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MAY 25
La Salle, IL - Omaha, NE
An early wake up call for me helped to ge us all off on time. I messed
up Kyle's oatmeal, so he started off his day with only a small cup of
orange juice. Peru was
halfway through the state of Illinois so we did not have far to travel
to before we hit the Iowa stateline.
As we departed the
hotel, we thanked the manager Jean Deegan for the complimentary stay,
and she purchased a baseball for our van window.
We reached Omaha about 8:30 pm. We
had no idea where we were supposed to go.
Taking an exit that seemed pretty well passed the city, we asked
the man at the Philip's 66 how to get to the Courtyard Downtown.
He kindly showed me a map, detailing the route we need to take,
and even warned of the construction we would come against near the
hotel. We headed back,
missed our turn off, and had to backtrack the exact same way again.
We got downtown and immediately spotted the detour signs for 10th
street, our destination. Well,
we detoured in the wrong direction, but we found the zoo.
It was closed. Once again, another stop at a Philip's 66 for directions,
another drinking cup and a fill-up.
That's where I met Don. I
said to him, "I've got a question for you." and he replied,
"First, I've got a question for you.
What's PALS Across America?"
I love this guy! I
explained about our trip, our mission and our baseballs.
He wanted one. I ran
out to the van to retrieve one, and when I returned he said he needed
four more. God bless this
guy. He did give us
directions to the hotel, but it still didn't help.
Within
10 minutes we were in a pretty dark secluded area and pretty sure we
were nowhere near the Courtyard Marriott.
We spotted a police car and pulled over to ask him directions.
This time we got exact instructions, numbers of lights, names of
streets, and shortly we were pulling into the hotel parking lot.
It was 10 pm by the time we got unloaded in the room. I began fixing Kyle's dinner immediately, while Sarah called
Pizza Hut for delivery. We
pack a kind of portable kitchen with us, just to make sure we are able
to prepare a meal for Kyle. This
consists of a mini-food processor, a portable electric burner, a small
saucepan, a small frying pan, a cutting board, chopping knife and a few
eating and cooking utensils. It
has served us very well. Unfortunately,
the new cup did not.
Check out was at noon so we were all looking forward to a sleeping in
and enjoying a leisurely day at the SAC museum.
MAY 26
OMAHA/Lincoln, NE
SAC Museum
This was one of the few days we had dedicated to sightseeing.
Kyle had chosen Omaha because of the Strategic Air Command
Museum.
As soon as we entered the museum, Kyle made a bee-line for the gift
shop. After stocking up
with tons of souvenirs (and another cup to try out), we proceeded to the
planes.
Thankfully, Sarah was made the official photographer, and she snapped
shots of every exhibit, which made Kyle a very happy camper. I couldn’t help comparing the museum to Wright-Patterson,
but it was fledgling and all and all a very good museum. One thing I really liked was the aircraft were displayed “as
is”, with all their glorious battle scars. I thought that very
appropriate.
We ate out
this evening at Applebee’s and made friends with our waiter, Andrew,
who coerced his fellow servers into supporting our patient services
fundraising. As we left the
restaurant, the hostess came hurrying up to us, and gave me a big hug.
She had a dear friend whose husband had been diagnosed with ALS,
and she herself was a caregiver for her disabled husband.
Kyle and I were both very touched.
The cup from the SAC museum didn’t work.
MAY 27
Lincoln, NE - Cheyenne, WY
Nebraska was beautiful country. I
loved the rolling hills of black earth striped with brilliant green rows
of young corn stalks. And
the bluffs were a phenomenon I had not yet experienced.
Sarah was drove the entire day, and shortly after we crossed the Wyoming
border, the highway patrol pulled her over.
She had only been 10 miles over the speed limit, if that, but the
ol’ poopy trooper wasn’t going to budge on the ticket. He wouldn’t even purchase a baseball!
Again the
hotel was not quite so easy to find, but our first stop for directions,
got us there immediately. The
Fairfield Inn was right across from a Chili’s, so Sarah and I went
over and placed a to go order, knowing Kyle would be able to eat the
chili. Well, he would’ve
that is if they had remembered to put it in with our order.
Fortunately, I had plenty of stock, and Kyle had soup and salad instead.
It was a long day, and we had another long haul through the state
of Wyoming facing us in the morning, so we hit the hay.
MAY 28
Cheyenne, WY - Salt Lake City, UT
Wyoming was mostly ranches and mountains, with a few little oil rigs
scattered here and there, and a Sinclair refinery.
I didn’t know that little green dinosaur was still in
existence. I recalled
having one of those inflatable dinosaurs when I was a kid.
I bought a postcard of a place we weren’t going. I thought it would be hilarious to send postcards to my
friends with a note that said “We Weren’t Here”.
Crossing from Wyoming to Utah was like night and day. Utah, the mountains jutted right up in front of you.
The landscape was so abruptly beautiful.
We were lucky enough to get to Salt Lake City area before dark,
and at this point we had a Fairfield Inn directory with maps pointing
the way to each one.
It was rather
ironic, this Fairfield Inn was the very first confirmation we received
on the donated room night. In
fact we got the confirmation 10 minutes after we faxed the request.
Yet, when we arrived, someone had changed the comp room to a
regular rate. Mike, a
fellow musician, took the chance and overrode the rate, giving us the
comp. The manager, Chuck was on vacation, but we knew the donation was
good, Mike wouldn’t have any problems.
There were no restaurants nearby, but Mike gave us the number of a local
Italian place that delivered, and we ordered “in”.
MAY 29
Salt Lake City, UT - Reno, NV
Today I learned about one small problem with digital cameras.
Having 122 photo shots available, makes one lax in keeping an eye
on how close you are to the end. We
were passing Salt Lake when I ran out of space on the camera’s card.
We pulled out the laptop, and I started downloading, but this
took a good deal longer then the length of the lake.
We turned around and went back, still downloading.
It was worth it.
We passed the
Morton Salt factory. I
wonder why I never thought about Morton and Salt Lake together.
We also passed a strange statue in the middle of nowhere.
It was kind of hard to say what the statue was of, it sort of
looked like a cross between a Joshua tree and a science class model of
the solar system, except some of the planets had “fallen” out of
alignment and broken open.
We stopped at Bonneville Salt Flats, the famous measured mile, where
land speed records are made and broken.
Sarah scooped up a film canister of salt for Kyle.
Night had
fallen by the time we reached Reno, but Val had faxed directions (and
was FedExing some of Kyle’s drinking cups to San Francisco) making it
easy once again to find our hotel.
And it certainly was a welcome room for us weary travels. In the Reno area, the only Marriott was a Residence Inn,
which the manager was kind enough to donate a room night. The room turned out to be a two bedroom suite, with a
fireplace!
As soon as we were unloaded, Sarah and I ventured off to the restaurant,
Beaches, that we spotted as we drove in, to get us some dinner.
Unfortunately, the kitchen had closed.
Cheryl, the bartender gave us directions to an all night
restaurant, as well as purchasing an ALS Awareness pin and playing Kyle’s
CD in the bar.
Sarah and I opted to hit the nearest grocery store instead.
