Dread

Wake up look around memorize what you see it may be gone tomorrow everything changes. Someday there will be nothing but what is remembered there may be no-one to remember it.

-- Michael Dransfield

Last night I dreamed I was attending a business meeting. The type of ridiculous time-waster I used to be forced to participate in years ago when I worked at a real office with real people. We sat around a glass table on a deck atop a skyscraper. We were surrounded by thick railings and glossy plants in chunky pots. As I chewed on the end of my pen and went to my own happy daydream-place, I glanced down at the streets below. I saw water gush up the stairs from the entrance of the subway. The thick, forceful column pushed a handful of dark silhouettes of what I finally determined were people into the air before slamming them down onto the sidewalk. After that, they were still and looked like soggy, crushed ants. I slowly stopped my chewing, removed the pen from my mouth, and realized I heard faint screams. I looked up into the sky and saw giant chunks of rock falling through the atmosphere, leaving lazy trails of wispy, toxic smoke. I looked at the people around me to gauge their reactions and determine my own socially acceptable response. They quickly gathered their papers and belongings. They were going for the door to the inside the building. I was suddenly aware of the lovely warmth of the sunlight on the skin of my arms and face and the summer breeze that ruffled my hair.

I remained seated, attempted to accept my fate, and said, "I think I'll stay here. It would be a shame to die inside on such a beautiful day."

I wanted to see what was taking place, even though I was doomed, anyway. I was left alone.

Everything went blurry for a while, as dreams tend to do. Because I voiced my preferences aloud (always a mistake in my case), I soon found myself trapped inside the confines of the glassy building. There were tiny, white garlands of lights strung around poles for Christmas, and people sprinted in every direction. I thought how strange it was that I couldn't find the familiar block lettering of the required exit signs. I knew in my heart that I would never make it outside. I wondered what I would do when the power went out. It really bothered me that I couldn't see what was coming for me. That I would die in the ruins of a dark building alone.

Then I woke up.

My heart flailed inside my rib cage, and I marveled at the sharp feeling of adrenaline surging through my veins and arteries while the rest of my body was almost paralyzed and half asleep. That alone has to be hard on a person. I could hear my pulse pounding in my ears.

I think I know why I had that dream. Partly, anyway.

I hate the unknown. It's also difficult watching somebody die, like I fear my friend is. The more time that passes, chances are his diagnosis of ALS is correct. I'm still trying to grip firmly onto my previous toasty-warm cloak of denial. We had a really good day together this week, and it was easy to forget that his body is giving out. I made him chicken enchilada soup, and he even ate a sandwich I prepared without a problem. He rarely eats anymore because it all goes down into his lungs and causes infection, as his throat no longer functions the way it should. However, if you ignore the limp and the cough, it's pretty darn easy to forget he's sick at all. Yesterday, though, he told me that he was speaking in a meeting and had to excuse himself. His lungs are beginning to fail at a frightening rate. Each week seems to bring another subtle change. Changes I usually choose to ignore or have trouble visualizing at all. He is consulting another doctor in another state, but there doesn't seem to be much anyone can do for him. He lives on nebulizers, pills, and physical therapy, but nothing seems to slow the course of this disease.

There are still good days. Days during which I feel as if we are sitting out in the sunshine, telling stupid jokes and laughing ourselves silly. Just like we used to do when our lives were so different years ago. Back in the days before we thought about things like developmental disabilities or neurodegenerative disease. I don't like talking about his illness, especially with him. Most of the time I just think of other things. Sometimes we talk about him finding a way to send me messages when he's gone.

My tree is decorated, and I bake cookies. I go to parties with Brian. I love the fluffy snow falling from the sky like powdered sugar. It's strange doing little things and pretending that everything is fine when I know he is suffering out there somewhere on his own. But I do. I do all that I can afford emotionally within the limits of practicality, but I have a life to live here and other people to care for, even though I'm hurting deep inside at various levels all of the time. I hate that my life is going to change yet again in the near future. I hate change. I know what's coming. I don't know how or when, but it's out there. I just can't see it yet.

And it's leaving a smoky trail as it searches for its target.

(Update: He is in the hospital this evening with yet another lung infection.)

The Agony of D'Feet

My friend previously asked me to do the ALS walk, and I quickly agreed. Because his disease is not public knowledge, I keep his name from my posts. At his suggestion, I named our team something random and ended up choosing something based on a private joke between the two of us.

