We Are Blessed

If Dad had never been diagnosed with ALS, he still would have been a good father. He would have taught me and Julie the difference between right and wrong. He would have supported our passions, taught us how to earn and show respect, and he would have loved us to the end of time. But ALS did inhabit our lives...

Over the past 11 years, many people have told me that I was blessed. Part of me always understood this notion... but most of me wanted to flick the person in the nose...

HARD.

The reality is that this journey, as tragic and exhausting as it may have been, has revealed to us a dimension of love, and an understanding of life, we never knew existed. Through it, we discovered the impact and value of a loyal and supportive community. We were able to bear witness to the might of will and intent. We can attest to the true power of choice. And we learned how to love with every part of our being.

So ALS entered our lives and took someone we loved.... but not without a struggle and transformation of epic proportions. And it was by virtue of that struggle that everyone reading this can say, "I am a better person because of Joe Wions." And it is by virtue of that struggle that I can say, "I did not simply have a good father....I had an extraordinary father whose will to live, and whose adaptability in the face of adversity inspired me, and everyone around him."

And for that loyal and supportive community...

An excerpt from his Health Update #9:

"Yesterday, I had the unfortunate need to attend a memorial service. It was for a man named Harvey Tesser. Harvey was the man most responsible for the founding and nurturing into existence of the synagogue in which I have proudly held membership for the past 19 years. He was a forceful and determined man, who occasionally rubbed people the wrong way. He was also both a visionary and a doer, who had the persistence to drive his visions to reality. You just had to respect the man, and I did - deeply. We had worked closely together as board members years ago, and I thought that I knew him reasonably well. As I listened to his children, grandchildren, wife, business associates, and friends lovingly eulogize him in front of the standing room only crowd that had turned out to honor him, it occurred to me that there was much more to this man than I had been privileged to know. I felt awed and a little cheated that there were so many wonderful things about Harvey to which I had not been exposed. I couldn’t help but wonder and hope that he knew in life how these people felt about him.

As Diane and I drove home, it was impossible not to reflect on how this scene might play out for me when the time comes. Diane was quick to point out that regardless of what happens when I’m gone, the people who care about me display it continuously. They (you) do it through the endless stream of support I receive in the form of phone calls, e-mails, meals, home maintenance help, office help, driving me to doctor appointments, running errands, monetary contributions, and more. Now, this doesn’t mean that I don’t still expect you to show up in droves, and say wonderful things about me (even if you have to make stuff up!) when that day comes. But, I want to thank you again for letting me know how you feel, and for helping to keep my quality of life rich and rewarding.

Best Regards,
Joe"

Thank you for coming out in droves. We are truly blessed to have had a father and husband like Joe in a community like you.

Love,

Dan, Diane, and Julie

Donations may be made in Joe's honor to the following :

1. Joe Wions Memorial Scholarship Fund:

please make checks out to "JPS COPA"

855 Grove Ave

Edison, N.J. 08820

In the Memo- please write: Joe Wions memorial scholarship fund

2. The Philadelphia or New York Chapters of the ALS Association

http://www.alsphiladelphia.org/

http://www.als-ny.org/

Reconsidering My Words

Sorry it has taken so long to get out another post. I have been going through a rough time. Adjustments to the feeding tube have resulted in weight loss, and consequently, strength. I am currently unable to operate my computer independently, making it difficult to keep up with the blog after getting through email when I have help. Hopefully all of this will change soon. Until it does, I will try to get out a post at least once a month.

It has always amazed me how new approaches to healing seem to emerge just when you need them. After the insertion of the feeding tube provided my wake-up call, Howard Guttman’s quotes of my own words in his latest book and Dr. Craig Oster’s Healers of ALS (HALS) revealed to me practices I had been neglecting and needed to re-implement. In addition, the HALS group has been helping me to explore more deeply the psychological paths to healing. A new member of the group may also have made a valuable contribution to my dietary regimen. Although she has been living with ALS for a much shorter time and is less advanced in her progression than I, she has had greater success in reversing symptoms. While we both follow primarily a raw vegan diet, there are a few elements to her diet that I have deliberately omitted. I am currently investigating a program that I believe guided her efforts, and one which claims to have reversed several cases of ALS.

Along with my HALS involvement, I have been working with a fellow by the name of Marty Murray. I didn’t know what had originated Marty’s interest and dedication to helping PALS heal. During a recent visit to my home I discovered that he is on a mission to make the world healthier. His passion for healing grew out of some personal development activities that led to his discovery of ways to cure his own ailments. He claims that the few who have stayed with his challenging methods have all experienced some sort of turnaround, even those living with ALS. His methods are quite controversial, requiring that PALS accept the premise that the disease is a function of the way they operate. See the website Making-Connections. Some people perceive this as a form of blaming the victim. In my own case, I found that accepting the notion that I have somehow brought this illness on myself is empowering. If I have the power to create it, then I also have the power to heal it. I came to this way of thinking long before either Marty or Dr. Craig entered my life, and have found them both to be welcome partners in strengthening the mental and spiritual components of my healing program.