The Residence Inns are designed for extended stays, and come
equipped with their own kitchens, which gave us the luxury of choosing
whatever we liked for dinner. We
hit the frozen food aisle.
We ate well, cleaned up and went to bed.
I should tell you that loading and unloading the van is no small feat,
and Sarah has been a life-saver in this department. Every evening we fill a hotel valet cart with the commode
chair, portable kitchen, laptop and mount, suction machine, mini-fridge
(necessary to keep Kyle’s myotrophin chilled), video camera,
toiletries bag, overnight case, Road Trip notebooks and Sarah’s
luggage.
MAY 30
Reno, NV - San Francisco, CA
Other then to check out, we were not rushed this morning as it was a
short drive into San Francisco, or so I thought.
I spent a large portion of the morning making phone calls to
Valerie and our contacts in San Francisco.
My first phone call to Val, we discovered that Kevin was going to
be flying in to San Francisco on Sunday to join us.
This was terrific news! Kevin
Heidrich is a PALS from Edgewood, KY and has become one of our dearest
friends. He has been a
staunch supporter of the ALS March of Faces and an all around great
human being. We were so delighted to hear he was coming, as he had just
gotten home earlier this month from a pilgrimage to Lourdes, where he
served as an auxiliary aide to a Malade.
With so much of the day ahead of us, we decided to take the scenic route
into San Francisco. This
consisted of detour through Lake Tahoe.
We knew a PALS in the area, Steve Lieberman, and were hoping that
we would be able to find him and his carry-out restaurant, Killer
Chicken.
We discovered
why Tahoe was a favorite among honeymooners.
The lake and surrounding area was gorgeous.
We took lots of great pictures, then headed to the shopping areas
to search for Steve’s place. I
had no phone number for Steve, and couldn’t find Killer Chicken in the
phonebook. We tried a
couple of different locations, but had to give up as the day began to
wane. We even tried to find
a Lieberman family that was listed in Soda Springs, to no avail.
Unfortunately, with roadwork, this turn off did not allow us to
enter back on the freeway, and we had to go about 15 miles down the road
to pick it up again.
Coming down from the mountains towards San Francisco proved rather
treacherous, and this began the hardest parts of our drive with Kyle.
There were many winding slopes and steep grades, all of which
sent Kyle’s head sailing from one side to other.
His headrest became loosened, and though he wore a neck brace, it
was only useful for his head dropping and not for side to side
stability.
Again it was nightfall by the time we got into San Francisco, but just
being here gave us a second wind as we got our belongings unloaded and
settled into the room that would be our home for the next 5 days. The cups were waiting for us, and Kyle finally had an
opportunity to get rehydrated. Thank
you Val!
MAY 31
San Francisco and the Bay Area
SIGHTSEEING
Muir Woods
This was my third visit to Muir Woods, and Kyle’s second, but it is
such a serene place of awesome beauty, it is always worth another trip.
It was Sarah’s first time seeing the giant Sequoias.
This is a perfect outing as we got to cross over the Golden Gate
Bridge, and we stopped right before hand, to take a few pictures at the
Palace of the Fine Arts.
Threes the
charm they say, and I had no trouble finding our way to park.
The park attendant informed us about the Golden Access Passport,
this is a card that allows anyone who is permanently disabled and the
party he or she is traveling with free entry to any national park in the
country. We signed up and
got one. This is great!
Kyle and enjoyed lunch in the café while Sarah shopped for gifts and
snapped a few photos, as well as taking a long walk through the sylvan
setting. We joined up with
her along the walk after we finished eating.
Kyle wanted to
see the beach, so we continued along Route 101 and discovered the Muir
Beach overlook. This was
truly a photo opportunity designed by God.
While at the overlook, we met a couple of guys who noticed our van, and
we spoke to them about ALS and our Route 66 Journey to End Lou Gehrig’s
Disease. They told Kyle to
stop in Winslow, AZ and check out the tribute to Jackson Browne’s song
“Take it Easy”. We made
a mental note.
Well, I just have this thing about not seeing the same route twice, and
thought we should continue exploring this part of state. Armed only with a US road atlas, I felt sure I could maneuver
us through this back country and find our way to the interstate.
It was going well, until about a half hour from sunset and we
were still in the back country, with no relief in site.
There were two small black lines that lead to the highway, only
one of which had an intersecting town.
The drive was becoming hard on Kyle’s neck, and way too long.
I missed the first possible turnoff (I think) but was sure I was
only a few miles away from the next, when Kyle’s patience wore thin
and he mouthed to me, “Get us Out of Here!”
Yes, the exclamation point was in there.
Fortunately, I was right about the turnoff, unfortunately, even
though the Inn we stopped at for directions told us the highway was
about 20 minutes up the road, it wasn’t, and we were not out of the
woods before dark.
It was late, we were tired, hungry and Kyle and I were both cranky by
the time we got back to the hotel.
We ordered in.
JUNE 1
San Francisco and the Bay Area
SIGHTSEEING
Fisherman’s Wharf
The wonderful thing about sleep, is that it washes away the stress and
pain, leaving behind only the pleasant memories of the day before.
We woke refreshed and filled with reminisces of yesterdays
adventure. We were ready to
brave it again. We also
relaxed and took our time about things.
We had arranged to meet our friend, Dudley Thompson down at the wharf.
Dudley is the owner of GraphicsLand, and produces the ALS March
of Faces banner for us. I’m
sure if he had only known what he was in for, four years ago, he may not
have decided to send us that email offering his services.
Dudley’s wife, Gail has had ALS for 24 years now.
We got down to the wharf by late afternoon, and went straight for the
oysters at Fisherman’s Grotto. I
was a little concerned for Kyle, as our last experience a few months ago
with oysters was not very successful, but these were perfect, and Kyle
enjoyed them immensely. We
continued to saunter down the road a little ways and do some souvenir
shopping.
It never
ceases to amaze me what keen eyes Kyle has, especially considering how
restricted his vantage point is. But
sure enough, he eyeballed all the Route 66 souvenirs and we bought them.
I was surprised and disappointed that the man who cashiered tried
to rip me off of 10 bucks, but as soon as I started making a fuss, he
relented, throwing my change at me.
We returned to the Grotto, which was our designated meeting point for
Dudley, and soon after he showed up.
We took a few photos overlooking the bay and the Rock (Alcatraz)
and chose a nice italian restaurant on the water for dinner, to which
Dudley treated us. We did a
lot of catching up.
Kyle went to work on Dudley immediately, and we it looked like we talked
him into joining us for the ball game on Sunday.
After dinner, we drove over to Ghiradelli Square.
Sarah stocked up on chocolates, and I indulged in a dark
chocolate and raspberry bar. Kyle was in the mood for a nightclub, and asked Dudley where
we could find a good blues or jazz joint.
Dudley found a newspaper and we checked out the local
entertainment. Mingus
Amungus was playing in town, a jazz group dedicated to playing the
masterpieces of Charles Mingus, who died of ALS.
We followed Dudley, who was not quite aware of our passenger’s
precarious plight, and took to the highs and lows of the streets of San
Francisco like the native he is. At
least, he remembered that I was trying to follow him, and pulled over
frequently to wait for me to catch up.