We arrived at the park where it began, and Gloria Estafan music bubbled loudly from two speakers held by metal stands. We checked in and were provided shirts. I went behind a bush and peeled off the shirt I wore, replacing it with my new one. We then walked to a quiet spot by the river within earshot of the festivities and began one of our usual conversations peppered with horribly dark humor other people would likely find offensive and tried to relax. When it was time to take team photos, we remained steeped in our anonymous, private spot and continued to talk until the walk began. When my friend spotted bobbing, colorful helium balloons, he jokingly complained he didn't receive a "f*cking balloon." I quickly offered to approach a volunteer and ask for just that. And right f*cking now. He laughed at the overly sweet tone I used to express such profanity.

The Walk to D'Feet ALS is not a race. There are no numbers to pin to your T-shirt or striated, muscular legs bouncing nervously about at the beginning of the thing ready to lead the way. This is because ALS takes your ability to ambulate on your own completely from you. If you can walk at all, you are ahead of the game. There were just barely enough people to classify us all as a crowd. The T-shirt I wore said, "Walk to Defeat ALS. Because you can." An ominous string of brand new, empty wheelchairs on display lined the starting area. I tried not to look at them. I made the assumption that most of the people walking were friends or family of those who had passed away from ALS. Many wore stickers that stated they were walking in memory of someone. I only saw a few men in motorized wheelchairs, and they zipped by us with gusto. It was obviously a struggle for one man to speak. Another man sagged forward in his seat, surrounded by loved ones smiling and laughing. My friend noted that he did not see many people with oxygen tanks and ventilators to indicate they have the type that he himself has been stricken with (bulbar onset). I nodded and then glumly noted I saw nobody at all fitting that description.

Not a good sign.

It was strange attending another fundraiser for anything other than WS. Apparently, George W. Bush recently approved a patient registry for those with ALS, which is a step in the right direction. I know what it's like to grapple with something that has no cure, but I do not know what it is like to eventually forfeit the last of your hope and die from it. Amazingly, my friend still has hope most days, despite his slowly progressive symptoms. If anyone can beat this thing, he can. After all, he is the most bullheaded, stubborn bloke I know. He tells me constantly that he is a "gamer." Because of this, it is still really difficult for me to see anything but his strength. He also hides his pain from me. I am largely blind to his physical difficulties, so when they are visible to me, I am positively shocked. As the weeks go by, however, I find myself less and less shocked by the frequent trips to the hospital and the breathing treatments.

We began the walk, and it became clearly apparent I had consumed way too much caffeine. I was very edgy and felt like shooting someone. I was soon able to relax and began to enjoy the sights along the river. We passed beautiful girls clad in Lycra exercising and families lounging at metal tables enjoying juicy hamburgers at a local restaurant. We provided a running commentary of it all, as we usually do. We caught the scent of food sizzling on grills and seafood smoking and groaned obscenely. He apologized for needing to stop halfway at a park shelter to rest. He seemed to be in thinly-veiled agony, fighting one leg that didn't want to cooperate, but he continued anyway, limping to various degrees along the trail. Despite this, we were not last. One more team finished behind us, and we found this perfectly acceptable.

We finished the walk, quietly exited the park, and began our search for food, which my friend now has trouble enjoying because of swallowing and resultant lung infection issues, for which he is on IV antibiotics now. He devoured a respectable amount of food, anyway. To my amusement, the bartender was politely warned that although I definitely looked the least frightening of the two of us, I was horribly dangerous without food in front of me. He laughed at this and hurried to get our plates, which came to us hot enough to raise blisters on our fingertips. We dined on shrimp, chicken, and crab in front of a football game playing out on the screen above us. I savored the way my glass of chilled pinot gris perspired in my palm.

And I tried not to think about next year's walk.

First Day

Erik started school this week. He was less than excited to get ready to go the first day but seemed completely at home in the classroom when we arrived. He marched in like he owned the place, which was a first. Although the teachers, therapists, and bus drivers seem to adore all of the children Erik goes to school with, it has become apparent over the last year that he may be receiving more than a little bit of extra special attention. Sometimes I suspect he is on the verge of obtaining true celebrity status. I watched my kid work each adult by raising his voice slightly to an additionally adorable octave, gently reaching up to squeeze their hands, and tilting his head to achieve the most effective angle of cuteness as he greeted everyone. By the time the new bus driver came up the driveway, she was giggling and gushing over him. She admitted that she had been gazing at him in the mirror above her head during the ride and had informed him he was very cute. Today I baked a plate of cranberry-orange muffins for her and included one of the cards I carry in my purse about Williams syndrome. This is my standard awareness-raising technique. It's just impossible to go wrong with baked goods/griddled items of any sort. I plan on taking over the world by doling out one cookie at a time.

