Finding Footing with ALS

by Kevin

I am going to cross-post another entry I posted on the Facebook ALS group because it illustrates some of my story as a newly diagnosed person with ALS as well as how I’ve dealt with it since then. This was, in fact, my second post after receiving tremendous support from the group for my poem and honoring of Steve. I had started immersing myself in others' posts and felt myself drawn in. Sorry for the length. Guess Twitter would be a poor second choice for my social media break-out ... I hope you like it.

I am blown away by the support of this community. And I want to share some more thoughts, in particular to those also new to the group, or specifically reeling from a recent diagnosis themselves.

I am heartbroken with each new post from a newcomer. Each story so unique with the all too familiar undertow. Asking advice, desperately seeking direction; wandering aimlessly on a battlefield, recently wounded and not yet knowing how badly they’re hit or where to find help. I want to fly to the keyboard and respond to each and every one, "I hear you! Here’s what you need to do! ... Here’s how you’ll come to find some answers ... some peace ... some understanding ... some strength ... something. Not all at once and certainly not perfectly ... but slowly and with ups and downs ... back and forths." But of course my hands don’t work. And my speech is too garbled for dictation anymore, to Siri or my wife. So I hunt and peck with my version of a head mouse and/or eyegaze. Slow ... Certainly with respect to the speed at which my thoughts and prayers flood into my head. My heart aching at clumsiness of my ability to communicate. It wants to rush to meet everyone who’s been damaged by this tragedy. And I know I’m not alone in this. And that is what I want to ... need to share with you. I’m speaking to you now, the new person with ALS (pALS) or caregivers of ALS (cALS) or family member, friend, neighbor (or random person;-).

I think in analogy and allegory so bear with me. None of them perfect, but hopefully illustrative enough to convey my meaning. If any of it lands well with you then I’m thrilled. Please disregard any parts that are just plain drivel, or don’t resonate with you. Here goes.

We all started out on what we thought was a fabulous cruise. Our lives were normal (or at least as compared to now) and we were in control. Relatively speaking. We had no idea we were on the Titanic. It starts with that first shudder as we strike the first iceberg. Maybe you felt it. Some odd news from the doctor that the weakness in your hand or other limb wasn’t carpal tunnel or some other easily explained muscle or joint nuisance. Maybe you didn’t feel the shudder at all, ignoring some new symptoms as transient. Just cut back a bit on the workout ... or salt in the diet. Life goes on right? (I HAVE GOT to remember to get the trash out this time! I don’t want it piling up out back!) Something unsettling sets in. God forbid it’s anything that WebMD suggests! Eventually... it happens. Everything else gets ruled out. How many EMGs and MRIs do you really have go through? At least they’re relaxing procedures. You get the news. That can’t be right. Just some crazy passenger running down the hall. Maybe the seafood buffet was in the sun too long. What is amneo...tropic ...amino...acid ... lactose ... say again? ALS? So what's the treatme... Lou Gehri...??? No cure. I see. You go numb. For the record, I passed out in the doctors office. I came to after about a 45 second bad dream where I was told I had a terminal illness. Whewww! was I relieved when I saw my wife over me as I came back to my ... wait ... I’m at the doctor’s ... neurologist ... ALS. It’s really happening? With no real ceremony or closure, you walk back out of the exam room not really sure if you need to stop at the front desk to make another appointment or settle your co-pay. The last 15 minutes was spent in a din while the doc or medical assistant explains something or other ... everyone is staring at us ... the waiting room seems more crowded than before. The walk to the car is in complete silence. Holding hands tightly. You start to pull out of the parking lot ... shock has set in ... how the HELL do you get out of this DAMNED parking lot anyway!? Which way is home? Home ... home ... Oh God, the KIDS! What do we say? Who do we tell? How!? You have to pull over and explode into tears. ... My wife and I sat sobbing on the side of the road for 30 minutes. Maybe more. It felt an eternity of water, snot, phlegm, mucus, and guttural wailing escaping our eyes, noses, and mouths. Our hands wringing, bodies shaking and we fall down that first huge drop to the ice-y dark ocean below.

