By: Anne-Marie Vidal

Three years ago, I was more dead than alive. It had been years since I had gone anywhere outside a 5 block radius of the building in which I lived. If I cooked two meals a week, it was a very unusual week. I could not go to the grocery store; I could not do laundry. My poor functioning extended into my social life: I rarely saw friends. Indeed my most frequent visits were to doctors, and I managed to average 5 doctors appointments a month. I tended to dress with care for them, since the clothes in my closet went unused for any other events. And despite being in New York City, my medical care was not particularly good at the time.  In fact, it was horrendous.  My pain levels were so high, that I passed a kidney stone on my own; I only attempted to get medical help when my temperature hit 104 degrees then those efforts amounted to naught.

After the kidney stone incident, my husband, Dennis and I took a hard look at our lives. The climate in New York was killing me; the dampness that fed mold and mildew aggravated my allergies, heightened my pain, and was inhibiting my mobility.  I was trying desperately to exercise and pleading with doctors for pain medication. I was put off on the issue and denied real help. My health deteriorated; I developed hypertension, and an irregular heart beat. Once an independent successful career woman, I was now totally financially dependent on my husband. We were pricing scooters so that I might be able to get around.  But I gave up the idea as New York is not a handicapped scooter friendly environment. My emotional life was on the Internet for it was there that I could make friends with others like me.

In August 2000, I developed a sinus infection and a fever (or what used to be called a fever) my temperature has never returned to normal.  Prior to that sinus infection, my average temperature, like most CFIDs patients was 97.6 degrees.  Suddenly, my temperature ranged from 99.8 to 100.6 on a daily basis. My doctors knew tried treating the temperature with antibiotics; the fever would lower for a week without quite returning to normal, and then return to its previous high.  If my symptoms flared, my temperature peaked.

The most ludicrous event was the kidney stone incident.  Since I had never passed a kidney stone before, I was not sure what was happening, but no matter how I tried to get a doctor to listen to my symptoms, he made it clear he was more interested in my husband than me. I was left untreated. Granted my husband is handsome and a great guy but I was sick, in pain, vomiting, and had diarrhea. When the same scenario repeated itself a few months later, and I had better medical care, I would learn that I had kidney stones. The previous emergency room visit was not only preposterous but could have been permanently damaging. 

We both realized that living in always damp New York was hurting me.  We also realized that my doctors might have been on the recommended physicians list of two fibromyalgia and CFIDS organizations, but that they were not the right doctors. I had never had more than the standard blood work and no matter how I pushed I could not get the necessary blood work done. We began thinking about where we could live, where the climate might be good for us.  We knew it would take planning and sacrifice and eventually it would mean leaving all our friends.  Could we do it?

In January 2001 we estimated that it might easily be 2004 or 2005 before we could take early retirement and leave New York.  We had picked out New Mexico as a favorable state in which to live. California was too expensive; and Arizona was a possibility that we also considered, but the summers in the cities that we were most attracted to were too hot.  We read and studied about New Mexico and took our first trip in January 2002.  We fell in love.  We visited Santa Fe and Albuquerque; and decided that Santa Fe reminded us too much of the crowded, trendier parts of Manhattan and we would be happier living in Albuquerque.  We also found that 29 degrees in the bright sun of Albuquerque felt like 45 in New York.  I found myself with a good deal of energy, and an appreciation of the state called the land of enchantment.  Not surprisingly, I cried on the return flight to New York; when we landed it was snowing and raining.  Was this home, constant pain, constant wheezing and lung trouble?   I did not want my limitations to define my life any longer.

Back in New York, I found better doctors quite accidentally and through pure laziness. I had decided to see the doctors in my building simply because, I was tired of taking a cab across town, waiting two hours, and receiving mediocre care and then taking a cab back at great expense. I only wanted to see doctors locally.  Insult was added to injury when I traveled to an appointment, by cab and found a sign on the door that “The doctor is not In. Come back next week.” I had had enough.  Finally. 

Surprisingly, the doctor in my building was superb and set me up for an excellent recommendation for a neurologist and a pain management doctor.  My seizures improved, my epilepsy medications were adjusted to find ones that did not leave me nauseous and with other unpleasant side effects.  It took time, but I noticed that as consequence, my gait improved when I walked although walking was increasingly painful.

As we talked of our plans to eventually leave our Brooklyn home, we were met with opposition. Some of it came from well meaning friends and acquaintances that could not imagine living anywhere but New York.  Talking to them, I tried to make them comprehend that I had been unable to use public transportation for the better part of 2 years.  Attendance at Broadway plays, and Shakespeare in the Park had long been off my agenda. In conversation I stressed that New York’s cultural benefits had not been accessible for a long time. Some people just did not understand; I was talking to a wall. With my family, they were simply shocked that I would ask my husband to leave his home state and move cross country to an unknown environment.  “How could you do that,” they would ask.  Assurances were repeated that Dennis wanted to move, and anticipated retirement eagerly. They were still a little baffled that we would try to pack up and move cross country.

