It's All I Can Do

Day 87 – Monday, August 25, 2014

This morning, the quick witted, the intelligent, the humorous Adam picked me up from my hotel a tab past 7:00. First stop? Yep, McDonald’s for a couple of breakfast burrito meals. I love those potato cakes, or do they call them hash browns? Adam also enjoyed some of McDonald’s scrumptious delicacies.

We went to the park to start our run where I’ve started nearly every run with nearly everyone in Eau Claire. As we ran, we came across two groups of college students who were also running, one female, one male. Love that young energy around colleges.

Pat’s son Mike, pulled up next to us for a while. If I understand it correctly, Mike is taking over his father’s personal finance business and has earned the same trust as his father with the clients. Adam also is in the personal finance business. There is a difference between the two approaches, but I’m not sure though what they are. Personally, I would trust either man.

As Adam and I cruised back to the park where we began, Bob Frie was waiting for the “David” hand off. Bob is an optometrist. Bob and I ran another loop around the park.

When Bob and I returned to the park, Jenna was waiting for the next “David” hand off. Bob ran with Jenna and I for a while, suggesting that it was to make sure Jenna had a handle on how to safely guide me, but, um, with the exception of Roger Nelson in Spokane, Washington, I do not believe any of my guides so far on this run had any experience. So far, so good.

Anyway, at some point Bob took off and headed back to the park. Jenna and I were cruising along and she was telling me quite a story. I’m not sure if it is for public consumption, so I’ll just say I am impressed with her resilience and courage.

We were deep into a conversation about fear and courage, when I received a call that a local TV station reporter was back at the park waiting to interview me. No sooner did I complete that call, when I received another call from a radio station to do a live interview – right then. With the radio interview completed, I received yet another call from yet another TV station reporter who was also waiting back at the park for me.

On the way back to the park we brought the conversation back to Jenna. I really wanted to hear more about what she is facing in life.

When we returned to the park, sure enough there were news people galore, including a newspaper reporter. He went first. He and Jenna had many connections and it was fun to listen to them talk about all their friends they knew in common

Pat Toutant showed up also, which was good. He had contacted the various news media before I had arrived on Friday morning and had hoped they would have done a story about the run upon my arrival. It was good to see what he had worked hard to make happen, become actualized. He also stated that two companies, I believe he owned at least one of them, possibly both, were going to make two donations through me to the cystic fibrosis Foundation, one donation in the amount of $2,000.00 and the other for $1,000.00. He even told the newspaper reporter to print that; the reporter did, but, I do not think that was necessary, as Pat strikes me as a man of his word.

Next up was a male TV reporter. At the end of the interview, he used the word, “y’all” in an off the air sentence. I couldn’t resist.
I said back, “Y’all ain’t from around here, are ya?”Turns out he is originally from Texas. For me it has been absolutely fascinating to learn where the various reporters have come from as I get interviewed along the way.

Next up was a female TV reporter. She said she saw the press release for this/our story at the end of the previous week, and assumed that it would have been covered over the weekend. She was the TV anchor over the weekend and so she could not be at two places at once. She was shocked when she saw this story had not been covered yet when she arrived at work today, so she jumped on it.

In these smaller markets, the TV reporter is also the camera crew. I have become accustomed to being videoed by the TV reporters, sometimes quite in depth, but this young lady seemed to be an artist in videoing. I easily put more than a mile on running back and forth with Jenna, Pat, then Corey, as she videoed us from every angle possible. She really put a lot into making sure she had the perfect shot for the TV article she would be doing.

After the dust settled from all of the reporters, Pat and Corey ran with me. Someone was kind enough to offer a luncheon at their home for me. It was on the schedule for the day, however, Pat wisely suggested that Corey was there to run with me, not just for the cameras, but for the sake of the run itself.
So, that is what we did.

The three of us ran until Corey had to break it off and head home. Corey had even hired a baby sitter for her twin one year old daughters just so she could run with me. Corey is a nurse anesthetist, just like Dan is. The two of them work for the same group. She told me that the group is very supportive of one another and they look out for each other. When I ran with Trent (who is also a nurse anesthetist) in Coeur D’Alene, he and his wife (also a nurse anesthetist) once worked for a group of nurse anesthetists in Minnesota, who were not supportive of each other. That was one of the factors in their moving to Coeur D’Alene – to get away from such a group.

At some point while the three of us were running, the male TV reporter called and wanted to do a live shot during the 5:00 p.m. airing of the news article about the run. I was to have dinner with Adam and his family this evening, so Pat contacted Adam to make sure he could make it for that. Yep, Adam would pick me up from my hotel room, bring us to the park for the live shot, and then off to their home for dinner.

Pat dropped me off at my hotel, where I showered and got a bit of rest in before Adam picked me up.
Adam and I headed off to the park, where we met the TV reporter and a cameraman. Adam and I were positioned roughly 75 feet away from the reporter and were given a sign as to when we were to start running for the live shot. We were to run past the TV reporter as he introduced his news segment about the run. Either the reporter or the cameraman gave the sign to begin running. After we ran past the reporter, we were to stand, just Adam and I, and act as though we were talking (for the background video), which we did.

I have to say, working with the news people along the run has been educational and fascinating. There is a lot more creativity to reporting the news than I had ever imagined. Each reporter gets to put his or her own creative energy to the pieces they do and, I finally learned that when I am questioned while being videoed, I can re-answer the questions until I get them right or say what I really mean. It is then up to the reporter to use which ever answer I give, so, it’s okay to make a mistake, I can correct them in a video shooting. In the beginning I thought I had one chance to answer each question, as if they were live shots.

After the news segment, Adam and I went to his home for dinner. His lovely wife made quite a dinner, which included a salad, a huge lasagna, and dessert. Ah, but dinner with them was much more fun than three adults sitting around talking. Their children and a few of their friends joined us. Their children are in the area of ten years old – give and take a few years in either direction. From memory, I think they had three children.

Dinner with the children was a blast, all those children talking at once with a lot of energy and excitement. It was impossible for me to follow even one conversation, as energy levels and voices rose and fell repeatedly. Then, just like that, the children were done eating and they were gone. I really missed their energy after they left to go about the business of children – playing.

However, the adult conversation with Adam and his wife were equally good as well. After we were all done eating, Adam’s wife stated that there was still about a half a pan of lasagna left. Had I known that, I would have skipped dessert and kept plowing through the lasagna; the lasagna was that good.

After Adam dropped me off at my hotel, I was done, done, done for the day. What a great day.
Total miles today: 20:48.

Day 86, Sunday, August 24, 2014

This morning Adam picked me up around 7:30 from my hotel. First stop? Mickey D’s for my drive through breakfast. I love me a breakfast burrito meal, or two. Off to the park we went where we met up with “The Human Guard Rail,” the man, the myth, the legend, Matt.

We turned into the wind and began putting time and distance behind us. As we ran we were joined by three other people, mom, pop and daughter – Debbie, John (I hope I am correct with his name), and Katie. Lots of runners mean lots of fun conversations – and there was.

Katie is a nurse, working in a cancer ward, and enjoys what she is doing. I have a great deal of respect for those who work in medicine. That respect is even greater for those who work with people who are at the end of their lives. A positive though, is the increasing majority of those who battle cancer and go on to live long lives.

After completing one loop around the park, about five miles, we headed off to the Trinity Lutheran church, where Pastor Jim Page is one of the pastors. I sat with Adam, his wife and their family.

In case you were wondering, yes. I was still in my wet, smelly running gear. On top of that, I had not had a haircut since early June. So there I was, bushy and smelly in a church pew during a Sunday service.

Near the end of the 45 minute service (the Trinity Lutheran pastors pride themselves on getting everyone out quickly on Sunday services.), Pastor Jim asked Adam to bring me to the front of the church. He allowed me to speak to the congregation about the run and why I was doing it. Then we returned to our pew. At the end of the service, Pastor Jim said there would be a collection plate in the rear of the building for those who would like to donate to the run/cystic fibrosis and that I would be in the entrance/exit area for those who would like to talk with me. I’m not sure how many people I spoke with, maybe ten or twelve. (By the by, running gear “ripens” as it dries on a body. Those were brave people who spoke with me, or, they had no sense of smell).

