October 17, 2022

Devolution. A real word. For purposes here, I’ll butcher the meaning to my advantage. Devolution is to devolve as evolution is to evolve. For my first 55 years, I evolved from an infant to a toddler to a tween to a teen to a man to a husband to a father and in one fell swoop, my evolution stopped and my devolution abruptly and rapidly began.  Here I sit at age 58 a very young toddler again. Like a very young toddler, I struggle to form discernible sentences, I can’t walk or wash myself or brush my own teeth or do bathroom myself or dress myself or clearly communicate even my basic needs like where to scratch an itch or how to fix a shirt that to me feels twisted or bunched or pulled to tight, etc.. And like a toddler I act out in frustration and even get scolded for it. We all devolve for sure but, for those of us with ALS, our devolution happens at the speed of sound. The deterioration of our voluntary muscle movement far out paces our emotional ability to keep up. That emotional challenge is the real curse of the disease. The evolved mind is fully there but, in a blink, the body devolves you back to toddlerhood and ultimately infancy. I still try to find the good in all things but I struggle to find the good in devolution at the speed of ALS. My wife just said it should be called “Devilution”. I can’t disagree.

October 16, 2022

While waking up this morning, I felt a critter crawling on my hand. A UCO, unidentified crawling object. Luckily my wife was able to extinguish the UCO before it did something uncalled for like crawl up my nose or into my ear. That would have sucked. Of all the itchies I feel, and can’t scratch, on my hands and face throughout the day and night, I shudder to think how many are actually UCOs. Oh well, it’s best not to think those thoughts.

August 8, 2022

This is awkward. Bear with me. By the end, you’ll see things are trending in the right direction. Anyway, here goes. I am increasingly reminded of late that I am a horrible ALS patient. I’m told I’m impatient, self-centered, and don’t appreciate all those around me. Salty language has been flung around unlike we’ve ever seen in 32 years of marriage. I don’t deny any of it. Neither does she. This is hard. The next time I have ALS, I will strive to be a better patient. The declining communication that comes with this disease is the root of all friction between us. We both know it, try to avoid it, but the daily grind of this beast always seems to prevail. All that said, here’s the good news. I’ve been wheelchair bound for 8 months now. That’s roughly 240 days. We do three dangerous transfers each day, from wheelchair to sleep recliner to toilet. Each transfer involves safety belts, a contraption called a “lift assist”, extreme concentration, timing, and strength on both of our parts. One false move is not an option. When you do the full math, that is 720 times to date that we’ve had to work as a team, to perform a high-wire act that no one ever sees, and that we never in our wildest dreams thought we’d have to perform. But we do it, warts and all. And for all of the friction we cause and endure, we always succeed. And so far without injury, knock on wood. Despite all the friction and strain this puts on our marriage, we’re amazing. She’s amazing. On a daily basis, we’re together pulling off heroic feats that no one will ever see. That’s our story. Quietly persevering under impossible circumstances, a story only we will know. 

August 6, 2022

(a tatoo I am considering,,,,it will be my one and only)

"In the end, 

When sizing up the aging wood, 

Humbly find the storied spirit in every fissure, 

And in so doing,

Be nourished by your findings, 

And enjoy the good."

July 15th, 2022

The mechanics of writing, including dictation, has become frustrating if not nearly impossible. Therefore, my son Riley has generously helped me with this entry. I have tried eyegaze and other assistive technology but the steep learning curve has me frustrated for the moment. Therefore, Riley is helping. A few weeks back, I had a moment of weakness going to bed, which turned to a moment of clarity. And that moment collided a few weeks later with a new song I happened upon by Aaron Lewis called Pull Me Under. Let me explain. Going to bed one night, my wife was getting all my meds together in another room. When she returned, she found me sobbing. It doesn’t happen often but when it does, it’s always unexpected and usually helpful in an epiphany kind of way. Its like the mental pressure builds and every once in a while, the dam breaks and out come the water works. That night, when that moment ended, I attempted to explain to my wife what brought it on. I explained that at this stage of my ALS, it’s like swimming upstream in a swift moving river current. The harder I swim, the more frustrated I get and the worse my full body cramps get. Its futile. Swimming but going nowhere. Or worse, going backwards. The river never ends and the uncurable nature of ALS means the riverbanks can never be reached. And each day the river current gets stronger and the muscles get weaker. I’m swimming furiously every minute of every day to no end. I went on to explain, and she didn’t like hearing this, that at times I just want to let go and let the river take me to wherever it wants. I just want to be free. Fast forward to the Aaron Lewis song. One interpretation of the song is that a man is in the firm grip of addiction. He knows it’s his fault and that he is hurting people around him. The refrain of the song is “Pull me under, save yourself, I’m the one who needs the help”. In my case, it’s not addiction but ALS. And I see some merit in giving in to the river, even if it pulls me under. When that happens, I can finally relax and the pain will end for all involved. I didn’t ask to sob that night nor am I steeped in morbid thought 24/7. It was a much-needed release, a moment of weakness, and a moment of clarity all converging at once in the best of ways. I’m thankful for that moment. And for that Aaron Lewis song playing in the right place and at the right time in my ALS journey. 

