely afflicted with the disease and are bedridden and/or housebound.  It has been estimated that we comprise about 25% of the patient population, and yet, we have never been fully studied as a whole.  This new study is therefore very important in terms of understanding the disease and finding answers that could lead to treatment. 

The  Open Medicine Foundation (OMF) states: 
"As part of our End ME/CFS Project, this study will conduct a comprehensive, “Big Data,” analysis on severely ill ME/CFS patients with the goal of finding sensitive  and distinctive molecular biomarker(s). The molecular biomarkers that reflect the symptom mechanism are expected to be strongest in the approximately 25% of ME/CFS patients who have a severe form of the disease and are home-bound or bedbound.
...In addition to increasing the accuracy of diagnosing ME/CFS, a distinctive biomarker that correlates with symptom severity could reveal the disease structure or mechanism."  

The OMF's End ME/CFS Project donation page can be found by clicking the image below:

Donation Page


Another noteworthy fund raising effort has been set up by Tom Whittingham, brother of severely afflicted ME patient and advocate Naomi Whittingham.  Tom has created a beautiful and powerful video (posted below) to help raise awareness about ME, and to appeal for more research funding.  He will be running in the Edinburgh marathon to raise money for ME Research UK.    Please watch and share his video widely.   To visit Tom's JustGiving donation page, click here.




 
Even if you are unable to donate, you can still help!   Please consider signing this important petition asking that the NIH increase funding for ME and CFS research.  Despite the disease's severity and high prevalence, as well as an estimated economic burden of $20 billion per year, ME/CFS remains among the least funded of all illnesses in the U.S.   The NIH spends only 5 to 6 million dollars each year on the disease, and that amount is estimated to remain the same through 2016.  More money is actually spent studying hay fever each year. Increased funding means more research, more answers, and the possibility of finding a treatment or even a cure.   It will only take a second of your time to sign.    Thank you!

Update: Another similar petition has just been created and can be found here. 

Tuesday, December 30, 2014

18 Years and 18 Wishes

It was December 31st of 1996 when I first fell suddenly ill with mononucleosis.   I never recovered, and was later diagnosed with the neuro-immune disease myalgic encephalomyelitis (ME).

Over time, in large part due to the lack of appropriate medical advice I received those first few years, the illness grew in severity until I collapsed and became mostly bedridden -- so sick that I still can barely speak more than a few words at a time in a voice just slightly above a whisper. 

As this anniversary approaches and I reflect on so much time lost to this disease, I find myself experiencing a sense of grief over a life not fully lived.  Generally, I don't dwell on such things as it is just too overwhelming.  As I've mentioned in previous posts, in order to cope with such a degree of  loss, I've had to learn to shift my thinking and focus on what things I can accomplish on any given day, rather than on what I cannotLiving in the moment is the only way to maintain a sense of normalcy, and to find joy in what gifts still remain.

But 18 years is a long time to be this sick.  It's an entire childhood lived into adulthood.  It's nearly two decades of potential life adventures and wonderful memories never experienced and irrevocably lost.

Recently, I stumbled upon a blog written by a young woman with severe ME who has spent much of her youth confined to her bed.  She was about to celebrate her 30th birthday and she had 30 wishes she wanted her readers to help her fulfill.  Most were not wishes she wanted granted for herself, but for others.  She wanted you to join the bone marrow register on her behalf, to donate blood, to give to a charity, to sew a blanket for others who are bedbound. 

As my 18th "sickiversary" approaches this year, I have decided to compile a similar list of my own.  They are 18 wishes of sorts.  More specifically, they are 18 things I desperately wish I could do, but can't. And while I continue to maintain hope of someday regaining my health and being able to do all the many things I've so longed to do, that day has unfortunately not yet come.   

So, today, I ask you, if able, to choose just one item from the list and do it for me, as well as for all the others like me who have been bedridden and/or housebound with this disease for far too long.   In doing so, you will give this anniversary more meaning, and you will help transform it into a day of wishes fulfilled rather than of wishes lost.  It would be an immeasurable gift to me to know even one person had a small moment in their day that was just a little more fulfilling than it might otherwise have been.

