A Slippery Slope

I likely possess more conveniences than the average quadriplegic. This afternoon I took a good look around our bedroom and realized that everything in the room served as an aid to my condition. I have a 40-inch Samsung LED 120 htz flat screen mounted to the wall so as to pivot in all directions. I sleep in a hospital bed butted up against Amy's hospital bed. I have a tray for my wheelchair. I have a tray that swings over the bed. There is a baby monitor located on a shelf over my head in case I become distressed. My bathroom is replete with grab bars, roll in shower, ADA approved toilet equipped with a Splash 1000 bidet seat that sprays, dries and sanitizes at the push of a button.  

Despite all these conveniences, despite all the help I get, despite the mobility my chair gives me I am trapped. I can only use the remote to the TV under specific circumstances. I cannot enter my bed, sit on the toilet or sit in the shower or anything else without the use of a pivot disc that enables Amy to spin me around as I lean against her shoulder. The effective distance I can reach with my right hand is roughly six inches.  The effective distance I can reach with my left is 0.  I cannot grasp anything. I cannot lift my left arm at all.  My left wrist is forever bent and seems to find itself protecting my boy parts. We have ordered a remote device for my chair so that under certain circumstances Amy can drive me. Often she needs to pull my arm into a position where I can operate the joystick. 

Amy does everything for me. She washes my face, brushes my teeth, brushes my hair, cleans my ears, my nose, showers me, applies deodorant (in jumbo amounts) and attends to plucking wild eyebrows, nose hairs and stray mustache hairs.  I wanted to grow my hair long and let the beard go but she insisted that people would think she did a poor job of taking care of me.  I got back at her by allowing her to cut my beard into a Vandyke, soon to be completed with mustache wax she must apply. I hope to get the wax in my stocking at Christmas.

Back to being trapped. I could give a list of all the things I can no longer do but it would be so long that I would lose my readership halfway through. Instead, I will give you a list of that which I can do, certainly much shorter. 

The following I can do: 
 Next to nothing.

See how easy that was?

A week ago I went to a psychic and healer. After Amy gave her a history of my life, she spent 40 minutes yawning and gesticulating, supposedly healing and reading me. Her conclusion was that I would rather be a surfer but that I felt a responsibility to family and friends that didn't allow time for my real passions.  She also sensed I was sad.  (No shit). Little did she know and less did she read that I did all the fun stuff in my life along with fulfilling my responsibilities.  Anybody who's been reading this post knows that my life was anything but a nose-to-the-grindstone drag. She asked afterwards if I felt anything, any improvements, which I did not, and told her so. She was interested in setting up another appointment (for $190 an hour) but for that kind of money I could buy enough heroin to create my own delusions. 

Someone once said Life is a Cabaret. I have no idea what that means. Actually, I do. If you're wondering, you might as well keep on doing so because I'm not telling you anything more on the subject! 

Someone once said Life is Like a Box of Chocolates, You Never Know What You're Gonna Get. Ain't that the shittin' truth. 

Someone once said Everything Happens for a Reason. They never claimed it would be a good reason.

Someone once said God Works in Mysterious Ways. I think he took the day off when I got ALS. 

Someone once said Life is a Highway.  I think I'm lost.

 

no more coffin, off to turkey

I am far away from the not-so-covert psychedelia that permeated my blog posts of the past. Let me make an effort to shorten the gap. My crystal ball is dull and cloudy, offering no more than gauze covered projections, muddied with the flotsam of an uncertain future.  

In less than a week we will be celebrating our Thanksgiving, bringing to mind previous turkey dinners in Peoria. Those were the best of times. I miss family in Peoria.  I miss cooking for them not only on holidays but every Wednesday night when we celebrated living at the Boettcher feast. 

I wish for everyone reading this to have an exceptional holiday season. When I look at a calendar I see it differently now. I have to ask myself what condition I will be in for future events. I ask myself how many birthdays I might celebrate.

I love food. I love preparing it, experimenting with it, chewing it, swallowing it and savoring the multitudes of flavors and textures. Unfortunately, I am having trouble chewing properly, finding food in my mouth that I cannot direct down my throat. I would guess that at some point, I will need a feeding tube drilled into my gut and stopped with a cork. Feeding me will be a snap. Enjoying the food will be a memory. Maybe the food can be chucked in my mouth and semi-regurgitated, pureed, and poured in my belly. As far as I know ALS does not take away my sense of smell or taste. That could be a good thing or a bad thing. 

Interesting tidbits from a functional quadriplegic: use more deodorant. A large part of keeping odors away from your armpits is motion. If your arms are basically limp at your sides, there is no ventilation with which to disperse any odiferousness. The worst part is that I cannot raise my arms for a smell inspection, instead catching a foulness that squeezed out and wafted toward my nose. In case you are wondering, this applies to all nether regions of my body. Don't get me wrong, I get good showers thanks to Amy.  

Happy Thanksgiving everybody! Wish I could be there running the kitchen. Bye.

Found my Coffin

I mean coughin'. Can't shake it. We have a doctor's visit tomorrow. My blood pressure is a bit high and my oxygen level is a bit low. I wonder if I can get walking pneumonia when I can't walk.  Hope not. 

