the corner room

As I have not written about my health in many months, several people have kindly asked for an update. The short sweet answer is that I am better, overall, than I was last spring.  But there have been many setbacks, small and large, so many ups and downs and starts and stops that it is difficult to write about my progress, to sum it up, in a personal email or on the blog.

For the hyperacusis (severe sound sensitivity) that began last March, I have been working with an audiologist since June 30^th, using a program called Tinnitus Retraining Therapy. Recovering from hyperacusis takes time and includes, in my experience, thrilling highs and painful setbacks. Even though I am making progress and can now tolerate most of the sounds of daily life in my home, the extent of my ability to tolerate voices and to speak changes regularly, sometimes daily. But I have been told I will be cured and when that happens, I will write about it.

Both my energy and eyes have seen improvement. In fact, by mid-January, remarkably and wonderfully timed to coincide with the birth of my nephew, I could briefly look at printed-out photos, one or two per day, for the first time since 2010. An eye crash relapse a week or two later, the first in almost a year, reminded me that my situation remains uncertain.

Even so, I am moving forward. Because of the experiences of the past year, I know more about what is wrong with my body than ever before. Because of the tireless work of determined doctors and researchers over the past few years, there are more treatment options for ME/CFS than ever before. It is 2012, I have been sick for ten years now and I am more optimistic than ever.

Please note that all posts are still typed, proofread, linked and published by my mom, dad and/or Mike.

The following is a transcript of the speech my father gave on September 15th, 2011, at the Whittemore Peterson Institute fundraising gala. 

I am most honored to accept the WPI’s Outstanding Advocate award.  In doing so, I pay tribute to the Institute and to the broad and varied forms of advocacy performed by so many dedicated people, each playing his or her part in the fight against neuro-immune disease that  the WPI was created to combat.   

My daughter, Alexis, is seriously ill with Myalgic Encephalomyelitis (better known as ME.)

She has been housebound in St Paul MN for six years.  Because of her deteriorating condition, I have had to move full time from my home in Philadelphia to help her.  Our biggest problem is that she has no attending physician. She is unable to travel to an office, and we have found no one willing to manage her care at home.   I, a sculptor, make medical decisions for my daughter, based on telephone consultations with a web of physicians throughout the U.S., Canada and Europe. 

One of the fundamental difficulties in dealing with this illness is this lack of ongoing medical care.  Doctors for the most part do not believe the illness is physical or infectious, and in large part are unable or refuse to treat it.  Another giant hurdle is the lack of coherent data.  The WPI is dedicated to addressing these problems.

Patients with neuro-immune diseases are taken out of the game of life, and there is so little help. They, and their advocates and caregivers alike, are isolated from friends and family, and cut off from the usual avenues for medical care. Lives of patients and families are constrained, limited, and indeed shattered by these experiences. An ME sufferer once said to me: “This is not the worst disease but it is among the cruelest.”

I am here today because the WPI is a bastion of hope for my family. I was in Reno in August 2010 for the dedication of the WPI building, and to help my son Peter make a short informational video for the WPI.  In an interview for the video, WPI founder and director Annette Whittemore recalled a watershed moment.  About the illness, she thought:

“Why isn’t anyone doing anything?   And you keep asking the question, and then one day you wake up and say, maybe that person is me, maybe that is what I am supposed to be doing.”

Out of Annette’s moment of revelation the WPI was born.

In this chaotic world of illness-dictated living, my daughter and I are like an island detached from the mainland of life. The WPI is a new causeway, a bridge bringing less isolation, more cohesive research data and more treatment.  Through the tireless work of Dr. Judy Mikovits and Dr. Vincent Lombardi, the WPI represents a new dimension: a new dynamic. The Institute’s goals are to bring research data to the study of neuro- immune disease, and to provide a framework where doctors can accumulate and share treatment options. 

The question I ask myself is what can I do to help?

Personally, I do not believe that the government is going to step in and help to find a cure for ME. Instead I think the future for research and treatment is as a private enterprise with private financing, like the March of Dimes. We cannot wait to be rescued. We have to do it ourselves. Increased scientific research and improved clinical medicine cost money.