So, if you are healthy and able, and you have time in your busy day, please try to do just one of the following:

1.  When you wake in the morning, take a moment to fully savor the feeling of good health.   Breathe it in and let yourself feel an overwhelming sense of gratitude for the amazing gift you have been given.

2.  When you get up and out of bed, take a moment to marvel at the fact that you can even stand up; that you can walk and freely move your body in whatever ways you wish.

3.  Revel in a long, hot shower or bubble bath.

4. Call an old friend on the phone you haven't talked to in awhile and spend some time to catch up on each other's lives.  If you don't have time for a long chat, call someone simply to tell them you were thinking of them, and that you love them.

5. Hug a child.  If you have children of your own, be sure to take a moment out of your day to hold them close, tell them how much they mean to you, and wonder at the tremendous miracle with which you have been so blessed. If you already do this every day, or even several times a day, do it just once more.

6.  Plan a romantic dinner with your significant other. Wear your fanciest dress or favorite outfit for the occasion -- if only because it's fun, and you can.

7.  Go for a walk.  It could be a stroll in a park, along a beach, in a garden, around your backyard, or even just down the driveway to the mailbox.  While doing so, take in the beauty of nature that surrounds you -- the brilliant blue sky, the abundance of trees and the sounds of birds chirping in the air.  

8.  Exercise. People with ME are unable to do so, often even minimally, without severe repercussions because our bodies simply don't respond appropriately.   So, for the millions of us worldwide with this disease who can't do so themselves -- join a gym, ride a bike, head out for a run, go swimming, climb a mountain or do something you love doing that energizes your body, and feel how amazing that sensation can be.

9. Do something you've always wanted to do, but have never done before.

10. Sing a song out loud from beginning to end with full gusto, even if you sound horrible.  Be grateful you have a voice.

11. Plan an exotic vacation or go on a road trip.

12.  Read a book cover-to-cover, watch a movie marathon or go to a theater/concert to see a professional performance.

13.  Do something artistic.  Paint, draw, sew, dance, write a poem or create something beautiful with your hands.  

14.  If you have been putting off a doctor's appointment, don't delay any further. Call to have that routine physical, a mammogram or any other test you know needs done, but that you haven't gotten around to yet.  

15. Cook a meal for or plan a night out with friends.  

16.  Simply go to work and be grateful that you can.

17.  Do something kind for someone today.  This is something I can still do myself, of course, but not to the degree I would like.  So, if you can, go out of your way to help make someone's day extra special. It could be a simple random act of kindness, donating to a charity or something more involved like volunteering at a hospital, church or shelter.  It doesn't take much to make someone smile and let them know they matter and that their life has value. 

18.  Try not to complain about the little things.  It can be easy to get caught up in the bustle of everyday activity and lose sight of all the amazing things you have right in front of you.   If you are in good health, are able to get out of bed each morning, go for a walk, go to school or work, engage with friends and family and the people who love you dearly -- these are the things that matter.  If you find yourself agitated or annoyed about something today, remember to take a moment to gain perspective and realize just how fortunate you truly are.  Soak in all the goodness in your life and appreciate every precious moment.  So much can be lost in an instant, and you won't want to have missed a  single second.




* Note:  I have received several emails over the years from readers and friends who ask where to donate to an ME charity on my behalf. I am touched by such kindness.  For those wishing to donate to an ME charity, you can find a list of just a few organizations to the right of this page, or in the FAQ tab above.  Thank you!!

Friday, May 30, 2014

Spring and New Things

"I am thankful that in a troubled world no calamity can prevent the return of spring." -- Helen Keller

I have always loved the shift of seasons.  Autumn used to be my favorite; however, since becoming ill, I find I much prefer spring -- the season of hope, renewal and rebirth.  As new buds grow on what were once barren trees, I am reminded that change is inevitable, and that winters -- no matter how long -- do not last forever.