 May 20th 2022   

20 years ago today I moved from Massachusetts to Virginia as a company transfer. In a few weeks I will have been with the company for 36 years. June 2nd 1986 was my start date. It’s always been difficult to explain what I do for a living. I am not a lawyer but I spent 36 years writing contracts for my company in the power industry. My longevity solely depended on my getting the words exactly right in the contracts. To illustrate the importance of word selection and word placement in a contract, consider this real-life example of what happens when the words aren’t right:   In this example, the contract read “… the bond must be renewed within 30 days of its expiration.” Instead the contract should have read “… the bond must be renewed within 30 days after its expiration.”  Small difference, right? The word “of” was used instead of the word “after”. No big deal, right? Wrong. The person who actually wrote the contract was fired. Why? Because their job was to write that contract in a way that gave us 30 days to renew the bond after it’s expiration. But instead they wrote it to be interpreted that we had to renew the bond 30 days prior to its expiration. When we let the bond expire thinking we still had 30 days to renew, the customer successfully argued we were in breach of contract. The legal departments argued the interpretation for over a year before It ultimately went to arbitration where it was decided that the language favored the customer’s interpretation. When you add up all the legal costs of arbitration and the termination fees for breach of contract, our company paid out over $1,000,000. All because the word “of” should have been “after”. Anyway, that’s what I’ve done for a living for 36 years. Making sure the “ofs” of the world aren’t used when the “afters” should have been. If you don’t think the finer points in life are relevant, have your employer move the decimal point one digit to the left in your next paycheck and see how that goes. Details mater. 

May 13th 2022 

19 months ago today I took a tumble down two flights of stairs. My head went through some sheetrock and I ended up with a concussion. It was ALS but I didn’t know it yet. 12 months ago today I face planted in the kitchen. It was bloody, I broke my nose, loosened my front teeth, and my upper lip had to be reconstructed. It was ALS but I didn’t know it yet. Today I am safely in my Hi-Tech permobil M3 wheelchair safe from harm excepting the three transfers my wife and I have to do per day which is a high wire act each time. Despite the ironic comfort of my wheelchair, each day I become a little more paralyzed. And each day I lose a little more of the mind game this disease likes to play. I learned a week ago at the clinic that my respiratory numbers are now below 40%. I am now on an external ventilator. This is starting to feel real. 

April 21st 2022 

West Nile virus. My original blood work back in September 2020 showed that I had antibodies in my   system indicating that I had the virus at some point in the past. There are more than a handful of articles written that theorize West Nile and other similar viruses spread by bugs mimic the symptoms of ALS. This past week I’ve been having vivid dreams my ALS is not ALS at all but is instead due to a bug bite. How weird. Right?   I’m sure the three different teams of neurologists I’ve seen couldn’t all be wrong, right?  Right? 

