Crushed Butterfly Wings

The weather is bad. It is always bad. No matter what conditions we have, the weather is always bad. I suppose I wouldn't mind the social crutch people lean upon when they choose to discuss weather conditions if it weren't always framed in a negative context. I mean, whatever happened to, "Nice weather we're having!" In the winter, people can't wait for the spring. Once spring hits, it's allergy season. When summer comes, it's too hot. Fall brings a new slew of allergies. And then we're back at winter.

"It's a miserable day today- so overcast and dreary! We need the rain, I know. If only it would start! The air is so heavy! But I suppose if that's the worst thing we have to deal with, then we needn't complain."

As this customer - a "senior," very well put together, nice clothes, nice glasses, nice make-up - carries on about the weather, which in my opinion is a bit nicer than what we've recently experienced, my mind drifts to scenes of a hospital room and a man imprisoned in his own body, completely reliant on others to meet his basic needs. I think of Tim LaFollette.

After the passage of two months and several hundred dollars, I managed to have my driver's license restored. The first place I wanted to go was the hospital to visit Tim, who is recovering from a tracheostomy. And so once I was given the all clear to drive, I hopped in my boyfriend's fabulous Volvo station wagon, having loaned my Toyota to a friend in need, and ever-so-cautiously proceeded to Moses Cone Hospital.

I must say that after the random misfortunes that recently befell me, I was more than a little reluctant to get out on the road. I was hyper aware of the speed limit, the appropriate use of turn signals, of potential collisions with cars at intersections, of the bumper stickers on the back of my boyfriend's car with slogans such as "I'm too poor to vote Republican" and "Doing my part to piss off the religious right" and "Focus on your own damn family." I was certain some right-wing extremist God-fearing cop would pull me over on principle. But I made it to the hospital without incident, just a little stressed.

I fumbled my way to the ICU and Tim's room. Myriad thoughts, worries, fears fell away as soon as I entered his room. Tim's eyes met mine and his face lit up. He was more animated than I'd imagined he'd be. And he was speaking!

Tim's wife Kaylan was there along with Tim's father, Hugh, and Lis Tyroler, friend, comrade-at-arms, Often Awesome Army four star general. Lis and Kaylan said they'd gone out for sandwiches and when they'd returned Tim was talking. No one really expected him to talk this soon after the tracheostomy - if at all. The doctors couldn't explain it. My theory is that Tim just has too much to say. He willed himself to speak.

Lis and Kaylan had to leave for a bit. So I hung out with Tim and reaped the benefits of his newly re-acquired speech. He chattered away somewhat non-stop for a good while. He told me it felt kind of weird, this new phenomenon of not feeling air passing through his nose or mouth. The air keeping him alive now passes through a hole in his neck. A machine does the job his lungs once did. And the increased air flow ultimately made him feel better.

Tim seemed to be in fairly good spirits despite the discomfort of a catheter and an infected toe. And an itchy rash on his scalp and his face.

In the time that I was there, two Bio Technicians arrived to put therapeutic-type boots on Tim's feet. These boots would prevent his foot from dropping, which of course it's bound to do since he has no motor function there. The ultimate bad thing about foot drop is the leg cramps it can create. And the thing about ALS is, despite the muscles' inability to function, the ALS patient can still feel. So leg cramps would just be a form of torture.

Tim is a big guy. Too big for a dinky hospital bed. So when the boots were on, his feet were crammed up against the foot of the bed creating an awkward positioning of his legs and discomfort in his calves. Different strategies were discussed to alleviate this crammed up issue. Ultimately, it was decided to slide Tim up the bed. This was accomplished by lowering the head of the bed so that he was lying completely prone and then pulling the pad underneath him towards the head of the bed, thus sliding his whole body up.

While laying completely flat, Tim was not able to breathe as well. Nor could he talk. I could see the panic discoloring his countenance. But once his head was elevated, everything normalized and he could again speak.

The next challenge came when Tim said he felt like he needed to poop. Lifting Tim off the bed and on to a portable toilet via a crane-like device is challenging enough. But there were now the added obstacles of a catheter and attached tube, an IV, various wires hooked up to monitor Tim's vital signs and the tubes attached to his trach. All of these needed to be negotiated in the process of lifting him. The crane which the hospital has is inferior in a particular way to that in Tim's house. And the hospital potty was much smaller than Tim's. Again, Tim is a large dude. So there were many logistics to consider in the act of positioning Tim to poop.

Once all of the logistics were considered and discussed, the nurse and Tim's dad began the process of lifting him. A giant sling was placed under him and then attached to the crane. But one small detail had been overlooked: Tim's hand was under the sling in such a way so that when it became taut as it lifted Tim's body, the pressure of Tim's own weight was applied to it, creating a painful sensation. In other words, his hand was momentarily crushed by the force of his own weight being lifted by the sling.