This spring has brought with it a few changes for me. They are nothing of major significance, but so rarely does anything happen in my world that even the slightest activity or modification seems noteworthy.

Earlier this year, my parents bought a new reclining lounge chair to put by the window in the spare bedroom.   So far,  I've been able to sit in it with some regularity, and it's been wonderful.  It feels so good to be in an actual chair rather than a bed, even if I'm still lying down.  There's also something more freeing about being right by a window rather than looking through it at a distance.  I can see more of the bright, blue sky and feel the warm sun as it shines on my face. 


The spare room is adjacent to my own bedroom, so the view is similar.  Still, I get to see my mesquite tree (and all the wildlife that visit) at a slightly different angle, with a better view of the Rincon mountains behind it.  One of these days, I'd love to sit there in the early morning, just before sunrise, so that I can look up at the night sky (something I rarely get to see) and watch the sun come up over the mountains.

I received a new camera over the holidays, which means I've been taking even more photos of the birds and wildlife outside my bedroom window.  The camera has better zoom, allowing for clearer pictures.  Here are a few of my favorite shots from the last few months (click to enlarge):

Hawk (possibly a juvenile Cooper's Hawk)

Lesser Goldfinch

Lizard

Mourning Dove

Male House Finch Feeding His Girlfriend

More Finch Feedings

Two Female House Finches

Curve-billed Thrasher

Round-Tailed Ground Squirrel Munching on a Snack

Quail


Deer


(If interested, more photos can be found on my new Flickr account).

One day in early spring, I was lying in bed with my eyes closed, soaking in some music.  When I opened my eyes, I was surprised by the sight outside my window.  At first, all I saw was a splash of white and black striped fur, and it took me a moment to realize it was a bobcat.  He was actually lying down with his belly up and his legs in the air while he scratched his back in repeated motions on the surface of the ground.  I was stunned!  He was like a big house cat playing in the dirt. I quickly went to grab my camera, but by the time I could snap a photo, he was already standing back up and was on his way out.  Still, it was quite the sight to see!

Bobcat after a Back Scratch

In April, my brother and his family came out for their annual visit.  It's always such a joy to see the sweet, smiling faces of my niece and nephew each morning.  My limitations in interaction and speech allow me little more than a hug and a few whispers of "I love you" every day, which always breaks my heart.  But I'm grateful even for those short, precious moments with them.  They had grown so much since I last saw them. Here's a photo that my father took of them enjoying the view on top of Mt. Lemmon.

On Top of the World

It had been a very long wait, but this past May, for the first time in almost a year, I was twice able to lie outside in the patio lounge chair on our deck.  It was pure bliss.  Each time, the sky was a deep cerulean blue with little brushstrokes of wispy, white clouds.  At one point, I saw a group of  Harris' hawks flying overhead, gracefully encircling each other as they worked together in search of food.  On desert grounds, the cacti were just starting to burst open with colorful blooms, and I saw a white-winged dove feed on a saguaro cactus blossom nearby.  Further below,  I could see lizards, gophers, squirrels, butterflies and bunnies all scurrying about, looking for nourishment.  I savored every minute of it.

Bougainvillea


Soaptree Yucca

White Winged Dove on Saguaro Cactus

White Winged Dove Feeding on Blooms

 Dove on Cactus Blooms

Prickly Pear Cactus Bloom


Turkey Vulture Flying Over Mountains


Bunny


Beautiful View

I've mentioned in previous posts that, as a result of cognitive issues stemming from ME, I have not been able to watch TV or movies in over a decade.  I actually have a drape over my television set so that I can listen to news and a few other shows without being tempted to peek at the screen.  I am generally okay with short clips (such as on YouTube) if there is relative stillness and not much rapid movement. However, viewing repetitive screen changes for even a couple seconds often causes an instant, debilitating crash/setback.