April 19, 2022  

Been reading a lot lately about preparing for end-of-life. For me, that could be months or years. I just don’t know.  I assume, but don’t know for sure, that I will die from ALS. Wipe that look off your face. Maybe it will be a sudden heart attack or major stroke or maybe God strikes me down for this, me trying to micro-manage the moment of my own death. Just saying. But let’s assume it’s ALS. If so, I hope to be in the comfort of my home, specifically in my favorite red leather recliner.  It’s been a good friend. Ideally, I will be on the right cocktail of meds where the anxiety and spasms are at bay while I am also fully aware what is going on. I hope the house to be busy with conversation, stories and laughter.  Not small talk but stories that ring a bell.  Familiar stories. Not stories about me or directed at me but stories being told around me.   I hope to hear people making plans for the future, fun plans  …… maybe plans  they would not make but for seeing me in this condition. I hope there to be the smell of good comfort food in the air. Maybe a good red sauce or a Frannie meatloaf or some Granny homemade bread. No fish though. For God’s sake, no fish. I’m already dying here so please spare me the smell of fish. I hope there to be a mix of music in the background, nothing specific but maybe a singer-songwriter vibe. Anything but silence. I hate silence and always have. And no doting over me.  No blank stares. No looks of lasting sadness. I assure everyone that I will be ready to be done with this illness. I will be ready and relieved for my family to move on. Nothing would make me happier and more at ease. When I’m gone, I will be cremated and only ask that at least three sources have confirmed my death before putting me in the furnace. Putting me in there too early would suck and probably make me rethink this perfect plan. I don’t want a formal service. What if everyone is busy that day and can’t make it? That too would suck so instead I hope for a celebration of life. Somewhere with sand, water, a campfire, acoustic music, coolers of beer, and a nice selection of wines red and white alike. In the end, I hope my ashes are spread in the waters of Long Island Sound at or near Point O Woods Beach, where my all-time favorite childhood memories were made.  In the years after I’m gone, my family can come visit me in the Sound by way of a beach picnic or fishing for stripers or a sunset dinner cruise or a moonlight bottle of wine on the beach. There you have it. My happy ending, perfectly micro-managed to the end LOL! 

 April 18, 2022 

 ALS is difficult to explain even under the best of circumstances. But I read something the other day that broke it down nicely in a way that most people would understand. The brain cells are like the transformers outside on  the street that bring electricity to your home. Those are not damaged. Your muscles are like the light fixtures and appliances inside your home. They also are not damaged. It’s the wiring inside the walls of your house that are damaged. Those are the neurons that connect the brain cells to your muscles. As the disease progresses, your lights and appliances start flickering little by little until none of them work at all anymore. And you can’t fix or replace the wiring. That is ALS. 

March 28, 2022 

Will Smith at the Oscars. Not cool. So not cool. He gets up, walks to the stage and provocatively hits another man for telling an insensitive joke. So many other dignified ways to handle it but no. Instead, activism and narcissism at their best. Hopefully social media was happy. That's all that matters. Both men happened to be black. And celebrities. Therefore, no outrage, no arrests, just another day I suppose in our callous, socially “just” society. Imagine if either Will Smith or Chris Rock were a white man. Not both but either.  Now there’s a narrative that would’ve fed the rabid wolves for another couple months … or election cycles. There would have been fires, brawls, riots and around the clock accusations of racism. Thank God the parties involved didn't fit the narrative. Anyway, back to our regularly scheduled programming.

March 6, 2022 

Two competing truths give me stress these days:  I love the people who visit yet I despise having ALS in front of them.  No matter the best intentions, there’s always a moment I feel like dead wood in the room. Nobody’s fault. Just a reality when your voice, and therefore your thoughts, no longer carry in a busy room of big-hearted people filling the air with whatever words, stories and small talk they deem necessary. I should be grateful and I am.  I shouldn’t get bitter but I do. Two competing truths. 

March 2, 2022

 I am beyond moved by all the friends who have visited, and continue to visit, since learning of my ALS. Likewise, I am touched and heartened by some of the emails received from those friends. Here’s what one of them recently wrote: 

“….. it may sound weird, Dave, but I left your house Saturday happy.  Happy that I saw you again, happy that I met your boys, happy to see how you and Ann Leigh are  navigating a really tough situation, happy to see you laugh, happy that we are friends, and happy that you’ve been part of my life.”     

 Another one wrote: “I’ve always known how important you are to me but your illness has me revisiting my past, who I am and who I want to aspire to be. You are someone I want to be like. It’s amazing how that window of life (15 - 18 and beyond) has loomed so large throughout my life. Anyway, thank you for allowing me to help. Love you.” 

