the corner room

Last May, Mike and I moved into a new apartment. At the time, we had lived on the second floor of a 1916 duplex for nearly nine years. The place had seen a lot in that time. When we moved in, in the fall of 2003, I was still able to work (about 15 hours a week, mostly from home). I was able to do my own grocery shopping, to occasionally see friends for lunch or dinner, or to go with Mike to a movie. I was well enough to paint two rooms in our then new place–slowly, with lots of breaks–and to work in the garden. I did all my own cooking, laundry, and self-care. Although I wasn’t well enough to leave the house every day, I was fairly independent, able to drive short distances and fend for myself in many ways.

In 2004, Mike became sick, and was soon after diagnosed with ME/CFS, too. Just a year and a half later, I experienced a major setback that removed the remainder of my independence. From 2006 until May, 2012, I was only able to leave the house for the very occasional short car ride and, once, for an appointment with a doctor. My life was constricted primarily to one room, to one couch. And so it remained, by necessity, for six years.

But in early 2012, we received an unexpected piece of news. The city of Saint Paul was planning a massive, six-month, 12-hour-a-day construction project in our neighborhood. The project was slated to begin in May and would involve the total removal of our street and sidewalks in order to replace the neighborhood’s 100-year-old water pipes. Our house was in the center of the planned construction area.

At the time, I was about six months into treatment for hyperacusis, a complex and debilitating condition that causes severe sensitivity to sound and can last for years. My treatment was promising, but needed to be taken slowly and carefully. Even a few days of construction noise could have caused a severe setback. But there were other things to be concerned about, too. People with ME/CFS need to live in a controlled environment in order to function at their best. Like so many others with the disease, I am hypersensitive to stimuli of all kinds: light and sound, touch and smell/chemicals, the vibration from riding in a car, or the input from a busy computer screen. The disease also makes it difficult for me to adapt to changes, even small ones, without experiencing a crash or setback. Keeping a routine in all aspects of my life is essential to keeping me feeling my best. Moving me to a new apartment would be a risk, but staying through six months of pounding, vibrating, roaring, ear-splitting construction was riskier. We had no choice but to move.

Preparations for the move were in full swing by March, and had I not recently experienced some small but significant improvements in stamina, mobility, cognition, and ability to encounter stress without setbacks, I cannot imagine how the move would have happened. But, I was lucky. Improved physical and mental functioning not only allowed me to process the enormity of the move and all that it would entail, but to participate in it. Over time, and with careful pacing of both eyes and energy, I packed up most of our belongings myself.

Although it felt good to be able to help, my contribution to the move was minor. There was a huge amount of work to do, from finding a new apartment that met our many needs (quiet neighborhood, quiet neighbors, hardwood floors rather than carpet, which can off-gas harmful chemicals, etc.) to carefully planning every aspect of the move itself in order to minimize any post-move downturn in my health. My dad, who was then living full time in Saint Paul in order to help take care of me, took on the brunt of the work, hunting daily for a new apartment and overseeing the many details of the move, large and small. My mom, who still teaches full time, came up frequently from Philadelphia. Together, they worked with Mike and my brothers (who would be traveling to Saint Paul from their respective homes in Baltimore and Berlin for moving day) to plan and prepare.

With construction scheduled to begin on May 1st, we were all relieved when, in late March, a suitable apartment was found, just six blocks north of our old one and in a similar size and almost identical layout (complete with a corresponding “corner room”). As our focus turned from apartment-hunting to preparing the new apartment for two tenants with chemical sensitivities, friends helped wash it from top to bottom with chemical-free cleaning products.

By the end of April, we were ready. The many weeks of hard work by Mike, my family, and our friends had paid off. Hours of extensive planning were about to be put into practice.

For me, moving day began like any other day, except that, after waking at my normal hour, instead of putting on sweatpants and slippers, I put on jeans and sneakers. Once dressed I retrieved my breakfast (pre-made by Mike) from the fridge and retreated to my corner room couch to eat and wait. My once crowded room, the one I had spent so many hours of every day in, was almost empty, cleared of boxes the night before. Once settled with the door closed, I alerted Mike and my family that I was ready. While I was in that back room, safely guarded from loud noises and the bustle of moving, Mike, my brothers, and a few friends carefully moved nearly everything out of the front of the apartment. I barely heard a thing. Next, my brothers came to get me.

