On the drive up to my Aunt's house. Nearly forgot our hiking shoes, but those aren't necessary right?
We'll stay with my aunt in Arlington, then drive to meet everybody in Frederick, MD early tomorrow morning. Then we caravan to the trailhead (another two hour drive).
Oh, I got these in the mail yesterday:
Thanks Real Food Blends!!!!!
So I guess I'm ready right? Should I be worried that I was out of breath walking to get the mail this morning?
Got a call from a telemarketer the other day. I really can't stand telemarketers, or salesmen in general. Sorry if that happens to be your profession. Betsy always tells me that it's just somebody trying to make a living. She's always very patient with salespeople. Not me. I'm awful at haggling, and go out of my way to avoid it (thank you, CarMax!!). Whenever someone sells something to me, I always feel like I got suckered into buying it afterward and inwardly seethe that some pushy salesman just took advantage of me. This is off topic though! I obviously have some personal matters to talk to my therapist about, and by 'therapist' I mean whiskey bottle.
Anywho, I get a call, and my phone says it's from Mt Airy, NC, which is a small town where my grandparents live. I answer the phone, thinking it's them, and a strange man starts talking:
Me: "Hello?"
Dude: "Hello, Ma'am, I'm calling from the blah-blah security company. We're installing security systems in your area, and Ma'am, we'd like to put a sign in your yard as part of our marketing campaign. It doesn't mean you're buying a security system for your home; just helps us sell our product."
Me: "Sorry, I'm not interested. Thanks anyway."
Dude (as I'm hanging up): "Ma'am, have you ever had a secu- [click]"
Yeah, that's how I handle telemarketers. Usually hang up much sooner though. Telemarketing is a thankless job and I hope I never have to do it.
There is a Seinfeld episode for all of life's minutiae
Did you catch that Dude kept calling me 'Ma'am' though? I might've listened to him if he didn't mistake me for a girl, but it happens all the time on the phone now. I've become "Mrs. Liebenow" to every telemarketer and every doctor's office.
This is another gift from my radiation treatment. Not sure how familiar you are with how the voice works, but the vocal cords are two membranes stretched on either side of your windpipe (trachea). When you speak, the membranes meet each other as air is forced through the trachea causing them to vibrate and producing sound (I think I got that right). Here's a handy picture illustrating what I just said:
Isn't the human body an amazing instrument?
Because of radiation, my left vocal cord is paralyzed. So, while the right cord stretches out to meet the left, the left cord just sits there. This causes my voice to be softer and higher pitched. The end result is, I sound like a woman on the phone.
This isn't my vocal cords; just something I found online. My vocal cords are MUCH better looking
On top of this, I have a limited jaw opening and my tongue and lips are partly paralyzed, so it's a bit more challenging to make some sounds necessary to enunciate English. I went to a voice therapist downtown for several weeks to try to make myself more clearly understood. I learned a number of tongue and mouth exercises and practiced making certain sounds while adapting for my present limitations. My speech therapist and I learned that when I speak softly, it is easier for me to enunciate words. Unfortunately, this often isn't practical.
For instance, I am the assistant coach of my daughter's soccer team. She had her last game of the Spring season this past Saturday. When two teams of 6-8 year-old girls are out on a field fighting for a ball while parents are cheering and screaming from the sideline, it can be difficult to give them instructions (at that age, they need ALOT of instructions). Our head coach is a bit of a talker. He's the father of five children, four of whom are girls, so he's used to yelling at little girls--that would sound bad taken out of context. Usually, he does enough yelling for the both of us. If he's not at the game, I get Betsy to be my voice and yell at the girls. Unfortunately, at this game the head coach was mostly busy disciplining his teenage daughter. I heard him mutter, "I hate teenagers" several times under his breath (so I can't wait until Grace is one). So, I was left to yell instructions at our team. Me yelling instructions is an exercise in frustration. Even if the girls were ten feet away, they either couldn't hear me or couldn't understand me because unlike the quiet office of my speech therapist, I was on a very noisy soccer field, so my loud speech was far too slurred to be intelligible.
Her team name is the 'Cheesepuffs'. That name strikes fear in the heart of many other six year-olds.
Got hit in the face by the ball. Bled all over the field. Went up and got her participation medal like a CHAMPION
I was so depressed afterward because not only can I not play soccer anymore, I also can't even coach my daughter's team. Betsy immediately told me to stop feeling sorry for myself and said what everyone tells me, "it could be worse; you're lucky you can talk at all." At first, this just pissed me off more. I know it could be worse. Can't I just wallow in self-pity for a while?!? Do I have to be completely happy about what's happened to me because "it could be worse"?
