It’s been a good week! Last September, as I may have mentioned in an earlier post, an aggressive increase in one of my treatments caused me to lose about 90% of my already limited hand and forearm function. There were days when I could not move the joy stick that controls my wheelchair. Thanks to some adjustments in the treatment, continued detoxing, my nutritional and exercise programs, emphasis on affirmative thinking, the work of my healer (Jose), and good old perseverance, my arms and hands are completely back to where they were, and continuing to gain strength. I am even noticing additional strength in my shoulders and neck. It all became more noticeable this past week as I began to take easier and more extended strolls around the neighborhood.
Gains like this, of course, are what doctors will tell you are impossible for a person with ALS. And, if I am successful in continuing to reclaim mobility, doctors will most likely proclaim that my recovering from ALS is a miracle, and will ignore what I have done to achieve it. I am convinced that this will be the likely response from the medical community, because I have read and heard so many stories like it. This is one of my motivations for continuing with this blog – to get the word out that there are effective strategies outside of the traditional medical model that a person with ALS can use to fight it.
Another reason it has been a good week is that a reporter from a local newspaper put out an article on my story, providing further exposure for my successful battle against this disease. You can find the article, "Local man with Lou Gehrig's disease beating odds," at the following link www.mycentraljersey.com/apps/pbcs.dll/article?AID=20106220302. Please let me know what you think of it.
It can be a lonely battle at times, searching for effective, non-traditional healing practices that work in the face of the sometimes patronizing and skeptical attitudes, and lack of interest one often experiences from medical professionals. Each time I experience a gain like my recent increase in strength, I count my blessings that my perseverance has paid off, and hope that my example somehow benefits others with ALS or other difficult challenges.
Please let me hear from you.
Thursday, June 24, 2010
Thursday, June 17, 2010
Turning Nightmares into Miracles by Reframing
When you lose 90% of your ability to move, it can have a dramatic impact on your self-perceptions and your expectations about what you can do to have an impact on your world, and enjoy your time in it. As a management consultant (http://www.guttmandev.com/), I was accustomed to using gestures and my voice to teach people how to communicate and influence each other more effectively. Those capabilities are now gone. My arms can barely move and my voice is too weak to produce words with the volume, inflection and tone of which I was once capable. As a parent, I can no longer comfort my children with an embrace or speak to them clearly and quickly enough to offer efficient guidance. Favored recreational activities like tennis, hiking, and skiing are, at this point, only pleasant memories. It would have been easy, given these developments, to view myself as less of a human being, a mere remnant of the person I once was, now dependent on others’ arms and legs for the satisfaction of virtually every physical need. I am certain that accepting this view would surely have put me in the grave by now, and robbed me of further contributions to the world.
There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.
Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.
Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.
ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.
Please don’t forget to comment on this post!
There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.
Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.
Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.
ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.
Please don’t forget to comment on this post!
Friday, June 11, 2010
A Comment, A Comment, My Kingdom for a Comment
When I began this blog last February, I invited my readers to “help me make it a place where people can find hope, inspiration and ideas for dealing with their difficulties…to create a space in which people can find ways to turn their nightmares into miracles.” Initially, I received some very nice comments from friends and relatives encouraging me in my endeavor. After the first few posts however, there have been few comments. My passion for the purpose of this blog is as strong as ever, but it is difficult to know where to take it without feedback. Please help me to determine what is working and what is not by commenting on the posts. Let me know what thoughts you have found helpful, and feel free to share insights that you think might be helpful to others. My intention for this blog was to create an exchange. In order for it to be successful, others have to participate. So please, comment.
Saturday, May 22, 2010
Ongoing Discovery in Recovering from ALS
When attempting to recover from a purportedly incurable and terminal illness, you can often find yourself navigating a very unpredictable path. It is a constant process of discovery. Often times, things don’t make sense, and sometimes you discover that you have taken a wrong turn, and have to double back and try again.