Over the last two weeks I have contacted everyone that I know and everyone that my daughter, wife, and sons know, and asked them to make a small contribution to the WPI. In the course of this effort each of these individuals has learned more about my daughter’s illness - and about the Institute that is working on a solution.  Many people came forward (some with a little persuasion). All of these people are new givers. All now know more about neuro-immune disease - and the WPI’s work to find treatments that work. All of them will give in the future.  In two weeks I have raised $10,000.

I present my efforts as a demonstration, an example of what one person can do. Stringing a number of these smaller grass roots gifts together can meet achievable and valuable goals – hiring an additional lab technician, making informational videos for outreach, or financing small pilot trials.

I ask that each of you consider acting as I have done to spread the word about the WPI and to increase knowledge of and support for the Institute’s critical work. The need is so immediate and so great.  Those whose lives have been destroyed by this illness deserve all the help we can muster. There is great urgency.

Thank you.

A note to readers: My hearing has improved dramatically over eleven weeks of treatment so far.  I will write more about it as soon as I can.  Thank you for the incredible support and kindness you have shown me this year.

I admit this might be the cheesiest post ever. But, you see, I’ve been going through The Sound of Music, scene by scene, in my mind, singing the songs to myself in my head. One of the most famous of these, “My Favorite Things,” just keeps coming back: “Girls in white dresses with blue satin sashes,/ Snowflakes that stay on my nose and eyelashes …” The theme of the song is pretty basic: when you are feeling sad, just think of some of your favorite things and you’ll feel better. Simplistic, I know, but I decided to try it once, after the song had been stuck in my head for days. And, well, it worked. I felt better, at least for a little while, and I’ve tried it many times since with the same result. So, cheesy or not, here goes: a few of my favorite things (CFS or no CFS) …

taking the train, any kind, anywhere

the smells of my dad’s studio: plaster, wet clay and Murphy’s Oil Soap

that scene in Double Indemnity where Fred MacMurray and Barbara Stanwyck meet at her home to discuss life insurance, but instead end up discussing her anklet and the speed limit

Nina Simone’s version of “I Put a Spell on You”

playing Scrabble with my mom and grandma in East Otis, MA

Mike’s Elvis impression

Gilmore Girls

the fact that I am (almost) always healthy in my dreams

Scott Franzke and Larry Anderson calling the Phillies games on WPHT

the smell of warm rain (and being out in it)

when you open an old paperback and find, stuck in its pages, the relics of the last time you read it: ticket stubs, postcards, receipts, scraps of paper with notes that don’t mean anything anymore written on them

the blue blue Minnesota twilight sky

Indian food

new socks

the ending of The Age of Innocence

going to the movies alone

walking the streets of New York City, my favorite place in the world

The day after my last post was published, my dad arrived in St. Paul, bringing with him Tactile Fingerspelling, a way to communicate with folks who are both blind and deaf.  Because I still cannot see and because my sensitivity to sound is now so severe that I cannot talk or tolerate the sound of other people’s voices, even in a whisper, it was essential to find an effective way to communicate.  Tactile Fingerspelling involves executing signs directly on a recipient’s hand, including all five fingers and the palm.  It was easy to learn, since I only had to memorize 26 signs, one for each letter of the alphabet.

The downside of this simplicity is that everything has to be spelled out, which can be tedious for both the signer and the recipient, especially when one of them has ME/CFS.  It takes a lot of concentration (and energy) for me to follow the signs, and I find I frequently lose track during long words and long sentences.  I have even, on occasion, been so mentally or physically exhausted that I could no longer comprehend the signs at all, leaving me unable to receive information for a time.  All in all, though, the “hand language,” as I call it, has made a very difficult situation a little easier, and it sure beats having words spelled out, letter by letter, into my palm.

Although Mike and my dad are limited to fingerspelling in order to communicate with me, I am able to communicate back in several ways.  The most important of these is writing, which allows me to express complex thoughts and to ask questions of my companion that can be answered with a simple “yes” or “no” (one tap on the arm for yes, two for no).  Being able to write also allows me to continue to use my fax-based celery email to communicate (one way, of course) with my family during this difficult time.  (It was through celery that I sent this post—handwritten—for my incredible mom to type up and publish.)  Besides writing and fingerspelling, I employ American Sign Language (what very little I can remember), those universal signs we are all familiar with, like “thumbs up” and “okay” and the age-old technique of exaggeratedly mouthing words in hopes that others can interpret them.

