The Diagnosis of Lou Gehrigs: A Day at the Fast Food Place With the Kids
'Cause it's Friday, a day at Burger King with ALS and the kids
Ever the cynic, Colin my UK penpal was. I knew that love was indefinable in mere words, and I told him that. He didn’t believe me. Love couldn't be described with paltry language. I told him that all poems are about love, whether they speak of love for trees, or for animals, or for human beings.
How then- I pondered to Colin, do we define love when mere words seem not to suffice?
I said to him, that in the best of poems- the metaphor comes close. And when relationships with people or with nature or with pets begin to feel like poetry, that is love. Therefore I knew that love existed. I told Colin all of this even though he did not like poetry. So I sent him a Walt Whitman poem to whet his toes:
O you and I! what is it to us what the rest do or think?
What is all else to us? only that we enjoy each other and
exhaust each other if it must be so....
From sex, from the warp and from the woof,...
From the soft sliding of hands over me and thrusting of
fingers through my hair and beard,
From the long sustained kiss upon the mouth or bosom,
From the close pressure that makes me or any man drunk,
fainting with excess.
He was always polite enough to read what I had to say, listen to what I had to tell him when he phoned me up, both before and after Howie, my spouse, got his diagnosis.
The Not-So-Ordinary Day
The diagnosis of ALS (Lou Gehrigs Disease) dumped an arctic slush on us. After hearing of it as possibly being the problem, we two were thrust into a crisp Autumn day, complete with a view of rolling hills surrounding this hospital marked ‘M.D’. What right have you? I thought, to seduce us with your splendor, with your oranges and sienna, such haughty exhibitionism on this day of days, a day gone as flat as a New England postcard. As Howie blew warm smoke into the air that day and fumbled for car keys, he’d said aloud, “I'm only thirty-seven”.
The Enemy- Lou Gehrigs (ALS)
Now we knew we were dealing with ALS for sure. We were all together and that in itself was a rare thing. Our nineteen year old son Jeff sat between his siblings in the back seat. Since Jeff’s girlfriend traded his heart for that kid who sold hot dogs, we saw Jeffrey more. Kerry Annie, lover of classical music, kitties, and motorcycles, sat on one side of her big brother and ten year old Jeremy, our artist/poet/sensitive soul sat on the other. The younger two pestered all week about Burger King. ‘How come we don't go out to eat anymore on Fridays? We used to go out to eat every Friday. We want to go to Burger King on Friday’ They wanted it to be like before. The kids had never known a time when I drove, because I'd never driven. There were times I tried.
Like the school parking lot when Jeff was in grade school. The little ones weren't born yet...He sat in the back seat, frantic, pulling on his ears. We're gonna die! Mommy's driving! We're gonna die! Howie told me to turn the corner... He said “Cut it sharp!” I directed us into a snow bank. What did 'cut it sharp' mean, I’d asked blankly? I knew of so many autistic persons, (met online) who did drive cars, but I knew of many who did not; and their reasons were also mine. There were a lot of things my children had not seen, nor had they heard me do. Swearing, for instance. Not often and not very well. (I’m working on it.)
You could not miss the things that communication impairment takes away if you have never had them, and such was my way. My children would not blink twice if I danced with the family cat Sweet Pea or snipped fringe from our sofa set (named Giddy Moonbeam) to sew onto an elf. I snipped fringe from small pillows, buttons from old clothing, and just about any old toy or cast-off thing was fair game when I got an urge to make an elf. Weren't all mothers elf-makers, dancers with cats, namers of couches, writers, poets, with eyes that were aptly hazel..., you know, like the nuts?
So we found ourselves, like we used to every Friday, just 'cause it was Friday, but some of us were a little taller now-crammed into the little Hyundai. He'd been getting worse. We stopped going inside. He had this idea everyone was staring at him when I had to cut his sausage or if he couldn't tear open his sugar packet. Not going inside was fine with me! As Colin liked to say, “Avoidance is not cowardly! It’s a form of self-preservation!” I'm not advocating avoidance, but for people like my friend and me, sometimes it sounded supreme! And if my husband wanted to eat in the car instead of going inside, that meant no fluorescent lights to hit me in the eyes 'laser-like' when I walked into restaurants. No waitresses I didn't understand. No eye contact. (it could sometimes kill you) No surprises.