Recently, while trying to comfort another HALS member, I mentioned that I rarely allow myself more than a few moments in a depressed state. In the past few months, this belief has been challenged several times. Just last week, a trip to the emergency room for dehydration coming from some ill-considered premature changes to my diet, shook my convictions. An ill-conceived prescription (something that I don’t often take) worsened my condition, causing me to suffer for days with severe stomach pain. Throughout this ordeal, I have struggled to fend off thoughts of losing my battle with ALS, and fighting to refocus on my intention, affirmations, and healing practices. It has been incredibly difficult. Fortunately, as the pain has eased so has the struggle. I finally feel like I am getting back on track. Moral of this story is: it’s a lot easier to follow your intention when you are feeling well, but you may become totally lost without one. How many of you have found your intention to be a valuable compass in guiding you back to a positive perspective?

Healing is Hard Work

Believing that you can actually heal when the conventional wisdom tells you there is no chance of recovery takes a great deal of conviction, focus, and discipline. As I wrote in my February 14, 2011 post, I had lost my focus and discipline over the past year or two, and it cost me gains that I had achieved in my physical condition and more. Since the “Wake-up Call” that I wrote about last month, I have re-instituted practices that I had lost track of, such as meditation and mental trips to the gym. My focus now feels restored, and I am more hopeful about regaining lost abilities.

In working on my “From Nightmares to Miracles” manuscript recently, I came across some words that describe the challenge of continuing to believe in recovery despite evidence to the contrary. The way I put it was this: “when the person staring back at you from the mirror is barely more than half your normal weight and lacks the strength to hold or move a pencil or even wiggle a toe, belief in recovery can be difficult to maintain.” It takes constant due diligence to replace negative thoughts and emotions with positive ones and self-love. As I discovered early in the process of battling ALS, “The choice had become simple: believe, as the doctors had told me, that there is no recovery from ALS and die, or believe that recovery is possible and go about discovering how to do it“. I chose, and continue to choose the latter.

When the dark moments hit, it can be very difficult to stay the course. Recently, a fellow PALS (Person with ALS) was going through a difficult time that was challenging her will to continue the fight. In an effort to help, I wrote the following email describing what I do when things get tough:

My heart goes out to you. Times like this can be very scary. When I have faced such moments, I have found three things to be particularly helpful. One is to remind myself that it all comes down to one simple question, "Do I want to live, or do I want to die?" Doctors don't decide that, nor does a disease, you do! Every thought, decision, and action you take flows from your answer to that question. Each time I have confronted myself with that question, and reaffirmed my will and intention to live, I have come through it stronger, more focused, and in a better state of well-being - not always what I was hoping for, but always better. At times, there have been physical improvements, sometimes just a mental readjustment. But remember, where the mind goes, the body follows.

A second thing that has helped me through dark times is to put more energy into my affirmations and gratitude list. There's an old saying my colleagues and I used to use in our consulting work: "You can behave your way into a new way of thinking, or you can think your way into a new way of behaving." It took me about three years to really start believing my affirmations, but the more I practiced filling my head with them and other positive thoughts, the less room I had left for things like fear and doubt. Remember, where the mind goes, the body follows, and you can program your mind with positive thoughts.

The third thing that has helped me is a particular affirmation that I recite daily, and as needed: "I believe in living in the moment, total present time, going with the flow, and loving the challenges." Each time I have lost a bit of strength, I have nearly worn this phrase out reminding myself to stay in the moment. Observing a new physical loss as something that is happening right now, in this moment, rather than projecting it into the future as a permanent change, makes it a lot less scary, and allows you to keep your mind focused on healing. Using this strategy, I have often found that lost strength returns, including things like hand strength and breathing.

Unredeemed losses have occurred when I have lost sight of my intention. That's how I wound up with a feeding tube! I have been living with ALS for 11 years now, and there have been lots of ups and downs. At times I have needed a wake-up call to remind me to realign my behavior with my intention. Joining this group (Healers of ALS) is among my most recent wake-up calls. Your courage and honesty in sharing your history and struggles have been inspiring to me. I hope you choose to go on fighting, but only you can decide. It's a tough battle, but you can win it, and we are here to help.

Her response seemed to indicate that she found these words to be helpful. In my experience, whether it be living with ALS or dealing with other difficult challenges, I have always found that knowing what you want, being positive, and staying in the moment are key to a successful outcome. What do you think?