Rachel will continue this blog post with a synopsis of the advantages to living in Dallas, including everything from the weather to pecan hunting (Amy is a pecan hoarder) to Jeeps and minivans, great eateries, music and family. I need to remind her to boast and post pictures of her Jeep. 

Before I go into another coughing fit let me tell you that I'm still here, nearly functionless yet happy to be with my family. It appears we are hosting Thanksgiving, where Rachel will don my Chef's jacket and help me prepare my unique recipe's for the feast. I've spoken little of my love of cooking, usually dwelling more on my disease than anything else. I'm sick of being sick, I'm tired of being tired, I've worn out my self-pity and I am choosing to provide a spark of positive to enlighten those around me, taking the focus off of myself. 

Go Rachel-
So... when dad said, "Let's post" this isn't quite what I had in mind.  Usually my job as his personal transcriptionist does not entail my personal thought process being conveyed to his adoring public. I know I don't have a snowball's chance in hell to living up to his literary prowess.  However, I am thrilled that he wants to speak of the good things in life.  I wish he would focus on these things for himself rather that for those around him, but it's a good start.  So without further ado, I begin my overview of life as a 'Texan.'
As winter draws near, I'm still a little confused as to how I am still wearing shorts, tank-tops, and driving with the top down on my Jeep.  We've only had a few days that have even felt like a true autumn.  People keep assuring me that it gets cold here, but I'm not sure they understand what cold is. And that's okay.  I think my mom has been comfortable for the first time in her life. The beautiful weather allows us to take advantage of the lake that lies just up the street.  Mom and dad can easily take the boys for a walk to feed the ducks, watch the pelicans, or play in the park that meets the lake.  This really was the perfect spot to settle.  The house is big enough that if they don't feel like going out for a day, it doesn't feel like they've been quarantined in a tiny room (something I, myself, have endured and trust me- it ain't fun!).  But if they are up for getting some fresh air, they can just leave the house without worry or provisions, and do any number of things within walking/rolling distance.  From live music at the bar up the street, to performances and exhibits at the Bath House up the block, even when they don't feel like taking a big trip somewhere, they are entertained.  And I have to say, in addition to the activities available in our neighborhood, I am amazed at the neighbors.  It's like a flashback to the 50's.  Ok, I wasn't around in the 1950's, but I read a lot and have a good imagination.  People care about their neighborhood and their neighbors.  They are open and kind, and have been welcoming since the moment we moved in, even though we are probably the loudest neighbors they've ever had.  They actually stop by and bring us food. Like, "I just made this and thought you would enjoy it" kind of kindness.  And I'm not talking just one particularly kind neighbor.  This has occurred with several neighbors.  I'm telling you right now, we need to up our game!  I need to get dad to look up some amazing recipe's and start returning Tupperware with yummy stuff in them to give back!  I have lived in a lot of places, but not even in my own neighborhood in Peoria, where I lived the majority of my life, did I have such a sense of community.  People wave and smile as you get home from work. They stop and say hi if they are out walking their dogs. It's the way communities should be.  All I can say is, good find on this neighborhood Sarah and Tim!! 

What else was I supposed to talk about....Oh yeah- nuts!  We have a giant pecan tree.  It is situated to the side of our driveway and its limbs sprawl over the house.  I didn't realize that pecans were such a big thing here in Dallas and the surrounding areas, but boy are they!  I see people collecting them from parks and roadsides all the time.  Mom is thrilled that she can go out and collect endless amounts just outside her door.  I'm glad it makes her happy.  The moment she realized that they were actual, edible pecans the crafter wheels started turning.  She stopped or at least lessened her rants about the cars getting pelted with whatever was falling out of the tree, and started looking at the squirrel food like it was gold.  Regardless of the fact that she knows next to nothing about the process, she has decided to collect as many pecans as she can (leaving them for nature would be a waste, you see).  She has big future plans for them.  What she didn't consider, however, is the fact that the phrase "a tough nut to crack" was probably coined in reference to these particular pecans.  The kitchen table is strewn with pecan leftovers.  An entire afternoon's worth of attempted nut cracking resulted in a disappointingly small amount of nutmeat (yes, it's really called nutmeat) that looks more pre-chewed than fresh out of the shell.  But never fear, mom has always been persistent and I'm sure she will find a way to utilize those damned nuts.

