Lost in the Woods

January 4, 2010

Chronic fatigue syndrome (ME/CFS) takes people to many different places but its pushed few people as far from a normal life as it has Lisa.  Lisa has a twofer;  a severe case of both chronic fatigue syndrome and environmental illness.  If chronic fatigue syndrome is often numbingly difficult environmental illness (EI) or multiple chemical sensitivity (MCS) is simply harsh.  EI often pushes people out into a kind of grinding third world type battle for  shelter and warmth that few in our society have to worry about.   Add ME/CFS to EI and you truly have a struggle of epic proportions.

LOST IN THE WOODS – by Lisa

My name is Lisa and I am a survivor of the devastation multiple chemical sensitivity (MCS) and chronic fatigue syndrome (CFS) can cause to an otherwise healthy and happy life.

In June 2001 I was a very happy woman, completely in love with life and a good man named Jeremy. I had been putting myself through college to earn a Bachelor of Science degree in Environmental Sciences. My studies had been leading  me towards job offers to study birds when I graduated in six months and I felt as though I had finally found my calling in the quiet peace that field researching animals can bring.

That first week of June saw me arriving home from a ten day birding field trip to a very excited dog happy to have me back and an equally excited boyfriend. He had decided while I was gone that he was ready to become more serious by moving in to my apartment with me. It would be less than two months later that we would move out of that same apartment, our health and lives quickly spiraling out of control. There had been something highly toxic in that apartment which caused this. We have our guesses as to the cause, but that is all they are – guesses.

We moved into his father’s home while trying to regroup and find out what was wrong. Whatever the toxic cause was, we were very disturbed and worried when we started noticing that anything made of plastic which had been in the apartment, was now seeming to slowly melt. It is like that moment in the horror movie when the hero finds out that help will not be coming in time and it is only them against all the monsters they face. You just lose a bit of hope right then that everything is going to be alright.

As the summer turned to fall, our symptoms of multiple chemical sensitivity (MCS) and chronic fatigue syndrome (CFS) began to take more form and control over our lives. Work was becoming almost impossible to do on a full time basis. I had an injury to my dominant wrist that was refusing to heal and nearly crippling the arm for any use due to pain. In search of help with the multitude of symptoms, Jeremy went to his primary care doctor who he had seen for years. It was recommended he increase his daily intake of water, nothing else. No suggestion of pacing himself, resting, or avoiding his MCS triggers.

In October of 2001, we moved from the town we lived in after having no place left to stay that was not too toxic for our MCS. The few belongings we had kept from the toxic apartment had poisoned anything that came into contact with them, causing us to become more ill every day.  Abandoning everything we ever had, including the clothing we wore that day and the shoes on our feet, we started fresh in a different town a few hours away.

For the first two months after our clean start it seemed we may have had a chance. My wrist finally began to recover and I had almost all use back by December. Jeremy was working a physically demanding job but seemed to be slowly adjusting to the strain on his body and having a little more energy. Then through a series of random events, each one more toxic than the last, our reclaimed lives lost all sense of reality. By January we knew again we had to abandon everything after an unfortunate occurrence brought into our home something so toxic that it stripped the wax off the floor anywhere it had been sitting.

January 13, 2002 is a day I will never forget. It is the day that saw us being dropped off at a ten acre piece of undeveloped property Jeremy’s mom owned on the Olympic Peninsula in Washington State. We had nothing except a tent, a couple of thin blankets, a backpacking stove with a little bit of food, the clothing we wore, and five dollars in our pocket.

That first night was very dark, lonely and terribly cold. As the temperature dropped, we had no way to stay warm but huddle together for warmth while continually sipping hot broth made on our stove.

Over the next few days, some family friends of Jeremy’s mom would come by and bring us food, clothing, and extra blankets. His mom had been out of the country on business when we arrived at her property, but when she returned she helped us to get on food stamps and state disability. We still lived in the tent because though we could have stayed at a few different homes, none of them were safe for our MCS and even a short visit would leave us feeling wrecked and miserable for several days.

This is how life continued for several months until a brief respite from our tent came from an offer my mom made in September 2002. She would adjust her life to accommodate our MCS and CFS. For three months we lived with her in a one bedroom apartment while trying to find a larger place we could all share. It was not easy, but as time passed we were learning how to make it work and having hope that soon we would find a two bedroom rental. We were always very cautious when talking with landlords before going to check a new rental prospect, making sure there was no fresh paint or pesticides used. Then one day a landlord chose to lie to us and we walked into a nightmare of paint fumes and residual flea bombs.