Of course the drive-through window posed unique problems for Howie. His left arm was limpy. Some fingers were bent and stuck that way. The hand was weak. The muscle goes away and does not come back. There was tremor. He had to ‘over-reach’ with the right arm to grab the bag at the drive-through window, and then he had to keep his arms steady. Heck, lighting his cigarettes was a two-handed effort. He was especially miserable that Friday. He was even snappy to the dog, who always meant well in his too friendly in-your-face-with-the-squeaky-toy-kind-of-way. Pralphdog, the beagle he bought me for Valentine's Day, didn't even beg at the door to come with us after Howie told him to “Git and lay down and take your stupid toy with you and don't chew anything up while we're gone for Christ's sake ya' piggy chow hound!” (Some days were better than others.)
I pretended like I was that woman on TV sometimes when there was a mess in the kitchen. I crossed my arms, put my hair in a genie-like pony tail, and wiggled my nose and blinked my eyes once and twice. Predictably, this bit did not make little problems or big ones go away. Sometimes though, like when I pretended there was magic in the world, or when I danced with Sweet Pea, the people around me laughed or started to believe, or seemed to believe there might be magic. A little twinge, a minute one, a little chink occurred like a healing. At least that's what laughter felt like to me when I heard it.
Sometimes Howie and I were allowed moments to be mundane! Ruts are the basis for roads. Back before any pavement was set down, the ruts were there, are there, beneath. Sometimes, Howie and I were in our rut; so far in it that we forgot momentarily that doctor who said “...two to five years”.
I didn't want to trudge ahead. I wanted to be stuck RIGHT THERE. I had to say to that doctor, “How sure are you its ALS?”
“96 percent”, the doctor had said. “By December after those last tests we’ll know for sure.”
“Oh, well then we have 4 percent! Good!” I’d said. That day we went out into the parking lot with the news and we were slapped with the beauty of the perfect Autumn day. That building was high on a hill! That hospital had such a picturesque setting; I thought, 'My meager attempts at pointillism do not surpass this display'. But it could've been a piece of paper, that valley view laid out before us, filling me, inspiring me to dash home and paint one more matte page of a Fall scene. But maybe the trees knew more than we did. (I have since forgiven the trees).
Some days we were consumed by the stark reality of the 96th percentile... Other days, like when we watched the MDA telethon, or learned about chromosome 21, the marvelous research, like the unraveling of the DNA genome, we lived in the ever hopeful 4th percentile. When we were blessed enough to be in a RUT, to be MUNDANE, like any couple with three kids and a dog and two cats, and a past and a present; we were simply living. We said, “Shall we pick up crushed gravel to put in around the base of the tree?”
A plan, a project. He could still drive and at the store the discussion turned mundanely to mulch. Yes! How lovely to have those topics in our minds. We would plant bulbs. We would watch shoots rise and break ground in the Spring like anyone else. We were only 36 and 38 after all, and like many couples, we had three kids and a dog and two cats, and a past and a present; we were simply living.
That Friday was not mundane, I regretfully say. He'd been let go at work. For 20 years he’d said, 'Roofing's backbreaking work. I do quality work. I don't drink on the job. Hell, I don't drink. I see these doofuses who break OSHA rules and throw houses together like cardboard. I gotta change my line of work. I got guys working on the crew who don't care about the product they put out. I care what kind of job I do. But what thanks do I get? A bad back? We don't even have our house yet. I gotta get out of this line of work. But it's all I know. And I'm good at it.'
A Day At Burger King, (per routine) Trying To Fake Normal, Just 'Cause It's Friday
He wanted to quit the roofing business, but not because of a disability. Retiring at 38 wasn't in his plans. Before we left for the fast food place, he'd kicked the dog's rawhide toy. It had skidded clear across the unswept hardwood and hit the wall by the poor little guy's dishes. He slammed the bathroom door so hard we all sat crammed four to the couch; looking at each other funny.
