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Welcome To The Healing Station Newsletter
Editorial
By: Mermie
Today, people are taking greater responsibility for their own health care. Wellness Train stands for the concept of healing of mind, body and spirit For support, caring, sharing of information and for listening to one another It also stands for LOVE and DOING ONTO OTHERS AS WE WOULD HAVE THEM DO UNTO US. I have learned a lot along the way, by running and managing the train. It has been a great joy to me and at times, peaked in moments of extreme frustration, but all in all I have taken it in my heart and soul as a mission, something that I am dedicated to, and which is dear to my whole concept of living and learning how to maintain A reasonable quality of life while suffering from chronic pain and disease. During my years of working on the Internet I have heard many stores from different places about disagreements, confusion and hurt feelings within support groups. This is not our goal and objective here on the train. While groups often begin with a sincere desire to cooperate in sharing support and resources, many times they find themselves sinking into unseemingly unresolvable differences of opinion over the details of group activities and/or events. Disagreements among members can begin with attempts to define what it is that "the group" should do. For example, what kind of support meetings should be offered? Who will lead them? What philosophy of home-based education should be emphasized? Should discussions be moderated, or should they be entirely informal? All can provide some fertile ground for conflicts. We are often asked how we can manage to operate the train with very little debate or disagreement over how we operate. The answer is that every member is free to make his or her own decisions about what to offer, either as an individual or in cooperation with others. While some of our more active members may be perceived as leaders, especially by newcomers, the truth is that no leader or group of leaders decides what is to be on the calendar. This is not to say that everyone agrees about everything. No matter what the activity or event, there will always be somebody who feels that it should be done differently. Sometimes even longtime members get confused about the process and protest that some aspect of a given activity is not sensitive to the needs of this kind of family or that kind of philosophy; when this happens they must remember that they are free to offer an alternative. At the beginning I was feeling my way along and having to make many decisions. For some members felt it was too disorganized, while still others believed that any adult direction at all was too coercive. Can you imagine trying to figure all this out with such a diversified group of people? I listened to everybody and kept to my vision. Some people drifted away because it wasn't their cup of tea, while others became regulars but these differences never became a source of group conflict as they might well have been. For those who wish to try our approach the key is to create a point of contact for families in which individuals and groups of individuals are free to figure out ways to meet their own needs. This may be a simple transition for some organizations. In other cases it may be the redefining of the mission and goals of the group. I see it as a big painting where we all are focusing on creating a masterpiece of human relationships by exploring our own ways of working and playing together. We are a community of people at various levels of commitment and caring and willingness to give. Some people give a great deal, and, as time passes, they tend to be seen as leaders. But as long as we claim ownership and responsibility only for what we as individuals offer to others and not for any kind of group authority, then we avoid misunderstandings and debilitating conflicts. It is surprisingly easy to forget this principle. I've done that occasionally when I have neglected to leave my name attached to an activity so that in the newsletter it appears to be a group offering rather than an offering by me. I realize this has happened when I find myself feeling responsible for pleasing everybody instead of allowing myself to be guided by what I feel that I can give. These are some of the practices and concepts that make the train work for us. This approach requires a lot of respect for the authority of individuals to make their own decisions. Most of us have been well-schooled to look for authority from above and it can be hard work to begin looking within. It is fun to see the enthusiasm when newcomers first realize that they have the freedom and the means to create opportunities for themselves and for others anytime they like. With each passing month we learn more from each other.
It is sometimes difficult to get volunteers among those who participate to help. This is a group and each member shares responsibility for its development. Help members to become more than "joiners" by involving them in the group. Finding out what their talents are and what they might be interested in helping with. Make them feel appreciated for whatever little they can help with. From the very beginning thing of this as shared leadership. For we need to try to prevent burnout of any members and promote the longevity of our train. People diagnosed with chronic illness an pain face many challenges that may leave them feeling overwhelmed, afraid, and alone. It can be difficult to cope with these challenges or to talk to even the most supportive family members and friends. Often, groups like the train can help people affected by illness feel less alone and can improve their ability to deal with the uncertainties and challenges that sickness and pain brings. Wellness Train gives people who are affected by similar diseases an opportunity to meet and discuss ways to cope with the illness.