It is not easy for me to get information these days, but from what little I do get, I believe that there are several versions of Tactile Fingerspelling out there.  The one I use is here on You Tube.  My hope is that I will not have to use it much longer, that whatever is happening to my eyes and ears will reverse itself, and that listening and talking will be part of my life again soon.

Sometimes, when my symptoms have taken a particularly baffling turn, but my good humor is still intact, I can appreciate the absurdity of it all. If I were a believer—let’s just say I’m “uncertain”—I’d say God has been having some fun lately at my expense. But it seems unfair to blame God or anyone else for the absurdity that is ME/CFS, an absurdity which has inspired my Dad to nickname the illness, “Edgar Allan Poe disease.”

The past five months, kicked off by this Thanksgiving eye crash, and punctuated by a frustrating number of infections, have been some of the most difficult I have experienced. After a promising couple months of steady improvement, my eyes relapsed on February 2nd, and I have been back in the mask 24/7 ever since. Since November, then, as I have been confined by low energy to one room, and by a mask to total darkness, radio and audio books, and—less often—the internet via my screen reader, have been my lifeline, my chief connection to a world that continues to operate outside my four walls.  In mostly good spirits, I have enjoyed this run of listening, to Jane Austen, Somerset Maugham and David Sedaris, to NPR and the BBC’s coverage of Libya and Japan, to The Current, and Radio Classics, and most important, my beloved baseball. I have many times been grateful to be able to hear and listen and comprehend, and have sometimes dared to wonder, not without a little humor and an understanding of the unpredictability and fragility of my condition, what would happen if I lost my ability to hear.  What if I lost this last thread of connection, to Mike and my family, to the books and news and radio programs, to the birds outside my window, just starting to sense the late-coming Minnesota spring? I was just joking, mind you. Did you hear that, God?

Four weeks ago, I woke up with noise sensitivity so severe that even the sound of running water is painful. Sensitivity to noise is one of my regular symptoms, common to people with ME/CFS, but for me, it has never been this bad, I can no longer listen to the radio, CD’s, or my screen reader. The sound of Mike’s voice ranges from mildly uncomfortable to intolerable, and our interaction has been limited even more than usual. Now, instead of spending my time between local radio, satellite radio, CD’s, brief phone calls with my family, and conversations with Mike, I spend my days not just alone, and not just in the dark, but in near silence, often wearing earplugs.

Why this has happened, or the eye crash, or the infections, is unknown. Why, after over two years of general stability, my body has taken this sudden and dramatic downturn is also unknown. But this is what ME/CFS is. There is no data on this disease. There is very little research; there are no standard protocols for treatment. It is the Wild West of illness. Mike and I, my family and I, we are on our own, save for a few heroic doctors who are willing to step into this wilderness.  All of us are working our butts off to try to change the situation I am in, but we are on our own.

Not one to be undone by a new limitation, I have taken advantage of all these additional hours of free time by re-doubling my focus on the therapeutic aspects of my life. Instead of being structured around radio shows and baseball games, my days are now structured around pills before breakfast, with breakfast, before lunch, with lunch, before snack, after snack, before dinner, with dinner, before bed. I have no excuse for missing one of the three shots I give myself a day, or one of the three transdermal cremes. I have been meditating more, and when I am feeling strong enough, and able to use it, the FIR sauna. For entertainment, I am thinking of trying to learn Braille, which would help me get back to reading, I hope. I am trying to appreciate rest, and imagination, and the life of the mind, revisiting past places, events and people, picturing better days ahead, trying to remember all the words to my favorite songs and the plots of my favorite books. And I’ve even dared to joke a couple of times about what might go next (my voice? my sense of smell, now so essential in identifying food from the fridge or which supplements are which?).  Just a little gallows humor in honor of Mr. Poe.

Note: It was challenging to write this post without being able to see or effectively hear, and I owe a lot to my mom for proofreading and posting it.  I was not able to rewrite and revise, as I usually like to do, so this is essentially a rough draft.