The question of exactly how to physically move me to the new apartment had been discussed and researched extensively. My family even practiced their plan in advance, with my mom acting as my stand-in. The key was to get me from one quiet corner room to the other with minimal physical, visual and audio input, and minimal stress. With the front of the apartment now cleared of people and furniture, I was pushed in a wheelchair from my corner room to the front door, and from the building to the car, a rented SUV that would minimize vibrations on the road. I wore a mask over my eyes and carried noise-cancelling headphones to minimize any input that could add to post-move fallout. On the 5-minute drive, Peter kept me relaxed and entertained with stories of eating crickets in Mexico, while Nick drove. They had prepared a makeshift bed on the backseat of the car for me to lie down on, but I was so excited to be in a car for the first time in almost two years that I sat up the whole way, temporarily swapping my eye mask for dark glasses, so I could look out at the world passing by.

When we reached the new apartment building, also a duplex, my brothers carried me, one on each side of the wheelchair, up the two flights of steps. At the top, I was whisked back to my new bedroom. “Welcome home,” I remember Peter saying. The bed, which had been moved that morning while I was in my now former corner room, had been freshly made by my mother during our trip over. I shut the door and lay down in the half darkness, in need of rest, but exhilarated to be in the new space. the room smelled clean and faintly of lemon. the opaque blinds had been pulled down to protect my eyes, but I could make out yellow walls and warm wood molding. As the bustle of moving continued in the front of the new apartment, I lay still, listening to the faraway murmur of voices and the gentle whirr of the air filter.

Our move was a success, thanks to exhaustive preparation and help from family and friends. My recovery was brief, relatively speaking. I was back to my pre-move state in about two weeks, a marked contrast to the 8-week recovery I experienced after a one-hour excursion to a doctor two years earlier, in 2010. I believe that the fallout I experienced, minor as it was, was mainly due to the inevitable stress of moving. Stress and ME/CFS don’t mix well, after all. I also had to wrestle with anxiety about leaving a place I had lived in for years, years spent primarily within its walls. Those walls and their contents had been my constant companions and friends, keeping me company during many long hours of solitude, during years in which interaction with other living beings was minimal. I struggled with the uncertainty of moving to a place I had never even seen.

Today, as I type these words one year later, I am on the brink of another move, and experiencing many of the same feelings. But, although this second move will be bigger (I will be moving to another part of the country), I am better prepared for it than I was for last year’s move. I know now what is possible. I know that it is possible that this new move, big as it is and daunting as it feels, will turn out OK, too.

Tarsha at work (Photo courtesy of Heart Your Skin)

If you have not heard of the online global marketplace known as Etsy, you are likely in a rapidly shrinking minority. With several hundred thousand sellers worldwide, Etsy specializes in handmade and vintage goods, from clothing, to food, to furniture, to skincare and beyond. Anyone can set up shop on Etsy. There are no requirements for how quickly you build your shop or how many items you have for sale. For these reasons and others, I have long wanted to write about Etsy, as I believe it can be a great way for those of us with ME/CFS to generate a little income and have some fun doing so.

Ever since I was a kid, I have enjoyed making things and selling them. For many years, on hot days, my neighbor and I sold lemonade and homemade cookies to the busy college community in which we lived. One year, I set up a “candy shop” outside my bedroom. I would buy the candy in “bulk” at the local convenience store and repackage it with colorful tissue paper and ribbon for sale in smaller quantities. Sure, my only customers were my brother and his friend, but it was no less fun.

As an adult, I began to dream about opening a gallery, my grown-up version of having a shop. But because of the physical and cognitive limitations of my illness over the last decade, this has not yet become a reality. Still, I have been making art as I can, and in 2009, with the help of my brother Nick, began producing limited-edition prints of my work. I have been selling them ever since, via word of mouth and at the occasional exhibition. So when, several years ago, I first learned about Etsy, I was intrigued, to say the least. Would this finally be my opportunity to have my own shop?

In 2010, I began setting up my shop. It turned out to be more work than I expected, but even at the slow pace at which I had to work, I found the process exhilarating. Many times I wondered to myself why I did not know more people with ME/CFS who were doing the same thing. As I planned to write a post about my experience toward the end of 2010, I had to abruptly stop working on my shop because of the rapid deterioration of my health. Two years later, though, I am back to work and loving it more than ever. There is still so much to do, from taking photos, to planning packaging, to lots of online research (all with Mike’s support and help), but I am going slowly and trying to be patient.

In doing some research for my shop on the Etsy site, I recently came across an interesting article written by a woman named Tarsha from a shop called Heart Your Skin. The article, from a series of Etsy blog posts that focus on new shops, started like so many others, as Tarsha described her childhood explorations in skincare. But it soon began to turn into more familiar territory…

As I am still a very new Etsy seller, and the full story of my shop has yet to be written, I wanted to share the story of Tarsha and her shop. It’s a good one.

Fresh Shops: Heart Your Skin

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 of train, 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.