Not to mix analogies here, but you’re going to walk a very high and treacherous tight rope from now on. You’ve been forced to perform a balancing act with no training, no warning, and seemingly, no net. It feels like hell itself. The valley of tears. Sound familiar? Maybe some extra details here and there? I got my news in December. Yeah, before Christmas. My mind started spinning. I worked while my wife had chosen to stay home with the kids. How could I provide? How do I make sure my family will make ends meet? Wait... the doctor said I only have 9 months from date of diagnosis! (YES! Get that second opinion!) To be fair, my next visit, he recanted a bit ... maybe double at least, or more. Look for an ALS clinic near you or at least a neurologist that specializes in ALS. This balancing act between sanity and despondency, between getting through the day and falling apart constantly is going to feel impossible ... 

you’re wrong

You’re already in the right place. I didn’t know about this group, this community right away. We did find the ALS association and a local group and slowly started getting plugged into the community. That’s key. This is a community of CASE workers. Compassion/Condolences, Advice, Support, Encouragement. That’s how I feel anyway. The whole spectrum of the disease is represented here. You’re now a part of that rainbow. Here, are the freshly wounded to the warriors, the first responders and search and rescue teams.  You learn triage first hand, then you’ll apply it to others. You’ll start your own CASE load while still receiving CARE, your CASE, from others. Ask ANY questions. Search previous posts. You’ll get very good CARE (Reassurance) here. 

The folks here (at least from my perspective) are watching this ship go down while standing on shore. Part of us are still also on the ship or flailing in the water with you, but stay with me for a moment. Each new person we see fall or call out from the deck makes us want to wade back out to help. The waves hit us again, taking us right back to our own fall and wild rescue attempts. The emotions and pain floods back in. We push out deeper, trying to throw anything that might float for you. The hope is that you’ll gradually gather some stability. You’ll start to accept your new normal, with the next swell in your peripheral vision. Flex your resiliency, your humanity. The CARE will come in many forms. I think most often, having something to firmly ground you, or an anchor to keep you tethered to your sanity helps allow you to reach out to others. Don’t get me wrong, sometimes you cling to the person next to you in the chaos in a buddy system until either of you can get a foothold. But finding that tether, that focus, that lighthouse, that something solid that you can rely on will go a long way to helping build that strength that’s inside you. Yes, it’s there. You just may not have had, or wanted, to call on it or flex it yet. For many, this foundation is rooted in faith. That may be faith in God, or a faith in Humanity or the Universe, or even just in Love and relationship. Whatever the form, the intentions are the same. To throw that lifeline out to help another in need. This group IMHO is not about religion, or faith or converting anyone. It’s about ALS. Caregiving tips and just trying to cope with a disaster. A disaster that everyone knows the ending to, but gets to choose how to spend that remaining time together.

Find your balance, we’ll help. Don’t look down, stay focused on the step or two ahead. Don’t get dizzy looking too far ahead too quickly. Breathe in. Breathe out. You’ll find good advice here on next steps from those ahead of you. Don’t sweep those shattered pieces of your life in the dustbin yet. With a little glue and some puzzle skills you’ll find here, you can put some of it back together. Some missing pieces maybe, and it won’t look like it did before, but that doesn’t mean you can’t form something beautiful from the remaining shards.

Oh and one other thing. Some of us will occasionally come floating by in our ridiculous pink inner-tube or oversize three wheel water trike with an umbrella drink and eye mask on yelling for the cruise director to please fix the lazy river. No judgment! Grab whichever lifeline or floating debris is closest to you. Let the rest float by.

I personally found my strongest footing in Jesus. During the wildest storms He calms the sea for me. When focused on His face, He can command me to jump out of the boat and walk on the water. Whether I sink or not is up to me. With His help, my life, my family will always be whole.

You are stronger than you think. And united we are a force not even ALS can defeat. Indeed my faith has shown me that I’ve already won.