In my work with Dr. Akin and the use of hair analysis, I am able to track the mineral levels in my body. With a nutrient rich diet, comprised mostly of raw organic fruit and vegetables, I would expect to be seeing fairly strong results in my reports. Yet for almost 2 years now, my numbers have been low for minerals that are abundant in the foods that I eat. My copper levels, for example, have been consistently low despite my consumption of an ample number of carrots on a regular basis. Inconsistencies such as this have been puzzling. Rather than consuming supplements to duplicate the intake of nutrients that my diet already supplies, Dr. Akin agreed that it made sense to investigate why my body is not absorbing what I am taking in.
To accomplish this, we ran a series of GI panels to explore what was going on with my digestion. Among the things we discovered was the existence of several pathogens that should have been eliminated by a detoxing agent (MMS) I had been using for over a year. Upon re-examination, I discovered a wrong turn in my path. I had been using the MMS at too low of a dosage. The bad news is that I wasted some time. The good news is that the possibility now exists for more impact from the MMS.
While Dr. Akin and I have been discovering the issues with my digestive system, my healer, Jose, discovered a huge quantity of dimethyl mercury laced throughout my body. He is very hopeful that we may see significant changes in my condition once the dimethyl mercury is gone. I am very hopeful that the MMS (in proper dosage) will help accelerate its departure.
It constantly amazes me how possibilities for healing keep showing up in my life, as long as I keep my intention focused on recovery. There always seems to be another step to take, another path to explore. Recovering from ALS, as always, continues to be an exciting adventure.
In my work with Dr. Akin and the use of hair analysis, I am able to track the mineral levels in my body. With a nutrient rich diet, comprised mostly of raw organic fruit and vegetables, I would expect to be seeing fairly strong results in my reports. Yet for almost 2 years now, my numbers have been low for minerals that are abundant in the foods that I eat. My copper levels, for example, have been consistently low despite my consumption of an ample number of carrots on a regular basis. Inconsistencies such as this have been puzzling. Rather than consuming supplements to duplicate the intake of nutrients that my diet already supplies, Dr. Akin agreed that it made sense to investigate why my body is not absorbing what I am taking in.
To accomplish this, we ran a series of GI panels to explore what was going on with my digestion. Among the things we discovered was the existence of several pathogens that should have been eliminated by a detoxing agent (MMS) I had been using for over a year. Upon re-examination, I discovered a wrong turn in my path. I had been using the MMS at too low of a dosage. The bad news is that I wasted some time. The good news is that the possibility now exists for more impact from the MMS.
While Dr. Akin and I have been discovering the issues with my digestive system, my healer, Jose, discovered a huge quantity of dimethyl mercury laced throughout my body. He is very hopeful that we may see significant changes in my condition once the dimethyl mercury is gone. I am very hopeful that the MMS (in proper dosage) will help accelerate its departure.
It constantly amazes me how possibilities for healing keep showing up in my life, as long as I keep my intention focused on recovery. There always seems to be another step to take, another path to explore. Recovering from ALS, as always, continues to be an exciting adventure.
Saturday, May 8, 2010
Black Knights, SerenAides, and Lou Gehrig’s Disease
Life and the media are filled with examples of people who have beaten the odds and overcome seemingly insurmountable obstacles through the sheer force of will. One of the more dramatic images that come to my mind is actually a fictional and quite humorous one with which I often identify. I am referring to a scene from the 1975 comedy “Monty Python and the Holy Grail”, which many of you are probably too young to remember. In this scene, the Black Knight is defeated by King Arthur while trying to prevent Arthur from crossing the bridge that the knight has sworn to guard. Each time Arthur relieves the knight of one of his appendages, the knight dismisses Arthur’s success with some belittling comment. At one point during the fight, with blood gushing in comic exaggeration from his armless shoulder, like water from a fire hydrant, the knight shouts, “Ah, it’s only a flesh wound!” Finally, reduced to an armless and legless torso, the defiant knight screams after the departing Arthur, “Come back here, you lily-livered coward! I’ll bite your knee caps off!” Despite the goriness of the scene, it is hard not to chuckle at the absurdity. Yet I always find myself admiring the knight’s tenacity in handling adversity. Each time I have lost a little bit more of my mobility, I have found myself reflecting on the knight and finding inspiration in his refusal to quit.
Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.
But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.
As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.
Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.
But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.
As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.
Tuesday, April 27, 2010
A SerenAide for Lou Gehrig’s Disease
In 2005, I was beginning my fifth year of living with ALS, and despite several trips to Germany for alternative medical treatment, nothing seemed to be working to deter the slow but unrelenting progress of the disease. Among the most difficult things I had to deal with that year was to watch the toll that my physical deterioration was taking on my wife. Diane is the kind of person who is always available to listen to and console others about their problems, but rarely talks about her own. The depth of her consideration for others is one of many rare qualities that have caused her choir students to develop a deep respect, love and attachment year after year after year.
By the spring of 2005, the students had become painfully aware that something was wrong, but they weren’t quite sure how to reach out. One student took the initiative to express in writing what many of the choir members were feeling. In Diane’s own words, when describing it to others, “I received the most wonderful letter from a student who expressed concern, and said even though it was written by this one person, ‘ I am just another face in the choir, just another one of your many children.’ The letter went on to say, ‘You have been the object of strength to us this far, now let us return the favor. Let us help you…. Let us heal you.’” The letter continued with a quote from a song that Diane had been teaching that year, entitled, ”On the Morrow”. It said, “After all, ‘on the morrow, when the sun is at rise… no more sorrow in thy eyes- Trust in the morrow, and it shall come’”.
A few short weeks later, the students had collaborated with support from some of the choir parents, and school administration, to produce a benefit concert on our behalf, which they entitled SerenAide. They enrolled students, teachers and others from the community to perform an entertaining and heartwarming evening of music with only 3 weeks’ preparation. Several times during the evening, my family and I were deeply moved as student performers shot adoring glances toward their beloved teacher, seemingly in pursuit of some sign of approval. When a small ensemble of choir students gathered just a few feet in front of us to perform the final number, however, we were completely overwhelmed. Their selection and heartfelt rendition of “On the Morrow” simply brought us to our knees.
That evening in April of 2005 was amazing and magical. What is even more amazing is that the students have turned SerenAide into a tradition. On May 27th, we will enjoy our sixth annual SerenAide concert to raise money for the fight against Lou Gehrig’s disease. If you happen to be in the vicinity of J. P. Stevens High School in Edison, N.J. at 7 p.m. on that evening, we would love to have you join us. It is an evening you will not soon forget!
By the spring of 2005, the students had become painfully aware that something was wrong, but they weren’t quite sure how to reach out. One student took the initiative to express in writing what many of the choir members were feeling. In Diane’s own words, when describing it to others, “I received the most wonderful letter from a student who expressed concern, and said even though it was written by this one person, ‘ I am just another face in the choir, just another one of your many children.’ The letter went on to say, ‘You have been the object of strength to us this far, now let us return the favor. Let us help you…. Let us heal you.’” The letter continued with a quote from a song that Diane had been teaching that year, entitled, ”On the Morrow”. It said, “After all, ‘on the morrow, when the sun is at rise… no more sorrow in thy eyes- Trust in the morrow, and it shall come’”.
A few short weeks later, the students had collaborated with support from some of the choir parents, and school administration, to produce a benefit concert on our behalf, which they entitled SerenAide. They enrolled students, teachers and others from the community to perform an entertaining and heartwarming evening of music with only 3 weeks’ preparation. Several times during the evening, my family and I were deeply moved as student performers shot adoring glances toward their beloved teacher, seemingly in pursuit of some sign of approval. When a small ensemble of choir students gathered just a few feet in front of us to perform the final number, however, we were completely overwhelmed. Their selection and heartfelt rendition of “On the Morrow” simply brought us to our knees.
That evening in April of 2005 was amazing and magical. What is even more amazing is that the students have turned SerenAide into a tradition. On May 27th, we will enjoy our sixth annual SerenAide concert to raise money for the fight against Lou Gehrig’s disease. If you happen to be in the vicinity of J. P. Stevens High School in Edison, N.J. at 7 p.m. on that evening, we would love to have you join us. It is an evening you will not soon forget!
