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• 

  Rochelle

  December 20, 2010 at 1:21 am

  What a wonderful effort of progress and hope for the many like me who still struggle to survive living with MCS. Some days are tolerable….others are devastating.

  In the cold of our harsh Canadian winter, I was the one who had an articlle written about her in the CJN in Nov./ Dec. of 2007. Readers will recall the headline.”A Jew is living in her car”

  I was an accomplished health professional, who was outgoing, confident, well-educated, career oriented, and very much independent on many levels . After a serious car accident necessitating multiple irradiation diagnostic procedures and subsequent dealings with the insurance company , a trauma in and of itself, I found myself more vulnerable to immune related illness. Then, as if that were not enough, I was exposed to mold , and prolonged low doses of pesticides in the more recent relocated lower rent apartment, Insidiously, I became more and more ill until I was literally fighting to survive.

  Fortunately, there was a genuinely caring and concerned man named Avrum. He was one of the first ‘ Shelter Angels ‘ working with the Humanitarian (International) organization called Ve’Ahavata (translates to ‘and you shall love and accept’ ). i was extended a lifeline and held on to that lifeline with all the life I had left in me (not too much at that point in time,,I might add!)
  .
  Through this life saving effort, I was brought indoors for that winter. It wasn’t exactly the ideal safe MCS accommodation. However, I was right to accept it with grace and gratitude for it lead me to a kind woman who was willing to do her best to accommodate me while encouraging and offering me the much needed support I lacked.

  People were so moved by the news and by my courage to survive I suppose, that they sent me blankets, a mask with a carbon filter (lost after a number of relocations -desperately need a new one ! ) and some money to help pay for the use of my cell phone. It was my only link to Avrum especially during the formidable sub-zero
  nights in my car situated in the wind-tunneled vicinity.

  At the same time, another empathetic and intuitive woman who had recovered from a similar challenge, volunteered her time and her private funds to help restore my health. This was quite successful, but unfortunately required me to have ongoing funds and to be living a lifestyle where I could shop for the right foods and have my own safe place to prepare the meals and mix the supplements. The knowledgeable and loving woman along with her husband and children became a family of angels since that time.

  After the winter,,I had neither the safe shelter nor the lifestyle necessary to recover because the basement where I was staying had been promised to new tenants. I thanked this understanding angel for all of her hospitality. I was made to feel that I had provided her with warm companionship during the year following the loss of her husband. I felt pride that I was able to give something back while ‘taking’ something from her. We promised to stay in touch.

  When the spring came, I needed to search once again for safe shelter. Again Avrum was there for me and put me in touch with two friends of his. The first friend was a sensitive business man who understood what it was like to struggle and to be in need of compassion and understanding. He agreed to let me use a vacant bachelor unit in his building free of charge and for as long as I needed until I found more permanent MCS housing.

  At first it felt wonderful to be indoors living independently again. I had my own space in a high-rise apartment, my own clean bright, bathroom which was no longer in a damp basement. Most important,I now had my own modern kitchenette so that I could prepare healthy foods for myself which was so important because I soon learned that I was suffering from Celiac Disease.

  The problem with this was one that had occurred time and time again. The people around me,above and below me, used extremely scented personal care products, cleaned with toxic cleansers, used room air fresheners. In order to remain indoors overnight I put out bowls filled with vinegar in each of the three small rooms to dissipate the agonizing effect of the chemicals and dense cigarette and ‘pot’ smoke .This would irritate the neighbors, I suppose even though there was no malice involved-merely a way to be able to sleep without becoming profoundly ill. I was so sleep deprived that I could have slept until 1:00PM daily. After overhearing me speak with a friend over the phone while sitting on the small outdoor balcony, one set of neighbors became aware that I could not handle toxic chemicals. They wanted me to leave and were determined to ‘fumigate’ me out. Soon, they were retaliating with even more dangerously toxic pesticides and products like floor varnish bought in hardware stores !

  Again,I was forced to go to the ER and almost did not survive the last incident. I was forced to sleep in my car and find places to remain outdoors during the day. But I counted my blessings because at least I still had a place to shower, change my clothes, and grab the quickest food I could find on the run.Sometimes one of the neighbors would be home and true to the ignorance of their nature, they would deliberately introduce these seriously damaging chemicals into or around my unit. It truly was traumatizing for me just to enter ,use my space and flee in fear !