I spent the afternoon baking a butternut squash and transforming it into a spicy, Asian-inspired soup I ran through my blender in batches for my friend with ALS. I purchased extra food storage containers and a cookbook written for people with dysphagia (swallowing and chewing problems) so I could freeze him meals. He is slowly starving to death and refuses a feeding tube, at least for now. When I can't cook food for him anymore, I won't know what to do. While the squash was cooling, Erik suggested we go for a ride in the Jeep Wrangler. I haven't driven it for years but agreed to fire it up, much to Erik's surprise. I don't think he knew his mama could do that. We circled the property three times with our hair blowing in the breeze and sunshine on our faces. Each time we came to our driveway, Erik would say, "Again, Mama!"

I have pondered taking a break from writing since my personal life has taken a difficult turn and I have begun to pour any extra energy into survival, but I prefer to keep things open here. I really miss writing as often as I did and hope I will find some time to sit down now that school is back in session. I'll be back, although it may be a few days between posts at times.

For now, though, I am preparing for a child-free weekend of screaming my lungs out at an Oregon State game and a trip to the casino with Brian. I hope to experience some blogworthy adventures and hope to return refreshed.

Alone Time

I had the afternoon to myself today. First, I stopped in to a dark, windowless bar the size of my living room I discovered recently to tune the world out, play video slots, and have a whiskey with a handful of the geriatric set having lunch. The girl tending bar remembered me from the single time I had hidden there one afternoon not long ago, and she made a nice fuss over me, patting my shoulder and making sure I was comfortable. The busy, well-lit places I used to go every couple of weeks have recently closed their doors. Times are tight. Despite the troubled economy, I won $1.10 after playing for about an hour, cashed in, and said my goodbyes. I then escaped out of the heavy, halfway hidden wooden door back out into the humid afternoon and drove to a used bookstore I have never stopped in but have wanted to for four years now. I made myself at home in the stacks and selected a true crime novel about a criminal profiler, a Stephen King book of short stories I never heard of, and some true stories about the American West by Zane Grey. I always wanted to read Zane Grey but never have. With the male half of my personality satisfied, I applied lipstick and declared it official girlie-girl time. I headed next to the ugly, bustling little strip mall to visit the salon and slipped cash to the merciless woman half my size who takes me to the back room and rips off most of my eyebrows. She displayed the muslin strips covered in my former facial hair like trophies and shook her head. Despite her stern facade, I laughed and told her I had missed her terribly.

It was glorious time well spent.

While I did this, I tried not to think about my friend lying inside an MRI machine imaging his lungs, which turned out to contain food and debris he can no longer seem to funnel down the correct tube because of his ALS. He has a resultant infection and needs to be on IV antibiotics, as the normal ones do not seem to have much effect anymore. He seems to be constantly battling lung infections now. I now wait for a phone call to see whether he is hospitalized or not.

Life is so strange. But I'm ready to face it again after just a few hours to myself.

Bring Out Yer Dead

We're still trying to shake whatever infected our household. I feel much more energetic (conscious), even though I sound like a paper bag full of snot. I'm okay with that as long as I can function and don't feel like passing out every five minutes. Erik started antibiotics. His sinus infection has cleared, but yesterday he seemed sick again, and I think perhaps the underlying root of all of this has been a virus, which, unfortunately, we simply need to endure. I have been ill now for two weeks. I dropped him off at Kathy's house yesterday so I could visit the clinic for another new, unexpected medical concern that is threatening to ruin my summer, and I hope that Erik didn't get her kids sick. I think we are all falling apart.

Girls' camping weekend was canceled this weekend. Bummer. I wouldn't have been able to go, anyway. Who wants to spend the weekend in a metal box with a girl hacking up her lungs? Nobody, that's who. Cigars are out of the question. I was invited to camp with margaritas in Nadine's yard Saturday night instead, which I might do, and was asked to a girls' lunch Sunday afternoon at the little hippie brewery downtown, where their stuffed burgers are simply divine. Tonight I dine with my friend with ALS, who is not doing well at all. Hopefully, I can get him to eat. Maybe eating would do me some good as well.