By the time we reached the club it was about midnight, just in
time for the joint to be really jumping, and there a terrifically long
line outside of the club. It
was wonderful to see so many young people clambering to enjoy the music
of the master. But it was
getting well past my bedtime, and we decided to forego this adventure.
JUNE 2
San Jose
Today was “Strike Out Lou Gehrig’s Disease” Day for the San Jose
Giants and the main reason we organized our driving schedule to get to
the Bay Area by the first. This
event is coordinated by PALS Don Altier, a young father and ALS activist
who spends a great deal of his days, when not helping raise his twin
boys, raising awareness and funds for the local ALSA chapter.
Dudley called
to let us know that he would be joining us for the game.
This was terrific, as we were afraid the night before would be
the only opportunity to spend time with our friend.
We were a little late for the start of the game, which meant that Kyle
missed his opportunity to give his speech, but we had a great time
anyway. Kyle enjoyed
watching the Triple A game, and especially the young baseball fans, who
lined up to run the bases after the game.
We met a lot of new folks connected with the ALSA Bay Area Chapter, and
some of our old friends too. We
also talked Merry Steagall, the executive director of the chapter, to
join us Sunday for the Golden Gate Bridge crossing.
We had shipped
some of the ALS March of Faces banner segments to Don prior as well as
bringing a few more with us. They
were all proudly displayed, and made a remarkable impact on those
entering the San Jose Municipal Stadium.
Don’s twins’ classmates had painted pictures about Lou Gehrig
and ALS and they were posted throughout the stadium.
It was a marvelous effort for ALS Awareness, and why were on this
journey.
After the game Sarah, Dudley, Kyle and I went to the Outback for dinner.
This time Kyle’s treat. We
ordered ribs for Kyle, but he was most comfortable taking them back to
the hotel with us, so his dinner was going to be a bit late tonight.
Kyle was about to ask a favor of Dudley, but I put the cabash on it,
before it was uttered, knowing Dudley had already done enough, and had
gone far out of his way, as usual, for us.
JUNE 3
San Francisco Bay Area
“PALS ACROSS THE GOLDEN GATE”
We could not have picked a more perfect day.
It was cool and crisp with not a cloud in the sky.
God was on Kyle’s side when he chose this day to cross the
Golden Gate Bridge in his power wheelchair. And PALS Kevin Heidrich’s
too.
Kevin’s plane arrived just shortly before we began our departure from
the hotel room to go to the bridge.
The airport was only a few minutes away, so we instructed him to
hop in a cab and come straight to the hotel, we would be loading up in
front when he got there. We
were so happy the timing worked out so perfectly.
We arrived at
the Bridge south viewpoint, after dealing with horrendous traffic about
an hour before our scheduled crossing, which is what we had hoped for.
Sarah and I began to unload Kyle and set up the banners around
the van. We were surprised
by the arrival of our friend, Dave Dunlop.
Dave has been a long time friend of PALS Jason Becker, former
guitarist for David Lee Roth. It
was Dave who got the two musicians “connected”.
PALS Don
Altier and his wife Carrie and two boys also arrived.
Carrie and her son overcame their fear of heights by crossing the
bridge today. We were so
proud of them! PALS Karen
Gorup also made it. She
looked beautiful as ever. Her
son Eric came out to meet her too.
Merry Steagall, the executive Director for the Bay Area Chapter
brought refreshments and tried to help coordinate this team of Bridge
Crossing PALS.
By 2 o’clock we were finally coordinated enough to begin crossing the
bridge. The extemporaneous
plan was to go halfway across the bridge and return, making the full
mileage but coming back to side where our vehicles were.
Apparently this was a fine plan for everyone except Kyle.
Undaunted, he traveled the entire span of the Golden Gate Bridge
using his head array system. This entailed more then just a few abrupt stops, as everytime
he crossed a cabling spanse, the wider cracks caused enough of a bump to
throw Kyle’s head off of his headrest.
Slowly, Kyle would lift his head back to his headrest and carry
on. He told me he had to
stop and pray for strength three times as he made his way to the end of
the bridge.
Now of course,
while everyone else turned around somewhere at the halfway mark or so, I
stayed along Kyle’s side, video taping and taking camera shots of his
feat. I naturally, got to
drive him back. I surely
wasn’t counting on that long of a walk.
Regardless, everyone had waited patiently for our return, and
applauded Kyle as he approached the vans. I
sure was proud of him, even if he is stubborn, oops I mean determined.
The true toll revealed itself that evening in the hotel.
Kyle was roasted! He was wrapped snugly to defeat the elements, and had even
chose his U2 stocking cap to keep his noggin warm, but we never thought
about the intensity of the sun. He
had several spots on his face that were oozing orange stuff. He looked very much like Alien had sucked on his face awhile.
He wore that sunburn like a badge of honor, and so he should.
JUNE 4
Bay Area - San Luis Obispo
We were scheduled to leave early so that we could take Sarah to the
airport. Kevin had
volunteered to do that, so that everyone could sleep in just a little
later. Kevin would drop her
off at the San Jose airport, about 50 minutes away and come back for us.
Great plan, but you know what they say about mice and men (it holds true
for women and PALS too). Sarah
missed her flight, and Kevin stayed with her until she caught the next
available flight. Meanwhile,
we called a few of our friends to say goodbye and thank them.
That’s when Kyle caught me off guard, and got to ask that favor
of Dudley.
Dudley, is an unusually giving person, and worse then me when it comes
to not being able to say “no”.
Which of course, he didn’t.
If we could make it over to the shop, Dudley could make the “favor”
happen. Okay, now the
burden has been shifted on my shoulders, and far be it for me to say “no”
when everyone else is saying “yes”.
When Kevin returned we loaded up the van, said our thanks to the
Courtyard Marriott South San Francisco, and headed over to Oakland,
where GraphicsLand is located.
We got to meet Spurgeon, who is our new computer graphics man, that I
work with on our photo files. We
scan the banner photos at the ALS March of Faces in Trenton, I fix, crop
and resize them with a photoshop program and bring them into our banner
template. I then save them
to a CD and send them to Spurgeon, and pray he will be able to work with
them. He makes miracles happen!
George was there to say hi; he has been printing the banner
segments at GraphicsLand since it’s first inception.
Dudley got on the ball immediately fulfilling Kyle’s wish.
Great big white lettering that say, “CURE ALS” “www.march-of-faces.org”
and “www.kylehahn.com” to place on the van.
We were truly turning the vehicle into an ALS Awareness Wagon.
Between the
missed airplane, and the change of plans that took us to GraphicsLand,
we were off schedule by about 8 hours, but Kyle’s wish was such a
great idea, I’m glad we did it. And
thank Dudley and his team for making it happen.
We had a plan to take the Big Sur and stop in Monterey, but we got as
far as Santa Cruz and realized there was no way we would make Santa
Barbara if we did that. So
we got back on the highway after getting a very late lunch and catching
a glimpse of the Internet Café-Laundromat.