As usual, my wife is right though. I'm lucky to have any voice at all. Some people can only speak at a whisper. Others have to use artificial voice boxes. The last couple years of his life, Eric O'Gorman (another tubie who I frequently mention on this blog) was unable to speak and had to use an app on his smart phone to talk to people. He said he liked to use a woman's voice on the app and see the reactions he got from people.
I have another friend who is a disabled veteran. He is one of the veterans I go horseback riding with every week (http://travelingtubie.blogspot.com/2013/11/veterans-day-parade.html). He has an even tougher time making himself understood. His mother is fiercely protective of his privacy so I'll call him Will. Will was a Marine and did a deployment to Iraq. He safely made it through deployment and was on leave back in the US but got shot in the head while standing in line at a restaurant. Now, he's confined to a wheelchair. He has trouble holding his body upright. He's completely unable to take care of himself. His speech is extremely hard to understand. Sometimes he'll start a thought and pause mid-sentence as he tries to collect himself to finish what he was saying. Often the pause lasts so long the people he's talking to get impatient and either try to finish his sentence for him or pat him on the shoulder and focus on something else. The frustration I feel at being misunderstood is barely a tenth of what Will goes through. His mind is trapped; filled with thoughts that he's unable to express. He doesn't even have the dexterity to type what he's feeling--like I'm doing now.
You know what the craziest thing is though? He can swallow, so his mom constantly tells him to quit complaining. "You're just lucky you don't have a feeding tube like Brian!" she says. Wow. I can imagine how he'd like to respond to that, but I try not to use too much profanity on my blog.
So, yeah, I've got it pretty good. Sure wish I could yell at a bunch of six year-old girls though.
It appears I'll be going through with this hike. At 12:00 PM, on May 30, I'll be hiking with a group of veterans on the Tuscarora Trail, which runs parallel to the Appalachian Trail, until 12:00, May 31. The goal is to go 60 miles in 24 hours.
The view from the starting point. You can almost see the 5-mile point from here...
Every ten miles, a support team will meet us to make sure there aren't any health issues. At that time, we expect to eat, get fluids, and replenish our supply of snacks and water for the next ten mile segment. Julie Bombacino, at RealFoodBlends.com, has been kind enough to pledge some of her meals for me to eat during the hike. The hike organizers estimated that I'll need to eat about 250 calories per hour, so I expect I'll have a RealFoodBlend meal, combined with a Carnation Instant Breakfast, every couple hours. I'll also need to carry plenty of water. Other than food and water, I need to pack a syringe with 2 or 3 backup syringes, a cup to mix my blend with the Instant Breakfast before I push it through my tube, and extra hand-towels to spit into and to clean up messes.
It is also recommended that I bring a 'Power Element'. In their words, this is, "something that you bring that gets you charged - your favorite bandana, paracord bracelet, picture, whatever. Something that you might see at 3am that will give you that extra boost!"
I already have the perfect 'Power Element' permanently attached to my body. I'm talking about my feeding tube. When my legs are tired, when I feel exhausted and want to give up, I will look at my feeding tube to remind myself that I'm doing this for all the amazing people I've met online since I got my tube placed. I'm doing this for children who are afraid to eat in front of their classmates at school, for adults trying to schedule college courses around tube feedings, adults tethered to a feeding pump who are depressed because they can't do normal activities, or people who look at feeding tubes as a 'death sentence'. Feeding tubes are just another obstacle in life, and we humans are designed to adapt and overcome.
I'm with a group of veterans on this hike, eighteen last I counted. I don't know any of them, except Jeff Haugh. I think they all live in the Maryland/D.C. area, since the hike is on the Maryland/Virginia border. I've talked about Jeff before on my blog (Snowmass Part 2). He graduated a year behind me at the Academy, has M.S., and suffered a traumatic brain injury while he was in Iraq. He was the one who first invited me on this hike. We are raising money for Team Racing for Veterans (R4V), which is a charity to help and inspire wounded veterans through fitness. Specifically, Team R4V is giving the money to CrossFit Walter Reed, a non-profit gym where the clients are disabled veterans. You can see a short video about CrossFit Walter Reed here:
I'm a little biased because my sister and brother-in-law own and run a CrossFit gym in Germany (Reebok CrossFit Nuernberg) and my mom competes in the CrossFit warrior games (http://games.crossfit.com/article/oma-and-open), but I think CrossFit is an awesome way to get in shape. When you do a Workout of the Day (WOD) in a Crossfit box you all do it together. Everyone cheers for each other, no matter how many 'reps' of a given exercise you're able to accomplish. When wounded veterans are cheered on by their peers at CrossFit Walter Reed, they get inspired. They stop focusing on the things they can't do and start believing in what they can.