People who have been diagnosed with illnesses and suffer from debilitating pain sometimes find they need assistance coping with the emotional as well as the practical aspects of their disease. In fact, attention to the emotional burden of any illness is sometimes part of a patient’s treatment plan. Most support groups are designed to provide a confidential atmosphere where sufferers can discuss the challenges that accompany their illness with others who may have experienced the same challenges. For example, people gather to discuss the emotional needs created by pain and isolation, to exchange information about their disease—including practical problems such as managing side effects of medications, or working to maintain a quality of life—and to share their feelings. Support groups have helped thousands of people cope with these and similar situations.
Family and friends are affected when illness touches someone they love, and they may need help in dealing with stresses such as family disruptions, financial worries, and changing roles within relationships. To help meet these needs, some support groups are designed just for family members of people diagnosed with illness; other groups encourage families and friends to participate along with their loved ones. We do not discourage family participation but by the same token we want to ensure that we offer a haven for a sick person to have the confidence and trust to be able to speak their minds; not necessarily against their loved ones, but their hurt and disbelief at the lack of understanding and support they often lack from people who simply do not understand sickness and pain. Therefore, Wellness Train concentrates on being a support group for people directly affected by sickness and pain. I met, through this list, the original members who helped me to form our new group. Some of them are still Directors and others are honorary Directors. All are wonderful, dedicated, wise and caring people who have contributed so much of themselves to the members on this train and continue to do so. Meeting the members on this train has been a gift and blessing in my life, for without my illness, I never would have met any of them most probably. And to me, each and every one resides in a special place in my heart. Our Mission is To provide support, caring, sharing current information, discussion, coping skills and techniques and to bring awareness of the pain and frustration of chronic pain and illness and related diseases to the general public and medical profession, It is important for our members to realize that “The greatest force in the human body is the natural drive of the body to heal itself.” Norman Cousins after he had recovered from a “terminal illness.” Focusing and practicing acceptation of illness does not mean that we have to resign ourselves to it and to admit defeat. For defeat can lead to depression, and that frame of mind will not allow the sufferer to focus and create a positive internal force which allows you to heal. Wellness Train believes that accepting illness really prepares a cradle for yourself – a healing, gentle loving place where you can free your energy from negative thoughts and deeds and allow your mind to soar on other positive and inspirational thoughts and on other parts of your life, even while you are sick and in pain. Our human nervous systems are complex and when we strive to heal we can grow new tissue, new nerves and new cells. It is mandatory that we follow this path mindfully, by creating new ideas, new attitudes, and new ways of looking at the world, our loves, our families and our world, and ourselves while we are healing physically. If we start to grow psychologically in response to our illness and pain, we may be able to circumvent or ameliorate our physical suffering to a certain extent. We try to encourage making physical wholeness and total wellness
a goal: Lots of people heal into peace of mind and self love without ever becoming well again, but make their goal one of inner peace. They promote their own natural ability to forgive themselves and others and as a tool to gaining self respect. And indirectly, this may help to promote healing a lot faster than self-loathing, self-criticism, resentment, depression, and lack of joy in life. I think we can all learn to use our pain and illness as a situation to learn about hope, faith, acceptance, forgiveness, unconditional love and openness to the journey of life. And if we can just adhere to the “moment” then we may have the ability and magic to force our disease if not into total remission, at least into temporary hiding in the shadows. In short, there is always HOPE. And the honor of hope is that in sharing hope, so can we help to uplift the lonely, depressed and hurting. In this way, our minds and bodies will respond to the love and respect sent to us by other members on our train and in our world. For negativity breeds chemicals in our bodies, which can destroy us, while positive thoughts can produce another calming and healing set. Our focus on the new list was to be more positive, to listen, to support, and to vent, but to give information, help, support with loving and gentle advice on how to cope and keep going. Another focus was to strive to help our members become more proactive in their health care, to learn to deal with the medical