I can’t resist telling you about this place because I thought
it was hilarious, the one stop shop to Sort, Soak, Surf & Sip
The traveling
was longer then expected, I took over the driving from Kevin when it got
dark. Somewhere along the
highway a coyote crossed in front of us.
Kevin was sure we had hit it, but I felt nothing, although, when
I caught sight of it, it seemed to still have it’s hind quarters right
in front of my right headlight, so I don’t know how I could have
avoided it.
By 11:30 p.m. we were just outside of San Luis Obispo and the mile
markers told us that we 150 miles more to go to Santa Barbara. Forget it!!! We
made an unscheduled stop in SLO. The
Days Inn had a handicap room with roll-in shower, so Kyle would finally
get an official shower.
JUNE 5
San Luis Obispo -Santa Barbara - Tarzana, CA
We had a great breakfast at International House of Pancakes before
leaving San Luis Obispo, and arrived in Santa Barbara about 3:00. We were greeting by sand mermaids at the pier and did a
little souvenir shopping as well as watching the anglers fishing off the
pier.
We got back on
schedule and left around 5 pm for Tarzana.
Pat gave us great instructions, and we got there within a half
hour of our ETA.
Boy it sure was great to finally meet Pat Snyder. Pat lost her loving husband Tom to ALS in 1995.
She devotes a great deal of her time to the local ALSA chapter,
meeting and helping out local PALS, and supporting the ALS March of
Faces. It was so wonderful
of her to open her home and her heart to us, knowing us only from the
internet for the past 4 years.
And what a terrific hostess. Somehow
we had forgotten to pack the van with our portable ramps, and that posed
a problem at Pat’s. But
she resolved it quickly, by finding a piece of plywood in the garage and
devising a makeshift ramp. It
served us well over the next three days.
She also had a terrific dinner cooking up on the stove for us too.
Good thing, we were starving!
JUNE 6
Greater Los Angeles
Meet with Debi Klein, ALSA Greater L.A. Chapter and Visit with Lorraine
& Greg Dykes
We finally got an opportunity to meet with Debi Klein, the executive
director of the local ALSA chapter.
She had a few things to shore up with Pat on an upcoming
fundraiser and we discussed this year’s Advocacy Day in DC.
Because of this planned trip, we were unable to make it this
year.
After Debi
left, Kyle and I hopped in the van and Pat took Kevin in her car and we
went off to visit with some PALS. We
rearranged our schedules and set off to see Lorraine and Greg Dykes
first. We have known
Lorraine from the AOL ALS support conference for well over 4 years.
She was amongst the first to put her picture on the banner, but
has never had an opportunity to see it, as she ended up on a vent only a
year later. Her husband
Greg is a jazz musician, and he and Kyle of course communicated with one
another on another plane and in another language entirely.
What the heck is “Tone” anyway, I only know it as a euphemism
for spasticity. They
listened to some grooves while we chatted with Lorraine, who slowly
typed out her responses and messages from a dynavox.
She has reconstructed her hoyer lift to be a sling for her arm,
holding a chopstick that she uses to push the letters laboriously.
Amazing, but I thought there might be something more adequate for
her communication, so we promised to return tomorrow with some
literature on another type of communication device.
We had hoped to also visit Dr. Frank de Leon Jones and his wife Sylvia,
but it was getting too late for them, so we amended our plans to visit
with them the next day.
After listening to great jazz, Kyle’s musical senses were brought to
full attention and he just absolutely had to go to the music store and
get some CDs. Did anyone
say “no”, of course not, so off to Barnes & Noble we went.
We checked out to see if they had anything good in Audio Books on
CD, then headed to the music department.
Kyle picked out several CDs, including of course, Miles Davis’
“The Birth of Cool”
Back to Pat’s for dinner and sleep.
JUNE 7
Greater Los Angeles
Drop in to visit the new ALSA Headquarters office in Calabassas Hills
and visit with PALS Steve Fowler, board member of the ALS Therapy
Development Foundation
Both Kevin and Kyle were looking forward to “dropping in”
unannounced at ALSA Headquarters, but Pat had already given them a heads
up earlier that week that we were in town.
President Mike Havlicek stopped in the meeting room for a few
minutes and Kyle organized everyone for a photo op.
We talked with patient services VP, Mary Lyons and her staff and
when we left they all came out to take a group photo with our Awareness
Wagon.
After checking
out the new office, which was immensely spacious, but from what we saw
not overly lavicious, we headed over to PALS Steve Fowler’s home.
Kevin was checking out at this point, so Pat took him to the car
rental place, while we went straight to Steve’s.
Uh oh, those forgotten ramps reared their ugly heads again.
We didn’t know how we were going to get into Steve’s
apartment. His nurse,
Redonda, tried a few things but it didn’t look secure enough to do the
trick. We called Pat’s
cell phone, in hopes of catching her and asking her to bring the plywood
before she rendezvoused with us. Meanwhile,
we also got a message to Steve’s friend and musical colleague,
Elizabeth. Liz showed up
with a portable table, and that did the trick.
Our visit with Steve was another venture in musical jargon.
The guys took turns requesting the playing of different tracks on
several CDs. Steve had a
“flying pig” that sparked our party’s interest, especially with it
being symbolic of Cincinnati, where Kevin’s Team 7 for ALS
participated in the “Flying Pigs Marathon”.
No one was quite sure what the meaning was behind the flying pig,
but my guess was that it stemmed from the expression “when pigs fly”,
therefore if a pig does fly the impossible can happen, like a cure for
ALS?
Steve uses his
computer and head switches to communicate.
He taught himself morse code in a day, and has his computer set
up to translate that code. It is very efficient. I
asked him if the head switches was tiring, as he has two, which I
presumed one for dot and one for dash, but he said it wasn’t.
They were wonderful hosts, and had ice tea, sodas and cookies out for
us, which I think I cleaned the platter.
They were good. Steve
and Kyle were naturally enjoying their visit with one another and time
once again passed too quickly. We
were not going to be able to visit Frank & Sylvia this trip.
I guess we’ll just have to come back to L.A.
We took Pat to El Torito’s for dinner, and Kyle had a food fest.
He loves Mexican, and didn’t hold back in letting us know.
The food was good, and the margaritas terrific.
It was a lovely end to our stop in L.A.
JUNE 8
Los Angeles - Alhambra - Cerritos - Apple Valley, CA
We were so sorry to leave L.A. and our dear hostess, Pat, but alas, it
was time to move on. We
finished gassing up were on the road at 11:45 a.m.
Departing L.A. was a few hours slower then normal (and normal is
horrendously slow with traffic), as we made a stop in downtown L.A. to
visit Kyle's Aunt Joanie at the Jewish Big Brothers on Wilshire Blvd. Kyle hasn't seen his California relatives for over 12 years,
and although the stop was short, they hugged, kissed, cried, and hugged
and kissed some more.
From
downtown, we headed to Alhambra (the long way of course, as I missed my
turn off), to visit Kyle's paternal grandmother and Aunt Marsha.
More hugs, kisses and tears.
We all prayed for one another, and hoped that next year they
would all be able to come to Ohio and visit.
Next
stop, that's right, we are not done with the L.A. area yet... Cerritos,
where Judy Brown, an ALS March of Faces Trustee, and her husband, Dr.