 I share these here as more examples that there’s good in every circumstance, even mine. I replied to one of those emails with the following which I share here as it really applies universally to the friend group I grew up with who, to this day, I still consider my brothers:  “And then something like this happens forcing us to take inventory all over again. In my case, it’s been very positive and therapeutic. Of all the shit and minutiae, I could be dwelling on now, I only remember the good. Why that’s the case, I haven’t a clue. I’m just thankful and don’t question why. It’s like I accumulated 100 bags of luggage in my life and over the years 70 of them were either lost, stolen, or damaged. But 30 of them are perfectly intact and it’s those 30 that I only now realize are the only ones that really meant anything. I’m thoroughly enjoying going through them at this point. What you and  I  and all of us had, and still have, account for a good chunk  of those 30  and are among the luggage I most treasure.” 

March 1, 2022

Life lesson learned this week:  If you’re a guy in a wheelchair with very limited core strength or use of your fingers, hands, arms and legs and are completely dependent on your wife for your safety and virtually every need big and small, do not - I repeat DO NOT – suggest to her a better way to floss your teeth. You can think it.  Just don’t say it.

February 16th, 2022

A friend asked me recently, do I believe in God? Actually, the question was do I believe in an afterlife? But I couldn’t answer the second without pondering the first. As a pragmatist, I don’t know for sure the answer to either (who does?) but it made me think. Here’s what I do know: I pray every day and have for most of my life. Why?  I’m not always sure. I know I’m insecure and never had the sense I was the biggest fish in the pond. Maybe praying, all stripped down, was my security blanket. As a kid, I went to Catholic school because I had to but, honestly, I’m not sure I learned anything about Jesus the man, the sacrifice he made for us, the resurrection and the debt he paid for our sins. Maybe I did learn all that but what I retained was when to sit, stand, kneel, repeat phrases after the priest, memorize prayers for every occasion, know how to stick out my tongue to receive communion, etc. So my early prayers were off the shelf, memorized prayers. In retrospect, they didn’t mean much.  My Catholic experience was more about pageantry, rehearsed rituals, intimidating robes and in later years, hypocrisy, than it was about the simple story of Jesus and God and man and faith. In my early adult years, I stopped going to church because the only church I knew was the Catholic Church. It also didn’t help that my parents got divorced and my Mom was shunned from the church. They humiliated her by refusing to give her communion at mass one evening.  It was a spectacle. She got up from her pew, stood in line and when her turn came to receive, she was pulled aside by a church elder. Something was whispered in her ear and, after an awkward pause, she sheepishly returned to the pew. Not cool. So much for only letting God be the judge. Later in life, I found several churches, Protestant churches, that started to unfold for me the historical story of the life of Jesus.   The more I learned, the more I accepted that Jesus actually lived and existed.   I can’t explain his miracles nor can I explain virtually anything from the Old Testament.  But I do accept that he walked the Earth, did amazing things witnessed by thousands over a 33-year period, was sentenced to death and was publicly crucified on a cross.  As I grew in my faith over time, I started to buy into his being sent here by a higher power to humble us. That was as viable a belief as any other culture who believes in their own version of invisible spirits of a higher power. As I aged, I learned I could have a very personal, intimate relationship to God without any of the pageantry and arrogance of the Catholic Church. I learned and embraced that it was okay to go about my faith, and my struggles with faith, in a very private way.  Just me, Jesus and God sorting it all out. In that process, my prayers evolved and became much more personal and meaningful. I came to look forward to those daily conversations and still do. So, do I believe in God?  In reading back the last four hundred words or so, I guess the answer is yes. I can’t prove he doesn’t exist and I am comforted to believe he does. Maybe that’s enough. Kind of like the undercoating on my new car. I can’t see it nor can I prove they actually applied it but I’m somehow comforted to think it’s there and I won’t rust out. For some of us, blind faith is bliss. As for an afterlife? Definitely maybe. I think. Depends on the strength of that undercoating, I guess.

February 9th 2022

Patience. Courage. Strength. Endurance. My daily prayer for Ann Leigh, David, Riley, and myself. Patience to cope, courage to accept, strength to overcome and endurance to keep pace with the relentless challenges presented by this Beast. Not unlike a prayer I would say before every marathon I ran. Sadly, we all know we're in a marathon but we have no idea where we are in the race. 3 Mile mark? 10 Mile mark? 20 mile mark? We just don't know and that is disorienting for all of us.