I used to be a big film lover, so it's been hard to have missed out on so many great movies over the years.  Recently, I tried listening to a couple films to see if I could follow along without actually watching, and I was surprised by how well it worked.  As long as the movie is heavy in dialogue, I'm able to visualize it and follow along with relative ease.  I've enjoyed listening to several movies and some documentaries as well.  It's opened the door to a new activity beyond just listening to audiobooks all day long, so I'm grateful for that.

On another note, I decided awhile ago to take a huge step back from advocacy and awareness efforts.  Actually, it wasn't a decision as much as a necessity. The energy expended just isn't worth the potential toll on my health, especially with so few positive results.  However, I continue to sign petitions, donate to causes/research, use Twitter and post to my blog's Facebook page when able.  Of course, I also strongly support and greatly appreciate the ongoing work of other advocates who are still pushing forward to create change, and I do what I can to assist in those efforts.  It is so important that our voices continue to be heard.  For the time being, I just personally need to move away from large scale efforts (such as videos and testimonies) and focus more fully on my health.

And that is one thing that regretfully has not changed.  My health remains the same.  I continue to experiment with various treatment options but, so far, without much success.  I have been taking MAF probiotic 878 for almost two years now, and for awhile, it did seem to help to some degree -- most specifically with cognition.  The improvement was mild, but it was enough for me to take notice and appreciate.  It was the first time in 17 years that anything really seemed to help me, even if only slightly.  It's not clear that the supplement is still providing any benefit, but I continue to take it even if mostly out of hope.

In the meantime, other than my new lounge chair, I generally remain confined to my bed, unable to stand or walk.  I still can't speak more than a few words above a whisper.  I continue to suffer setbacks, sometimes severe, from even the mildest of exertion.  But, for now, I try to take things moment to moment and make the best of what is while continuing to look for solutions. And, of course, most importantly, I remain determined to persevere.  I still have hope that, someday, my own personal spring will finally come. I am so ready for it.

Monday, May 26, 2014

Some Resources for Those who are Bedridden

Years ago, when I first became housebound (and eventually bedridden) with ME, I had very few places to turn.  I was living alone at the time, and while I had some friends and family nearby who were willing to help, my sense of pride prevented me from asking for the wide range of assistance I suddenly needed.  Overnight, I had gone from working full-time to being unable to grocery shop, do my own laundry, clean, cook or otherwise care for myself.  Doctors did not have answers for me, and the ordeal of getting out to appointments in and of itself would often set me back further.

Desperate for help, I contacted various agencies and organizations looking for assistance. However, more often than not, I was turned away.  Unless I required hospice care or had a lot of money to spare, few had anything to offer me.  Indeed, I have been continuously surprised by the scarcity of resources there are for those who are chronically housebound and/or bedridden.  These lack of services became even more evident to me once I began blogging. Unfortunately, I have received numerous emails over the years from other bedridden patients who have been unsuccessful in seeking the same kind of help that I, too, have had such difficulty finding.
     
In light of that, I thought I'd share a few services I've come across in the hopes it may provide some benefit to those who need it.  Please realize that, unless otherwise noted, these are agencies and resources I've found simply by doing a basic web search over time. I am not affiliated with any of these companies or websites, nor do I know anything about the quality of service or expertise they offer.  It's important for anyone to do their own research about an organization when seeking out professional help.

First, there are some services that are provided by Medicare and Medicaid for those who qualify.  For a comprehensive list of what Medicare offers in home health care services, please check out their Medicare and Home Health Care brochure.

Regretfully, many of the services Medicare does NOT offer are those that bedridden/housebound ME patients often desperately need -- particularly those who cannot rely solely on friends and family, or who spend much of their days alone.  These exclusions (if they are the only assistance you need) include personal care given by home health aides (such as bathing and dressing), meal delivery and homemaker services like shopping, cleaning and laundry.