After the church crowd thinned out, Adam hurried me along so he could get me to the next group of runners who were going to be running with me and were patiently waiting. As we approached Adam’s vehicle, Pastor Jim came out to the parking lot and handed me a bank bag and said it contained roughly $800 in donations. Talk about a “Kodak” moment. “Huh?” “What?” I replied. I was hoping there might be maybe one or two hundred dollars in donations to cf, but $800? Did I hear that right? Yes, however, I certainly did not want to be handling that kind of money, that amount of generosity, so I asked if it could be sent to Renee to take care of. No problem. Adam, who owns his own business, would take it and convert the cash into one large check and send it to her along with the individual checks that were included in the bag.

Whew, what a load off of my mind. THANK YOU members of the Trinity Lutheran church. THANK YOU Pastor Jim. THANK YOU Adam.

The next people I ran with were Paul, the president of a local running club, who is a semi-retired computer science professor, and Tracy. Tracy will be doing the Wisconsin Ironman on September 7. The heat and humidity were already high, but we ran on a trail that, for the most part, had plenty of trees.

We ran an out and back course, and, as always with runners, we had some great conversations. Turns out that after the earthquake in Christchurch, New Zealand, an opportunity opened up for Paul and his wife. Some people who were to go there and teach computer skills backed out. Paul got the call to fill the void and took it. The movie “Lord of the Rings” was filmed there. Paul said it was every bit as beautiful as shown in the movie trilogy.

A little over five miles out, we started our rewind. Roughly one mile from the parking lot where we started, I was out of water, and we were out of trees. Not a good combination. The sun was beating down on us – that was brutal.

I said good-bye to Tracy and went home with Paul for lunch. He offered me some orange juice to quench my thirst. You know, when you are thirsty, orange juice goes down very nicely, and quickly. Paul made a load and a half of scramble eggs with veggies for me, his wife, and himself. All that food went down well also.

After being stuffed like a Thanksgiving day turkey, I was whisked off to my room so I could shower and get some down time before heading off to the next in this day’s adventures, a trip to Scheels, an outdoor store that also carries running gear.

Pastor Jim and his son picked me up for that shopping trip. As we sat, waiting in the shoe department for a sales clerk, Pastor Jim’s son was making “fart” noises somehow with his hands. I think he was doing them by placing his hand behind his bent knees. Pastor Jim politely asked him to stop doing that several times. Me? I was trying to figure out how he was doing that, and try it myself. I am not the person you want around when your children are playfully being, well, children. My “inner boy” is always looking for an opportunity to play with other children. Fortunately for Pastor Jim I could not see how he was doing it, and gave up.

My first day in Eau Claire when I ran with Pat Toutant, he told me that he took over directing the Eau Claire marathon, and had directed it for the first time this year. Pastor Jim expanded on what Pat told me about Pat’s impact on the marathon. The former director did an okay job, but Pat took it to a whole new level. From what Pastor Jim told me it was very well organized. One thing that was obvious when running with Pat is that he is always thinking about how to improve the marathon. I am thinking that if the Eau Claire marathon is not on your radar, rethink it.

When the clerk asked me what I wanted in a running shoe, I told him “Vibrams.” He replied by telling me what I already knew, that they are facing a law suit. He wasn’t keen on Vibram’s, that’s for sure, and he kept yammering against the company. I told him that prior to wearing Vibram’s, I suffered from severe and chronic plantar fascitis but since wearing them for running, I do not any more. He kept yammering. I told him I used to suffer from severe and chronic blisters, especially on my left heel, but not any more, since running in Vibram’s. He kept yammering. Seems like we had a pattern going, huh?

Scheels sold the shoes at cost and Dan picked up the rest. I just could not bring myself to pick out anything else as Dan had suggested yesterday.

Pastor Jim and his son then dropped me off at Heather’s home. Originally Heather was to run with me, but she is a wise woman. With the heat and humidity she leaned against the idea and instead, her husband and her put together a very nice dinner, complete with burgers, brats and hotdogs, plus all the fixin’s.

Her parents were also there and an offer was made that I could go out on their pontoon boat after dinner. I knew, after eating all that food and the day being so hot, humid, and draining, that if I went out on the boat it would not be long before my eyeballs were checking my eye lids for cracks. Heather drove me to my hotel and I went out to the parking lot and walked back and forth to get the last of my miles in for the day. Walking around the park near my home in DeKalb, Illinois, or out on good old Nelson Road, I can walk a mile in 18 to 20 minutes, but in hotel parking lots it takes 25 to 30 minutes. I have to be very cautious in parking lots, so I walk slowly.

Got ‘em done. 20 miles on the button.

Day 85, August 23, 2014, Saturday

Last night there was some confusion as to where I was to meet the “Sole Sisters”, but that was all resolved by morning. “Sole Sisters” is a local group of women that run together in Eau Claire, Wisconsin. Cool name for their club/group, huh?

Pat picked me up from the hotel room around 7:00. We made a quick trip through McDonald’s so I could get two breakfast burrito meals. We then headed off to a local park where he and I were to run together for a bit, then would run with the Sole Sisters. I shoveled down the burritos, the two potato cakes, one of the drinks, and away we went. We ran out and back just enough to get one mile in before joining the Sole Sisters. Pat, myself, and the Sole Sisters headed off in the direction of a running track at the Memorial H.S. I’m not sure at what point Pat headed back to the park and his vehicle.

Two things that really come through with Pat; one, he has some of the best people skills one could imagine, as he is genuinely a caring man; and two, he’s a focused businessman. Two great traits all rolled into one.

When the ladies and I got to the track, we did what you do at a track, run around in circles, well, track shaped circles. The advantage to running on a track for me and my sighted guides is that I do not have to run tethered. That’s how we ran, “reins free”, which makes it easier for all to focus on and enjoy the conversations.

At the track a few other women joined us, along with one young gentleman, well, young to me, maybe in his thirties. It turns out he wasn’t connected to any of the women, but that he just saw a group of women running and found himself inspired to run with them. When he said that, he got a lot of chuckles from the ladies. Who could find fault with his thinking, huh?

As we ran, Karen, a medical doctor (pediatrician) ran on my left side, and another woman, Natalie or Nicole (I apologize for not being sure, I meet so many people it is sometimes hard to remember names) was on my right side. At some point in the conversation I brought up my wife, Chris.
“Married?” Nicole/Natalie said loudly.
“Yes, I’m married,” I said. “Why?” I continued.
She said, “We were going to fix you up with someone.”

Well, here’s the scoop. I do not wear my wedding band for this reason. Chris and I bought a home that was built in 1894, the garage was built in the 1930’s. The house was painted beautifully, but the garage had not seen a paint brush or any care in probably decades. The insurance company gave us the ultimatum of fixing up the garage or losing the insurance contract. This was a no brainer. The garage needed to be repaired and we are two fixer upper types.

I began sanding and painting, and replacing missing boards on the garage. That’s when we went shopping for my wedding ring. My hands were swollen from the beating they were taking, and the ring fit snugly.
While I was in the process of making the garage “pretty for the picture,” I realized that it desperately needed to be rebuilt. For the next three years I rebuilt the garage and the front porch. My ring still fit snugly.

After those two home projects were completed, I began running again and my hands thinned out. While grocery shopping one day, I reached into the cart and my ring went flying. Chris pounced on it like a cat on a mouse. It was decided that it was best for me to wear it only on special occasions, if even that, since it slides off so easily now.
By the by, Chris misses me a lot on this run, but, to her credit, she knows I have to do this for my granddaughter and knows that this run has the potential to help a lot of people. “It is bigger than the two of us,” is what she often says. A class act, huh?

Back to the run on the track.