A New Voice is Coming to Town

A few weeks ago, I wrote to you about how difficult it has become for people to interpret my ALS accent, and the difficulties it presents for both me and those trying to understand. Recently, we discovered a device that may provide at least a partial solution. It is a small computer made by a company called DynaVox (DynaVox Mayer-Johnson | AAC Communication Products & Services). This device will attach to my wheelchair, and is activated by the movement of my eyes. By moving my eyes across various screens, I can scan a keyboard or lists of words and phrases, and when I find the one desired, a simple blink of the eyes selects it. After composing something to say, another blink signals the computer to speak it for me. It can be programmed with custom words and phrases. It can also be programmed to answer my phone and operate my TV.

Although it can take some time to blink in words and phrases in the moment, it will restore a good deal of my verbal independence, and enable friends to communicate with me again. For someone in the advanced stages of living with ALS, this machine is a God send! It will return freedoms, like changing the TV channel, for which I have had to depend on others for some time. It will also eliminate a good deal of frustration and energy drain on my part and those trying to communicate with me by reducing the need for constant repetition of what I am trying to say. Having recently lost my ability to safely taste most of my food, the restoration of these freedoms will be particularly sweet! Hopefully, the device will arrive within the next few weeks. We are looking forward to it with great anticipation and excitement.

The old saying, “when one door closes, another opens” comes to mind. What experiences have you had that remind you of this phrase?

Wake Up Call

Having my swallowing deteriorate to the point of needing a feeding tube has caused me a great deal of reflection and contemplation. Given my intention for fully recovering from ALS, having to get a feeding tube was a huge disappointment. Thinking about changes in my behavior over the past year or so, I realized that I have stopped doing breathing exercises, meditation, taking mental trips to the gym, and visualizing myself in a fully healthy and mobile state. I have gotten complacent. As a result, my breathing has declined to its lowest level ever, my voice clarity and volume are so poor that most people can’t understand me, I have lost significant weight, navigating my wheelchair has become more difficult, and swallowing has eroded to the point of requiring a feeding tube. The tube, for me, has been a startling wake up call.

Perhaps not so coincidentally, two other events have dovetailed with my reawakening. One was the reading of my friend, Howard Guttman’s, latest book, ”Coach Yourself to Win” http://www.amazon.com/Coach-Yourself-Win-Breakthrough-Performance/dp/0071640347/ref=sr_1_4?s=books&ie=UTF8&qid=1297717601&sr=1-4. In it, Howard quotes from my manuscript words that serve as a powerful reminder of where I have strayed from:

“...it takes a while to get past the surrealism, to really get it that your time may be limited, and how you are spending your time right now is how you are choosing to spend what is left of your life.... It finally hit me that holding on to my typical patterns wasn’t going to do anything but burn me out and cause me to fade away with no additional contribution to myself or anyone else.... Once I got it that things had to change, I started to shift my priorities. My work was no longer as a management consultant. My work was now to demonstrate how to take responsibility for my own survival and live with intention to find a way to beat an unbeatable disease.”

While my consulting days ended years ago, reading my own words in Howard’s book made me realize that I have let too many other activities interfere with living out my intention. It made me realize that it is time to refocus my priorities. A second quote from my manuscript reminded me dramatically of what was at stake:

” I have pretty consistently held to the notion throughout this ordeal that recovery (at some level) is a possibility. The flaw in this way of thinking is that, if reversing this disease is a “possibility”, then the opposite is also a “possibility”. ALS is a neurological disorder, and the brain is the center of the nervous system. If my brain is sending out messages to the rest of the system that recovery is only an “option”, then my potential for recovery has been compromised. So my strategy going forward is to convince myself that recovery is a certainty, and that it has already begun.”

Such convincing requires a great deal of meditation and visualization. Giving up such activities results in too many unwanted possibilities. The stakes with ALS are simply too high to risk with unintentional behavior.

The other event that coincided with my reawakening was joining Dr Craig Oester’s Healers of ALS (HALS) group https://alsa.lotsahelpinghands.com/c/634092/login/. Over the past several months Dr. Craig has become one of my heroes. He has been living with ALS for seventeen years. After approaching death as a hospice patient, he finally began to turn his health around, improving enough to get thrown out of hospice. Craig and I share the belief that the key to healing from ALS lies in managing one’s thoughts and beliefs. As a psychologist, who has successfully used this basic premise to reverse his own symptoms, he is now inviting other PALS (people with ALS) to join him in an effort to see if his results in recovering from ALS are reproducible. His determination and strength of focus have inspired me and redirected my attention to behave in alignment with my intention with greater fervor.

What experiences have you had with getting off track from an intention and recovering your focus? What helped you to get back on track?

