pALS: Masters of Waiting

I got up this morning and Facebook asked me what’s on my mind? Nice of them to inquire.

Well I have to admit that I have been reflecting on one word as an ALS patient, that word is “wait/waiting”. Waiting is something that we ALS patients master as our condition progresses. Mastery comes through long periods of meditation… Or so it seems until someone realizes we actually need something.

Indoctrination into the Master Waiting Program begins at the doctor’s office. As the patient and their loved one patiently await the physician to return, after they say, “hmm thats interesting”, excuse themselves by “saying I’ll be back in a moment”. It may be 5 minutes or 30 minutes, but to us it’s an eternity. And then the physician returns with the devastating news that you have ALS. Worst of all are the following words, ” there is no cure and all we can do is prepare you to have a good quality of life”. Here’s the contact information for the local chapter of the ALS Association, I’ll give you a few minutes”

This scenario plays out time and time again. I personally think it should be considered a form of hazing. This being because we are indoctrinated into an exclusive Club that no one wants to be a part of.

Mastery of waiting continuous as our condition progresses. Everyday we are waiting for another part of our body to no longer function. We expect it but it still surprises us when we wake one day and your arm hand or leg basically becomes like an obstinate child and simply won’t do what you ask of them. All of this is the normal progression based on the history of ALS.

The medical establishment believes that we patients lose weight because we slowly lose the ability to swallow. I’ll let you in on a little secret, that’s not the reason. The real reason is that we have to wait an exponential period of time for every bite. Allow me to elucidate; we as patients are patiently waiting at the dining table to be fed, we are dependent on others for our sustenance as we can no longer use our arms and hands. If you were to be an observer at our dinner table you would notice a very animated conversation regardless of the topic. And if the person who is feeding me is enthralled by the conversation I have to patiently wait until they turn their attention to me. I know I’m going to hear about this next statement, just know that I love you Meg. If you know my wife you know that she must have some part Italian in her genes. When she talks she can’t help but use her hands to express what she is saying. Picture the following… She takes a spoonful of food and raises it to my mouth. As I maneuver to take the delectable morsel the conversation takes an upturn and I find myself chasing the spoon as Meg speaks with her hands, LOL. Remember I love you sweetheart! To be honest this happens with anyone who is feeding me. I often joke by behaving like a baby bird waiting to be fed, pew-pew-pew…

These types of scenarios play out every day for us as patients. So you see we quickly achieve black belt status at Wait-Kun-Do or Yu-Wait-Long, depending on which art form you practice.

Ultimately from the moment we receive the diagnosis the waiting game begins. Knowing that we and our loved ones are waiting for the inevitable.

As ALS patients we must learn to be patient with our families. We must remind ourselves that our families are learning to cope with our condition also. We as patients should be proud and happy if the dinner table continues as it has always been. This is just the new normal.

I hope everyone has a super fantastic day, be blessed.

The Juan and Only

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