At some point in my many conversations with the ladies, Karen brought up something that shocked me to the bone. I thought that one could only have the cystic fibrosis gene if it were passed on from a parent (either one). It turns out one can acquire the gene in the womb, probably in the early stages of development and it is called, “spontaneous mutation.” A man and a woman, neither of which carry the cf gene, could produce a child that does and that child then could grow up, meet someone else that has the cf gene (his or her parents may not have the gene either) and produce a child with cystic fibrosis.

I have been wondering if it were me or my ex-wife that passed on the cf gene to our daughters. Turns out, it could be neither of us. As both daughters have the gene, it is more likely one of us does have it.

At some point during the run, the heat of the day was getting to me and I needed water. Those ladies really thought ahead. They had coolers in their cars full of cold beverages and snacks. Ya just gotta love women… they think about these things.

When my Garmin buzzed to indicate that I had run 15 miles, it was break time. Angie drove me to my hotel room so I could shower, as she and I were going to Karen’s home for lunch. She dropped me off, went home for her own shower and returned to pick me up. Karen had made enough food for an army. Good thing, because I can eat like one. Wow! Was it good stuff, burgers and the like.

While we were eating, Angie and Karen began a series of conversations that seemed to have no way in for me. I had this vision during their continuous conversation.

When I was a little guy, the girls would often play “double Dutch” jump rope. Two girls would have two jump ropes and would stand opposite of each other. The same rope would be held in the right hand of one girl, and the left hand of the other as they faced each other. In their other hands, another rope. They would then twirl them in a circular fashion, left, right, left, right. Then, another girl would jump into the middle of the two moving ropes and jump up and down, just as she would if it were only one rope being twirled by the other girls. Well, I’m not sure how many times I tried jumping “Double Dutch” style, but I was never successful. One of those things I would like to have conquered just once, but didn’t.

There I sat, listening to Angie and Karen talk back and forth, seemingly without even the time of a sixteenth of a note between when one stopped and the other began. “How do they do this” I wondered. Lots of caffeine? I was able to “jump in” occasionally, however, it was as awkwardly as with Double Dutch jump rope.

Anyway, my eyeballs were slowly lowering to half mast and I was going to be knocking out some more miles later with a man named Dan. He is a nurse anesthetist, and Karen, a pediatrician, has the greatest amount of respect for him. Karen offered a bedroom in their basement so I could catch some Z’s. Her children refer to that bedroom as the deprivation chamber – perfect. After my snooze, I met her husband, Kirk. He has a very cool part-time gig in which he is a radio disc jockey for a couple of radio stations; one of them, as I recall, he said was a country-western station. He does this all from a computer at their home. Occasionally he has speaking parts, but the play list is done automatically. A very cool gig, if you ask me.

One of the problems I was having in the high humidity was getting my laundry to dry in my room. Instead of getting clean, by not drying, they were turning green, or whatever color mildew is. I generally do my laundry by hand in my rooms and hang them to dry, so when Karen offered to do my laundry while I was their home, you bet!

When I came to, it was time to put on my clean, dry, nice smelling running gear and prepare to meet and run with Dan. Karen and the other ladies put together a very nice “goody” bag for me. It included a large bag of pretzels, peanut butter, running socks from the Mayo clinic/hospital where she works, and a few other goodies.

Dan picked me up from Karen and Kirk’s and away we went to the park where nearly all of my running has been so far. As Dan and I ran, the topic of Karen came up. Dan has the greatest amount of respect for her also. It was very nice to know how highly they thought of each other, both as professionals and as people.

Dan and his wife, Allie, had a pediatrician all picked out when Allie was pregnant with their first child, William, however, it was Karen who was on call when he was born. Karen was so thorough, so professional, so caring, that a new vote was taken and Karen became their pediatrician.

After the run we headed off to Dan and Allie’s for dinner; spaghetti and garlic bread! Now that’s good stuff, plus a salad, and, for dessert, a brownie.

During our conversation at their home, Dan and I somehow struck up a discussion about any running gear I might need. What prompted this discussion was that as I understood it, Pastor Jim was going to take me to a sporting goods store named Scheels the next day. Dan was encouraging me to get anything and everything I need, including compression socks to aid in recovery after running each day. I’m not sure why I feel this way, but I am uncomfortable with the idea of being “showered” with expensive gifts.
After eating, it was time for Dan to whisk me away to my hotel.

Total miles today: 20.4

Saturday, September 20, 2014 Restructuring Underway

We are slowly putting together the “Its All I Can Do,” logistical team. At this time I can tell you that they are an interesting group of people (characters), each with his or her special skills (quirks). I’m not sure how it will look when the team is completed and all their love (funny ways) is combined for one unified goal, doing what we can for those with cystic fibrosis and those that love them and deal with it on another level.
We, the team, will be continuing to raise awareness of the disease and raising funds for the Cystic Fibrosis Foundation. Meanwhile, I’m keeping my wheels warmed up and ready to go.  I am  fueling myself with my favorite foods, black beans and rice, and, mashed potatoes.

Day 84 – August 22, 2014

Theresa wanted to make sure I left town with a full stomach before we traveled to Eau Claire, Wisconsin. She took me to a restaurant known for dishing out extra large portions. She has really done a great job of making sure I eat well during my time with her. After a gigantic veggie omelet, with potatoes and toast, I was stuffed like a Thanksgiving turkey.

There was an antique auto show going on in the parking lot as we ate. We checked out a couple of the classics. Most of them were from the 1940’s. That is, the cars were from the 1940s.

I’ll sure miss the sound of Theresa’s laughter, her high energy ,her cooking, and those delicious smoothies.

On the way to Eau Claire, Theresa was taking sales calls as she drove; rattling off item numbers like an auctioneer. It’s fascinating to watch a sales pro in action.

Theresa drove me all the way to the Trinity Lutheran church in Eau Claire, Wisconsin. When we got there, Pastor Jim Page and Pat Toutant were waiting.

Pastor Jim, is of course one of the pastors of the Trinity Lutheran church. Pat Toutant is a local businessman and the director of the Eau Claire marathon, which is held in May of each year. Both men are runners.

All I gotta say is, Holy moly Theresa really hit gold finding these two. After a few minutes of introduction, Theresa  and I said our goodbyes and she headed back to Minnesota.

We put my bags in Pastor Jim’s vehicle, and started on the route that Pat had mapped out for us. It was a five mile loop with on some paved trails that went through a couple of parks.  Along the trail we came across a statue of Paul Bunyan and his Ox, Blue. But, don’t tell anyone from Minnesota about this. As the story goes, the ten thousand lakes are the result of Paul Bunyan and his Blue Ox walking around the state of Minnesota.

As we ran, we came across some young college girls that were preparing to go tubing down one of the two rivers in Eau Claire. Pat called out to them and told them about my run and why I was doing it. Then he asked if we could get a picture of me with them.

“Sure,” they said.

I reached into my pocket and pulled out some of my “Its all I can do,” business cards to offer to them.

Then I thought, if they are going tubing then they are probably in bathing suits and would not have any pockets to put the cards in.

After we took a few pics, Pat and I were on our way running again. After traveliing about a  hundred yards  Pat said, “You know, when you and I were young, bikinis covered up something.” “Not any longer,” he said.

“Bikinis?” I asked. “They were wearing bikinis?”

“Yes,” he said.

“All of them,” I asked.

“Yep,” he said. “It’s become a trend among the college students her in Eau Claire.

“And those bikinis reveal more than when you and I were younger?”

“Yes,” he answered.

(Blink, blink) Now, where am I and what was I doing again? Oh yeah, running. And, with a little more pep in my step.

We cruised on into a local watering hole named the Court House for a couple of cold cups of water. In the humidity and heat, and the humidity and sun, and humidity and humidity, it was one of the best cups of ice cold water I have had in this life time.