From what I understand, should you qualify, Medicaid offers more services than Medicare.  These services tend to vary by state. For more information, check your state's Medicaid program, or visit http://www.cms.gov/home/medicaid.asp

Fortunately, there are many in-home health care agencies around the country that will provide cleaning, shopping, meal preparation and some degree of medical care, but at a fee. For those who can afford it, a quick online search can provide information on home health care in your area.  Nurse visits can also often be arranged through these agencies; however, generally speaking, doctor visits can not.  Most agencies will instead provide transportation to a doctor's appointment for those who are able (free transportation services are also often available to those who qualify).  However, for many with severe ME, a trip to the doctor's office, even with assistance, is not always possible due to the severe (and sometimes permanent) setback such an outing can cause.

In the last many years, there seems to be a growing number of organizations throughout the country that are beginning to offer physician services in the home. One such organization is the  Visiting Physicians Association.  Also, the American Academy of Homecare Medicine  offers a list of doctors by state who, as a public service, also make house calls.

Please again note that I am offering this information as a resource only and have no other knowledge about these agencies beyond what is listed on their website. Also, keep in mind that while these doctors make house calls, they may not (and, in most cases, probably do not) have extensive or even basic knowledge about ME.  Regretably, it is very difficult to find a doctor well-informed about the complexities of this disease, particularly in its severest form.  It is even harder to find one who is also willing to make house calls.

For those who may not be aware, Dr. Charles Lapp, an M.D. in North Carolina, recently put a call out to severely ill/bedridden ME patients. Right now it appears he is merely collecting the information, with possible hopes of  trying to find ways to provide care to these patients in the future.  For more information about contacting Dr. Lapp, please see here.  If nothing else, it's important for doctors to realize how many of us are out there looking for help. 

Specialty doctors for basic dental or eye care at home can also be extremely difficult to find. However, there are some dentists and optometrists who will offer limited care in the home for those who are bedridden. You can contact your state's dental or other specialty organization to ask if they are aware of any doctors in your area who make housecalls. For example, with some persistence, I recently found an optometrist willing to come to my home by emailing my state's optometry association.  A couple years ago, through the help of a local acquaintance, I also found a dentist in my area who routinely makes house calls,  which turned out to be a true life-saver for me.  I would never have survived such an extensive outing to fix all the issues I was having.

Many cities also provide mobile services for ultrasounds, EKGs and X-rays (with restrictions), provided you have a doctor who will order the tests for you.

Please note, however, that many of these doctors and services do not accept insurance, or insurance will not pay because the services are provided in the home.  This of course means that, unfortunately, these options might not be feasible for most patients.

I've also received many emails over the years asking how I avoid bed sores, or what kind of products I use to ease my comfort or accomplish certain tasks throughout the day. I am fortunate that I am well enough to sit up and turn myself in bed, and can still get up to use the bathroom on my own each day (the latter with the help of my wheelchair).   As of yet, bed sores have not been an issue for me. However, there are products available to those who find this a concern, as well as other products designed to make life a bit easier for the bedridden. AllegroMedical is one site where you can purchase such items, but there are many other websites available as well.

Those who have read one of my former blog entries, Eyes Wide Shut, know that, as a result of cognitive problems stemming from ME, I rely on a text-to-speech program to help me navigate online and to read all my emails and other items for me.  There are also several speech-to-text programs available for those who would find that helpful.  I don't have an iPod or iPad, but I know some versions have a voice application called Siri that could be useful to some patients.

I also participate in my local library's Books-By-Mail program, which is a free service that lends audio and large print books by postal mail to the visually impaired and disabled.  Many libraries have similar programs.

In addition to all the above, Emily Collingridge wrote an excellent book called Severe ME/CFS: A Guide to Living.  It is designed specifically to help provide a wide range of  resources to those with severe ME and/or CFS (geared towards the UK, but useful for all).  Her book can be purchased through her website (http://www.severeme.info/).  

Lastly, this illness, especially in its severest form, is incredibly isolating. I have received many emails requesting information on how to meet and communicate with other bedridden patients.  This is difficult for many reasons, but primarily because most bedridden patients are too sick to be online for any length of time, and thus cannot fully participate on social media or other similar forums.  However, for those who are able, sites such as Phoenix Rising HealClick, ME/CFS Forums and Facebook social groups like Severe ME Chat and Support. might be useful and provide some comfort.