Since writing this post, things have become worse.  The sensitivity to noise is so intense, my whole upper body is sensitive to any sound, and feels often like it is buzzing.  I can only communicate by writing things down. Mike communicates with me by spelling out words into my palm with his index finger, one letter at a time.

My eyes crashed severely on the Tuesday before Thanksgiving at 6 PM.  This wasn’t the first time they had crashed severely.  The first time was on December 19, 2009, as I was reading Special Topics in Calamity Physics, a novel I couldn’t put down.  That crash left me unable to read, look at photos, or draw, but this crash has forced me into the dark.

ME/CFS is characterized, in part, by “crashes”: sudden increases in symptoms that can follow too much activity (physical or mental), a secondary illness, or stress.  A typical crash, for me, includes increased fatigue, mental fogginess, headaches and weird pains, achiness, and increased sensitivity to noise.  Until last year, I didn’t realize that my eyes could crash on their own, separate from my typical, whole-body crashes.  

This current crash has two distinct parts: Extreme sensitivity to light and profound weakness of the eye muscles, which makes it impossible to focus on anything without major discomfort.  My eyeballs hurt and feel exhausted with a minimum amount of movement left or right, up or down.  The muscles in my face around the eye sockets feel strained and twitch periodically. I cannot look at anything, not words on a page, the remote control, the labels on my medication and supplement bottles, or the numbers on the phone touch pad.  I haven’t seen Mike’s face, or my own, in two weeks.  

Much of the time, I wear a mask that blocks out all light, especially when I am sharing a room with Mike, who, being a normal person, prefers the lights in the apartment to be on.  But when I’m alone, the lights are off.  We’ve covered the windows with dark sheets to block out light, which gives the apartment a haunted house look, even during the day.  Being in the dark all the time has its challenges, and I’ve had to learn to do everything by feel, from retrieving food from the fridge, to dialing a phone number, to maneuvering around the apartment.   

The neurological effects of the crash are bizarre.  Frequently, whether my eyes are closed or open in the dark rooms, I see flashing lights, like strobe lights which give my surroundings an even more nightmarish feel.  With my eyes closed or in the mask, I see shapes, colors and figures, moving, morphing, transforming,unfolding like a silent film against the inside of my lids.  Now crowds moving along a city street, now children in a playground.  Where in the recesses of my brain do these vivid images come from?  Sometimes all I see is a continually stretching, reaching, brilliantly colored, violet or green form, imploding and exploding like the default screen saver that used to appear when my Mac sat idle for too long.  

This crash was unexpected, a shock, and once again, I am reminded not to underestimate this disease.  When something like this happens, difficult and unpredictable, I seem to go through four distinct phases.  The first, which only lasts a day or two, consists of disbelief, outrage and denial.  Then there’s the sadness and anger, which can last for days, and features regular outbursts of crying and yelling at innocent people and inanimate objects.  The third stage includes problem solving.  The sadness and anger start to ebb a bit, acceptance of the situation is imminent, and it’s time to problem-solve.  (For example, I came up with a system to mark the keys on my computer keyboard with tape so that I can identify keys I don’t have memorized, like Command and Option, and I’ve learned to designate permanent homes for things like the remotes, phone and water glass so that I can find them again in the dark.)  The last stage I call “equilibrium.”  New solutions have been implemented, the sadness and frustration, though still there, are less acute and volatile, and I have adjusted to the changes in my daily routine.  Life gets its rhythm back after being suspended for what seems like way too long, and I find I can focus better on my projects and things beyond the crisis.

Since I began writing this post, things have improved slightly, which is encouraging.  But once again, the disease has reminded me that it’s bigger than I am, and unpredictable, and has tricks up its sleeve.  I’ve been taught this lesson before.  I probably should have taken better care of my eyes, should have rested them more, should have stopped trying to look through the box of old photos Mike found, should have stopped taking pictures so often.  Maybe I could have prevented the crash, but then again, maybe not.  I will be more careful now, at least as long as the memory of being sightless lingers.  But someday I’ll forget, or I’ll ignore, and reach for something that’s just a little bit too far beyond the edge, and I’ll crash again.            