When we got back to Pat’s vehicle, he made a phone call and got me hooked up with a motel stay. Then he called Pastor Jim to tell him where he could take my bags. A few minutes after Pat got me checked in, Pastor Jim showed up with my bags and brought them to my room where I was cooling down.

Pastor Jim placed my bags on one of the beds, then said, “Here is a bottle of shampoo and a soap container, as he handed them to me.” (They were together in a plastic bag. The way I packed them.) Then he said, “And here’s, … .”

All I could think of was, “What happened?” “Did one of my bags break open?”

Nope, Pastor Jim is just one heck of a nice guy and thought He’d help me unpack. But, I quickly told him the reality of my unsighted world. “I have to unpack, that’s the only way I’ll know where anything is.”

A bit later, Pat showed up to take me back to the park where I met Matt and Jessica for a run. Pat explained the route he and I took, and suggested they run the same route, which we did.

Jessica is a math professor at the university and teaches statistics. A woman after my own heart.

One of the many blessings in losing my eyesight, was that I got to go to college later in life. I loved math and was a math tutor for algebra, trigonometry, calculus and statistics. (Now you know how boring and weird I can be.)

I had a number of math professors tell me that I should consider going on for a PhD in math. I had to use a fairly strong magnifying lens to see the math problems in the books, and used felt tipped pens to work them out on paper. Eventually, I knew that I would no longer be able to see any of this. Working through a math problem in Braille could not possibly be the same as seeing a nice juicy, complicated problem unfold into its result before my very eyes. Weird, huh?

Then I told Jessica this true story.

I was tutoring a blind female friend at Northern Illinois University in statistics. Her professor, who I thought the world of, wanted my student to understand the shape of a bell curve, and what it would look like if skewed left and skewed right. I bought some clay and formed the three curves and “showed” them to her. But, she wasn’t able to grasp the concepts. So I created the three curves out of cardboard, then popsicle sticks then string. Still didn’t work.

I talked with her prof, but she still wanted our mutual student to understand what the bell curves “looked” like.

Out of desperation, I told my student this:

“As a female of the species, when you are standing and you are naked, you have two objects on your body that as you look down at them, they are bell curved. When you are laying on your right side, they are skewed left. When you are laying on your left side, they are skewed right.”

“Gotta it,” she said very convincingly. Then she reached over and touched the clay models I had made and demonstrated her new enlightment. Yep, she understood.

Anyway, back to the run.

Jessica was guiding me. Matt stayed on my right side and came up with a title for his position as we ran. “Human guard rail.” I like it!!

When we wrapped it up, Matt and I went to a Subway so I could stock up on sandwiches. No matter how much I eat for dinner, I still get hungry through the night and need something to hold me over till the mornings.

I got to my hotel and, I definitely needed to shower before dinner.

We had dinner at the restaurant attached to the hotel, and there was quite a crowd.

Being a Pastor is most definitely a 24/7 profession. A woman introduced herself to me and then spoke to Pastor Jim about someone who is struggling in life. Later on in the meal, Pastor Jim excused himself as he saw someone else who he needed to check in with who was also having difficulties.

It was obvious that Pastor Jim is perfectly suited for his chosen calling. He’s the real deal.

11.17 miles
1509.75 total miles run
$6,055.65 total funds raised

 

Day 83 – August 21, 2014

This morning for breakfast Theresa fried up some eggs and, made me another super duper smoothie. Brent picked me up around 8:30 and dropped me off at the track. He did not run with me today.

At 11:00, Kelly, the woman who brought me a bottle of water and a banana the other day, picked me up and we went to Theresa’s and so I could eat lunch. She brought me a barbeque pork sandwich, corn, chicken salad, and fresh strawberries.

We had a pleasant conversation, then she had to go to tend to her children. She asked if there was anything else she could get me and I requested a mocha frappe from McDonald’s.

After Kelly left, I headed out to walk around the neighborhood and get some miles in. I just happened to be near Theresa’s home when Kelly showed up with the substance of my addiction, the mocha frappe. My happiness in a cup. Once I got that down I took a snooze.

Theresa set it up so I would be running with a moms group this evening. She was thinking around 13 miles. I was thinking fewer. It was hot and humid, and I usually like to make 10 miles my limit, before needing a rest when running with others. I can run 10 to 20 miles on my own, because I am in control of the speed every step of the way. I can take a water break or just sit for a while, and not have to worry about inconveniencing anyone else. I had eleven miles done and figured if the ladies wanted to run ten miles, I would be in the bonus for the day.

Around 6:00 Katie picked me up and took me to a park where I met Amy, Alexis, and one other woman from the Mom’s Run This Town group. We ran through a wooded area on a paved trail. Along the way we ran past a garter snake that was crossing the trail, and came upon a deer on the side of the trail. It bolted back into the woods when we got near. There were a few little bunnies running around the edge of the trail as well.

As we approached the point where we started, I heard several women cheering us on. We ran 4.5 miles and the next group of women were there to run the same 4.5 mile loop with me.

For the second loop, I was guided by Michelle, and Melissa joined us. The other women ran the loop in the other direction, I think. As we booked along Michelle and Melissa were getting a bit tuckered out. Then Ashley, who originally was running with the other women decided to head in our direction and run in with us. Michelle and Melissa had slowed to a walk, so Ashley took over guiding me, and we ran the rest of the way. We were soaked to the bone from sweat because of the heat and humidity. As soon as we stopped running we became mosquito food. It wasn’t a matter of swatting them, it was more like wiping sheets of them off our bodies. As soon as Michelle finished the run, we hurried to get into her car.

Before heading back to Theresa’s we HAD to stop at McDonald’s for a Mocha Frappe with no whip cream.

Theresa said she was hoping to go out for ice cream after dinner, but I got back too late. I really enjoyed the delicious meal she made. It was on the spicy side; I love me some spiciness.

Later I talked to Renee on the phone. She said that Theresa got an email back from a Lutheran Pastor in Eau Claire, and it sounds like he is really on board, and the race director for the Eau Claire marathon is a member of his church. They both are on the schedule to run with me tomorrow when I get to town.

20.4 miles
1498.58 total miles run
$5,637.40 total funds raised

Day 82 – August 20, 2014

The first night I stayed at Theresa’s home she made me a chocolate and peanut butter smoothie. (Two of my favorite foods, in one drink!) She made me the same smoothie for breakfast yesterday. This morning she made me a fruit smoothie. As much as I liked the chocolate peanut butter one, I liked the fruit smoothie even more. I had another couple of mongo lunch meat sandwiches for breakfast today as well.

Theresa needed to head out of town at 6am for work. She arranged for a man named Brent to pick me up a little after 8:00, take me to the track, and run a few miles with me. Brent told me he is just starting to run to get into better shape. We did a mixture of running and walking, which suited me just fine.

As we ran, Delane Cleveland from 12 News community television arrived at the track. He interviewed me, then Brent. He said he likes to interview multiple people to make the story more interesting. I could not agree more. I always prefer to have other people interviewed along with me. Especially if they have a connection to cystic fibrosis and can provide some perspective on how the disease has impacted their lives.

After the interviews, Delane filmed Brent and I running around the track. I think Brent could have done without that part, but he was a real trooper. I think he was tuckered out after the run. To see the 12 News story click here.

As he was leaving, Brent saw a small building with an open restroom right next to the track. He came back and helped me figure out a route so I could get to the restrooms on my own. He fully understood how I use my white cane to feel for surfaces and landmarks. Brent solved my restroom issue, and I can’t thank him enough for being so thoughtful.

It really has been nice to listen to the Champlin Park High School Band practicing on the field in the middle of the track these past few days. Some of the pieces they’ve played sounded really great.

At 11:10am it was once again time for the CNN HLN interview. Right on time, the same woman from yesterday called and patched me through to the man who connected me to Mike the interviewer. I heard Mike begin talking about me, and the run. I was listening very carefully to every word he said, but the volume was extremely poor, and I wanted to make sure I could hear him ask me a question. Then, I heard my own voice. They were playing part of another interview I had done with someone else. This was unexpected, and threw me off.