Perhaps the most helpful piece of information for those bedridden with ME  is simply knowing you are not alone.  Here is a list of just a few blogs and websites written by or devoted to those with severe ME (more links can be found to the right of this page):


*More blogs have since been added to the above list after others brought them to my attention.



"Just knowing you're not alone is often enough to kindle hope amid tragic circumstances."
― Richelle E. Goodrich
~~~

If others have additional resources to offer on any of the above, please share them through the comments section below. My research abilities are restricted due to my physical limitations, so I'm certain there are things I have left out.  Also, the resources listed in this post are specific to the U.S. since that is where I live.  No doubt resources in other countries will differ.  Thanks for understanding!

Saturday, January 25, 2014

Through a Window

Last spring and early summer, I was able to lie outside for an hour or two for the first time in nearly three years.  It felt glorious.  I hope soon to get another taste of that little bit of freedom. However, for now, my health does not permit it.  And so, for the time being, I remain indoors, looking out through bedroom windows.   Here's just a tiny glimpse of my small world taken over the last several months.


Deer


Deer Eating Cactus Blooms


Bobcat!


Cactus Wren


Western Bluebirds in the Distance


 Lesser Goldfinch


Another Lesser Goldfinch


Male Finch


Finch Takes a Nap at the Feeder


Female Finch Keeps Watch


Pyrrhuloxia (Type of Cardinal)


Antelope Squirrel


Harris' Hawk


Sharp Shinned Hawk (standing on one foot)


Man on the Mountain
~~~


Meanwhile, indoors, spring blooms in winter.  It reminds me to stay hopeful.


Hydrangea (before and after)


Amaryllis Before


Amaryllis After

"Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops at all."  ~Emily Dickinson
 

Thursday, August 8, 2013

Awareness Video (Revised): What is ME/CFS?

A few years ago, I created a short, informational video in the hopes of increasing awareness about ME -- the extremely serious and debilitating disease from which I suffer.  Due to my health, it had taken me over four months to complete. 

However, since that time, some of the research changed, and the video therefore became outdated.  Over the course of several months, I have therefore slowly worked on revisions -- updating information and adding more patient photos.  You can find the new version below.  Please feel free to post and share widely in order for it to reach a broader audience.

I should note that the majority of patients featured in this video are on the more severe end of the spectrum.  They are shown here because they are otherwise not often seen.  Bedridden and/or housebound, these patients are typically unheard, unnoticed and forgotten.

My goal is to help raise awareness about the harsh realities of this illness and the urgent need for increased funding.  With more funds for research, there will be more answers, and with answers there is hope.

Thank you for watching, and much thanks to all those who kindly allowed me to use their photos and to briefly share their story.


Note:   In using the term ME/CFS for the purposes of this video, CFS refers to the Canadian Consensus Criteria and the International Consensus Criteria.  There is some controversy about this issue.  For more on the importance of definitions, please refer to David Tuller's excellent article "Chronic Fatigue Syndrome and the CDC: A Long, Tangled, Tale."


This video was originally uploaded on August 7, 2013 and re-uploaded on August 31, 2013 in order to make a few additional small edits.  Thank you for your patience.

Sunday, July 14, 2013

On Memories

"I remember everything!"

As a little girl, I was known to frequently make this rather bold (and no doubt equally annoying) proclamation. There was nothing in my life, I proudly declared, that I didn't remember. This drove my older brother, ever pragmatic, a little bonkers. "You can't remember everything," he'd tell me. "It's impossible."

My mother once tried to ease his frustrations by reminding him of the fact that I was only five years old. Not much had happened to me in my life yet. I didn't have all that much to remember.