  I wanted very much to inform the kind owner, but elected not to do so. I chose not to because it might reflect badly on Avrum. Perhaps if this were to culminate in a bad situation , it might spoil the chances for someone else who was homeless and desperate. Instead, once again I took to my car. Again, my health deteriorated. Therefore, I compromised on a dismal, damp, cold,cramped basement of an old house with a poorly constructed bed situated directly beneath an in-air vent. The tiny unit itself was situated right beside the laundry room. This time even though, I requested that the woman not use scented detergent, she thought (as do most) that I would never know the difference because it was all in my mind. With guests, family, and friends wearing scented products,coming and going constantly, life again became a roller coaster of unpredictability. After becoming so ill that I was vomiting violently with no end in sight and becoming progressively more critical,I had to go to the ER. There I was monitored closely with oxygen, on a cardiac monitor due to an irregular heartbeat, and with an intravenous infusion to reestablish my electrolyte balance., I informed Avrum that it was too dangerous for me to remain there any longer. He understood and pursued another option for me. He consulted the second friend.

  The second friend was away in Europe and would be returning in a couple of weeks. A person of integrity and compassion as well, his friend took me into his home and into his world. From day one he told me if anything bothers you, let me know and you have permission to get rid of it. We will find a way for you to make this place safe enough for you.This interval of time was a crucial one too because he restored a lost sense of dignity and respect. Any person coping with MCS knows how family, friends and the medical community can erode even the most secure sense of self. Though he was away for a good part of the time,when he was home, we spent some good quality time together He tried to educate me in the way of healthy nutrition. He confided in me sharing some of his life experiences and the wisdom he had gathered from them. Being approximately the same age, a friendship started to bloom based on mutual respect, trust and admiration. It did not hurt that he had a wonderful sense of humor! I started to do something I had not done in a very long time….I started to relax and to laugh. Life was better, but I needed to find other accommodations as I was imposing on both his personal and work life.

  After the spring and summer passed,, he presented me with an opportunity. Again ,it was by no means ideal, but it was one which seemed to hold some promise and so I graciously accepted it. His father had become very ill and he recognized that his mother needed help with his care. With my medical background , perhaps it could be a mutually beneficial situation. I was most apprehensive, because though not as horribly ill as before, I was still ill and in a weakened condition. But, I wanted to give back to the man who was self-less, generous of spirit willing to give so much of himself to a stranger….so I agreed.

  His mother proved to be yet another angel. Her husband was very ill. Conventional medicine was at a loss to help him. With my gerontological specialization and strong medical assessment skills, the devotion and tireless efforts of his wife , and the invaluable back-up on the part of two outstanding community care access members,this elderly man improved dramatically. At one point when he was able to resume eating well, he choked on a hard candy that a well intentioned family member had given him. He was not able to move any air in or out and almost asphyxiated. The family member screamed for me and I flew up the stairs from my basement living quarters – severe arthritis and all ! Being the right person in the right place at the right time, I performed the Heimlich Maneuver successfully and all was fine. Unbelievably, the man’s father was not the only one to choke so seriously. The friend’s dog and close companion also choked on something one day when the friend was visiting his father. Quick thinking on my part saved the frightened, large dog. and his panic stricken master. Needless to say, both victim and owner were most relieved and very appreciative.

  I remained with his parents for two years. The work was very demanding and exhausting. We were required to assist him 24/7. For a person with MCS and CFS, this was a physically and mentally grueling routine. However, because of the love, acceptance, and attempts to modify the environment as much as possible, it became a labor of love. Then, his mother became ill, and medical attention and concern shifted from him to her. I gave her my medical opinion and advised her accordingly. it was consistent with that of her doctors, her family members and her family/medical professionals. She had to have immediate surgery. Because I was there and knew how to care for him,she could have the surgery with peace of mind., The surgery went well, and she returned in a couple of days. The first couple of nights home were difficult for her. I tended to her as I would my own mother. One night as she was starting to feel better, she awoke when I checked on her . She touched my cheek gently and whispered , you are my angel and I love you. I was touched to have been described as such when I felt that quite the opposite, she was MY angel ! Those few days I needed the wings of an angel because it was very difficult indeed caring for both of them ! Somehow, I survived.

  With people coming and going so frequently (they are part of a large and popular family ), I still had to flee to my car and the outdoors. But this was more the exception than the rule. In time, it became clear that it was too difficult for my friend’s mother to remain in the house with three flights of stairs to climb regularly, cook and clean, sew, work and attend to other household affairs. This meant that I had to look for a place to call home again. There was only two bedrooms in their new home /condo. Besides, she needed and deserved some personal space and time to herself !