Friday, April 9, 2010
Blessings in Disguise – An excerpt from: From Nightmares to Miracles
A constant source of amazement to me during my journey with ALS has been the astounding number of blessings that have come my way as a result of my illness – blessings of friendship, physical assistance, monetary support, insight and more. What I have also learned through my experiences with this illness is that blessings don’t always look or feel like blessings. Sometimes it’s the insight derived from a bad situation or the change that emerges from it that turns out to be a valuable gift. A difficult interpersonal situation or the loss of a critical resource can stretch you to the limits of what you know about handling adversity, but can also result in some important lessons. Having had several such opportunities in recent years, I have become more attuned to looking for and appreciating the blessings in disguise that adorn my life.
One example of this phenomenon occurred with my first live-in health aide. Ethan (whose name I have changed to protect the guilty) actually possessed a number of very positive attributes. He was extremely well organized, kept the house clean and in good order, transferred and attended to me well on a physical level, and was respectful in his behavior toward my wife and children. For the first several weeks, he was working out quite well. Gradually, however, it became apparent that Ethan had some personal issues that were becoming increasingly uncomfortable for me and beginning to impinge on the quality of his care. The man had very strong opinions, a tendency to move quickly and unnecessarily from discussion to argument if offered an alternative perspective on an issue, and a degree of self-absorption that demonstrated little regard for the emotional impact of his behaviors on others.
My increasing discomfort with these behavior patterns brought into sharp focus my biggest problem in dealing with this first stranger in our midst. I was feeling extremely vulnerable. Here I was at the mercy of a man who was becoming increasingly emotionally abusive and upon whom I was totally dependent for all my basic activities of daily living. I felt helpless and trapped, knowing that it might not be possible to find an immediate replacement, and uncomfortable with the idea of placing an additional burden on Diane if she had to take off from work to care for me until one was found. Unable to call the home health aide agency without his assistance, I was also fearful of further inciting Ethan’s dysfunctional behavior by revealing my intent to replace him.
Ethan was with us for a period of just under three months. It seemed much longer, and given the stress produced by the situation, it lasted much longer than it should have. Our relationship ended on a day in late June that, by no coincidence, happened to be Diane’s last day of work for the school year. Ethan had launched into a prolonged tirade over a question I had asked him while he was showering me that morning.
The tirade lasted well over an hour despite my efforts to clarify my intention and despite efforts to remind him that he was creating an intolerable level of stress for a patient with Lou Gehrig’s Disease. His rant evolved into anger over how unappreciative I was and threats over how difficult it was going to be to replace the quality of his care.
Bolstered by the knowledge that Diane would be home for the summer within hours, and having reached my breaking point, I screamed at him, with expletives included, exactly what I thought of the quality of his care. Ironically, it was my lashing back that took the wind out of his sails and calmed him down. He was so “hurt” by my comments that he decided he could no longer work with me and would have to leave immediately. I was both shocked and relieved by this sudden turn of events. Ethan left that afternoon, and a replacement was provided the very next day.
Given the intensity of this episode, it could probably be argued that Ethan’s tirade was anything but a blessing. So let me explain why I see it as such. The gifts that Ethan left me were a heightened awareness of my fears about being vulnerable, and an opportunity to reality test and mitigate those fears. I learned that, while I was physically limited, I was not helpless to take care of myself. There were subsequent aides who also did not work out well and needed to be replaced. Yet I never again feared the changing of the guard, or being left without care in the process. I discovered that there were friends, family members and multiple agencies that could be counted on to step in and fill the breach, if necessary, when transitioning to a new aide. This experience made me more aware of the support and resources at my disposal, and how only fear could prevent me from exercising my power to deploy them.