Don, a pediatric dentist are located.
The Children's Dental Building, a large pediatric dental practice
is Don's baby and a sponsor to our road trip.
It was great being able to thank them in person, as well as drop
off a number of pins, ribbons, bumper-stickers (for Judy's Porsche, I'm
sure).
At about 4:15 we were finally ready to head out of town, perfect timing
right? As if hitting rush
hour in the L.A. area wasn't enough... this was Friday, and our route
was the same as to Las Vegas...UGH!!!
We finally made it to Apple Valley home of PALS Rev. L. Paul Fiedler and
his lovely wife, Pat. Both
Pat Snyder and Pat Fiedler are RNs...
Coincidence? We
think not!
We were much later arriving then we anticipated (so what’s new,
right?), but Pat kept dinner warm for us.
She made her specialty Taco Soup, which was delicious.
After we ate, we sat and talked and caught up with one another.
Pat and Paul had last come to visit us in Ohio two summers
previous. Pat had given me
a second glass of wine, which I went out on the patio to sip.
I don’t think I realized how tired I was, that glass never did
reach my lips, instead it met with a crash on the cement.
I am afraid it was a piece of her crystal and I felt awful about
it, but Pat is ever so gracious, and just turned around and poured
another glass of wine, in another crystal glass.
Boy, is she brave! I didn’t touch it.
Paul is one of my spiritual advisors, so we had a some lively discussion
about life and afterlife. He
is a practical minister with a good handle on reality as well as beyond,
and I enjoy his sense of humor. I
am ever so grateful he has a slow progressing form of ALS, as I know
there is still so much more I’d like to learn from him.
By midnight we were exhausted and hit the hay.
JUNE 9
Apple Valley, CA - Sedona, AZ
We planned to
depart early in the morning, but it was so good to see the Fiedlers
again, we hung out till early afternoon instead. Leaving Apple Valley at about 2:30 p.m. we had a long haul
ahead of us to Sedona, AZ, through the Mojave Desert.
I
gassed up, and this time filled our 6 gallon fuel container, as well as
getting extra bottles of water.... JUST IN CASE. I made the foolish mistake of mentioning to Kyle that the Van
was getting hotter according to the thermostat and we had to pull over
into a rest area to argue our cases.
Meanwhile, it was 112 degrees, and the pull-off was doing nothing
to cool off the van, although I only meant that the thermostat needle
was a little higher then it normally runs, but was still well in the
normal range. Explaining
that, we got back on the road, so the airflow would cool the engine
down, which it did.
We had no trouble going through the desert, and we reached the Arizona
border at about 6:30. That's
when we decided to get off the highway and travel a portion of the old
route 66. The portion we
chose was part of the original roadway through the Black Mountains,
although "Route 66" had changed course in the 50's as
traveler's preferred a "flatter" route through Yucca, we were
glad we were on the historic Back Country Byway.
As luck would have it, we drove through the Black Mountains at
sunset and both of us can attest to the incomparable beauty we were
stunned with through this passage.
God in his infinite wisdom has blessed us with certain natural
masterpieces that are so overwhelming they bring one to tears.
This was one of them.
It
was pitch black as we made our final exit out of the Black Mountains and
into Kingman. It was 8:00
p.m. and we were looking at about 4 more hours drive, that is, if I had
looked at the map one more time before I got back on the road.
It was more like 5 hours, as I exited the interstate at the first
Sedona sign, 89A. 23 miles
through Oak Creek Canyon at Midnight.
I had no idea what I was missing, and it was probably a good
thing, as the road was winding and the gorges deep.
We were in Sedona and in bed by 2 a.m.
JUNE 10
Sedona, AZ
My good
friend, Donna Bush and her daughter Laura, whom I haven't seen in 10
years, live 5 hours south on the Mexican Border near Nogales drove up
this morning.
We had planned to see our friend PALS Gary Biss in the a.m. but we were
off to a late start, as were my friends.
We finally got it all together, and went to see Gary at about
1:30. It was so good to see
him, it had been four years. He
was still the "lazy bear" we all love.
I wish we could've spent more time.
We had planned to go to the Grand Canyon that afternoon with our
friends. When we returned
to the hotel, we had to make a bathroom stop for Kyle, and as that was
taking awhile, it was getting past 4 and looking like the Grand Canyon
was out for this trip.
We
put our heads together and decided to spend the evening in Sedona, have
a nice dinner, then get up early and leave for the Grand Canyon.
Oh what a night!! We ate a
place called the Cowboy Club, featuring buffalo ribs and rattlesnake.
One of those did not sit with me quite right.
As I was loading Kyle into the van after dinner, it came on me
like gang busters. I was too far from the restaurant to go back, but I couldn't
hold out, my body took over my willpower.
I was a mess, but fortunately, the van was packed with our
clothes, so Donna grabbed a change of clothes for me, and followed me as
I waddled to a dark spot in the courtyard of the shopping area.
Put fresh clothes on, and tossed the soiled garments.
As we headed back to the hotel, pronto, I realized I also threw
out everything I had in my pockets... the room key (but Donna had one,
whew!) a few coins, and Kyle's eyeglass leash (at least that's all I can
recall). My body defied me
once more before we got to the hotel.
I made a straight shot to the shower as soon as we got there.
Everyone patiently waited for me in the van.
I don't know if it was the buffalo, the rattlesnake or maybe the
Mile High Mud Pie, but never again!
Of course, Kyle thought it was the funniest thing and laughed his
head off.
JUNE 11
Sedona - Grand Canyon - Santa Fe, NM
We left
Sedona about 7:30 and stopped at Sunset Crater Volcano north of
Flagstaff. This was
incredibly fascinating. The
volcano has been dormant for 750 years, but it's path of destruction was
tremendous and ominous.
We got to the Grand Canyon exactly at noon.
I kissed Kyle... "Did you know if you kiss at the Grand
Canyon at noon, you will be together forever..."
We are making a our own legends.
It
was even more splendorful and magnificent then I had even imagined.
There are no words that appropriately describe or picture that
accurately depicts the grandeur of the canyon.
It is a place that must be experienced.
We also passed along a few ribbons at the Canyon too.
We said goodbye to Donna & Laura who added a few more baseballs to
our window collection and headed east once again for Santa Fe.
Another long haul was in store.
We stopped just short of the Painted Desert to eat.
This was a mistake, as it was dark by the time we were finished
and we were unable to enjoy the mystic and beauty of the place.
I swore I would not do any of this road trip at night, and so far, I
have had to eat those words three nights.
I mean it from now on... The
worst is Kyle is missing meals because of this.
I am too tired by the time we get in at 1 or 2 in the morning to
do anything but put us to bed. We
arrived in Santa Fe at 2 a.m.
JUNE 12
Santa Fe, NM
In the
morning I got up early and took the van for an oil change.
Then went back to wake up Kyle and get him ready for lunch.
We found a nice little New Mexican restaurant, Little Anita's and
they had great cheese enchiladas that Kyle loved, as well as their
refried beans and guacomole. Kyle
at last had a satisfying and fattening meal.