January 30th, 2022

Goodbyes. I said goodbye to my wedding ring this week. The fluid retention in my body made it necessary to remove my ring before it was too late. I will never wear it again. So I said goodbye. It's now with my wife’s jewelry collection. I said goodbye to the second floor of my home 3 months ago. Will never climb stairs again. I said goodbye to driving a car 11 months ago. Petting my dogs. Goodbye. My hands don’t work and my arms are too heavy to lift. Goodbye to itching my own nose, rubbing the sleep out of my own eyes in the morning, or adjusting the neck on my own shirt when it feels uncomfortable. Goodbye to grilling, getting my own snack, cracking open a beer, opening the fridge on my own, and all the other simple things from my previous life that I took for granted. Too many “goodbyes” to name. ALS is a disease of goodbyes.

January 28th, 2022  

Details mater. Get it? Never mend.

January 19th, 2022

I need hand splints. My hands and fingers clench uncontrollably due to ALS and the splints stave off the permanency of the clenching. So I went to the ALS Clinic and they sent me home with two splints. We didn’t discuss the cost of the splints with anyone at the clinic. We did what normal people do; we just let insurance handle it. A month later we received a bill showing the cost for the splints was $520. Wait, what? The splints were not custom made and were literally handed to us off a shelf. For giggles, I went online to see what those splints would cost had I just bought them without going through the clinic. To my astonishment, I could have bought both splints for $54.98. Same brand name and all. At first I thought, why should I care? Insurance covers it, right? Not my money. But the insanity of the chasm between the two prices started to drive me crazy. With time on my hands, I did some reading and learned what is probably obvious to everyone but me; it’s a scam. Both the clinic and the insurance companies set the price. They are kind of in collusion. The clinic has splints on hand because they know patients like me will need splints and also know that people like me have insurance. So they buy the splints from their supplier and mark them up with a very healthy margin because they must cover their overhead cost such as taxes, fees, personnel salaries, equipment, buildings, facilities, loans, debts, past due receivables, etc. So maybe they paid $25 for a pair of splints and, after all the markups, that $25 quickly becomes $260. But they know they can’t sell them for $260 without the backing of one or more insurance companies. So they asked the insurance companies they deal with how much they will reimburse them for the splints. The insurance companies say they will only pay 50% of the cost of the splints. The clinic pushes back knowing that they need at least $260 for the splint to cover their overheads. The two sides negotiate and, in a Bizarro World kind of way, they set the price of the splints at $520. Why? Because 50% of $520 is $260, which is the magic number the insurance company said they are willing to pay. How do they get away with that? Because we let them. And because the clinic and the insurance company are large companies with very large overheads they have to cover. And because the insurance lobby in Washington DC is so strong that legislators don’t dare try to regulate or limit the negotiated price. And because we little peons who are the consumers have zero leverage compared to these big corporations and the powerful lobby in Washington.  Should we care? Of course we should care. Why? Because the higher those artificially inflated prices become, the higher premiums insurance companies will charge you and me.. Also because there are some people that don’t have the luxury of insurance and those people must pay the full, artificially inflated price. 

The same holds true for prescription drugs but that is a whole other rant.

October 1st, 2021

 I'm a believer that the world is made up of two kinds of people: "bakers" and "cooks".  I've spent a lifetime trying to figure out which one I am. On the one hand, I'm a perfectionist.  Always have been. In that sense, I'm a baker. Everything has its place and must be measured and precise and, if it's not, your product is bound to flop.  But I'm also petrified of failure and so afraid of flops that I rarely take on baking of any kind. What if I measure wrong? What if I accidentally use baking soda instead of baking powder? With baking, you have one chance to get it right before you put it in the oven and hope for the best. Go big or go home. Do you see the troubled world I live in? I'm a perfectionist that needs to measure everything precisely but instead I stay away from things that need measuring all together because if I mis-measure, I'm bound to flop. So on the other hand, maybe I'm more of a cook. With cooking, you're not so boxed into exact measurements and ingredients. You can improvise on the fly even if your dish is going south. If you make the right adjustments along the way, no one will know you were so close to failure. It's more of a creative process that allows you to mask or hide your failure until you succeed. Like running a marathon or writing a song or making a good clam chowder. Just keep working it until it's right and, all the while, make it l look like you know what you're doing. Yeah, I like that. I'll go with that. I'm a cook. I would like to thank myself for taking the time to help me sort through that. I truly am awesome.

