Unsung Heroes…

This is our wedding photo. Yes, we got married in Vegas, by Elvis, at Graceland Wedding Chapel. Best day of my life!

Today I’m writing a sincere thank you, a love letter, to all those who are caring for everyone that needs human support, for whatever reason. Since I’ve started writing this blog, I’ve corresponded with many who are suffering, not just from Lou Gehrig’s disease, but from many types of terminal illnesses. I’ve heard from just as many who are loving and caring for them. In the world of Lou Gehrig’s disease, there are “PALS” (patients with ALS) and “CALS” (caregivers for those with ALS).

On a daily basis, I touch base with someone who has lost a loved one they had been caring for. In the case of ALS, the CALS is usually a spouse or parent who has been by their side through it all. I’m amazed at how strong these caretakers remain while traveling down this very tough road. In the end, all feel a sense of loss, but also relief in the fact that the suffering has ended. I often write to those experiencing the loss, expressing that their loved one is indeed in a better place. The suffering and helplessness have ended. I also assure them that their love and care was appreciated so much, even when it was not expressed.

Amy and I often joke that all I do is worry about her, and all she does is worry about me. Knowing what Amy is going to go through caring for me as this disease progresses is far harder on me than the diagnosis itself. It’s very difficult for me to grasp that she can derive any joy from having to care for me. To me, that’s supposed to be my job. After reading so many posts from those who took care of PALS throughout their journey, I am starting to learn that those who love us are are often fulfilled by caring for us. For that, I can never say thank you enough.

Blake Shelton wrote “God Gave Me You” and as I read all these accounts from PALS and CALS, all I can think about is how blessed I am that God put Amy in my life. I’m sure most diagnosed with terminal illnesses feel the same way about whoever may be caring for them.

There have been a few rare occasions where either the patient or the caregiver has expressed complete exasperation, wanting to give up. Thankfully I’ve only learned of one instance where a fiancée said she didn’t sign up for this and walked away. This is horrible to hear, but also understandable, considering the sacrifice required without the hope of a happy ending.

More often the frustration from a patient comes out when they just aren’t able to accomplish everyday tasks or can’t find a reason to continue the struggle. During these times, the loved one often takes the brunt of this frustration. It’s then that I remind those suffering from this disease that beyond our comprehension, those caring for us are finding joy and fulfillment in doing so. “In sickness and in health” are part of the traditional wedding vows but you’re never really sure of what your signing up for until you get to the fine print at the end of the contract.

During my weekly suffering in sauna therapy (yes, I’m whining again), Pandora flooded me with songs that fit this week’s title. One that didn’t come up, and just came to mind, was Journey‘s “Faithfully.” We’ve already established that I’m old and grew up on 70’s rock-n-roll, so bear with me, or just don’t hit play. (Fun Fact: I have seen Journey in concert more than a dozen times, with and without Steve Perry.)

Last week I heard from a PALS who said she had been visited by a “friend” who tried to console her by saying, “we’re all going to die… I could walk out of here and get hit by a truck.” Epic fail!!! I wrote her back and said that it is true, we’re all going to die, but her “friend” has no idea what traveling down the sidewalk is like for us before we get hit by the truck. It would have been far better to do as our pastor advises, “Show up and shut up.” This prompted me to post:

It’s supposed to be a warm, early spring, weekend for many of us. I could write for days with thanks, praise, and love for all the caregivers out there. Instead of reading my endless ramblings, I encourage you to get outside and find joy wherever you can find it. Look for the little things, listen to the sounds of nature that had taken the winter off, take in the smells after a spring rain, break out the deck chairs, crack a beer, and enjoy the sunset and the full moon.

As always, thank you for taking the time to read my musings. I only hope you derive a little joy from them.

I’ll leave you with this passage:

Take care and God bless.

Coach