We took a little driving tour of Canyon Road, which we knew there
was nothing we could afford and went on to Palace Avenue and checked out
the Palace of the Governors, where the native american tribes sell their
wares in the flea market. Turquoise and Silver of course were abundantly displayed.
Timed
perfectly, I was so thankful to find my sister Valerie arrived from
Kansas City, KS and was waiting for us in the hotel room. She will be my assistant and driver for the next week. That
wasn't the only welcome addition. PALS
Brad Grantham and his nephew, Cody,drove down from Greeley, CO to
tag-along with us in Santa Fe and start his own Road Trip. We relaxed and chatted for awhile as we pondered our time
element and whether going to the cliff dwellings was conceivable.
The
desk clerk said it would be less then an hour's drive to Bandelier, so
at 7:30 p.m. we opted to give a try.
What the desk clerk didn't tell us what that the park closes at
8. After a fascinating
drive through the pueblo country and watching the sunset and the land
begin to darken we were becoming disheartened.
We reached the park entrance at 8:30 saw the sign stating closed
at 8 but the barriers were not closed.
What the heck, my cohorts, Kyle, Valerie, Brad & Cody and I
decided to take the chance . Still
a little daylight left, a lump formed in my throat as I realized I would
have to drive down this canyon in the dark.
Sometimes, there is reaffirmation that we are blessed.
There were still people at the visitors center.
Valerie went in to check out what was going on.
On Tuesday nights in the summer, Bandelier does a nightwalk by
the cliff dwellings. Unbelievable!
The nightwalk is done in total silence and darkness, which Kyle's
wheelchair didn't quite co-operate with the silent part, but everyone
was very forgiving. This was a very special experience, in which we were
sworn to secrecy not to give any of it away.
So I won't. But I
will say, if you are in the Santa Fe area on a summer Tuesday night, go
to Bandelier.
Once again, we get in pretty late.
Kyle misses a meal, but the nourishment of spirit has been
plentiful and we sleep soundly.
JUNE 13
Santa Fe - Roswell, NM
I guess I
don't have to tell anyone, that no matter what time we actually depart,
I have to be up at the crack of dawn.
There are always 101 things to do, prepare, pack and catch up
with before I get Kyle up. Our
departure was scheduled for 10 a.m.
We were actually leaving Santa Fe at noon.
There was no scenic route to Roswell, so we opted to take one that led
us through Lava Beds.
We stopped in Soccoro to gas up and eat at the Sonic. This was a winner as they had chili that Kyle liked and
Peanut Butter Fudge Milkshakes. Hallelujah!
We were also approached by a young volunteer fireman, who noticed our
van. He and his fellow
firefighters had just finished a walk for the Muscular Dystrophy
Association. He was quite
impressed to meet Kyle. He
added baseballs to our van window for him and his family.
We stopped for an unremarkable Historic Marker and decided not to do
that again. But we did stop
at the Valley of the Fires Lava Beds.
I'm glad we did. Although
it had been 5,000 years since the lava flow, it was interesting to learn
and view the hardened lava that seeped out from vents in the ground
rather then flow from a volcano.
Every
now and then, a spectacular event happens that is only for a moment, and
only your mind's eye can capture the image.
On our way to Roswell, we turned a bend, where there was a small
farm house and fenced field with a stone lined ridge. At the top of the ridge stood a magnificent horse, posed in
his royal stance looking over the ridge as master of his universe.
It was just the perfect picture that lasted only a moment before
the steed ran off, but all of us caught that mental image, and we shared
the feeling that had washed over each of us at that special time.
We arrived in Roswell and it was still light out!!! I was really happy my sister was with us.
We moved our stuff in from the van, checked out the local
information, it was 8 pm and we had just missed "Roswell, the
musical". So we went
to dinner instead.
After filling our bellies, and Kyle actually getting three full meals
today, as Valerie had run out and gotten him gravy and hash browns for
breakfast at Denny's... Brad and Kyle thought star-gazing and
alien-watching was in order. It
was 10:30, but we were in Roswell, and wouldn't it be awful if tonight
was the night "they" returned and we were asleep.
So the three of us hopped in the van and rode a ways out of town to
enjoy the gems of the night sky. "They"
did not return, so we did. But
not without Brad seeing a shooting star first.
He made a wish... Was it "a cure for ALS"? hmmm
The
deal was we go stargazing then we come back and go directly to bed, do
not pass go, do not collect $200. And
that's exactly what we did.
JUNE 14
Roswell, NM - Amarillo TX
Another crack of dawn, I ran to the grocery store, then filled the tank
up for our next stop--Amarillo. Kyle
wanted to go to the "Alien Gift Shop" before we left town to
stock up on souvenirs (boy, does Roswell know how to squeeze blood out
of a turnip). We had breakfast at Denny's and our waitress Paula was so
wonderful. We left lots of
ribbons, went across the street and bought lots of alien stuffs.
Brad and Kyle posed for a few shots under yet another UFO sign outside
of Denny’s. This is where
we got buzzed by the B-1 Bomber. Kyle
was flabbergasted, as it was in ascent position, and supposedly there
were no bases nearby. Hmmmmmm!
Brad separated with us here, to go south to Hobbs and visit his
uncle, and plans to meet up with us again in Amarillo.
We drove into Portales, which greets it’s visitor with a Veteran’s
Memorial Park landmarked by the display of an F-111.
This we had to turn around and get photos of for our resident
Aircraft buff, Kyle.
As
I type, we are now 45 minutes from Amarillo, and guess what.
It's still light out!!!! I
love my sister.
We finally learned what the “horseshoe” meant.
Like New Jersey and it’s jug handles, some all too creative
civil engineer designed horseshoe ramps for the highways in Texas.
So it took us a few shots to get the right horseshoe to the
hotel, and of course eagle-eye Kyle noticed we were right next to an
Indian Motorcycle showroom. In
fact, we could almost see right into the showroom from our hotel room.
We ordered some Outback Take-out, and used this evening to relax.
JUNE 15
Amarillo, TX - Wichita Falls, TX
Wichita Falls was scheduled as an in between stop, to give us plenty of
time in Amarillo without rushing straight to Dallas/Ft. Worth area.
This was a wise move.
Brad arrived mid-morning, and we got ourselves ready for our escapade to
Cadillac Ranch. My sister,
Val had done some reading up, and noted that the cars at the ranch have
been adorned over the years with visitors graffiti and other
characteristics of note, such as someone painting all the cars red.
That gave Kyle an idea.
We found the
ranch, but stopped at the souvenir shop first, naturally.
That’s when Kyle told us that we have to go back to town and
get paint and brushes from Home Depot.
So we did.
Now stocked with navy and white paints, and some brushes, we figured we
better catch some lunch now, so over to “Over the Border” we went.
Since Little Anita’s, Kyle has been on a hunt for great cheese
enchiladas like he had there. They weren’t to be found here, but his meal was pretty
good, and we ordered lots of guacomole, another one of his favorites,
and mine. Of course, I make
the best guacomole, but Kyle suffers through everyone else’s cause he
just likes it so much.
At the ranch we went to work on the vehicles.
