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ALS and the Art of Timing

I received the following email last week:

Hi Ron, I reached out to you six months ago when my husband was diagnosed. Everyone told me CCALS was fabulous, but I just couldn’t set up a meeting. Now I need to. So many questions, concerns and fears have come up since I first wrote. Hope to see you soon.

I get a lot of messages like this from folks who have heard about us, know they need the support, but for a variety of reasons, are unable to take action. First of all, it’s important to acknowledge the trauma of receiving that diagnosis. This is what’s known as a “shock trauma” and it is devastating. Most people, to one degree or another, shut down. They freeze, just like a gazelle on the Serengeti Plain who finds itself in the jaws of a cheetah. It’s a natural response to go completely limp.

In nature, however, once the initial danger has passed, if the animal survives the attack it shakes it off and gets back to its life with no lasting effects. It’s not so easy for people. We don’t know how to process the trauma and can often shut down—like Janet—for many months. Some people stay that way through the entire illness. That can make things really hard.

I had another gentleman contact me for a second time, wanting to know how to convince his dad to see me. “I don’t know what to do, Ron. I’m sure that speaking with you would be helpful, but he resists the idea every time I bring it up.”

“Does he keep his doctors appointments?” I asked.

“Yes, of course.”

“Then tell him I’m a doctor!” I said, joking.

It is kind of funny though, how the mind works. People will religiously go see their doctor hoping for some kind of a fix, because that’s what doctors are supposed to do. Our services are harder to understand—not quite as mainstream—so there is resistance, even though we can really make a difference.

Again, I want to acknowledge the severity of what we are dealing with. Not long ago I read somewhere, “Even after the ALS diagnosis, you are still the same person.” I beg to differ. You are not the same person. Your life has been radically altered, turned upside down, and who you were is no longer who you are, and who you are becoming. I believe it is important to accept the new you as soon as possible, and begin exploring the world that has now been opened up to you. Yeah, it’s scary, and not what you wanted, but so many potentialities and possibilities are now available. Why not explore them?

That’s why, in my perfect world, people would get connected with us right away to help them through the initial trauma of the diagnosis. This way we can get things started on a good path, and avoid a lot of haphazard information and advice given from unreliable sources. What I often say is, “I’m not here to tell you everything you don’t want to know.” Surfing the Internet, for example, reading random articles, is often a recipe for prolonging and intensifying the initial trauma. It can add so much unnecessary anxiety.

It’s a timing issue, and a very important one. Think of it as a long walk through the wilderness. There are ways through that are much smoother and enjoyable, ways that can be incredibly beautiful. Then there is bushwhacking through the bramble. That’s what can happen when those first few steps aren’t well guided. That’s why, in my perfect world, my staff and I are there for those first few steps. Somebody to hold your hand and say, “Take it easy,” and, “You don’t have to rush into anything.” Rather than somebody who jerks your arm and says, “Well, you better get to that hill over there before sundown or you might get washed away in the flood.”

You see where I’m going? The art of walking this path is very much about timing. What to do and when to do it. What to learn about and when to learn it—and more importantly how to learn it. That’s our specialty. We’re not here to tell you what you don’t want to know, or what others think you need to know. We are here, however, to ask questions, show up with our radar fully engaged, and really listen, and find out where you are. Exactly where you are. We can also use our experience to anticipate needs that may not be in your awareness, but might be helpful. And then invite you to learn what may be around the bend, and how to prepare for it, and maybe how to embrace it and grow from it in the best possible way.

The only reason we can do this is through our personal work. We have trained and devoted ourselves to a path of healing and awareness. To the best of our ability, we have dealt with our own trauma and woundedness, and don’t bring them into our relationship with you. We arrive with open hearts, and the freedom to maneuver. We show up with clarity and a clear mission to serve. Simply put, we do our best to bring compassion, care and love.

To the best of my ability, I have become familiar with my own mortality, and have encouraged my staff to do the same. We do not see ourselves as all that different from our friends with ALS. We just happen to be healthy at the time, knowing that won’t always be the case, and accepting of that. As I have said many, many times, you can’t show up for someone with a fatal illness if you have not faced your own mortality, truly faced it and reached some level of acceptance. Someone in denial about his or her own death will unconsciously cause problems for the individuals and family members facing the real thing. There’s no getting around it.

That’s why I’m on a mission to bring meaningful end-of-life training to those in the healthcare profession. It would bring so much more compassion into the process. Rather than seeing the person who is ill as “other” and someone different or odd, you can see yourself in them. What would I want to hear right now? What would I want to know? A very different perspective.

With gratitude,

Ron

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