Every Monday afternoon, I get an intravenous infusion of the nutrient mix known as a Myers cocktail. Although it sounds like a fruity rum concoction, a Myers cocktail is actually made up of essential minerals and vitamins, like magnesium, selenium and vitamin B12. IVs are frequently used to treat ME/CFS—in which poor absorption of nutrients through the gut is typically an issue.  Pumping nutrients straight into the bloodstream literally bypasses this problem.

The IV treatment is administered in my living room by Mona, a nurse with more than a decade’s experience giving IVs to folks with cancer, HIV, Autism, MS, ALS and ME/CFS. The whole thing takes about 30 minutes, although if I’m feeling extra bad, she slows down the drip, so it can take longer, maybe an hour.

I had never had an IV inserted before I started this treatment, but from what little I know, the type I get is relatively easy and discomfort-free.  Mona uses a small needle (23 gauge), the same size my phlebotomist uses to draw blood. Finding a cooperative vein can sometimes be tricky, but this has to do with my lack of visible veins rather than with her skill, which is excellent.  Magician-like, really.

My friend Jay, who also has ME/CFS, gave me three pieces of advice about getting an IV Myers cocktail:

1. Eat beforehand. 

2. Have a glass of water nearby. 

3. Take as much time as you need afterward before getting up. 

I concur with all three.  Mona particularly recommends eating a small protein-based snack before and after if you have any of the stomach upset that can sometimes result from IV treatment.

Jay’s third piece of advice is especially important, as a Myer’s cocktail can make you feel strange in a number of ways.  This is due in large part to the high dose of magnesium, a vasodilator, which means it opens up the veins, allowing blood to flow more freely.  

First, there’s the heat, a comforting sort of heat—but quite strong—which creeps from the throat and chest to the extremities within minutes of starting the drip. It was pretty intense the first time—though not uncomfortable—and it has gotten less so over time.  Sometimes, the magnesium (and the heat) can make you feel extremely sleepy.  I have heard of patients falling asleep during IV treatment, and it’s easy to relate.   

Another occasional effect is a pounding heartbeat, a result of the dilated blood vessels.  This makes me quite chatty, in an I’ve-had-two-gin-and-tonics-on-an-empty-stomach kind of way. 

Sometimes there’s lightheadedness, which could also be described as wooziness, or an out-of-it, slow-to-process feeling.  Again, not uncomfortable, but kind of nice.  It’s calming, which is actually very pleasant for me, as I’m often revved up on adrenaline, my body’s way of trying to bolster the insufficient cellular energy by artificial means. 

Lastly, an IV Myers cocktail can cause an increase in fatigue, which is where it pays to be careful.  I notice this most strongly when I’m already having a bad day or when I’m in a crash, and I’ve cancelled IV those days to avoid further crashing. Some days, I actually feel an uptick in energy or a feeling of well-being after IV. It only lasts a short time, maybe 20-30 minutes, and it’s followed by the usual calm but fatigued feeling. 

The heat, pounding heart and any chattiness usually disappear quickly once the IV is over.  Wooziness can last a little longer, occasionally an hour or two. The increased fatigue can last the rest of the day for me, and sometimes even into the next day.

But does it help? Good question. Of his experience, Jay writes: “[After I get IV,] I feel strong the rest of the day, and calmed by the magnesium.  This lasts for a few days.  I feel that the drips, once or twice a week for the past 2 years, have been an important part of my recovery.”

My experience isn’t as easy to define. That is, I’m not sure what exactly the IV does for me. From my discussions with Mona, I think this is normal for some people.  Improvements don’t always present themselves immediately or in a clear way.

I can tell you this: Psychologically, it’s one of my favorite treatments.  There’s nothing like watching a bag of pink liquid disappear into your vein to make you feel like something must be doing something. I have several test results from the last few years showing low antioxidant status and high oxidative stress, and mainlining antioxidants like B12 must be addressing that problem.

More specifically: I haven’t had a cold in the 8 months since I started IV, some strange pains I have had in my spine have diminished, my muscles twitch less (this is a well-known effect of increasing magnesium), and I feel better overall. Subtly better, but better. Is it the IV or other new treatments, like Oxymatrine? Or is it just one of the upturns and downturns of the disease that seem to come and go without explanation? Who knows? But I’ll take it.