There are about a dozen Cadillacs planted into the ground, only
the back ends of the cars stick up.
I have no idea if the front ends are actually buried, or if these
are just half cars, but here they are, planted like a row of corn.
Very weird, but a necessary stop on the Route 66 tour.
Val and I
painted navy pin-stripe ribbons and “Cure ALS” on all the cars,
adding web addresses on some, and Val couldn’t resist one “Val was
Here”.
It was quite hot out, and we were at work for a couple of hours.
Kyle renewed his sunburn, and he was proud.
Once done with the ranch, we headed to Wichita Falls. This time it was dark when we arrived. Val will have to fix that record. We ate dinner in our room and went to bed.
JUNE 16
Wichita Falls - Arlington, TX
As I had said, this was stop was planned just as a convenient sleep over
point. And that’s exactly
what we did. We slept well,
and slept in.
Our Awareness caravan was on it’s way to Dallas/Ft. Worth.
Meanwhile, I was trying to figure out if we could swing by
Abilene in some way and visit my friend, Paula, but it just was not
practical.
We found our hotel and was tickled to see it was right next to the Six
Flags Amusement Park. Roller
Coasters sure have changed since I was last on one.
We watched elated riders hanging upside down as they looped to
looped. Interesting, but
you can only watch so long before getting a little queasy.
I noted as we drove in a Macaroni Grill, and this is one of my favorite
eating places, so I got to choose tonight.
We had a great meal, as well as explaining ALS to our waiter.
Macaroni Grill has paper covered tables and they provide those
with nervous hands a box of crayons, the colors are in Italian.
We of course, wrote “Cure ALS” and drew ribbons on our “tablecloth”.
Kyle made sure I also included his web address, kylehahn.com.
I’m beginning to think of him as Kilroy instead of Kyle.
From dinner we headed over to the University of Texas-Arlington for the
ALSA North Texas Chapter Concert. At
long last, 4 years later, we were finally meeting one of our staunchest
supporters, Linda Gibson. Linda
is currently acting president of the chapter, but that lady has her
hands full already. Her
daughter Marcie was diagnosed with ALS at the age of 23.
Linda does a wonderful job of coordinating volunteers to help out
with Marcie, lend a hand with the growing chapter and help us out with
pinning ribbons.
Jana
Stanfield, an inspirational speaker and talented artist, was our
entertainment this evening. She
truly was inspirational, and left me with a few little insights.
My favorite was, “Life is what happens while we are busy making
plans”. It is so true,
and anyone living with ALS should know this.
We got to meet our friend, PALS Bill Wolke, who corralled his support
group together to send their photos for the banner in one fell swoop.
Of course, he had left the task to his caregiver, Terry (a guy),
whom we also got to meet. I can’t tell you what a pleasure it is to meet these PALS
and caregivers. We get so
many terrific opportunities to be re-inspired.
I wouldn’t trade it for the world.
JUNE 17
Arlington, TX - Norman, OK
We said our goodbyes to Brad and Cody, as they headed back to Colorado.
We were so grateful for this reunion.
We headed north to Oklahoma, with a planned stop to visit PALS Judge Joe
Joiner and his wife, Hoppy. Two
years ago, Hoppy, almost single handedly organized an Awareness Event
for Brad at the local Mall. It
was ashame that Brad wasn’t going to have the chance to see her again.
This would be my first time, although we have spoken many times.
Hoppy & Joe live in what can only be described as an antebellum
home. Wrap around veranda,
spiral staircase, cathedral ceilings and filled with antiques, many you
could tell were from her past generations.
I think I was most surprised to find out how old the Judge was.
Hoppy had sent a portrait of Joe as a young man, and for some
reason I never did the math from his birthdate.
Joe was born in 1925. He
was diagnosed in 1987. Hoppy
and Joe have learned to live with ALS for 14 years, and they do so
cheerfully. Joe is now
completely bedridden, and unable to communicate.
He sleeps much of the time and without the ability to open his
eyelids, it is hard to know if he is awake.
Hoppy and I discussed his stiffness and that baclofen, the drug
typically prescribed for spasticity wasn’t helping much, I suggested a
beer. Well, Joe certainly
gave a positive reaction to that, and you knew he was awake.
I have to remember to ask Hoppy if she tried that.
On to Norman, OK. That is
of course, after we made a few stops to find Lone Star Beer. Guess whose idea that was.
It meant overshooting our turn off, but Val was at the wheel, and
Kyle had found himself one more person who wouldn’t say “no”.
We got into Norman at a reasonable hour and decided to eat first then
check in. Don Pablo’s was
right next to the hotel, and of course, Kyle was up for another Mexican
meal. Bring on the
Guacomole. Cheese
enchiladas were ordered, and they were no where near Little Anita’s,
in fact Kyle couldn’t eat them at all, as the tortillas were not
cooked properly. He
survived the meal on refried beans and guacomole.
When we checked in, I noticed the young man at the desk had a terrific
necktie on. It was a
Fairfield Inn necktie with cartoonish type drawings of places and icons
along Route 66. I asked him
if there was anyway I could get one of those, and he told me to check
with the manager in the morning.
JUNE 18
Norman, OK-Overland Park, KS
As was my custom, I indeed stopped at the front desk before checking out
to speak to the manager. We
had done this at every hotel that donated nights so that we could
personally thank the managers.
Theresa Deeter was the manager, and a special person. We thanked her for the stay, and she said just let her know
anytime we were in, and she make arrangements for us. I asked her about the necktie and how I could purchase one
for Kyle. She disappeared
for a moment and came back with one.
She refused to charge us for it.
We went to the Oklahoma City Memorial, commemorating the lost lives and
survivors of the bombing. It was a solemn and beautiful tribute to
men, women and children effected by that heinous act of cowardice and
cruelty, and a reminder of how as a community we survive together.
Now it was
time to head to Kansas, and my family reunion.
Overland Park is where my sister lives now.
She moved there a few years ago to be near her daughter and
grandchildren. I haven’t
seen my niece in well over 5 years, so I was really looking forward to
seeing her, her husband Shawn and the three boys.
We arrived just in time for the boys ballgame to be breaking up, but
they won! We figured the
Rain Forest Café was the perfect eating and “catching up” place to
go. I’ve been telling Kyle about the Rain Forest Cafés since
my first visit to one about 3 years ago, he was now getting his
opportunity. The food is
pretty good, but this is one place you go for the atmosphere.
It is decked out as a jungle including monkey’s, gorillas,
elephants, parrots and huge tropical fish tanks, which our table was
situated right next to. It
storms in the Rain Forest Café, which I think is the best part.
Mist rises, lightening flashes and thunder roars.
Fortunately, this only occurs briefly about every 20 minutes,
otherwise it might make for a huge annoyance while trying to dine.
Hugs and kisses and photos went around, then Valerie helped us find our
hotel and get settled in. I
was so sorry she would not be going on with us, but it was great to
spend this time with her. She
was such a tremendous help and everything a sister could want in a
sister.
In the meantime, we got news from back home, that Kyle’s mom had been
taken to the hospital. She
has been in an uphill battle trying to recuperate from an arterial
bypass in her leg since late February.