Infection Part Two

I thought I was getting better, but I'm not. I will not see a doctor, at least for now, but if there hasn't been a dramatic change in Erik's condition today, we will trek to the pharmacy to pick up his medicine. Last night he was better but still obviously fighting an infection in his sinuses that doesn't seem to want to clear.

My friend with ALS is having trouble breathing. He spent two evenings at the ER last week and all of Saturday night in a hospital bed. He no longer sleeps much and goes days at a time without sleeping at all. It sounds like they intubated him for the first time Saturday, although, thankfully, it was only temporary at this point.

Last night I dreamed I was in the back seat of a small car, zooming along miles of nearly deserted parkway. There was not much to look at. Just an occasional strip mall and a couple overpasses clogged with sluggish traffic above us. I was being driven to the airport, but it was still miles away, and my flight was likely already boarding. I was trying to chat with the other passengers in the car and sound upbeat, but I wondered if I make it in time. When I glanced out the window again, rows of poplar trees lined the road, their long branches defying gravity and stretching up to the sky. Their leaves were the colors of autumn, and as the wind whipped the branches of the trees about, the leaves let go, came down in a bright shower, and were briskly whisked across the pavement in front of us. I felt my muscles relax a bit and the panic ebb away. There was simply nothing I could do from here. I would never make it on time.

Oh The Humanity

The hot air balloon festival took place across town this weekend. This morning I opened the blinds and saw three of them drifting above the horizon. Erik pointed at each one and counted them for me. Knowing they always make their way on the breeze towards the desert beyond our house, I took Erik out onto the back porch and sat him in my lap while I enjoyed my first cup of coffee. As they rose into the sky, the silence was broken only by the distant sound of their powerful burners occasionally firing. From past experience, I knew that once they drifted over the house, I would be able to eavesdrop on the conversations the passengers were having. It is strange hearing words fall from a silent, blue sky like that. Soon the cool morning air bit me through my bathrobe, and I picked Erik up and carried him back into the house, telling him all I knew about hot air balloons.

A few minutes later, we heard a loud whoosh. Erik looked at me, alarmed. I stared back at him and listened. It stopped and then started again about three times, getting louder and louder each time. I knew they were closing in on us but realized the sound of the burners was never quite so loud before. I grabbed Erik and sprinted for the front door. We made it outside onto the front porch just in time to see the basket under a huge, red balloon come to rest next to the house. Cars and trucks began clogging the road edging our property and stopped to allow the people riding in them to gaze at the bizarre spectacle. A truck towing a large trailer with a picture of a similar balloon painted on the side came barreling down the other side of our property through the thickening confusion.

The people standing inside the basket looked at me, laughed, and said, "Good morning!"

Erik enthusiastically returned their greetings, and I realized I was still wearing only a bathrobe and fuzzy socks. Oh well. After we watched them wrestle with the thing in the breeze for a while, I went back inside and opened the blinds covering the bay window over the tub in the bathroom. By then, the crowd standing there had swelled to about 40 to 50 people. Gracie-Cat took one look at the giant orb and the people around it before her tail puffed to four times its normal size, and she slithered away with her stomach nearly touching the ground to hide under the bed. It seemed that the wind was such they could not take the balloon down without draping it over our house, so the burner fired, and up they went again. I looked upwards through the window and could see through the round hole in the bottom of the balloon. The basket went up after it and disappeared out of sight over us all.

How exciting is that?

I sat and finished the book on the daughter with WS today. It's tough knowing what to say about it, especially since the author could very well be reading this. I admit that it is definitely not the heartwarming story I was hoping for. The back reads, "Michelle’s story encourages every reader to overcome the overwhelming with the help of God to face Another Day, Another Challenge." I couldn't help but feel less than encouraged by what I read. While I admire this mother to no end and think she deserves every award known to man for her courage, persistence, and faith, I felt nothing but exhausted when I closed the book for the last time. It chronicles struggle after struggle, most of which are absolutely horrifying and only repeat themselves over and over, worsening in intensity. The book itself seems to end in the middle of it all during the most horrible scenario without a resolution in sight. If you are looking for a tidy ending, you won't get one here. I suppose there is never a tidy ending to anything. Life's pretty messy. She did her best to express her faith that God would provide strength and the tools to care for her daughter with WS in the end, but it was really disturbing to read. I'm extremely grateful I read it, would recommend it, and am proud to have it in my library but would definitely not recommend it to the newbies on this journey. In the end, I know that every child, WS or not, is different, and the challenges I have with Erik won't be the same as this family's. While I see similarities in our stories, I had to remind myself that she was telling her own personal story, not mine, and that the future is still very unknown for our family. The most important thing I took from it is how to fight for my child in the outside world and get people to listen. Even the ones who don't want to. I will never forget Michelle or her family and wish them nothing but happiness in the future. I hope that she somehow shares an update on their lives soon.