They Don’t Talk to Me Anymore

Although the experience of not being listened to during my feeding tube surgery was untimely and painful, it is unfortunately also not uncommon. One of the most difficult challenges for me in dealing with ALS is that when your speech becomes significantly slurred and slow, even some of your closest friends and family give up on trying to understand you. Instead, they turn to someone else for interpretation, take their misinterpretation and run with it, or talk or ask about you instead of talking to you. Perhaps worst of all is when they totally ignore you, except for the occasional patronizing remark that addresses you as if you were mentally rather than verbally challenged. If I allow my mind to make this behavior about me, it can feel extremely frustrating, dehumanizing, humiliating, and dismissive. The message you hear is: “You are not important enough for me to make the effort to attune my ear to your impaired speech.”

The truth is that listening to and understanding someone with impaired speech and breathing requires an enormous amount of concentration, patience, and time to get accustomed to the sounds. For more than twenty-five years I was able to earn a living teaching people how to listen, because most are terrible at it. When the speaker’s verbal abilities are impaired, the difficulty of listening increases exponentially. Most people lack the ability and/or willingness to step up to the challenge. When I had clear speech and a strong diaphragm to propel its volume and pace, I could compensate for another’s poor listening skills with my own. Now I have to make other choices.

The first thing I do when I’m not being listened to is remind myself that it is a function of the other person’s limitations, not a comment on my value as a person. To be honest, this effort is sometimes preceded by some anger or frustration, but I always get there, because holding on to negative emotion is unhealthy and stressful. That would work against my plans of recovering from ALS.

Next, I assess how important it is to be heard and understood. If it is important, and I am at my computer, typing the message is an option. If I’m not at the computer and it’s important to be understood, I will ask someone who understands me well to interpret. If it’s not important, I will just let it go. The sad part of this process is that it severely limits my ability to participate in casual conversation and playful banter. I have to choose my moments. Modifying how I participate in conversation is but one of many adjustments that has come with the challenge of living with ALS.

Having people in my life that have the patience and concentration to attune their ears to my speech and pace is critical, especially when I am out and about where it can affect my safety. I am blessed with several family members, good friends, and aides, who take their time to listen and understand. Without them the challenges of communicating verbally would be exponentially greater.

There are some with ALS who have lost their verbal abilities completely, and have to rely on computers or other technology to communicate. These people are heroes to me. As someone who earned his living with his verbal skills, I cannot imagine being completely without them. That is one adjustment I hope to never have to make.

One of my hopes for this blog is to raise awareness among the able bodied of how they can unintentionally dehumanize or degrade people with disabilities, and what can be done to avoid it, and treat the disabled with dignity and respect. It is also my hope that the physically challenged may find insight and strength in dealing with unintended affronts to our dignity. Please share any stories and insights that this posting may have brought up for you. Have you done something well intended that may have offended someone? Have you hurt yourself by holding on to anger or resentment toward someone who wasn’t even aware they offended you? How might we turn those nightmares into miracles?

The Deed is Done!

This past Wednesday I left the house at 7:30 am along with my entourage of my wife Diane, my son Dan, my health aide Jimmy, and my friend Gil. We arrived at UMDNJ in Newark about an hour later. The surgery was scheduled for noon, but the hospital staff managed to fill up most of the three and a half hours with paperwork, x-rays and EKGs. I also had brief opportunities to speak with the doctor, anesthesiologists and nutritionist. By the time the whole thing was over, we finally arrived at home at 7:30 in the evening. It was a very long day.

All of the hospital staff was very nice and attempted to answer all of our questions. Unfortunately, they all shared one very sad characteristic – the inability and/or impatience to listen to someone with impaired speech. Prior to and after the surgery, my entourage made sure that I was understood and that my needs were met. During the surgery, however, none of them were allowed in the room, and the lack of hospital staff listening skill proved to be a disaster. I was supposed to be anesthetized to a “twilight” state, but I was fairly alert through the whole process. When I called out in pain as loudly as I could, I was completely ignored. In addition, the doctor kept leaning on the intravenous needle in my left hand, and ignored my frequent requests to stop. In short, the experience of the surgery was a nightmare. Fortunately, the end result was successful.

It is now two days after the surgery. While I have some discomfort, there has been relatively little pain. The experience of watching food enter your body through a tube is very strange, but it is not as disturbing as I had, at times, anticipated. The accumulated phlegm from previously inhaled food is gradually leaving my respiratory system, and I am already spending far less time on the cough assist machine. We are also learning how to maintain my raw fruit and vegetable diet using the tube. So the plan is working. About another week of healing, and life should return to something close to normal.

I want to thank all of the well wishers and supporters who called and e-mailed before and after the surgery. Your efforts have meant a great deal to me, and have helped to smooth this latest path of my journey in living with ALS.