profession, and to understand their own bodies. The second component being to understand that it was important to learn how to help yourself. We also emphasize that information is power! We also make an effort to help our members understand that we were striving to make the medical profession more aware of Fibromyalgia, Chronic Fatigue Syndrome (CFS), and other ensuing problems. And, as we move along, it has become very apparent that many of us, who were originally diagnosed with Fibromyalgia, really suffer from secondary Fibromyalgia due to primary conditions, yet undiagnosed or disclosed by our doctors. We feel that this information is vitally important to the extend that dealing with secondary Fibromyalgia, and other diseases that appear to go hand and hand with many cases, is a new approach, and in essence, we are really fighting many diseases at the same time. And, that so many of our warriors have so many complex conditions, coupled by severe pain syndromes, mostly under-treated or not discovered or diagnosed by their doctors. This became our strong resolve. To understand that we could participate in our own health care, through reading, printing articles from reliable sources and encouraging our members to demand their rights concerning pain management to improve our quality of life. It is still a never-ending battle. For pain, can become a disease onto itself, if left unmanaged or treated. This is something that all medical professionals should be made aware of and indeed, they are now making moves in this direction as there are so many people living in chronic pain throughout the world. ur membership has continued to grow. We have developed our web site, which is now under reconstruction because we feel that we should be addressing all diseases which often couple with Fibromyalgia/CFS but this is going to take time as the web site will be extensive. We have also developed a newsletter called THE HEALING STATION, which in keeping with the Wellness Train theme, provide our members an opportunity to submit articles, and also enlighten, encourages, tickles their sense of humor and soothes their souls through our various articles. We have been very successful at this venture and many readers around the world read our newsletter. Our other Stations on the main web site developed due to our philosophy of healing of body, mind and spirit. Each station on the web site offers information, coping mechanisms and advice on all three categories. Because we had originated the list e-mail serve with the name of WELLNESS TRAIN, we naturally gravitated to using analogies pertinent to the theme. It kind of developed on its own after that i.e.: The Healing Station Newsletter.
I developed the web site, by researching appropriate graphics and sayings such as mentioned above. My web master was and my new one is invaluable to me, as they are the ones who do the mechanics of the site and the uploads. I could not possible do all of this myself. Nor would I presume to be able to try. I worked hard on each individual station and in some way, it became a mission to try to get across to people how they have to be proactive, learn to cope and help themselves and that they must strive not to let it change their inner souls, their inherent faith and goodness. It is easy to become a witch or a martyr when faced with chronic pain and illness and it is easier still to lash out at the ones who love and support us the most at home. Everybody who suffers with pain and illness knows the sinking of the heart, the pain of losing the strength of your body and the inability to participate in the activities one once loved so much. The challenge is, I believe, is to instill in people the fact that they are STILL WHO THEY ARE. Even though they feel that they have lost a part of themselves, inside is the same. And, that it is important to maintain a positive attitude, fight to get through the rough spots, learn when to slow down and rest, to listen to their inner sense that tells them to rest, and to understand that no pill can do it all for them. Also, in this learning, comes the love of humanity, compassion for others in similar situations and the mission to help others learn to pass this along to other free falling warriors who are isolated and alone without support or empathy. I believe the WT helps to provide this for many of our members and if we do not touch every heart, it is not for want of trying. Every director, past and present on this train, is so dedicated and so filled with unconditional love for others that it humbles my spirit to know that I am the founder of this group of wonderful souls. So how did I do it? I developed the stations by listening to my own body, and most of all, listening to others on the train. I recognized the need, and filled it. Rather like finding a market niche and filling it in business. And Wellness Train is in the business of helping others to learn to cope with a most difficult trial in life--dealing with chronic pain and illness, day after day after day with little or not respite. Everybody contributed to this venture, through his or her posts, thoughts, prayers and messages. Train help people with that isolation and the various losses and crises they face? Wt can help by just listening, being there and having an open and empathetic heart. We encourage, sometimes prod