After exactly three months to the day, in December Jeremy and I moved back to his mother’s property and a tent. Once again we had to flee from a home and belongings that were now too toxic for us to continue to be around. His mom was there to help us with more clothing and blankets right away this time and it was less of a shock than the first time we abruptly found ourselves moving into a tent almost a year earlier.

It is in this very same tent from which I write these words nearly seven years later.

Over the years many things have changed, as is the way of life. Less than two years after we left my mom’s home, she would pass away with me too ill to travel and see her while she laid in the hospital for three weeks  slowly dying. During that time, we began a fight to retain our state disability payments because our case worker had decided that despite medical evidence, we had given up our very happy lives to live in a tent on undeveloped property and malinger to obtain disability. A label of malingering can be a death sentence to social security disability and so we fought every effort she made to further destroy our lives.

We would survive snow storms that caused our tent to partially collapse with us sleeping inside. A deep freeze for two weeks that turned the edges of our blankets to solid ice and the frozen water vapor of our breathing made the inside of our tent sparkle as though in a crystal cave. Years passed without power or any source of heat, our water was hauled from a spigot over a thousand feet away and through a curving path in the woods. Our only entertainment was occasional books from the local library and a small battery-operated radio that somehow picked up a television channel from Canada.

Any time we left the property to go to town for groceries, doctor trips, or any of the myriad reasons a person leaves their home, we would be faced with the frightening gauntlet of the chemicals people use on a daily basis without concern. The prospect of accidentally bringing home on our clothing some unknown chemical that would cause our MCS to flare horribly and us again lose all that we owned dogged our every step in town. We barely escaped this fate twice before learning how to survive our near weekly trips.

Each trip would also mean bathing with cold water after returning home to wash off all the chemicals we had come in contact with away, regardless of weather.  It was pleasant enough in the summer, but come winter time with snow on the ground and having to break the ice crusted over our wash water it took a grim determination to survive by any means necessary.

After receiving word in August 2004 that the hundreds of acres next to us would have copious amounts of herbicide applied to them in as short as three days, we packed up our tent and moved back to five acres Jeremy’s father owns. This time we were not to be sharing his dad’s home as we had when this nightmare began, but instead we pitched our tent in a small patch of woods near a water tap and a dilapidated chicken coop.

The life we set up for ourselves in this tent near the old chicken coop is much the same today as it was five years ago, except for a few major differences.

With the help of a very caring doctor and a kind attorney, we were granted social security disability in late spring of 2005. With our newly stable income, we knew we no longer wanted to live in a tent and thought we finally had the means with which to leave. Fearing a repeat of our rental search nightmare at my mom’s, we decided to use our back payments and a loan through Jeremy’s father to try and build a safe house for ourselves out of alternative building materials. Traditional materials such as plywood, asphalt shingles, and treated lumber were all far too toxic for our ever increasing MCS.

We chose to instead build a load bearing straw bale house. Unfortunately, negligent contractors have now turned our hope of a warm, safe home into a money sink that is three quarters done, too toxic for us to be within 20 feet of it without feeling ill, and no way to afford finishing it. We are now shackled to this tent not only because of our MCS but also from the monthly payments owed on the loan for building. It felt less like being homeless when we could afford to move out should a chemically safe rental have been found, an option now lost to us for the next ten years due to the loan.

Jeremy’s father has helped us to finally halt our loss of health by picking up our groceries and prescriptions, thus allowing us to remain housebound in our low toxic forest environment all but a couple times a year for doctor visits. The internet that runs to the computer in my tent provides for our other life needs such as clothing, supplements, and entertainment.

The same power that allows us to have computers and a light at night, also allows us to cook on a two burner hot plate and have a hot water heater connected to the nearby spigot. With the addition of hot water, we also have access to hot showers and a heat source during the winter. To stay warm, we fill canning jars and bring them to bed with us as an MCS friendly hot water bottle.

However some things have not changed at all. We still have trouble in the winter when it snows; last year saw four feet drop in the space of three days. Living somewhat rurally, the power will go out several times during the winter and this leaves us back to body heat for warmth and the tiny, somewhat MCS toxic camp stove to cook on. Torrential rains can last for two weeks making a life mostly led outdoors very cumbersome and wet. There is also the wildlife in the area which includes bears that come near our camp and mountain lions that we never see but hear about from the neighbors.

Over the last two years we actually began to regain some of our lost health and have hope that maybe, one day, we might actually find a way out of this hole that life put us in and then forgot we existed. This summer saw us try a new supplement on our own and then crash back to the same murky depths that our CFS and MCS had bottomed out in before. Slowly we are creeping back from there again, this time the climb out seems to be a little easier than the first time.