Since I had a hard time reading people I was confused. He came out of the little bathroom after some time. What he could have been doing in there so long is anyone's guess, since it was barely big enough to turn around in without bumping yourself. He announced to us spectators, “Let's get this over with. You only want to go to Burger King because you like the toys and you two dam well know it”. We all weren't sure we wanted to get in the car with him after that but we did.
He sputtered all the way to Burger King. “They always forget to put my fry in the bag. They put on cheese when I tell 'em leave it off. And so help me, if yous two act up back there”, he said to the littlest children. And what kind of threat is that, I thought? He'd never laid a hand on them.
We had to pull up behind a long line of cars in the drive through lane. It was dinner rush hour on a Friday...He thumped his left knee against the car door. THUMP! THUMP! It got attention but none of us said anything. Back and forth went his knee between the steering wheel and the car door. I glanced into the backseat at six-foot-one Jeff. Limbs, hot breath, a weird twister game...we were all together! It wasn't even our car. It was my parents' car. We couldn't afford one, and had to borrow this one on a permanent basis.
That was bothering him too. It was really small for this family of ours. I caught the penetrating gaze of my husband's eyes and didn't recognize him. He was tight-lipped and his stare went through my eyes-cold and hard. I copied his knee thumping, and started in to knocking my own knee against my car door, really hard-like. THWACK!
He slowed his thwacking down to a steady impatient roll. He gave me a disinterested sidelong glance but I thought he was interested in what my noise was about. I was only just starting. I wasn't angry. Far from it. I wanted a chink out of him. He looked like a coil on a catapult about ready to fling into space. I wouldn't get him back if he flung into space. If he climbed into a black hole, there was a temptation to climb in with him. If I went in I wasn't coming out. If he'd unwind the coil, a little...he was the nicest guy I'd ever known. For the most part.
Being like me means relearning for every situation. Copying. Maybe acting to get by. Nothing wrong with that. I’m as real as anyone. It means studying what people do so as to better fit because sometimes it is necessary to be in situations where I am required to play a role where I am the square peg for the round hole. Most normal persons are chameleons. I was a chameleon who MANUALLY painted on the color; AFTER I figured out which color it was supposed to be. I started in to acting...I punched my thigh. I was a lunatic I'd seen on TV, a hyperactive, angry, tense person thwack-thwack-thwacking my knee! But I needed more.
The cars hadn't moved much. We were about two cars behind the ordering window. My voice, being naturally soft, lent humor to my novice's attempt at cussing, and my results were achieved easily. I added tight lips and a cold hard stare for good measure! THWACK! went my leg against the door. There were bruises later on the side of my knee! “Those f#$8in' whoremongers!” I said.
“Mom!” said Jeremy. “Did everyone hear Mom? What's wrong with Mom?” he leaned between the front bucket seats to study me, then sat back wide-eyed, stunned, searching Jeff's face for answers. Jeff snickered.
“Bastards making us wait for stinking food-I don't care how good it smells-they're gonna' screw up the order anyhow-always do!” I said. I was making like being real hyper, so I couldn't help but glance at Jeremy who was still searching his older brother's face for clues as to why I'd flipped.
“Jeff, do you hear Mom?” he said.
I swallowed hard; stifled a laugh and started in again. As for Howie, I saw his body go slack. His leg went quiet. Mine didn't. It started going locomotive speed. I decided flailing my arms would be a nice touch. He turned his head to look away from me; and rolled his window all the way up.
“Dirty sons of bitches!” I said.
“Mom!” Jeremy was practically spitting like Sylvester the cat now, the way he did when he was really frustrated. “I don't believe this!”
Kerry sat with unaffectedness, pinching the material on her jeans.
“Let me tell you”, I went on, flailing and thwacking, “if they don't get our order right I'll personally go in there and open a can o’ whoop ass all over their sorry burger flippin' asses! Sons of bitches! Move this f%$*in' line! We're important people! Son of a b#$ch!”
Chink. I heard an escape sound come out of my husband's face, maybe out of his nose. Like he was blowing it. But I looked and he wasn't blowing it. Then another 'blowing the nose' sound.
“Mom you're nuts. Dad, you're laughing”, announced Jeremy.