Then, that interview sound track stopped and Mike asked what my granddaughter was like. However, as I began answering , I heard another voice, and I stopped talking until I realized it was mine. Then I began talking again, trying to ignore my own voice feedback. It was really hard to do, especially since I had never had that happen before. The sound of my feedback was much louder than the voice of the man interviewing me.

I answered the question about Kylie by saying that she likes doing crafts, and loves her little dog who is always attached to her at home. Then he asked a couple more questions, and the interview was over.

To me, the HLN interview had more of a circus feel to it, rather than a professional one. I couldn’t even tell when the interview was over. I said, “Hello, hello, several times” Hoping to talk to the man who connected me with Mike. The guy was there, and I told him about the feedback problem. He was surprised to hear that I had a problem, and quickly ended the phone conversation.

So, I called the station back. I wanted to know what I should do if I ever have that problem again. Should I say something about it while I am live on the air? Whoever answered the phone patched me through to a phone menu. Since I use an iPhone 4 and am blind, I do not know how to get to the button panel on the phone to press a number. So I called back and explained my dilemma. They patched through to the same phone menu. I called back. This time a man asked who interviewed me. “Mike” I said. “Which Mike,” he asked. I  told him I didn’t know. “Then I can’t help you ,” he said. I asked him if he could connect me with anyone who could answer my question about what is proper interview etiquette when dealing with feedback. So, he transferred me. Guess where? Yep, the phone menu. Here is what HLN ended up running, they didn’t use the interview at all.

Approximately an hour after the HLN interview, I received a text from a friend of mine who lives in Los Angeles saying he just saw the interview about me. I called him to ask which network it was on. He said it was on HLN. Imagine that.

I didn’t know this, but Theresa told Brent to bring me back to her home after he and I finished running. The idea was that someone would meet me at Theresa’s home and have a nice lunch for me. The woman was there waiting, and she left after a while. I felt badly when I learned that she prepared something for me, and she was waiting around.

Theresa came to the track to get me, and told me about the lady I was supposed to meet for lunch. I told her that if I had known that she planned for me to go home after only a couple miles at the track, I wouldn’t have agreed to it anyway. I like to get in most of my miles for the day first, then I’m all about being pampered.

Theresa brought me back to her home so I could rest a little. I had a run scheduled with two women later in the evening. Theresa had to work leading an aerobics class.

Around 4:30, Morgan picked me up and we went to her friend, Corrie’s house. From there we ran a little over four miles. Some of it was on  sidewalks, but most of it was on a paved trail in a wooded area. Boy oh boy, the humidity was a killer. Our clothes were soaked within the first half mile. It was a lot of fun running with those two. Afterwards, Morgan drove to the McDonald’s drive-thru so I could get my favorite after-run fix, a mocha frappe with no whipped cream. I think I am becoming addicted to those things.

24.4 miles
1478.18 total miles
$5,488.41 total funds raised

 

Day 81 – August 19, 2014

Yesterday I got a call from a local TV reporter who is stationed in Brooklyn Park, Minnesota. He said he wasn’t sure if he could interview me because I am staying in a neighboring town called Champlin. Renee and I had a lot of fun with this one. I mean, did he really need permission to cross into another suburb? Did he need special papers or something? Anyway, he called again today and said he thought he could do the interview because the High School track is actually in Brooklyn Park.

Last night Teresa made four sandwiches for me, and put them in the refrigerator. Two peanut butter and jelly, and two huge lunch-meat sandwiches, those puppies has some bulk to them. For breakfast I ate the meat sandwiches.

Tonight I have a dinner appointment with my friend Gregg Greeno, who I originally met in Jamestown, North Dakota, on Day 57 of the run. The track I ran on in Jamestown, and the football field, were named in honor of his father Rollie Greeno. Gregg and his family were in Jamestown for a funeral that weekend. When a local newspaper wrote an article about the run in Jamestown, Gregg’s daughter Hannah was my sighted guide for the picture. Hannah is 11, one year younger than my granddaughter, Kylie, who has cystic fibrosis.

Even though the High School track is across the street from Theresa’s home in Champlin, MN, it is apparently a complicated walk, so Theresa drove me this morning. Shortly after I started running, I received a phone call from CNN Headline News asking me to do a live interview. They said they would call me at at 11:10, and we would go live at 11:15.

When CNN called my phone I was transferred to a man who said he would connect me to Mike, the interviewer. He said Mike was on the air, and would prompt me when to speak. I could hear Mike on the line, but he could not hear me. Then the line went dead. Not a sound. This has never happened before. Thinking that maybe they do things a bit differently, I continued holding on. If I had been disconnected, I thought, it would probably be better if they called me, rather than me calling them. I have done several of these live phone interviews since I have been on this run, so this is not my first rodeo.

Around 11:18, I received a call from the man who “connected” me with Mike. He asked me what happened. I said, “I’m not sure, all I know is that I heard Mike on air for a split second, then the phone went dead.”

“Hmm, let’s try this again.” he said. And the phone went dead immediately.

At 11:23, I called the number that made the initial call to me, and spoke to the same man as before. “I’m not sure what happened,” he said. “We’ll have to get back to you.”

Later on I got a call from Fox News. They asked me if I could come to the studio for either the 3:30pm or the 5:00pm live news cast. Renee called Gregg Greeno to see if he would be able to pick me up from the track, take me to Theresa’s so I could shower, and to the studio for the 5:00 news cast. Gregg called me and said he would pick me up from the track at 3:00.

Just before noon, I received another call from CNN. They wanted to reschedule the Headline News interview for later today. The earliest they could do it was 3:00. I told them, unfortunately that would not work for me. The woman said she would get back to me later.

One problem I have with running on this track is that there isn’t an accessible bathroom nearby, and by noon, nature was calling. However, I was not alone. I could hear the High School band practicing on the field in the center of the track. So I knew that I would not be able to let loose in the great outdoors.

Talk about Buddha providing. Theresa had posted on her facebook page asking if anyone could check on me while I was on the track. Just as my bathroom situation was becoming serious, I heard a female voice talking to me.

It was a woman named Kelly. We shook hands, and she apologized for her hands being wet and cold because she just got out of the swimming pool. She said she brought me a bottle of cold water and a banana. Before we got into much of a discussion, I announced that I needed to find “The Little King’s Room.”

We got into her vehicle with her children, one boy one girl, and she drove to the High School. She corralled a high school student and asked him to take me inside the school, to the men’s room. I have to say, he seemed very mature for his age, and we had a great conversation to and from the men’s room.

When the young man returned me to Kelly, she explained that she thought it best that she find someone else to take me into the building, because she was wearing a bathing suit. “Yep,” I said in agreement,  “Especially with all those raging hormones going on in there.” She laughed then said, “Well, it’s not as if I am in a bikini.”

Kelly deposited me back to the track. She said she wished she could spend more time walking and talking with me, and she told me that she is not a runner. Non-runners like to flaunt that I’ve noticed. You know, that they are much too sane to do something crazy like running. Then she went on her way.

Shortly after noon, I received another call from the woman at CNN. They wanted to try and do the audio interview tomorrow at the same time as today. I told her that would work for me.

I wanted to get in 20 miles for the day before Gregg picked me up for the Fox interview. That way I could show the reporter my Garman with the 20 miles on it. I started to pick up the pace, but I knew it was going to be close. Just then Gregg called to let me know he was running a little late. Perfect, good old Buddha there for me again.

When Gregg showed up I had one lap to go. When we got into Gregg’s vehicle, he looked around and saw some homes across a road from the high school and said, “Theresa must live over there.”

As it turned out, we couldn’t find Theresa’s home and were driving around the neighborhood for a while. Just then Gregg got a call on his cell from Theresa and Renee together, asking him asking where we were. Theresa provided on site navigation and ran out to the corner so Gregg would know where to turn to get to her house.

When we got there, Theresa was on her way out the door to teach an aerobics class. She explained to Gregg how to get to the Fox studio. It didn’t seem like he fully understood, and said he would call his wife for directions. I said I willing to forgo the shower to give us more time to get to the studio, but both Theresa and Gregg insisted that I take a shower. Guess they were trying to tell me something.

While I was in the shower, Renee, having figured out that Gregg has a propensity for getting lost, called him back and gave explicit directions to the studio, because she knew we were already running late. As Gregg and I left Theresa’s, he said Renee had also texted turn by turn directions to his cell. We drove on a highway then exited. After a few blocks Gregg announced that we were going the wrong way, and turned around. The clock was ticking, and I was getting a bit nervous. Just then he announced, “Here it is,” and whipped into a parking lot.

When we got into the building, the security guard had to sign us in, and made a call for someone to come get us. A man came and took us to the “Green Room”. It really is green.

A gentleman named Vince introduced himself to us and asked if we needed anything. He said he would escort us in when it was time. He told Gregg he could come with also. I thought that was very cool. That way Gregg could be close to the action.

I was brought in and seated on a very large couch. The studio was very chilly. The reporter Karen Scullin sat down on my right side, and said she would be conducting the interview. She told me how she used to run a lot, but got injured. She said she still runs three or four miles, a few times a week.

Karen was very professional and went over the bullet points that we would be discussing. Then she asked if there was anything I would like to include, and I said “No.” Then she started to ask me about Kylie, what she was like, and how she was doing. However, in the background I heard a booming male voice counting down. “30 seconds.” “20 seconds.” “10 seconds.” “5, 4, 3, 2, 1.”

She of course was quite used to all of what was going on around us. For me, I thought it best to shut-up and be fully ready. This was the first time I had ever been interviewed in this fashion on live TV. In all other the interviews I had done, I stood in front of the person interviewing me.

I was not sure if I was supposed to look at Karen or face the camera. And there was no opportunity to ask once it all got under way. Instinctively I turned in her direction each time she asked a question. After answering each question, I thought I probably should look forward. Then she would ask another question and I would look in her direction.

At the end of the interview, when I knew we were off camera, I told her about my confusion. She said I did fine, and there were cameras all around us. She said it is their job to follow me and make it look right. Here is a link to the video.

Karen began asking me more about Kylie. However, as we were speaking softly, I could hear a male anchor doing the news. I felt uncomfortable and said, “Maybe we shouldn’t be talking now.” She said it was alright, and this level of conversation goes on all the time while someone else is on the air. She said It was probably happening while she was interviewing me. I answered her questions about Kylie. She was a very caring person.

After the interview, Gregg and I went to dinner at a restaurant where his neighbor Carmen works. He asked for her when we were seated. Gregg told her about me and what I am doing. She was very interesting to talk to and had a lot of positive energy. As we left the restaurant, the manager opened the door for us and said that Carmen told him about the run.

We stopped at a Dairy Queen for a couple of Blizzards. Then Gregg brought me back to Theresa’s. Theresa told me about the workout she put her students through. No doubt they love her and get a lot out of her routines.

She said she talked to Renee and they agreed that she should send emails to various Lutheran churches in the Eau Clare, Wisconsin.

Renee usually sends out emails to all of the Lutheran churches in each of the towns I go to. We ask that the pastor ask their parishioners if someone would volunteer to pick me up from my hotel, take me through the drive-thru of a fast food restaurant, then drop me off at a running track, and in the afternoon, reverse this process. So far there have been some retired folks who have helped me out, and they seem to thoroughly enjoy it.

When Theresa picked me up from the hotel yesterday, I asked her to do two things. Take me to a track, and drop me off at a Lutheran church afterwards, but she refused to drop me off at a church and drive away. I told her, “The idea is for me to just walk in on them and tell them what I need.” That is probably why she offered me her spare bedroom.

The only Lutheran pastor that has helped us out so far is Pastor Dale. I met him when Katherine dropped me off at his church in Fergus Falls. I caught him off guard, and he offered to take me to a track and pick me up that night. Instead of asking members of his congregation to help out, he did all the pick-ups and drop-offs. On my last day in Fergus Falls, Pastor Dale told me that he got several ideas to use in his future sermons from our time spent together.

But so far, no other pastors have gotten on board from a cold-call (or email). It has been the same with Masonic lodges. The only Mason we got support from was Roger Nelson in Spokane. He is the Worshipful Master of his lodge and a runner. And he also had experience guiding a blind runner for the past seven years.

20.1 miles
1453.78 total miles
$5,175.37 total funds raised

Day 80 – August 18, 2014

On Friday (Aug 15th) I ran with Jeanne, Julie and Michelle in Alexandria. This morning Michelle’s sister, Theresa, picked me up from my hotel at 9am in Minneapolis. Minneapolis was looking a bit shaky as far as hotel stays.  Brent from Discover St. Louis Park was able to get me 3 complimentary stays in hotels, but all in different places. I stayed at the Double Tree last night, and was supposed to move to the Spring Hill Suites today, which is Monday, and then I don’t have another complimentary stay until Thursday. Apparently there is a lot going on in the Minneapolis/St. Paul area and rooms are scarce and costly.  We were very thankful for the rooms that were offered, but it is difficult for me, traveling alone and not being able to see, to move every single day. It gets to be a bit disorienting and frustrating.  Then there is the problem of not having a place to stay Tuesday and Wednesday nights.

In my blog post on the 15th I posted that I really enjoyed the egg sandwich at Caribou Coffee in Alexandria, so Theresa suggested we go to a Caribou Coffee in Minneapolis.  I tried two different egg sandwiches, I can’t remember which I preferred, both were winners.  Guess I’ll have to go back again, to figure out which sandwich I liked better. I’m actually salivating right now thinking of those breakfast sandwiches.  Good stuff.  Oh, yeah, I guess I better get on with the rest of the blog.

Theresa said that because she does outside sales, her work hours are somewhat flexible. She had a few sales calls to make today, and she drove me to a track in a suburb of Minneapolis called St. Louis Park, because that is where my hotel stay is tonight.

What a gorgeous track it was.  It was brand new with fresh white lines dividing the lanes.  It was very easy for me to run on. As Theresa and I walked around the track, she said that several of the lanes were blocked off.   “Three or four inside lanes?” I asked.  “No, four of the outside lanes.” she replied.  “Huh?” Generally if any lanes are blocked for use by the public at a running track they are the inside lanes,  to protect them from over use and preserve their integrity for competition. I was curious to why the outside lanes were blocked off.

It turned out to be a thick cloth like material laying across those lanes, that had been folded over.  If fully extended it would stretch across all the lanes to protect the surface of the track from football and soccer players cleats  as they walked to the field in the center of the track.

There were a few women walking/running around the track, and Theresa went into full blown sales-pitch mode, telling them what I was doing as far as the run.  Wow, did she sell them. All three women were immediately on board as far as being sighted running guides for me.

The plan for today was Theresa would pick me up from one hotel, get me fed and to a running track, then later pick me up, we would stop to get something to eat, and then she would bring me to the Spring Hill Suites in St. Louis Park. However, as Theresa and I continued walking around the track, she mentioned that she had a spare bedroom, and I was welcome to stay with her. Not wanting to be too much of a burden, I didn’t reply immediately to her offer. She mentioned that there was a high school with a running track right across the street from her home, and again she extended the offer. I hesitated, but she assured me it would not be a problem for her, so I accepted, and we drove to Champlin, where she lives. It took us about 45 minutes to get there, I didn’t know she drove so far, just to shuttle me to and from the track.

When we arrived she drove to the track by her house and said it looked like the gates were locked. We went into the High School and Theresa asked to see the principal. When he approached us, Theresa gave him her pitch about the run. That principal never had a chance.  He was immediately on board, and said he would have the gates opened. He checked with the activity director to make sure there would be no conflict with any scheduled use of the track and my use. The activity director it would not be a problem, and said he would make sure I could access the track at 7:30 each morning during my stay. It would be locked at 4:30 each afternoon, however.

We went to Theresa’s house to fill my water bottles, then she brought me to the track and headed off to make her sales calls.

Theresa returned to the track before 4:30pm. She wanted to give me plenty of time to get settled into my new room and get acquainted with the lay out of her home.  She made a very healthy and delicious dinner for us. She’s a great cook.

11.2 miles
1433.68 total miles
$4983.00 total funds raised

Guest Blogger: Jennifer McKenna

Background (written by Renee)

David met Jennifer McKenna on Day 7 of the It’s All I Can Do Run in Coeur d’Alene, ID. He was only 150 miles into the run back then. It is hard to believe how much has happened since, but the first days of the run are very memorable to both of us. Coeur d’Alene holds a very special place in our hearts; the support we found there was overwhelming.

Jen found our blog online and contacted us through it. When David arrived in CdA at the Holiday Inn Express, she met with him, and guided him around so he could understand the layout of the hotel inside and out. Jen has a flexible job, and David was able to call on her when needed, for any kind of assistance. It was a great comfort to me that she was so supportive of David.

In spending time together Jen told David what it is like for her living with cystic fibrosis. He asked her if she would do a write up for the blog. Here is what she had to say about writing her “dissertation”:

Hi, David and Renee!  Writing this was weird, in a good way!  I felt comedic, then sad, then self-conscious, then amazing, and then totally grateful and inspired by Dave and all the other people I knew who ever spoke out about CF. 

In telling her story of what it feels like to be an adult with CF, Jen give it to us straight. She talks about going through denial, and then dealing with the anxiety and depression that comes with knowing that she will continue to suffer the effects of CF and live a shortened life. Her account is brutally honest and compelling.

Jennifer’s Story (May 26, 2014)

62546_426827901754_4039469_nHi, I’m Jennifer McKenna. I am 36 years old, and I have cystic fibrosis. Dave offered to let me write about what it’s like to live with this illness, and it’s my pleasure to do so!

Diagnosis

I was diagnosed with cystic fibrosis when I was a few months old. My parents were concerned, because I wasn’t gaining weight, and I wasn’t a very loud crier. Mom said I kinda hissed, while most babies are supposed to wail. So, thankfully, my very loving parents took me to the doctor to figure out what was up, rather than just thinking they got lucky with a low-volume crier!

Childhood

Let’s jump forward to what I can actually REMEMBER first hand, as a kid growing up. I grew up pretty symptom free! I am one of the lucky ones, who have a mild case of CF. One thing I DO remember, though, is that I had a CF child’s appetite! One of the symptoms of CF is overproduction of mucus in mucus linings, and because our intestines are mucus secreting organs, people with CF don’t absorb their nutrients as well as most people. What that looked like for me, as a 6 year old, was that my dinner servings were the same size as my dad’s! Friends would join our family for dinner, watch me eat, and tell my Mom, “Jennifer is such a good eater!” My mom NEVER had a problem getting food down my gullet –with the exception of enzyme powder. If you have ever had the displeasure of having pork-derivative enzyme supplements mixed into your Nestle Quik, you know what I mean! I would take nearly an hour to drink that thing down, before I could eat my meal. One day, my Dad tried to demonstrate how “good” it was, by taking a sip, and he almost messed it up by spitting it out! In a later conversation, he said the only way he got that mouthful down, was because I was watching him so closely. Mom and Dad didn’t like “forcing” me to drink something that tasted terrible, but they knew it was important for me to drink this stuff. This supplement helped break down the food, while it was still in my stomach. That way, when the foody mush hit my small intestine, some of the work that my small intestine would do was already started, so I could hopefully absorb more nutrients, during the time that the food was in my intestinal track. I am happy to report, though, that I graduated to being able to take capsules of enzymes, and I got to quit drinking that miserable powder!

So, other than the taking a lot of pills, I didn’t have a childhood that was any different from other kids. Well, I burped and farted a lot… and I had a reputation for some powerful bathroom visits. That wasn’t easy, socially –but really, I could play hard with the best of the kids. Thinking back, I can now notice how my lungs were starting to show more signs of CF, in high school. I hadn’t thought much about it, since coughing seemed so normal, by then. I think I got my first nebulizer sometime during high school. But I remember a lot of kids and even a teacher asking me if I smoked. I had a “good smoker’s hack.” Well, I guess being known as that was as good as being known for anything else, back then.

Early Adulthood

In my first year of college, I was working part time, going to school full time, and playing a lot. I was definitely “burning the candle at both ends.” I was getting pneumonia at least once a year, and pseudomonas infections more frequently than that. That’s when my mom and doctor really started asking me to acknowledge my disease. I fought my mom and doc every part of the way, because I didn’t want to admit my limits. In that year, I learned that I was supposed to be doing nebulized treatments twice a day every day. Of COURSE I didn’t do them! What was I missing, in doing that? I was missing regular treatments of albuterol and mucus-thinning Pulmozyme. These meds would dilate my airways, reduce inflammation, and help move nasty phlegm out of my lungs. What I ignored was that my CF was advancing and my lung tissues were inflaming. I wasn’t doing anything to help myself. I didn’t feel pain or discomfort, and I barely could notice when I was sick. I didn’t really believe my doctors or my mom, when they said I was harming myself through neglect. It wasn’t until my third year of college that I had my first episode of hemoptysis. Hemoptysis, if you don’t know, results in coughing blood. For CFers, lung tissues get inflamed, until a blood vessel breaks. The fastest route for that blood to go out is to cough it out. Fortunately, I had seen a documentary, and I knew this could happen to me one day. So, when I was first greeted with this crimson gore, I was shocked, but thankfully, I was not panicked. I finally had to admit that I was NOT like everyone else.

As poor as my decisions were, I want to explain something, to defend myself from myself a little: CF patients are not allowed to hang out together. It’s not because we’re jerks or our healthcare workers are jerks. It’s because our lungs are highly vulnerable to germs. We’ve got malnutrition, therefore weakened immune systems, PLUS our lungs are like petri dishes for bacteria. CF patients are not allowed to congregate, because we run a very high risk of cross-contaminating each other with our own bugs. We don’t sit in a room together, and talk about what’s going on. Therefore, we can feel ALONE in our sickness. Our families did not get the benefit of talking to other families who had to walk through this experience. In that vein, I didn’t see what was happening to other people, and I didn’t know what the road ahead would look like. Additionally, my family was like me –just trying to navigate with some really vague ideas and guidelines. I would love to hear that there exists a mentorship between families of CF patients, one day.

Current Assessment

Let’s skip forward to today. I want to share how I am at 36 years old. I want to tell you my health status, the concerns of a 36 year old person with Cystic Fibrosis, and the hope I have in my future.

At this point in my life, I am hearing the awesome words of doctors saying things like, “You guys [Patients with CF] are getting older, now, so we see more long term effects of CF!” As I have stated, I have a mild case.

I work 40 hours a week in an administrative position. I no longer have the energy to run around the sales floor, like I did 2 years ago. However, I work this job, and I have enough energy left to work out and enjoy activities such as kayaking. I have been married for 9 years to an amazing man, Corey McKenna. We are considering having a baby this year. While I feel that I am not like my high speed low drag athlete friends, I still have a great life!

I don’t remember my numbers as far as lung functions. Honestly, I don’t have good perspective on what’s “good” or “great” in small airway and large airway clearance, peak flow values, or anything like that. From what I know about how percentages equal grades in school, I would earn a D or F in those areas! But I know I would have a C in total lung volume. I know that, because the doctor’s office has a fun game where you try to blow out birthday candles on a cake, and I can blow out 75% of the candles, on my very best days.

I have a permanent infection in my lungs, Mycobacterium chelonae. I contracted it in 1997. This infection became permanent through a series of unfortunate decisions by both me and a non-CF pulmonologist. I learned a valuable lesson – ALL lung issues MUST go through your CF specialist, no matter how great the other guy is. The infection appeared to go away, but it didn’t. Had I taken my problem to my specialist in 1997, he would have known to treat me aggressively right away, because this mycobacterium has a history of messing up CF patients. It came back with full force in 2005. With all the great efforts and help of my health care teams, it can’t be eradicated. I hear, though, that permanent infections are becoming more common, with adult CF patients.