Until this last month, we had not been able to afford treatment from that same talented and caring doctor who helped us to obtain our social security disability. But we finally made the decision after our crash a few months ago, that we couldn’t regain our health alone or on the medical budget building a house had left us with. Finally relinquishing to the inescapable fact that we were not going to be able to scrimp and save enough money to finish the house, we instead started putting our money towards trying to become well.

CFS leaves us mostly bedbound all but a hour or two a day, while our MCS continually causes even simple jobs to become hugely more complicated as we work to avoid the chemicals on most products. Living would be infinitely easier if we were indoors and less chemically sensitive to life.

I have much hope that the new treatments we are both on will bring about a means to leave this tent someday, because so far nothing else has.

  • Check out Lisa’s blog with its evocative pictures of the forests of western Washington as read about her experiences of tent living in this beautiful but harsh environment.
  • Lisa is despite her circumstances one of the most prolific, uplifting and, believe it or not, cheerful posters on the Phoenix Rising Forums.
5 comments

{ 5 comments… read them below or add one }

Cinda Crawford January 7, 2010 at 9:53 am

I am appalled, amazed, inspired and humbled. May you find the answers that you so desperately need <i<very soon. You’re welcomed keep in touch and sign up for the free membership site that I’m starting soon for people who want to heal from Chronic Fatigue Syndrome and/or Fibromyalgia. I healed some 5+ years ago and, at that time and to some extent, I was very unsure that it would ever happen. I only knew it was possible and I was the one who had to have faith and keep looking. Thank goodness there was a way. My challenged and brave friends, I’m here to help you in anyway that I can. It would be my sincere pleasure.

Cinda Crawford, host of the Health Matters Show

Reply

Sarah LaBelle January 17, 2010 at 11:59 am

Oh you are two very amazing people, to be so resourceful against Chemical Sensitivity. My late husband was very sensitive to most everything, so I saw these challenges up close. We both had ME/CFIDS; just he was challenged with both conditions.
Your notion to build yourselves a home was a good one. I wish you had recompense against the builders for their failure to follow directions, and ruin your home. Presumably you or your relatives have exhausted all avenues for recompense, sought whatever help that US HUD or any other agency might give you, so you are not paying off a loan for what you can never use.

I spent much time searching for building materials when my husband and I lived together in the 1990s. We were in an old two flat that I owned at the time. He tested it by visiting it, and he did well with its features. When new work was needed, like paint in the rental unit, I learned how to get zero VOC paints, which worked for him. He was not aware the painter had begun in the rental unit just below him — what a victory. As we were both ill, and I was getting sicker, it seemed impossible to consider building new.
Now it seems that more builders know how to do what is needed to build a new home in which a chemically sensitive person could live. Your story, on that aspect, is most discouraging. Well, I hope you keep seeking a solution that protects you from the elements. What a world in which we live, that the simple requirements for a ‘safe house’ cannot be met readily.

Reply

admin January 26, 2010 at 6:53 pm

The combination of ME/CFS and MCS is such a difficult one. I don’t think people realize how exposed to the elements many people with in MCS are. I camped out for many years in a much milder climate but even a mild climate it gets very cold in winter and it gets wet and it gets plain ugly. I can’t imagine living in a tent in the snow! My heart goes out to them and I hope that some point they can find a way to finish that log cabin – it looks like they’re not that faraway – but when you’re living on the edge, not that far away can be forever.

Reply

Lisa February 11, 2010 at 5:33 pm

Hi Sarah! I’m sorry I missed seeing your comment for so long!

Very sorry to hear about your husband having to go through this grueling nature of both CFS and MCS. It is good you two were able to find some answers to help deal with the needs of life when MCS is involved.

In answer to what you said about recompense, unfortunately there was not much that could be done beyond getting back half of the last bit we paid the contractors.

We are going to be paying on the loan for the next 7.5 years and it is one of the key factors preventing us from moving indoors at least in a rental. There just isn’t anymore money to go around after the loan payment, medical costs, and food.

Cort – you summed it up very well with “when you’re living on the edge, not that far away can be forever.” Thank you, it really does say it all.

Reply

Veronica February 27, 2010 at 8:56 am

I also have mcs and live on the olympic peninsula. I am thankful I can still get out. Thank you for sharing your story. It takes courage to try and regain your health. Keep strong.

Veronica

Reply

Leave a Comment

Previous post:

Next post: