Take Me Home Country Roads… 9/23/10 – 9/26/10

I’ve decided that one of my favorite things to do in life is road trip with my sister. This past weekend, we spent four days in three cities giving three speeches. The long weekend started with a late afternoon flight to Chicago, Illinois where I met Isa (who had flown in earlier) around midnight.  After only six hours of sleep, we awoke to be the first speakers of the morning at the Association of Multicultural Affairs in Transplantation (AMAT) annual conference. The conference was several days long and included transplantation professionals from all over the country, with a focus on minority issues and access to care. Our friends and highly respected organ procurement organization leaders, Cathy Olmo and Tom Mone, were in attendance. We were proud when CTDN employee Sandy Andrada was inaugurated as the next president of AMAT. Go , Sandy!  The goal of AMAT is to increase the availability of transplantation for minorities and address the barriers that prevent minorities from signing up as organ donors . Our lecture was entitled “Organ donation in Japan” and we shared our experiences about the organ donation and transplantation situation in Japan. It was very well received and, as a result, several attendees invited us to speak in their cities in the future. Following our lecture was a powerful talk by a law professor named Michelle Goodwin, who spoke about the black market for organs and other body parts and how that disadvantages the poor and people of color. She showed powerful slides of poor people in Pakistan who were selling their kidneys, or people who sold their eggs, sperm, breast milk, hair, or other body parts to make money. There is so much room for debate about whether or not organs should be sold or given as an act of humanity, when things like eggs, sperm, babies (surrogacy/adoption) , breast milk, already have a pricetag on it. It was truly thought provoking to question these ethical issues that modern medicine has created.

After our talk, Isa and I were determined to do what we had done in the past when we went to Chicago- SHOP. In particular, our goal was to shop at H&M and Filene’s basement, which are not easily accessible in the San Francisco Bay Area. We walked about 2 miles to get to the Magnificent Mile where we spent about 1/2 hour in each store. I believe that clothes are cheaper outside of California, and the winter clothes are much better.

After a shopping frenzy (I  admit I only bought one thing), we headed back to the hotel to try find food. Unfortunately, the only restaurants we could find nearby were  unhealthy fast food restaurants, which seems to be everywhere in America, and severely limiting for someone like me who is pancreatic enzyme resistant and has no tolerance for any fat . I ended up buying the only low fat food in sight- Jamba juice and popcorn- for lunch. We  took a cab to Chicago O’Hare airport, where we boarded a flight for Pittsburgh. At the airport, we found a deli and bought a small but dangerously oily pizza- again , out of lack of other options.  I knew I’d be doomed but ate it anyway. After a short flight, we rented a car in Pittsburgh and headed in the dark at 10:00 pm toward s the rural areas of Pennsylvania to a small town called Farmington, PA.  Isa had booked a room at The Lodge at Chalk Hill, a mountain cottage in the Laurel Highlands of Pennsylvania, near Ohiopyle State Park, with the intention of hiking the next day. However, the day before we left on our trip, we were invited to give a lunchtime lecture to pediatric residents at the University of West Virginia Medical Center on Friday, 9/24/10, so we had to head to Morgantown in the morning instead of hike. Those mountains were so close yet so far.

The small cottage was musty and woodsy. We were starving from our lack of lunch and dinner so we ate the food I had brought in my suitcase- trail mix, canned salmon, beef jerky, and granola bars. Sound good for a wholesome dinner?  The surroundings outside the cottage were too dark at night to appreciate. But we awoke to a beautiful day with a small pond outside of our balcony. There were dense forests all around, cut through by small roads and colored with signs of autumn. Most tempting was the brown road sign directing us to the State  Park which we didn’t have time to go to. We headed toward Morgantown, admiring the rural agricultural scenery. Isa tried her hardest not to drive like a Californian, since somehow the speed limits in this area rarely rose about 55 mph! There were toll roads every 20 miles or so, and soon we found ourselves out of coins. After one toll road, Isa sped up to 65 mph and suddenly, there was a sign stating 45 mph. Within minutes we were pulled over by a cop for a speeding ticket. Darn!!

We entered the state lines of West Virginia and busted out the John Denver CD. Yes, we are dorks. But what could be more appropriate as we drove by dense rolling hills of forest, deep woods with shades of autumn, surrounding ribbons of highways? After about 30 miles of this rural beauty, we came upon the small city of Morgantown. Like so many towns in middle America, the place is decorated with Walmart, McDonalds, Waffle House, Taco Bell, Applebees, Long John Silvers, Jack in the Box, Burger King, gas stations, and lots of lots of pizza joints. Don’t get me started on the meal options!  It was clearly a working class city, with small but cozy homes and large front lawns. There were American cars, pick-up trucks and lots of SUV’s on the road. And of course, it had its signature watertower with MORGANTOWN written on it. We headed straight to the university hospital where we rushed upstairs to meet Dr. Moffett, the head of the CF Center there. She had gathered about 20 of the pediatric residents to hear us speak for a lunchtime conference. We were treated to Pizza Hut pizza, which was so greasy it left art on my paper plate. I knew intestinal pain would be inevitable. Our talk was well received and the residents thankfully did not fall asleep. 

Following our talk, we headed to our hotel, not far from the hospital to check in and change. We got out of our professional clown suits as soon as possible and got dressed into the real Stenzel wear- hiking clothes. With the advice of one of the doctors, we headed to Coopers Rock State Park, about 12 miles from Morgantown (or rather, 20 miles using our misguided GPS which likes to take us on wild goose chases). Approximately 80% of the state of West Virginia is undeveloped wilderness, so it is an outdoor person’s paradise.  We arrived at Coopers Rock State Park and were truly in a dense West Virginian hemlock forest. We took a few small trails, but of course had no real plan, no map and limited time- classic Stenzel style. Dr. Maple Landvoigt, the adult CF doctor at West Virginia Univ. Hospital, had invited us out to dinner with his team at 6pm, so we had only about 1.5 hours to hike. It was a very bad tease. We hiked to the edge of a rock overlooking a huge valley. At the bottom of the valley was the Monogahela River, and out in the horizon were distant mountains of rolling dense forest with a late afternoon foggy haze. It was beautiful. The temperature was in the mid- eighties and it was more humid than California, so I had sweat dripping on my brow within minutes. Isa and I just began to walk. We were looking for a specific trail to a scenic overlook but couldn’t seem to find it. Every time we found a trail it seemed to just vanish and we would turn back. Not to mention  I had a low blood sugar episode during this meandering and couldn’t quite see where I was going as my world was spinning. Damn diabetes. 

Finally we found other rock climbers and asked them for directions to the Raven’s Rock trail. We were told it was down the road, so Isa marched ahead, while I was consistently 25 feet behind her, complaining as usual how much stronger she was than me. Just like my father, Isa and I waste no time hiking. She got to the car first, got in, started the engine and drove 25 feet towards me to pick me up rather than wait for me to get to the car. We sped down the highway to what we thought was the trailhead and got out to march again. This time we walked on a small road but there were no signs. Frustrated by not finding a true trail, and pressured by time, we just wandered, soaking in the pure joy of just being in a forest… even though we didn’t know where we were. After about 30 minutes, it was time to turn back and we marched to the car, challenging our heart rates and weak muscles in the name of our beloved hobby. We made it back to the car, drove away, only to come to the true Raven’s Rock trailhead- a few hundred feet down the road- marked with a huge sign. Darn! Missed it after all. Oh well. We busted out laughing hysterically in the car at our own stupidity. We are supposedly smart , but we can be so ridiculously dumb.  

We headed back to the hotel, changed into more formal clothing and met Dr. Maple Landvoigt, director of the CF adult center for dinner at a nice American restaurant. Dr. Usha Phillips and Dr. Silvia Cardenas, members of the CF team at WVU Medical Center, also joined. We had the most delightful dinner – great food, good conversation, and pure friendly conversation. It was our first true sit-down meal since arriving on our trip and I was starving. I decided to go for the sirloin steak. Five hours later as I am writhing in pain, I wondered why I did that. Hunger outdoes reason. 

Our conversations were peer-like, without any of the awkward hierarchy bullshit that often accompanies patient- doctor conversations. We really just got to know each other as fellow human beings and I was truly touched by the genuine good natured souls that they were all.  Dr. Cardenas was from Peru, Dr. Phillips was from New York and Dr. Landvoigt was originally from a different part of West Virginia. We talked about what a different life it must be to live in such a smaller town of only 150,000 people where the most exciting events were the college football  games.  Afterwards, we topped off the evening with ice cream from next door, and said our good-nights. The small Morgantown downtown consisted of several restaurants, bars , shops and of course a homemade ice cream store. Many of the stores were decorated with Univ. of West Virginia football team paraphernalia – this was a college town, and sports were huge. In fact, the next day, most stores were closed by 5pm due to the WVU’s football game against LSU. This was the type of town that John Cougar Mellencamp sang about.

After a short night, we awoke to the usual continental breakfast of cereal and waffles and headed towards the hospital for Saturday morning’s CF Education Day. We learned as we arrived that we were the keynote speakers and that the event was only from 11 AM to 1pm. We were able to give Power of Two books to each family in attendance (thanks to a grant) and were able to chat with a few families. However, unlike many other CF Family Ed days, many of the families didn’t ask questions or approach us after the talk, and some didn’t accept the offer of a free book. I’m not sure why. Were our backgrounds or lifestyles or subcultures (SanFrancisco Bay Area versus rural West Virginia) too vastly different to relate to each other? `We were able to chat with a few CF adults including one teen who recently had a double lung AND liver transplant in Pittsburgh. There were about 60 people in attendance. After our talk, which was entitled, “Finding the Power to Fight CF” where we share the “Top Ten things that Gave Us The Power to Fight CF.” We spoke about parents, community, goals, self reliance, hope, finding normalcy, accepting and self expression, to name a few. I feared that we inundated the audience with so much heavy information as we touched upon all stages of CF including transplant. The CF team seemed to like our talk but since the families were so reticent, I left with an uneasy feeling whether or not our talk was well received or not.

After the CF Education Day was over, Isa and I headed back to the car around 2pm with hopes of sightseeing and seeking out more hiking opportunities.  Morgantown has several long paved trails which were former railroad tracks that were covered up with concrete to make great biking, roller-blading, and walking paths without cars. There are over 65 miles of these trails. We headed towards one of the trails that meandered through downtown so that we could possible get some shopping in while walking along the Monogahela river. The trail was bustling with people of all ages enjoying their Saturdays. What a pleasant pace of life that people had. It was so different from the Bay Area- so much quieter, less crowded and simple. Isa and I found a small path leading to some rocks on the banks of the river. We sat on the rocks and had a wonderful sandwich box lunch provided by the CF Center. I enjoyed the sunshine, slight breeze, and calmness of a Saturday afternoon. After lunch, we walked a bit more on the path, hoping it would lead to a more woodsy area, but it seemed to be parallel to the downtown. So we left with the hopes of finding another state park to hike in.

As usual with some miscommunication, poor maps and too much ambition with too little time, we found ourselves at the mercy of our GPS driving somewhere outside of Morgantown to wards a  town that claimed to have Cathedral State Park, famous for its dense hemlock forests, wildflowers, and waterfalls. Jeezus, doesn’t that just make your mouth water? So we followed the bizarre directions of our GPS. It would direct us to go south on Interstate 68, then get off at exit 52 and then get on Interstate 68 North. I swear that machine intentionally wants to drive us mad!! So we spent the next hour meandering by car through the outskirts of Morgantown, through residential areas with simple houses dispersed on large pieces of land. We passed beautiful farms with haystacks, silos and horses. We passed mobile home parks and run down cottages and wondered how these people would survive the winter, which, according to Dr. Landvoigt , often reaches single digit temperatures. I passed an old lady sitting in a wheelchair on her front porch looking out at the road. These small towns were the type of places where neighbors knew each other, where church was a huge part of life, kids did 4H, and people attended revivals and Sadie Hawkins dances.  The scenery was truly Americana to the max. It was gorgeous. As we lost ourselves on this roadtrip, we realized it was close to 5pm and the GPS said that Cathedral State park was over an hour away. Of course, as we found out the prospects of hiking were slim due to time, Isa became upset as she drove. “You’re supposed to be navigating! I thought this was closer! Can’t you read a map? Why are you leading us somewhere so far? What about another park?” and of course I reply with “You agreed to go here! This is not my fault! We wouldn’t be on this road if you didn’t disobey the GPS! It’s so  late… we shouldn’t have wasted time eating lunch!” After more bickering we decided to “reroute” and head back toward Pittsburgh. If we continued to Cathedral Park, we would be heading away from Pittsburgh and wouldn’t arrive until close to 7pm- too late for a decent hike. We were surrounded by forests, lakes and yet we couldn’t seem to find a descent park .We did enjoy the country ride through rural West Va. Townships, but there was a loss and bitterness that left us in sour moods that we couldn’t hike as much as we wanted. Then suddenly, we would bust out laughing hysterically as we realized how much we are like our father, who would get bitterly upset when his hiking goals were unmet. How trivial, really. What the hell was our problem?

It was getting late and we decided to abort the hiking goals for the day and head north back to Pittsburgh since we had to be there on Sunday to fly home. As the sun set, we drove on the interstate, admiring the hills, the glowing sky, soothing music, and the freedom and  just being together. We couldn’t imagine anyone who would tolerate our road trips- long drives, few meals, and the incessant obsession with trying to hike amidst getting lost and wasting way too much time and gas trying to make a plan without one. It was actually quite comical.

Finally, after entering Pennsylvania state lines, just off the interstate, we found a Visitor Welcome Center and gathered a great deal of information on hiking areas around Pittsburgh that we would pursue in the morning.

Our next goal was to find our all-time favorite road-tripping restaurant for a truly American meal and a last hurrah for my gut- Cracker Barrel. We arrived at 9pm and ordered chicken and dumplings with side dishes including fried okra, corn, corn bread, collard greens and macaroni and cheese. It was absolutely heavenly. I believe that eating at Cracker Barrel should be on everyone’s bucket list. It certainly is a goal for me each time I head east. I had more than 15 zenpep enzymes which of course did nothing as I suffered all night long from this scrumptious meal that went straight through me (TMI, sorry). I still don’t understand why enzymes just don’t work for me AT ALL.  

Another bonus about Cracker Barrel is the gift shop that sells all kinds of goodies including scrumptious candies and local southern favorites like pecan rolls, buckeyes (peanut butter and chocolate) , caramels, and popcorn.

Around 11pm we found a hotel outside of Pittsburgh and settled in for the night. I fell asleep first as Isa researched on the internet for the next day’s  hiking plans at Raccoon State Park in Findlay Township, PA, just 30 minutes from our hotel. This time, nothing was going to stop us from getting our hiking fix.

The next morning we awoke after 8 hours of sleep to pack out and head to Raccoon State Park. Held back by severe intestinal pain and misery, Isa was frustrated by my obsession with finding a bathroom rather than hiking. But we made it by 10 AM to the park and found a descent map and trail, so we just started marching. It was beautiful. We were surrounded by deep brush and tall trees, many of which were turning orange and falling to the ground. It was a crisp cool morning and the leaves made crunching noises and we stepped on them. We could hear the unusual cry of birds above us as we hiked deeper into the forest. My mind and spirit got lost in the pleasantry of the hike until Isa asked what time it was. We had to catch our flight back to San Francisco at 3pm which meant that we had only until about noon to hike. It was already 11:15. Darn!! According to the map, we should have intersected a road soon, so we kept saying “Five more minutes. If we don’t find the road, we will turn back.” That turned into ten, then fifteen more minutes. Finally in the distance, we saw a road, but the trail headed in the opposite direction. So what did we do? We bush-wacked through the forest until we came upon the road. We followed the road back towards our car, passing Raccoon Lake on the way, and admiring the beauty of the fall morning. The lake was so peaceful- there was a grey haze, a distant motor boat with man fishing in the middle of it, and it was surrounded by gorgeous lush green, yellow and orange foliage-covered hills. We marched in a rush toward the car, which was over 1 mile away. At last we arrived and headed out of the park. We stopped at a local farmer’s market and bought some farm fresh bread and cheese as an alternative lunch from the usual options of fast food. Inside the shop there were baskets filled with apples, bell peppers, squash, tomatoes, green beans, potatoes as well as fresh milk (in glass jars) and homemade pies for sale for very reasonable prices. We bought homemade caramel apples, popcorn balls, and chocolate covered marshmallows as treats. Outside there was a pumpkin patch and signs advertising next weekend’s harvest festival. Again, true America.  I can’t believe it’s autumn already! As we drove out of the countryside, dressed identically in our souvenir t-shirts that stated “Take Me Home Country Roads” (and on the back… “To Morgantown, West Virginia”), we sang happily to John Denver’s song for the last time, cherishing these highly cheesy moments together, but feeling truly content. Caramel apples, good health (minus the gut), the warm buzz after a vigorous hike,  the joy of being with my twin, gorgeous scenery and perfect weather- who could ask for more? As John Denver would say, this was “almost Heaven…” 

We headed toward the airport with our bags full of treats. At the rental car return, Isa had to explain why the left mirror had gone missing. “It just fell off in the middle of the freeway.” Long story…

We boarded our flight and promptly both fell asleep even before takeoff.

We are so grateful to have these amazing travel experiences so often. Being invited to speak in parts of the USA that we would probably never go to offers unique perspectives to me. What would life be like if we lived in a small town? How do other people in America live? Politics, lifestyle, religion, regional differences aside, aren’t we all the same, just trying to survive, just trying to find joy and meaning in life?

Thank you for reading this long post again.

ANA STENZEL

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