Because of mal absorption, my vitamin D and Calcium levels are insufficient for a good skeleton. I now have osteopenia and osteoporosis in different areas of my body. My current treatment for that are massive doses of calcium and D, and high-impact exercise.

As a result of CF, I have another issue popping up, for which I have some understanding. It’s CFRD – Cystic Fibrosis Related Diabetes. My endocrinologist explained to me that my CF is changing the healthy tissues of my pancreas into fibroidal tissues. This fiboridal stuff is similar to scar tissue –useless. At this point, my pancreas produces about 30% of the amount of insulin as it should. So I can keep my blood glucose levels low, by just minimizing my carb intake. However, so long as I continue living, I will become diabetic, as the effects of CF advance in my pancreas.
Overall, my quality of life is still pretty good. I’ve got issues, but nothing so big at this time, that I can’t enjoy a normal amount of activity.

Family Planning

I mentioned earlier that my husband and I are looking at having a baby. Our decision to wait had absolutely nothing to do with my health. But as soon as we concluded that we wanted a kid, we had a lot to do, to consider how viable that notion was. CF patients used to be regarded as sterile, but then, as CF care advanced, more and more women with CF were becoming mothers –whether they were ready for that or not! Since I am pretty healthy, and because my mom jokes about how fertile she was, I’m gonna place myself in the category of “likely to get pregnant.” So, now that I’ve established that it’s a biological possibility, what does that mean for me? Broadly, my CF specialist explained that the babies usually do really well, but the mom’s health can suffer. If the mother gets sick, depending on the illness, the med she needs may cause risk to the fetus. For me and Corey, we didn’t want to put ourselves in the position to possibly make a VERY difficult decision. So we investigated further. What were the infections I struggled with all the time? What was likely during that 9 month window? What were the treatments that would keep me healthy, and would they harm a baby at any stage of pregnancy? Happily, with my history of infections and treatments, none of the antibiotics I use would cause harm. Also, I have not had a history of hypertension, which was a big concern for my perinatologist. Timing is also key, I learned. I developed asthma sometime after I hit 30. My perinatologist recommended that I time my pregnancy so that I am in my 1st or 2nd trimester during the cold months. December through March can bring temperatures in the 20’s and below, and breathing that cold air is very difficult for me. If I am approaching full term at that time, the baby will be pushing against my diaphragm, and I’ll have a lot of difficulty getting good air! We’re looking at discontinuing birth control methods in July.

Compliance: Prescribed Treatment vs. Reality

My health regimen, as prescribed by my doctors, is best presented as a list:
• High doses of vitamins twice daily
• 5 capsules of enzymes per meal
• doses of antibiotics 3xs a week, to keep permanent infections at bay
• nebulizer treatments twice a day, amounting to 35 mins. Duration of treatment
• 20 mins. Of therapy with my vest twice a day (I pair it with neb treatments)
• Advair inhaler 2xs a day (followed immediately by brushing my teeth)
• Monthly porta cath flushes
• Annual IV antibiotic therapy
• A minimum of quarterly visits with my CF specialist
• Minimum of 20 mins of weight bearing exercises 3xs a week
What I actually practice can be between 50% compliant and 80% compliant, most of the time. I have periods in which I am fully compliant. This is not good, and I know this. This has been a struggle for me, for as long as the regimen was introduced back in high school. As embarrassing as this can be, I am doing a disservice to myself and other people, if I don’t talk about the psychological and emotional battle of dealing with Cystic Fibrosis.

The Mind, Heart, and Spirit

First, I had a long period of denial. Let’s say this lasted… 35 years??? Denial, as we know, is bad and the denier looks like a selfish and reckless fool. Yeah. Let me say, though, what I got out of denial that FELT positive, even though it wasn’t good. I was able to pretend I was limitless and bulletproof. I pushed myself to go and experience good things in life, that maybe I would have reconsidered, had I paid attention to the damage I was doing. Like I said, it FELT good, but it really wasn’t. In retrospect, I could have slowed down some of the effects of my CF, by reworking my plans and allowing my body to rest. To give an example, I went to school full time, worked out 2 hours a day, worked retail part time at night, and then studied. On days off of work, I’d go pack that time with Judo and Fencing classes, get out at 10:00, then head to the restaurant with my friends, and be home at midnight. I would even study a couple hours AFTER that! I was keeping up fantastically with all my “normal” friends! I even wore my infections well. I was so used to being sick, that I could push through the coughing and low grade fevers, and perform with the others. This was bad! I noticed that, after college, my friends were all fine. But I was left with a lot of scars in my lungs. So what could I have done differently? Take the Fencing and Judo classes AFTER college, reduce the workout time, and cut back on socializing would be good. Or I shouldn’t have gone to college right out of high school. That, though, depends upon personal goals. My point is to prioritize, be discerning, and don’t be afraid to postpone some adventures.

When reality of my condition started settling in, I felt a lot of anxiety about my future. How long would I live? How long, until my friends quit including me in their plans, because I have limits that they don’t? What am I holding Corey back from, by being less-able than him? If I have a child, how old will that child be, when I die, and where does that leave Corey? These questions even spiraled down to “how long until I’m useless and my loved ones would be better off without me?” But here’s the great thing: My health condition is serious, but those concerns aren’t valid. Those thoughts were grounded in false beliefs. My friends love me, and they choose to spend quality time with me, whether it’s enjoying a meal together, or going for a walk. They may have to find another friend to go backpacking with, but that’s okay. I’m still their only Jen McKenna, and backpacking trips can never change that. Similarly, Corey chose to marry ME. He knew the ramifications of my illness, when he chose to propose! When I expressed these concerns, my friends and family wrapped around me and confirmed that I was treasured as me, for me, and not for what I could do. I cannot tell you how important it is to continue confirming for your loved one how they are loved and valued, as they experience changes in their lives. This is true for people of every walk of life, including those with CF.

The final piece of the puzzle for me was spiritual. I am the kind of person who does not do things, unless she wants to. I must agree with why I do it, and I must believe the reason is good enough, in order to “want to” do it. For years, I knew in my intellect, that I had to be responsible with my choices in treatment compliance. But deep down, I didn’t believe I deserved it. Why did I get to live this well, when I have behaved so recklessly? The truths are these: 1) I doubt that I deserve to live this well, but God has certainly granted grace in this area 2) I need to give the shame of my recklessness to God. I don’t need to carry that garbage in my head/heart/spirit any longer 3) God knew what He was doing, even before I was born. I was made purposefully, thoughtfully, and perfectly according to His plans. My response to Him, upon this realization, is to make the best choices as I possibly can, in order to care for the body He made for His glory and according to His purpose. Okay… so, what can be more important than to care of a part of God’s plan?! That seems like a “good enough” reason for me to “want to,” now.

Why I Need Champions

After disclosing some of my heart-journey with CF, you may have concluded that I don’t like to look too closely or too long at my illness. Of course I want to be cured. But thinking beyond my daily responsibilities about living with CF and wondering how it’s all gonna play out for me is too depressing. Thankfully, there are bold and compassionate people who are willing to pick up that fight, when I cannot! I call them my champions for the cure for CF.

David Kuhn is definitely a champion. It takes an extraordinarily determined, hopeful, and loving man to look at his granddaughter’s condition, and then take on responsibility to do “all he can do” to brighten her future. During this massive feat of running around the country –and doing it blind, David is very vulnerable. He is thereby taking great risks just for the HOPE that funds are raised, and that Kylie can benefit from the medical advances that follow these contributions. At the very least, Kylie will be proud of her grandpa and witness this act of love for her. She’s also gotta know that he’s got a LOT of admiring fans and we are all watching for her cure!

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