This problem was immediately corrected.

Once placed upon the portable potty, Tim's father, Hugh, tried to position the catheter so that the force of Tim's legs being squeezed together by the sling would not create any more pain than was necessary. In frustration and in pain, Tim tried to explain in quiet raspy tones that his knees needed to be elevated in order to better engage the muscles required to push the poop out of his rectum. Lis knelt down in front of him and raised his legs by holding her hands under his feet and lifting up. He indicated that this wasn't working and a couple of other solutions were suggested then tried. But Tim couldn't poop. So he was lifted off the potty and on to the bed, carefully watching all the wires and tubes.

During the whole process of trying to help Tim poop, his voice went away. Something shifted in the apparatus installed in his neck that reduced the amount of air his lungs received and that took away his voice. He mouthed words to his father and to Lis as he looked at me for help interpreting. We finally understood that the respiratory therapist needed to be called. And so she was. She was an impressive lady. Very capable. Very kind. She did her magic and Tim was able to speak again and breathe better.

At this point, Tim had become a bit emotional. He said the catheter was creating a huge pressure inside that made his penis feel like it was on fire. A nurse was called in to help alleviate the discomfort. Tim struggled to express with a voice that faded in and out the pain he was experiencing. The pressure was immense, he said, tears streaming down his face, a face filled with fear and anxiety. He had reached his threshold. And he basically pleaded with the nurse to do something. She seemed unable to do anything. Tim needed to know what was wrong, why he was in such pain. She couldn't tell him. She couldn't manipulate the device in any way to alleviate the pain and she couldn't give him a satisfactory answer. Tim became resigned to the fact that he would have to simply bear this pain. He asked for pain medication and the nurse kindly gave him a shot. His bed was then tilted down to allow the urine to flow more freely along the tube to its receptacle. The theory was that this would alleviate the pressure Tim experienced.

Tim's absolute frustration came crashing in around him. It wasn't simply the ALS - it was all the little things piling up. An infected toe. An itchy scalp and face that he is no longer able to scratch. An uncomfortable sensation due to therapeutic boots. The pain induced by a catheter. The major production of lifting him off the bed and aligning him with a toilet in order to poop and all for nothing. The loss of his voice - after the exhilaration of re-gaining it.

As Tim cried, Hugh stroked his head over and over again. When Tim's nose became snotty, Hugh wiped it. He held a tissue for Tim to blow into. Tim apparently still has the muscle function required to allow him this basic function.

I think I've never seen anything more touching than a father wiping the nose of his adult son, stroking his head in an attempt to comfort him.

Tim had hit the wall of despair. He'd been stoic for long enough. But one too many things had happened today. And he could no longer hold it together. Hugh continued to wipe Tim's nose. Lis suctioned the saliva from his mouth. She stroked his hand. I stroked his leg. Tim closed his eyes and silently sobbed.

I went back to see Tim today. He was in a much better state. His pain had subsided somewhat. His spirits were up. He was again making wise cracks. With a tube jammed up his urethra creating mild to intense discomfort, a nurse manipulates the line so that the flow of urine to its receptacle was most efficient, Tim says "It's like we're siphoning pee." And I marveled at this moment and Tim's ability to laugh at his situation.

Tonight as my boyfriend, Danny, laid on his stomach looking at guitar web sites on his computer, I rested my head on his back in absolute exhaustion. Danny is a uniquely calm and grounded individual. I dissolved into the comfort of his presence. As I laid there, I became aware of the sound of his body breathing. I felt his back rise and fall as his lungs filled with air and then emptied themselves. I marveled at this miraculous functioning. And I thought of Tim, who now has a machine push air in and out of his lungs, who can no longer feel the sensation of air passing from his nose or mouth. I listened to the sound of Danny's body doing what body's are supposed to do. And I felt that this is a gift that we all take for granted: the beating of our hearts, the proper functioning of our lungs, our ability to swallow our own saliva and scratch our own heads. We typically have no problem peeing or pooping. And when we do, the problem is usually alleviated fairly easily.

Our bodies are amazing. What a gift, this thing called life.

One of the saddest things in the world for me to see is a butterfly crushed on the ground, still alive but unable to rise up and color the sky with its beauty. It's delicate and graceful construction is compromised. Its fragile wings have been crushed to pieces, still beautiful but unable to function. This tiny being, this gift of love and light, has been forcibly removed from its role in life and the world too soon. It can no longer grace flowers with its presence. It can no longer delight us in flight. It lies on the ground struggling against all odds to regain a bit of its glorious life.

Yes, the weather is always bad. But there is no need to complain about it.