When we left on our road trip, she was under the good care of her
daughter, Christi and husband Rick.
When they reached us this day, Christi felt it wasn’t necessary
for us to rush straight back, that it appeared that Mom was getting
stabilized. We were only 4
days away from home and we both agreed to not alter plans until further
notice.
Valerie lent me her cell phone to take for the rest of the trip, so we
could be reached in an emergency.
JUNE 19
Overland Park, KS - Springfield, IL
Our assistant, Valerie back in the office called us in the morning to
tell us that she heard from Jane Gordon of Springfield, who recently
lost her mother to ALS had been keeping a watch on our progress across
the country. She wanted to
know if it was okay to call the local paper.
We gave her the thumbs up, and by the time we got to Springfield,
a morning interview had been arranged.
The off ramp for our exit was closed, which really threw me off.
We took the next exit, which was about 7 miles up the road, and
found the Route 66 Newstand. Now, Kyle made me stop there for directions because surely
anyplace called the Route 66 Newstand, had to have beaucoups souvenirs.
It was just a newsstand. The
nice young man, did give me directions and even wrote them down, but
they seemed very convoluted, and I was sure I would get lost.
I decided to first try going back and seeing if the off ramp from
this direction was open. At
last!! I made a right
decision.
It was back to just Kyle and myself, so we decided to take it easy and
just order in. I even found
a place to order lamb chops. They
weren’t too bad.
JUNE 20
Springfield, IL-Chicago, IL
We had the good luck to have a roll-in shower in this room, so we
snagged the opportunity to get Kyle a good wash up.
The shower chair, would’ve posed a bit of a problem, since it’s
legs were maybe a foot high, if that much.
However, we always bring Kyle’s commode chair, which is
designed like a large plastic patio chair with leg extensions of two
heights. This worked
perfectly as our bath chair, and Kyle was spruced up for the morning
interview.
The photographer was unable to make it out to the hotel, but the
reporter, Tony Cappasso arrived exactly on time.
And we told him about our adventure.
The article appeared in the State Journal the next day.
Even Jane came out to meet us before we left and also got a chance to
talk to Tony. She told us
about the walk she was coordinating in her hometown and we wished her
luck, thanking her for her support.
We were now running a few hours behind, as the interview wasn’t in our
original itinerary, but we called Barbara Drummond, our hostess while in
Chicagoland, who lost her husband David to ALS in 1994, to let her know
our ETA. She was cool.
A few times we veered off the highway, so we could follow along this
portion of Route 66. We
found a neat little town called Atlanta, and got a few pictures, then
continued on ‘til we reached the Dixie Truck Stop, visited the Route
66 museum and of course picked up a few more souvenirs.
Kyle loved the museum, and sure enough I finally got a glimpse of
the burlap bag he had been speaking about.
In the old days, before antifreeze and coolant, they used to fill
a burlap bag with water and place it in front of their radiators as they
crossed the desert on Route 66 to keep their engines cool.
I would guess considering the population of Los Angeles, it
worked.
We were still
running behind our new ETA, but did make it to Arlington Heights and
Barb’s house while it was still light out.
And we were delightfully surprised by a small reception party.
Sally Gill, caregiver to PALS Ben Gill, who we have hoped to meet
for 4 years running, was there as was PALS Richard Crane and his wife
Lisa. This young couple are
a stitch. Lisa has a great
sense of humor, and you can see the love is so strong between them.
We also met Bob and Anne Lee.
Bob had just finished a cross-country trek himself, on his
bicycle! After meeting
Richard Crane, Bob had decided to utilize his free time, now more
abundant since his retirement, to make a difference for his community.
That difference was to raise money for ALS research.
One of the
most rewarding things about this trip, is that we have met so many
heroes. It is inspirational
and reassuring that so many folks don’t take ALS lying down, even if
they are forced to lay down. They
have a message of life and living that needs to be shared with the
world.
JUNE 21
Skokie, IL
LES TURNER ALS FOUNDATION
The Les Turner ALS Foundation was gracious enough to reserve this
afternoon for our visit to meet their staff as well as some PALS from
there area. Wendy Abrams, the executive director of the foundation, has
been a stalwart supporter of our efforts at ALS Awareness.
Wendy also has served as chairman of the International Alliance
of ALS/MND Associations, and helped us become a member of the Alliance.
With these factors in mind, it seemed very appropriate for us to be here
at the Les Turner ALS Foundation on the Global ALS/MND Awareness Day.
I got to chat with Jamie Weissburg, their public relations
director, and one of the staff with whom I talk and email frequently, as
well as Claire Owens, their patient services director.
We were elated
to finally meet our PALS Marshall Pines and his wife Sandy.
Marshall used to work for IBM before he was forced to retire by
ALS. He and his son devised
a voice-synthesizing program that utilizes Windows 9x features to
perform text-to-speech conversion, without needing an additional piece
of hardware or software. Their
program is called E-triloquist and they provide it free for PALS.
You can find the download link from our website.
This program is also Kyle’s preferred voice synthesizing
program. Marshall has a
terrific sense of humor, and you can see that in his program as he has a
few of quips saved in the program.
We were truly
amazed to meet PALS Susan Carter. That is because Susan is from the Dallas/Ft. Worth area of
Texas. Apparently, Susan
was in Illinois for a family wedding when we were in Arlington, but
fortunately for all of us, she was still in town for our visit to
Chicago.
Susan was traveling by herself, and taking the train back home.
We thought it was pretty cool, and she was looking forward to her
first train ride. I wonder
if her travel plans had something to do with Kyle purchasing the new
Microsoft Train Simulator as soon as we got home?
After our reception at the foundation, Barb took us for a little
sightseeing. Kyle wanted to
see the Lake Michigan. One
thing you can count on, if there is a body of water near by, Kyle wants
to see it. She drove us to
a great area, but there wasn’t anyplace we could really get close to
the lake.
We headed back for dinner. Barb
made some delicious chicken kabobs and Kyle had spaghetti. Fattened up we were ready for bed. We said most of our goodbyes tonight as Barb would be at work
when we left in the morning.
JUNE 22
Arlington Heights, IL - Trenton, OH
The traveling has been tough on Kyle, especially his constitution, and
he’s been experiencing a horrible bout of irregularity since New
Mexico. We’ve tried just
about everything, and even a daily enema has not done the trick, but we
needed to try again before we got on the road.
We got off a little late, but were still making good time, and we were
still a little early according to our itinerary.
That is until we hit the last 5 mile stretch out of Illinois.
What a traffic jam! This
was at least an hour of stop and crawl.
At least we were free of the Chicago tie-up, and on our way home.
We stopped for our last fill-up and a bite to eat.
Then there was no stopping us.
Kyle guided me through a shortcut and sure enough, we arrived in
Trenton at about 6:30 pm, only a half hour off our mark.
We were greeted joyously by our cocker spaniels, Truffles and Biscuit,
including welcoming “presents” from them.
So a little cleanup work had to be done before we could really
enter the apartment. It
sure was good to be home, 29 days, 7,330 miles and minus 7 lbs for Kyle
(added to me, I think) later.
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