Hope With A Hopeless Condition

ALS doesn’t own this, there are too many conditions that fall under this to list. Many physical and so many spiritual and mental. I and my family know of ALS, so I will speak only to that.

The moment the words are uttered, “you have ALS”, even the Dr sounds hopeless, resigned to sending you home to die. So naturally you and your family internalize this pulse of hopelessness thrust upon you. Like a dark cloak thrown over your life, it blocks out all light, leaving you to wallow in the darkness.

Here in lies the moment where you must make a choice. No you can’t cast off this cloak, it is now a part of your life wardrobe, added to the many other “fits”, to use current vernacular, you have in your mental wardrobe. The question then is… do you rotate your wardrobe? Or like current teens, wear the same “fit”, until someone says enough! Like a frustrated parent, ” I’m going to burn those T-shirts”, if you’re a parent you know.

Given that this gloomy cloak of despair is a permanent addition to your life closet, how often do you don it and allow it’s false embrace to comfort you? I can’t answer this, only you can. I personally know it’s there, however for reasons I can’t explain, I just don’t care to wear it, it’s simply not my style. Nothing wrong with wearing it from time to time, I know many who simply can’t take it off. This is when help is needed, if you’re open to it.

I for one, am hopeful.
Hopeful for the next moment, the next day, the next encounter. Hopeful for treatments and a cure. Much like rock climbing, with ALS you have to focus only on the next handhold, that next crevice, mentally straining your fingers to hold on. It’s immensely difficult, but don’t forget, if you are blessed to have a good support network, trust your Belay.

Forgive my use of multiple metaphors, they just pop into my brain, lol.

Choose your wardrobe, and as many of us do, let others help dress you.

Trust your Belay, they are there to keep you climbing safely.


ALS…the Marathon

ALS is taking my body, one nerve at a time. It started with uncontrollable twitches. An EMG reflected a symphony of indistinguishable static to me, but to the neurologist… a familiar dirge. Since then it continues to take one muscle fiber after another, due to motor neuron death, causing atrophy. With this comes loss of limb function, strength and any semblance of dexterity.

As if to try and scare me ALS leans in and wispers in my ear, “I’m going to take everything from you, even your voice and your last breath.”

Ha! I burst out laughing… are you serious! I have teenagers! ALS cowars back into the receses of my mind, for now.

What is ALS? It is a marathon that you run with Death as your pacer. No rest or water breaks mile after mile. One can only feed on hope and love until you cross the finish line.


The evolution of ALS and socializing…

A glimpse at life with ALS.

Hey folks I have something to share with you as my closest friends; I have ALS…

~What the hell is that?

Well it’s…

~Dude, I’m so sorry, we are here for you. Whatever you need! Let me buy you a drink. This ain’t gonna stop you! We are going to fight like hell!
Hey good to see you, how you been? Thanks for joining us, we wanted to meet somewhere your wheelchair could access. Let me get us a round of drinks.
Hi, how’s it going, been a bit. You’ve modified your home, is it working out for you? We brought a meal. Oh, I’m so glad you’re still able to eat. Yeah we’re doing good, you know busy and all. How’s the new experimental medication working?

It’s not experimental anymore… just new. Won’t know how it’s working for a while.
FB Post: Hey there, sorry we haven’t been by, went on vacation then a huge project at work, you know how it is. Will drop by soon.
FB Post: Great seeing you at the walk! You’ve really gotten good at that eye computer of yours. You looked good.
FB Post: Dude the pics of your trip are amazing. So glad to see you’re not letting ALS slow you down.
Um, hi, I hope you can hear me brother. We are all here…

It’s not anyone’s fault, it is the disease to be honest. Life for all of us continues at the pace our lives require. Friends and even family have a harder time seeing us so vulnerable as our ALS progresses.

In the end we are all just here for each other and that’s all we can do, be present.

If you are a friend of someone dealing with a terminal condition, please visit them. You may just sit in the quiet company of a dear friend. You know what… that’s enough…


It’s Okay to feel the way you do…

(Based on observations of others comments on social media)

ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.

The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.

Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.

I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!

However you feel, at any point in your journey, that’s OK.