gently, and offer solutions. And always note, that we love the person going through the crisis, that we are here for them, and that all members are involved in whatever the crisis may be, in terms of support, love and prayers. As far as isolation goes, it is important that isolation has to be accepted as part of the problem. Once accepted, and recognized that we are indeed isolated because of our “misunderstood” chronic pain, then in reaching out to others in similar situations we can strengthen our own resolve and help them at the same time. I view it as a chain. We are all links in the chain of humanity. Just helping yourself will not keep that chain strong and vital, nor will it enforce strength of spirit. So I try to encourage everybody to help others during their greatest trials, to reach out because if we do, we can always find somebody worse off than ourselves. Self-focus defeats the fact of remaining positive and willing to slog on. Self-focus in a way isolates us from the world. I am not saying that everybody is self focused, but illness has a way of making one focus on the pain and illness, the depression and empty feeling of isolation that invariably accompanies all of this. In reaching out to others, we forget ourselves for a moment, and in helping another get through it, we enforce the chain that binds this community together. I am convinced that the bird with the broken wing can soar the highest! And in saying that, we can do this by using the resources we have inside, to stay resolved, strong, filled with faith and positive thinking and to lend helping hands to others in need. In that way, we can soar with grace and meaning. For when pain overwhelms us, and we allow it to be the driving force, we often can find ourselves isolated, alone, without help, support or refuge. Our human reaction seems to be to crawl into a dark space and nurse our wounds. Feeling isolated while suffering from pain is like being tossed over a bank into a raging river by somebody you love. When your body is under attack, and even your physician helplessly wrings his or her hands in impotent despair, scribbling out a bunch of prescriptions in the hope that you may be one of the lucky ones who respond, then you begin to realize that essentially, you are on your own. Nobody else can feel your pain. Nobody else can sense the loss of self. Nobody can understand the frustration, the fear, and the overwhelming grief we all feel when we are first faced with dealing with illness and pain. At first you try to swim against the unrelenting current, convinced that you can overcome. However, when your inner strength fails along with your limbs, your poor tormented body yields to the undertow which slides you into an abyss of black despair and you do not know what to do, or where to turn. When pain overwhelms us, and we find ourselves without help, support or refuge, our human reaction seems to be to crawl into a dark space and nurse our wounds. Feeling isolated while suffering from illness and pain is like being tossed over a bank into a raging river by somebody you love. When your body is under attack, and even your physician is powerless to help, then you begin to realize that you are essentially on your own. This is where WELLNESS TRAIN CAN MAKE A DIFFERENCE and where EVERY RESPONSIBLE SUPPORT GROUP ON LINE CAN HELP. I think that it behooves all support groups to undertake these kinds of challenges and to understand that by promoting and helping to maintain positive attitudes as much as is possible, will enable us to touch and reach the highest and most brilliant of all stars. The star of hope and inner understanding which shines in the firmament of the Universe, and which, there be no doubt, is KNOWLEDGE of one’s SELF. We try to absorb that what we focus on, we become. We strive to encourage our members to focus on the highest, brightest and noblest of all things – for all things are enlightenment. For nothing in this world is more important than a healthy state of mind. With that, all things are possible as a positive state of mind compliments any life situation. We are after all, akin to the canaries in the coal mines, yet we still dare to spread our wings and fly against adversity, pain and chronic illness. We are warriors in the fact that we constantly work to educate ourselves, to encourage and love one another, fight for our medical rights, and to help others get through the long days and longer nights. On Wellness Train we can best be described as gentle souls, in search of absence from bodily pain which threatens our very lives, year after year. We are kindred souls, in that we cling together and ride the train forward, filled with the Faith and Will to increase our quality of life. In closing I repeat our Wellness Train Prayer, composed by Robyn, our poet laureate, who lovingly penned this for us.
I'm aboard your train. We're all on board your train. It's guided by angels. It's driven by love. It's fueled with hope. Its journey mapped out by faith. Please bless its journey. Heal its passengers. And, Creator of all, good, harmony, and peace Please bless us all with these. We ask these in your name! Amen …some excepts taken from Article written by Anne Marie Vidal Web Site: OUR FM/CFS WORLD INC. ourfm-cfidsworld.org/html/mermie_brunnet.html
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