The last segment of my long-winded view of Dallas is the vehicle situation at the ole Boettcher plantation. So I wrecked the Jag, or more precisely the gal driving the Jeep Liberty who rear ended me, causing a four car pileup on the highway wrecked the Jag.  Seriously, it's like adding insult to injury, being hit by a Jeep Liberty.  I have been a Jeep fan for a long doggone time, but Liberty's just never made the grade for me.  They feel like Chryslers' version of a Jeep.  A Jeep for teachers and sorority girls, a tame version of a Jeep.  Now, I have the greatest respect for teachers and have many friends who were/are part of sororities.  However I'm speaking stereotypically here.  A stereotypical teacher car doesn't scream, "Outdoorsy, tough, rough and altogether bad ass, and oh, you're stuck in the muck- here I've got a winch and the power to pull you out and tow you home" like a real Jeep does.   Anyway, the Jag has been laid to rest, but never forgotten.  I won't say it has been replaced, but I now have a vehicle to drive that makes me as happy as the Jag made dad.  I'll give you one guess.  Yep, I gots me a Jeep Wrangler.  Awesome.  That's all I have to say about that.  To avoid getting over-emotional, I'm going to move on to mom and dad's new wheels.  October was a big month for vehicle purchases in the Boettcher household.  Our old van worked great for a long time.  A lift was put in it by Mike Leka back in Illinois.  It was a big ole full sized behemoth.  The lift brought dad up the couple of feet until he could drive into the back.  The hard part is that dad's new chair is pretty tall.  He would have to lean over and try to maneuver the chair forward without really seeing where he was going.  He would sit in the back of the van, so high up that his head scraped the ceiling.  I'm just saying, the bumpy roads were more than just a pain in the neck for poor dad.  Plus, mom couldn't talk to him, hand him anything, or really help him at all without pulling over.  All in all, he just outgrew the old van.  Thankfully, they were able to locate a minivan (much more to mom's taste) that was fully decked out.  Not only can you press one button to make the door open and the lift extend, but the van actually kneels, making it easier to board.  But wait, it gets better.  He doesn't have to duck, and doesn't scrape his scalp off trying to get in.  Once in, he gets to pull up front in the passenger seat.  I can't tell you how happy this makes me.  In the other van, dad was so far removed from everything going on- he couldn't see out the windows to know where we were, he couldn't hear our conversations to participate, etc. that he would just withdraw.  Trips were uncomfortable and sometimes painful, so he rarely wanted to go anywhere.  This new van has helped lessen that tendency. Yay!  Although sometimes I am sorry for mom- he always did have a pretty bad backseat driver issue, and that about him hasn't changed at all.  The only downside I can see is that the van is so close to the ground that you can hardly go over a speed hump without it scraping like crazy.  Does anyone know if you can put a lift kit on a minivan?
Ok, I think I've sufficiently babbled.  I hope this gives you a rough picture of what life here in Dallas is like.  I know dad feels it important to bleed some of his misery through this blog, and he feels it important to keep everyone updated on all the progress ALS is making.  Just know that we are in as good of a situation as we could have ever hoped for.  We are lucky to have so many people who care.  Thanks everybody.
Rachel

Hopes and Fears

Obviously, I hope to be able to survive ALS, whether it be through energy healing, spontaneous remission, God or by way of any means that come my way. I hear stories of survival, but they do not bolster my confidence mainly because they are not me. I don't believe that consequences in health or survival are in any way related to a plan, a mystery or fate. Those who are struck down by cancer, ALS, Alzheimer's, Parkinson's, or a million other maladies simply drew the short straw in life. I don't believe any good can come out of suffering and dying. 

So much for my hope paragraph. Now fear. Every morning I wake up after having dreamt, finding myself afflicted, unlike my dreams, where I am whole and functional. It is something like having Alzheimer's, relearning reality a day at a time. 

I have seen some change recently that may or may not have the ultimate desired affect. Spending the weekend in Austin, sitting for 18 hours over 2 days with Master Co, learning about Pranic healing gave me a view of the working concepts of energy healing. Amy is frantically studying the higher levels of such healing in the hopes of helping me. I owe it to her and myself to accept her help. 

As far as the creature comforts of my life are concerned, I do not go wanting. We bought a van that is much more practical for transportation. I can roll into the passenger seat and sit next to Amy. My eye gaze is a pain in the ass but sooner or later I will master it. 

My worst experiences are when I'm in public with people around me that I know. My speech is so poor that often I am not understood. I can't shake hands and I find it awkward at best to convey to someone my disability. Mostly I feel bad for them and their embarrassment. It's difficult to watch Alex play soccer surrounded by healthy walking adults. I take a drug called Nudexta to level my mood since ALS exacerbates normal emotions; it is beginning to fail. 

A last note for today: I am fairly certain my father reads these posts. I know he has access to a phone and I know he has my number. (309-635-1551) 

Dad, feel free to call anytime. I promise not to be working. I need to hear from you.

Briefly- More Later

Welcome to November- It has been 19 days since I last posted (fighting extinction), and a lot has happened since that fateful day. 

Amy is typing this which compels me to speak of her, surely embarrassing her yet giving me reason for my shit eatin' grin. 

This may not be funny but the truth is if it weren't for her I would either be a basket case or an urn dweller.  I kid you not.  My biggest fear, surpassing any related to ALS, is that she would A). Die, B). Get sick, C). Get sick of me, D). Find someone who can walk and talk, (good luck with that) or E). All of the above.  I jest.  She is the best thing that ever happened to me.  You learn of someone's mettle when they're put in a situation that is potentially down hill and untenable.  She rocks.  She also brushes my teeth, puts on my socks and powders my armpits with Chole residuals.  She feeds me onions, sardines, sushi, cheesies and on one occasion herring and wine sauce.  She must really love me.

I have much to say, but for now this is all I have time for.  I miss everyone.
I'll be back soon.