Memory loss, particularly in terms of short-term memory, is one of the many symptoms those with myalgic encephalomyelitis often experience. Fortunately, it's not one of the symptoms that has thus far plagued me. Despite suffering severely from other cognitive difficulties as a result of ME, my memory remains strong.

Sometimes I can't help but wonder if part of the reason I can still recall so much from my past is the same reason suggested to me as to why I could recall so much from my childhood.  That is, very little has happened to me in the last many years.  While my friends and family have gone on with their lives, experiencing a variety of new and exciting things, my own life has essentially remained stagnant.  As a result, I am forced to spend much more time in my memories than others typically do.

A few months ago, I listened to the audio version of Roger Ebert's moving memoir, Life Itself.  As most know, Ebert lost his ability to eat and speak after the return of his cancer required surgery to remove his jaw.  For a time, he was confined to his bed, unable to communicate.  He writes, "In the days of my illness, unable to walk, I started to walk around London in my mind. ...I had nothing to do but lie in bed with my memories."

Ebert later goes on to say:
In these years after my illness, when I can no longer speak and am set aside from the daily flow, I live more in my memory and discover that a great many things are safely stored away. It all seems still to be in there somewhere. …You find a moment from your past, undisturbed ever since, still vivid, surprising you.
I, too, can sometimes get lost in memories.  I close my eyes and I am seven years old again, riding my bike with neighborhood friends to the local convenient store, where we purchase a chocolate bar or ice cream treat for 25 cents each. I can still see the colorful display of candy and treats, momentarily overwhelming me with all  the possible choices.

Sometimes, I close my eyes and find myself returning to Boston, walking through the quaint and cobblestone streets of Beacon Hill, then down through the gardens and past the swan boats of the Commons, and finally over to Newbury Street, which always comes alive at nightfall. 

Later,  I am back in London.  Then Paris.  Venice.  San Fransisco.  New Orleans. Disney World. The beaches of Hawaii.  Or any number of the many places I was fortunate enough to travel to when I was healthy.

Often, I relive the smaller moments of life too.  I close my eyes and I remember what it was like to wake up and freely move from my bed.  To take a shower, walk to the kitchen, cut up some fruit and make myself a simple bowl of cereal.

I close my eyes and I am anywhere in past time, living life as a healthy person again. 

This is not to say I live in my memories, of course.  It's only to say that I am grateful for them. 

I got sick when I was very young -- just a few years out of college.  But I am lucky that I had so many adventures and experiences in those 24 years that I can now reflect back upon and relive in my mind. Some people with this illness aren't so fortunate in that regard.

I think of other sufferers like Emily Collingridge, who first fell ill with ME when she was just six years old.  She spent virtually her entire life sick, and for much of that time, Emily was fully housebound and, eventually, completely confined to her bed.

Just try to imagine that for a moment, especially if you are someone who has been blessed enough to have a life free of disease.  Imagine what it would be like to get sick as a very small child, so that almost all of your memories from your past are of being horribly ill. Emily, who died from complications related to her illness when she was just 30 years old,  likely had very few recollections of what it was like to be healthy. 

And then there are those like my fiance, who developed ME at the age of 19, and who actually does experience the symptom of memory loss. While it's primarily the short-term that Jim struggles to recall, his long-term memory is also affected.  He often expresses frustration at not being able to remember many details of the few years he spent growing up in France.  Or of his time in high school, or college, or getting his PhD.   He remembers the core of his life, of course, but the memories are fragmented, with large gaps in between.

Memories are an integral part of how we define ourselves.  They are a scattering of our most precious and important moments that, strung together, create within us a story we can then tell each other about who we are.  I can't imagine what I'd do if I didn't have those memories to look back upon and remind me of who I was when I was healthy.  They provide me not just with glimpses of what once was, but of what may someday be again.

And so I close my eyes once more, and I choose a memory.   Today, I return to the Grand Canyon and try to remember what it was like to stand at the edge of something so majestic.   In doing so, my memory also becomes my wish.  Someday, I hope, I will again be standing at the edge of something remarkable, and I'll no longer have such a need to look back.