  With the receptive hearts and minds of all of these people through and including Avrum, I have earned their love and respect. They were not going to abandon me, and thus helped me to make the transition into the only safe place for me ….a small,old but relatively MCS safe bungalow (safe on the inside only ). Understandably, there is a limit to their generosity. which they have reached. I am the only renting occupant. In order to keep it this way, I went out to work part-time in private homes as a knowledgeable, experienced caregiver provided the family of the elderly patient agreed to make the home environment free of scented /toxic chemicals. I was hopeful that I would have enough to sustain the rent, food and other expenses. Unfortunately, I was not able to work enough to pull in the full expenses. Again, I was blessed and my friend agreed to loan me the money for the heating and hydro costs.

  This arrangement has continued for almost a year now. I am working with his father a few times a week to pay off the debt. I am still in the house which allows me to get some sleep most nights. As outlined by Linda Sepp, a house in the city is not a solution due to so many close noxious ‘assaults’. But for now, it is one step closer to what I need to thrive. I have most of the money, but still require financial support to make up the difference for the heating/gas and hydro costs (approximately $300.00/month).

  Why am I sharing all of this with you? I just wanted you and all those people like me who are clinging to hope, who are so courageous, and who are merely surviving,to know that it is possible to find an angel who will care about them when they least expect it. We should all keep in mind that when angels are good to us, we need to be able to give something back, Even if all we have to give is a part of our soul -our loving hearts, our loyalty, our eternal gratitude, or our devotion, we too can be angels. I think that you just saw how that can happen.

  Now I pray that when the time is right,(hopefully sooner than later as time is of the essence ) another angel will come into my life so that I can be well enough to make a difference for the better in that angel’s life ! God bless all of you who live with
  MCS, CFS Fibromyalgia, EI, GWS, or any variation thereof.

  May He watch over the fine person I know Linda Sepp to be. May He protect her wherever she is now. I think of her often and only wish that my house were anything close to what she needs. Be safe and be well Linda, wherever you are.

  “The Jew who is ( for the time being ) NOT in her car ” !
  (Rochelle)
• 

  Julie Genser

  December 29, 2010 at 10:34 pm

  Thank you Rochelle, so much, for sharing your inspiring story this holiday season. I remember reading the articles about you living in your car. I am so glad to hear how you have been helped by so many shelter angels. Someone has been looking out for you from above, for sure. Beautiful story of hope and survival against all odds. xx Julie
• 

  Rochelle

  January 16, 2011 at 2:19 pm

  Hi Julie,

  It was my pleasure to submit my story to you and to your readers.
  especially if it provided others with some comfort and much needed hope.

  I trust that I was able to instill a positive vision into the hearts and minds of both those people suffering with these conditions, and those who would desire to help us.

  Each and everyone of us must strive to watch each other’s backs so to speak. Understandably, we are not functioning at our optimum. However, there is always SOMETHING that we CAN do both individually and collectively to further THE CAUSE . What I have done is to submit the recommendation to Oprah that she interview Dr. Martin Pall. This brilliant man who himself had CFS has postulated a very sound ” NO-OH-NO ” theory to explain the physiological etiology of MCS, amongst others.

  These incredibly, insightful and detailed hypotheses propose a feasible physiological mechanism which is very likely the cause of a number of chronic illnesses. Of course, he has accomplished so much more, but I am sure that you and your readership are well aware of his impressive contributions. Studies continue to validate his theory which is why the medical community at the level of the PRACTICING, FRONT-LINE clinicians needs to be made aware of this crucial information.

  At the very least, we would no longer be criticized, ridiculed, and mislabeled as people in need of psychiatric intervention. Once this occurs we could be treated with due respect by health professionals. Family / ER doctors and nurses in particular, need to take our symptoms seriously because they would be doing what they should be doing – first , DO NO HARM. Then , they (MD’s) could fulfill the second part of their (Hippoctates’s) oath by easing the suffering experienced by their patients.

  Perhaps, if other readers agree with this suggestion, they could reinforce this request by going to Oprah’s website, to ‘WANT TO BE ON THE SHOW”, click on that , then find “WHO DO YOU WANT OPRAH TO INTERVIEW IN HER LAST SEASON”. Then submit their recommendation citing Dr. Martin Pall, who is a Molecular Biologist/Toxicologist at the Washington University.

  Then. we sit back, pray and hope that Oprah will recognize our plea as being morally responsible and one addressing social injustice. Wouldn’t that be a tremendous step forward in the understanding and treatment of us – G-d’s present-day, ‘ nomadic
  outcasts’ ?!

  If you are so inclined, Julie, would you e-mail me your e-address so that we might stay in touch?

  Be well … (as well as one CAN be with this condition),

  Rochelle

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