October 10th, 2021

At times, I do let my mind wander away from this surreal circumstance to a lighter place. Don't get me wrong. No amount of lipstick will pretty up this ALS pig but every once in a while, I wander. 

For example, here’s my mind's version of our nightly bedtime routine (starts out R-rated but, alas, ends up a documentary): At around 10:00 PM every evening after my wife and I get our fill of Netflix, I hear the words every warm-blooded, God-fearing man longs to hear, “Come on, time to get you in bed.” There it is. Music to my ears. She slowly rises from her chair and takes my hand in hers with a firm grip. Our palms begin to sweat and we start down the hall, slowly and with purpose. We don't want to rush the moment. As the anticipation builds, the nervous energy causes me to stutter step. She gasps but smiles, probably thinks I was being cute. I am cute but I digress. She tightens her embrace on me. At long last, we arrive and, in the euphoria, she pulls down my pants …. all the way down …. and sparing no emotion in the climactic moment of this pre-bed ritual, it happens: She seats me on the toilet and I begin to pee. Pure relief as a chorus of angels break into song. Almost didn’t make it. Again. But we did. We sigh and quietly celebrate the moment. Another trip to the toilet without any falls, leaks, spills, accidents or drama. A good end to a good day. See? Silver linings.

October 30th, 2021

I don't mean to make light of our new normal but levity helps. My wife is a saint and I'd be lost without her. We try to find levity as much as possible.

Last night, we were watching one of our favorite shows. It's one of those medical shows. The recurring theme in last night’s episode was that every patient was being misdiagnosed in one way or the other. At the end of the show, I innocently said to her,” Maybe I don't have ALS. Could it be they misdiagnosed me?" Without hesitation, she replied, “No, you have ALS.” Ouch. We burst into laughter at the bluntness of her crisp reply and began to banter back and forth, “That’s crazy talk! Of course, you have ALS. Why do you have to doubt everything? Don't worry, it's the right diagnosis. You don't have some junior varsity disease. You made varsity. Relax. Don't be such a pessimist. It's ALS. Now go to sleep.” We were in tears laughing for 10 minutes. We’re still not sure why but didn't ask. It was a moment of levity and we embraced it. 

September 30th, 2021

You place a bubble level on a table and notice the bubble is off center. Therefore, the table is not level, right? Or is the table level but the floor is not? Or is the floor level as well as the table legs to the floor but maybe the tabletop is warped and therefore throwing off the bubble level? Or is the tabletop level but the floorboards are warped? Or is everything level but the bubble level is defective? Or is the bubble level working fine and both the floor and table are level but some change in the barometric pressure is temporarily impacting the bubble level? Or could it be all of the above are somehow making the table look like it’s not level? Why should someone ask all those questions? Maybe because they actually want to fully understand the problem before getting rid of a perfectly good table. 

By the way, this is why my wife finds me annoying at times.

The bigger question is, why wouldn't someone ask? Maybe because they just don't care. Could be the table, could be the floor, or maybe it's the bubble. Who knows? Who cares? Ignorance is bliss. Or maybe figuring out the problem is not worth the time or energy.  Those people are okay with sticking a little cardboard under one of the table legs and all is fine. Or could it be some people are looking for any excuse just to get rid of the old table and, to do so, all they had to see was a crooked bubble? They already scripted the end of the story they wanted to tell but just needed the right prop to get there. The crooked bubble fit their script perfectly and their finished story now read “the bubble on the table was crooked and therefore the table was not level and therefore I got rid of the table.“ There it is. Nice and neat. No further details needed. End of story.

Now, imagine if the table were a person? Maybe a white cop at a BLM protest. Or a black person at the scene of a crime. Or a white person sporting a red hat at a Republican rally. Or a long-haired guy with neck tattoos in the car line outside a school. Is the cop a bad cop? Probably not but maybe. Did the black person commit a crime or is the white person at the rally a racist?  Probably not but maybe. Is that tattoo guy dealing drugs?  Probably not but maybe. But in today’s divided world of shallow sound bites and deep prejudice, there's s no "probably not" or "maybe" anymore. Only “yes”.  Each of those people described is someone else's prop, the perfect crooked bubble. Too many on both sides of the divide have written their scripts. Those are the people that simply want and need to see the crooked bubble because that crooked bubble is the only prop they need to complete their story. The End.