Some might argue that my experience with Ethan was more of a disaster than a blessing. But consider the impact of that choice. First of all, to consider Ethan the perpetrator of a disaster would elicit in me strong feelings of blame toward him, generating strong negative energy that would not serve me well. It would distract me from my own culpability in allowing the situation to continue longer than it should have. I would deprive myself of some very important learning: that I am not at anyone’s mercy; that I do not need to be driven by fear; that I have many resources available to me and the power to use them. So, rather than demonizing Ethan, I choose to remember him with gratitude for providing me with a powerful, if painful, learning opportunity that has helped me to evolve to a much calmer, more deliberate and more effective manner of dealing with life’s little crises.
One example of this phenomenon occurred with my first live-in health aide. Ethan (whose name I have changed to protect the guilty) actually possessed a number of very positive attributes. He was extremely well organized, kept the house clean and in good order, transferred and attended to me well on a physical level, and was respectful in his behavior toward my wife and children. For the first several weeks, he was working out quite well. Gradually, however, it became apparent that Ethan had some personal issues that were becoming increasingly uncomfortable for me and beginning to impinge on the quality of his care. The man had very strong opinions, a tendency to move quickly and unnecessarily from discussion to argument if offered an alternative perspective on an issue, and a degree of self-absorption that demonstrated little regard for the emotional impact of his behaviors on others.
My increasing discomfort with these behavior patterns brought into sharp focus my biggest problem in dealing with this first stranger in our midst. I was feeling extremely vulnerable. Here I was at the mercy of a man who was becoming increasingly emotionally abusive and upon whom I was totally dependent for all my basic activities of daily living. I felt helpless and trapped, knowing that it might not be possible to find an immediate replacement, and uncomfortable with the idea of placing an additional burden on Diane if she had to take off from work to care for me until one was found. Unable to call the home health aide agency without his assistance, I was also fearful of further inciting Ethan’s dysfunctional behavior by revealing my intent to replace him.
Ethan was with us for a period of just under three months. It seemed much longer, and given the stress produced by the situation, it lasted much longer than it should have. Our relationship ended on a day in late June that, by no coincidence, happened to be Diane’s last day of work for the school year. Ethan had launched into a prolonged tirade over a question I had asked him while he was showering me that morning.
The tirade lasted well over an hour despite my efforts to clarify my intention and despite efforts to remind him that he was creating an intolerable level of stress for a patient with Lou Gehrig’s Disease. His rant evolved into anger over how unappreciative I was and threats over how difficult it was going to be to replace the quality of his care.
Bolstered by the knowledge that Diane would be home for the summer within hours, and having reached my breaking point, I screamed at him, with expletives included, exactly what I thought of the quality of his care. Ironically, it was my lashing back that took the wind out of his sails and calmed him down. He was so “hurt” by my comments that he decided he could no longer work with me and would have to leave immediately. I was both shocked and relieved by this sudden turn of events. Ethan left that afternoon, and a replacement was provided the very next day.
Given the intensity of this episode, it could probably be argued that Ethan’s tirade was anything but a blessing. So let me explain why I see it as such. The gifts that Ethan left me were a heightened awareness of my fears about being vulnerable, and an opportunity to reality test and mitigate those fears. I learned that, while I was physically limited, I was not helpless to take care of myself. There were subsequent aides who also did not work out well and needed to be replaced. Yet I never again feared the changing of the guard, or being left without care in the process. I discovered that there were friends, family members and multiple agencies that could be counted on to step in and fill the breach, if necessary, when transitioning to a new aide. This experience made me more aware of the support and resources at my disposal, and how only fear could prevent me from exercising my power to deploy them.
Some might argue that my experience with Ethan was more of a disaster than a blessing. But consider the impact of that choice. First of all, to consider Ethan the perpetrator of a disaster would elicit in me strong feelings of blame toward him, generating strong negative energy that would not serve me well. It would distract me from my own culpability in allowing the situation to continue longer than it should have. I would deprive myself of some very important learning: that I am not at anyone’s mercy; that I do not need to be driven by fear; that I have many resources available to me and the power to use them. So, rather than demonizing Ethan, I choose to remember him with gratitude for providing me with a powerful, if painful, learning opportunity that has helped me to evolve to a much calmer, more deliberate and more effective manner of dealing with life’s little crises.
Subscribe to:
Posts (Atom)