Howie was laughing, then talking. “I'm not that bad, am I?” he said. Then he said, “Now shut up, will you? We're at the window! Mom IS crazy, guys!”
Howie pulled over near the big dumpster so Kerry might get a chance to see a train go by. The track tracks ran right behind the dumpster. Handy to throw our food bags there when we were through eating. The oversized hamburger shook and squirted nasty stuff when he tried to grasp it. No small feat for the non-disabled! I unwrapped the tacos I brought with me. I did not eat hamburgers or fast food chicken or French fries. He saw me looking at his unsteady grip on the burger. “I'm FINE”, he said.
I did not like the way he said fine.
A train rumbled by and Kerry leaned into the front seat to see. I figured she wasn't too damaged by my swearing; after all it wasn't as if she'd never heard the words before. Her father wasn't a habitual cusser but he sometimes slipped up.
“What's this extra bag?” said one of the boys.
‘Did we order this many fries?” asked Jeff who was rooting in a bag.
“Mommy, am I 'posed to get seven chicken nuggets in my meal?” asked Kerry.
“They left off the cheese. I still don't believe they got it right’, Howie said.
“What's with the extra chicken sandwich? We did not order this many sandwiches. Who wants this?” I asked, holding it in the air between the seats. Someone grabbed it.
“It's even plain!” remarked Jeff.
“Oh, gosh! You don't suppose they heard all my swearing?” I said, covering my mouth with a hand.
He was laughing then; they all were. I had a view of his hand, the lettuce, the fixins' all over his lap. I laughed. I wanted to be in a rut. I damned myself for all the years I'd wasted complaining what a rut we'd been in. Because what a road we had ahead. I had no idea if that road had working streetlamps on it for us to see. If it did, surely we were turning each one on individually as we went along. One by one. What's more, neither of us had any knowledge of streetlamps, of how they worked, or of what was around each bend in the road. We climbed each lamp; by chance got it glowing, shimmied down, and happened along again.
That was our future. Occasionally we hit ruts. For that we gave thanks. We lingered in each rut as long as we could flounder but eventually we had to trudge ahead. I was glad to hear us all together. A little laughing. I was glad it was dark in the car, what with my tear falling down. We tried to go out to eat every Friday, just 'cause it was Friday.
On Valentine's Day, some people holding decorated cardboard boxes stepped out of a small van. From the kitchen window I watched a teenage boy scuffing about like a mad hen. Uh-oh, forgot to pick up Pralph’s poops! I didn't know who they were, adults with children, putting boxes on the porch... Thank heavens they hadn't insisted they come in. A thank you through my doorway sufficed.
The ordinary cardboard boxes, two of them, were made extraordinary not because they were filled with food and candy, but because they were papered with pink, yellow, white, red and green construction paper hearts. I sunk to the scrungy linoleum floor in the kitchen. Just when I thought there were no more reasons to cry, I found another one. I carefully removed every paper heart from the boxes with a kitchen knife to save in my keepsake box. ‘We care about your family!-troop 273’ the messages said in crayon and in glitter and in colored pencils. (Thank you Girl Scouts and Brownies, was the billboard in my head). ‘We love you! God bless your family!’ and similar messages; I read on pieces of paper in frilly, sometimes illegible, always colorful, script. They signed their names too, in little girls' writing. There must've been a hundred hearts. I mean it, literally.
Howie faced the rush of ALS with swords raised. He was courageous, beautiful. When I painted him, I found I could not paint him in the realistic style I once painted in. My paintings of him were from then on done in bold rich color. The patterns were surreal. Certainly our lives had become such. I was lucky enough to marry a poem. If a cynic ever asks you if love exists you can take my word for it.
I took over all aspects of care for him, and this is an example of that. We tried to laugh every day despite the diagnosis.
The Grief Bubble: by Kerry Debay would have been a very useful tool for my youngest daughter, who was only in kindergarten when her father was diagnosed.
There are innumerable ways to say Goodbye when a loved one is terminally ill. This sensitive article may help someone who can't find a salve for the inevitable
- Saying Goodbye: Coping With a Loved One's Terminal Illness
The challenges a family must face when confronted with a terminal diagnosis of a loved one are complex. Here's how to move forward.