My mother had Rheumatoid Arthritis and an undiagnosed case of Fibromyalgia.  She was very disabled and debilitated by these diseases. Her hands were deformed, her arms weakened, her knees were replaced as were her knuckles in both hands.  These operations were not successful; my mother could not walk and lived with daily pain. She was in various studies and every drug was tried.  Nothing much helped.  My parents had visited New Mexico in the late 70s and loved it, yet they had stayed in the always damp, snowy environment of Michigan instead of moving. While I respect their choice, I know that not moving cost my mother greatly in daily suffering.  Knowing my late Mother’s history made Dennis doubly determined to move.

During the next several months, my husband and I were to continue to plan for our eventual if unscheduled relocation. We began cleaning out our closets and holding the New York version of a garage sale—a stoop sale. We had one in 2001, two in 2002, and three 2003. They gave us an opportunity to clean out our closets, and raise money for charity.  We also examined clothing we never wore and donated it to the appropriate charitable organization. We were on a mission; keeping closets cleaned out. During this time I went through my beloved doll collection and donated dolls to several charitable events for fund raising activities.

A pleasant surprise came in February 2003; New York State had announced the granting of early retirement incentives including lifetime reduced cost health insurance.  My husband would be eligible at a reduced pension.  Our income would be reduced to approximately 35% of what it had previously been.  On the other hand, our cost of living would be  reduced. We carried no consumer debt. The main question would be: could we adjust to somewhat reduced standard of living?  We decided to accept early retirement; put our apartments on the market and move seriously toward relocation.  As it happened we had a vacation to Albuquerque planned for March 2003; it became an apartment hunting trip. 

Meanwhile my pain doctor had been treated my arthritis of the spine, my Rheumatoid Arthritis, and Fibromyalgia with medication, matrix therapy and massage therapy.  At times I thought the massage/matrix therapist had heavenly hands; she was incredibly sweet and sensitive.  Walking was still painful; and it was getting worse. My regular doctor noticed that my hips were seriously out of alignment and my pain doctor recommended a spinal specialist.

The spine doctor ordered a stand up MRI. The results showed a great deal of nerve compression; herniated disks and disk bulges. I was told I need a laminectomy; the pressure I had been feeling on my sciatic nerve was bone spurs and bone overgrowth that was compressing that nerve. I had been falling as my leg would seem to go out from under me.  A laminectomy and spinal fusion was indicated.  I was startled and confused, I turned to my general practitioner, and he was not immediately supportive. My pain doctor wanted me to have a shunt in my spine to insert the medication directly. I did not see this solving the problem.

As has so often happened in my life, two events happen simultaneously.  One so clearly beneficial, Dennis’s early retirement-- our chance to move and the other, the news I needed surgery, the benefits of which were less clear. We had so much to do, how could I be operated on? Within in a week of hearing that I needed surgery, I fell twice; numbness in my legs was lasting longer, walking was more difficult. I was using two crutches all the time. I researched the spinal fusions; people had them every day; it was time to put my fears aside.

As luck would have it we sold our apartment to someone who wanted to delay closing for several months, giving me sufficient time to recover from surgery.

When the day of the surgery arrived, I could barely walk on my own,  with two crutches and the assistance of two men, I slowly made my way to cab that would take me to the hospital.  At the hospital, a wheel chair was used once I got to admitting.  While the hospital stay was appalling (Hospitals: Hazardous to Your Health? http://ourfm-cfidsworld.org/html/hospitals__hazardous_to_your_h.html) my recovery was smooth.  I walked with a walker for a  week.  I used two crutches for three weeks and one crutch for the next 5 weeks. 

Today one crutch sits in the back of my car and another sits in my closet.  My hope is to never need them again, but even if that is not the case, I have enjoyed my freedom for the past two and half months.  Every day is a gift and these days I truly realize it.  I swim every day and continue my own physical therapy.  I have a great deal of pain, but it is controlled and reduced through medication, exercise, and distraction therapy. I have hobbies, I go places, and I am relearning to speak Spanish. I plan to take sewing lessons. I belong to two book clubs.  Not aggravated by mold and mildew, I eat less and have lost an additional 15 pounds. 

Make no mistake, I am not cured, I still have the cognitive impairment of CFIDs, the neurological problems and sleep issues remain, my fever continues after 3 years, and the pain is not gone. But I have a life outside my illness.  I won’t desert the cause of advocacy; it means too much to me. My grip on this life is tenuous and it could go at any time.  I know very well that this abatement of symptoms is simply the first time in five years that I am not in a flare. It took moving and leaving my friends to do it.

Despite my happiness, I still remember the pain of separating from my friends.  I know that the next time I see Jan she will have moved to Arizona and we will be separated by a state instead of ten of them. I remember my friends Peter and Joe hugging me and than bursting into tears, as I did the same.  Peter’s little dog Greta with whom I spent the day, suddenly realized I was leaving, I could see that she felt betrayed in her deep brown eyes, as she angrily began shaking my coat to show her displeasure and hurt.  I knew I would miss her.

But, I know living in New York was killing me. I miss my friends and call them often (Thank heaven for unlimited long distance plans.)   We laugh, they wish they were here …The weather report has been “Extreme clear” for the last ten days.  There is not a cloud in the sky.  And for once, I am less afraid of my future.

 Anne-Marie Vidal
Awareness and Advocacy Coordinator