I spent the last part of my day with a couple friends on the front porch sipping cold beer and watching our kids play. I shook off the heartache I had from reading the book and soaked up some sunshine for a while. My friend with ALS stopped by to stoop down and play with the kids, making us laugh in the process, until his face and body betrayed him, silently communicating to me how much agony he was experiencing. He hugged us and left, leaving behind blissfully happy children and me fighting back tears.

I guess life is pretty darn messy.

Shoot Me

I knew lifting Erik was slowly taking a toll on my poor back. Last week I felt a strange pain begin in my right buttock/hip, as if I had pulled something. Now it seems I have worsening sciatic nerve pain that occasionally doubles me over. It feels like a hornet is constantly stinging me in the ass. From what I have read, 90% of the time, watchful waiting is the best cure for this type of pain. I want to crawl to a chiropractor/magician/physician/witch doctor/mechanic/funeral director and beg for mercy, but I want to give it at least a week. What sucks is that I am afraid of losing ground in terms of my fitness goals. Luckily, being this dedicated for almost an entire year, writing nearly everything I eat down and setting aside 30 to 60 minutes a day to sweat like a pig, means my chances of returning to flabiness are greatly reduced. Thirty-five pounds ago, I was just so horribly miserable and don't want to go there again. Ever. I was hiding. Plus, I was finally feeling fabulous before this occurred. I climbed up on the treadmill today, and I did okay with that. Aerobics are not an option for me at the moment. The trouble is that the treadmill is harder to cram into my day, as Erik can't be present when I am on it. Last night I was in so much pain that my eyes watered. Today is slightly better. Either that, or I'm getting used to it. I saw a lady gyrating on an Aleve commercial today, and I felt like hucking a tennis shoe through the television screen.

I watched my friend with ALS hold Erik today. His disease is progressing very rapidly. His right lung is beginning to deteriorate, and he is in agony from periodic muscle spasms. I watched him endure one today, and his shirt became soaked in sweat, although he tried to put on a very brave face for me. After it was over, Erik giggled in his arms, and everything seemed perfect again. Death is a funny thing when you know it is coming. It puts strain on relationships in such an odd way. You would think the petty stuff would evaporate, but the little things suddenly seem unbearable, like coarse grit in the bottom of your shoe. It just feels different than I expected it would. My only hope is that when he goes, we won't hate each other. I guess I expected things to be perfect before we said goodbye, and that isn't very realistic after all. I should know that nothing is perfect. Ever. Even knowing this, I seem to always shoot for perfect. That's just how I am, even in my imperfect little world. Go figure.

Eraser

I desperately want to write, but words fail me yet again.

I was blind to the way his strong hands began to tremble as he reached for things. Deaf to the way he insisted his words were beginning to run at the edges as they came off his tongue. I shrugged and insisted that he sounded the same as ever to me. I watched him start suffering from excruciating muscle pain and ignored the grimaces he tried to hide, as I knew they would pass within a matter of moments if I were patient and politely pretended not to notice. Over the past few months, I trivialized the strange, ominous cough that crept into his core and began a daily assault on the the natural rise and fall of his chest.

I just ignored it all. I simply refused to acknowledge the strange, dark shadow in his presence for months. Some friend I am.

However, ignorance is a luxury I no longer possess now that I know its name. It has made itself officially known after a cruel, rude introduction, and the people who speak for it have made a grim promise that it will erase my friend from my world, perhaps within a matter of months, as there is no known cure. The same people sent him back out into the world alone with this shadow trailing behind him and told him to live as he did before. He isn't even 40 years old. I can't imagine watching him die slowly in front of my eyes. My brain throbs. My heart is split in two yet again.

No. No. No.

I wish to God I didn't see it. That I had never heard it. I want to hide my face behind my hands and periodically peek at it from behind my fingers like a child, hoping that it will disappear.

I wish to God I didn't know its name.

But I do.

Lou Gehrig's disease.