So, in addition to taking this hike to prove to myself that I can do it despite my paralysis and my feeding tube, I'm walking 60 miles to raise money so wounded veterans can also see their injuries in a whole new light. If you're inspired by this cause, and you have money to spare, please donate at my fundraising page: https://www.crowdrise.com/1VTforR4V/fundraiser/bliebenow. Our team has a goal of $20,000 and they've only got about $8,000 so any amount you could give would be very much appreciated!
I'll be sure to update my blog after the hike to let everyone know how far I got, even if I'm unable to make it out of the parking lot.
Since it's nearly Mother's Day, I thought I'd write a few words about my mom and how thankful I am for her existence. I'm not sure how familiar you are with childbirth. I won't go into any details, but I watched a video in 9th grade health class that scared the crap out of me. I must acknowledge that my mom did *that* and I wouldn't be here if she hadn't. Mom was one of the first women to graduate from the University of Michigan with an aerospace engineering degree in the 60s. She wanted to use it to be an astronaut but her kids got in the way, so THANKS A LOT, ME!!!
With her engineering background, you can probably surmise that my mom's favorite subject was math. Mom loved to quiz me on math problems. When I was
in kindergarten, she had me memorize the answers to long division
problems then repeat them back to high school students she was tutoring
(they all thought I was a child prodigy). She constantly pushed me to do better in school. She insisted on checking over my homework, and she was adept at laying down the guilt trip if I came home with a 'B' on my report card. She convinced my middle school to let me skip a grade in math.
When I was in 10th grade, mom got me to apply to a free public boarding school, the North Carolina School of Science and Math (NCSSM). NCSSM is one of the best high schools in the country. I didn't get stellar grades while I was there, but just the fact that I graduated got me an appointment to the Air Force Academy's Prep School and, in turn, into the Academy a year later. The US military has excellent health insurance, so when I got cancer in 2003, I never had to worry about medical bills, even while dealing with radiation damage after cancer. I was retired from the Air Force in 2006 at 100% disability. This allowed me to keep my health insurance while getting enough money from the Veterans Administration every month to live quite comfortably. The point of this is, if my mom hadn't pushed me to excel at math and apply to NCSSM, I wouldn't have been accepted into the Academy. So, I may not have entered the Air Force. So, when I got cancer, I may not have been able to pay the medical bills. With the aftereffects of cancer treatment, Betsy and I would be scrambling to find money to pay for all the different doctors I've seen. Come to think of it, I would never have met Betsy if I hadn't gone into the Air Force and subsequently gotten stationed in Florida, where we met.
So, I owe every great thing that's ever happened to me to my mother.
My mom lost her job as a project engineer in Richmond during the economic downturn. For more than 18 months, she was unsuccessful at finding a job because no one wanted to hire a 60+ year-old woman, even one with an engineering degree from the University of Michigan. Finally, she gave up searching for work and moved from her home in Virginia to Nuremberg, Germany, to take care of my sister's two kids. She tries to get back to the U.S. to visit family once a year so she was in town for a week last month.
Did I mention my mom competes in the Crossfit games? She and my sister make me look like a slug.
My mom's visit provided the perfect excuse to go out for a dinner a few times. The first night of her week in Tennessee, we chose to eat at The Outback.
I've always liked eating at The Outback Steakhouse, especially during that Australian phase of my life where I drank Foster's beer every day, said stuff like "no worries, mate" with a horrible accent, and believed that The Outback had genuine Australian cuisine. Lately, I like The Outback because when you order a glass of wine, they give you a huge carafe that is quite handy for pouring directly into my feeding tube.
"No matter how much I pour in, it never fills up!! Bring another carafe!"
Is it odd that when they saw my mom with me, they kept bringing wine?
They have an excellent Gluten-free menu you can look at if you click here. I got the Alice Springs chicken--incidentally one of my favorite meals when I could swallow--with a side of vegetables. They also offered a gluten-free version of their Chocolate Thunder from Down Under (get your mind out of the gutter). This dessert intrigued me, so I told them to throw it in with my chicken. What I didn't realize is that the Thunder from Down Under is HUGE. I ate so much that night I could barely walk out to the car for the drive home.
This highlights, once again, the benefit of eating real food through the feeding tube rather than formula. With real food, I get the normal feeling of having a full belly just like I used to get after Thanksgiving dinner. Yet my body can only handle 8 ounces of formula before nausea forces me to stop eating.
So, all in all, a good trip from my mom. Wish she and my sister lived closer!
