My Moment of Courage

 

My Moment of Courage

 

     I worked until midnight the night before my Zen walk. I showed up 30 minutes early for the night shift so I could ask my co-workers on payday to pony up the change in their pockets for Cystic Fibrosis and Zen. I felt my courage wane as I walked up to my first victim, the big wig. He instantly gave me a warm smile and pulled out a bill. He graciously asked if it was enough.

    I was thrilled. I also asked other co-workers in the break room and down on the floor. One of my younger bosses told me I was “probably not allowed to do that.” I had the feeling she was telling me to protect me, but her discouragement did not stop me. In my mind I was doing this for my young friend and “probably” was simply not enough of a reason to give up.

     It is funny the things we can screw up courage to do and why. For myself I would not have plodded on with my donation hunting…I realize that now…but my heart is not the scholar I bill myself to be or my fresh new label of “checker” that my grocery store has bestowed upon me…my heart is that of a “housewife” and “mother.” I know that since I lost the house years ago and my divorce kind of killed my “wife” label I might actually be stripped of both technically but I can’t seem to shed the loyalties all of us housewives and mothers share. My heart is always going to side with any child…and Zen is one I know who wears many labels, a minor one being his CF label.

    I ignored being told I should not persist in soliciting donations from my fellow employees. I casually name dropped my first donor and kept walking on. I went through all areas of the store and gathered many donations before I had finished.

    Everyone donated something or apologized for not having cash on hand. I took each donation and placed it in an envelope and scribbled the benefactor’s name on the outside. I had over 15 before my shift ended.

     The next morning, I was up before dawn. I wanted to write up the donations and put them individually on the website but that just did not work. I had to give up and focus on creating proof of my affiliation with CF and Great Strides. After a conversation with my dear Ex, Gordon, I realized I also had to make some sign and print something with the Great Strides logo on it to add legitimacy to my charity. He said it would be best to get a large sign with the Great Strides emblem but I did not have time for such a thing since I did not know until this week that I was walking here in Sonora doing a local walk.

     I printed my blog page...I had already created business cards with the info for how to donate on them.

       Ann had gotten up early to see me off…she wore a proud smile as she hugged me goodbye and told me it was OK to borrow the truck to gather some more of my boxes of things after the walk.  As I backed Mike’s truck out of its cozy home in the garage I carefully turned fully towards the rear, like my father taught me to do when backing up.

      And that is why I was startled completely when the driver’ side rear mirror broke clean off as it hit the side of the garage door.  I stopped the truck and hopped out in my Italian dress, with flowing scarf drooping loftily as I scrambled to pick up the shattered glass.

     Now Mike is a jovial sort but he is a man and they sometimes can react rather strongly when damage is done to a vehicle. But there was no more time to waste on problem solving my way out of this mess when I had a walk to somehow be coordinating. I figured the Universe would figure it out for me on this one.

     Since I had run ads and spoken to a few people who said they might show up…I really had to get to the track with more envelopes in tow in case a few people DID make it. My friend Sandy teaches there and she helped me make a sign and gave me tape to slap it up somewhere. And then I waited. I had my tights on and ballet flats. My dress made me look nothing like a person who was walking the track, but instead I smacked of the tourist visiting Italy just as I had since returning home. Well on any day that I picked out my clothing I instead of donning my Monkey Suit for the job.

     When my start time happened and no one appeared I waited 10 minutes and started walking. I had completed 3 laps when my daughter delighted me by showing up with a Starbucks in hand.  We were engulfed in a complex conversation about the dangers of International Politics and the foreign service (especially the death of the ambassador to Libya this week!) when another walker joined us. Valerie from the paper showed up and joined us for a bit longer. I was probably at 3 miles already but I was so happy to be walking with others, I was not going to stop until forced to.

     My daughter left to find out if her tires were now mounted on her car and finally Valerie left too.

     I went to the tire place and found my daughter still there. During the conversation the friendly guy behind the counter also told me he could look at the broken mirror. He told me he would call on Monday with a quote on the cost. I was thrilled. The Universe had taken care of it…without any interference or planning on my part.

     I then took the car to the storage unit and loaded boxes of books in the rear in a frenzy so I could meet up with my daughter again to look a baby clothes for a dear friend. Afterwards I ate with Sandy, Mike and Ann. I laughed so hard at times my eyes watered. The conversations are always funny with any one of us but when we are all telling stories the content seems to reach new heights.

     I visited my work again on the way to water a friend’s yard. I walked out with even more donations. And I found out I was working with  the girl who had singlehandedly put on the CF walk I missed in April. Her sister has CF and she understood why it was important to me.

     When I got home to get ready for work, I felt exhausted but it was a good kind of tired. I was glad I had worked hard and overcome things to accomplish an important goal. And I know that my real goal of seeing Zen’s life expectancy go longer and longer was well worth any price I pay.

My Moment of Zen

My Moment of Zen

 

 

     The first time I read about Cystic Fibrosis, I was pregnant with my first born child.  It was 1986 and I was huge. I usually enjoyed relaxing my hulking shape in a sunny doctor’s waiting room, killing time reading. Since there were no National Geographics or Time, I grabbed a ladies journal and flipped past the multitude of recipes to find myself riveted by the trials and tribulations of a parent raising a child with Cystic Fibrosis. The child in the story died at the age of 8 from her CF.

 

      At this point I had very little contact with children. My own baby was not yet born and my world centered around my husband and my little sister who was 7 years old at the time.  I was crushed to imagine this father’s heartbreak…his daughter was only my little sister Boo’s age!

 

     I read about the father in the story having to help loosen the phlegm in his daughter’s chest with cupped hands. It sounded like a traumatic experience. Cystic Fibrosis causes an excess of phlegm in the lungs. In the article the father talked about how hard it was to pound on her back and chest rhythmically every morning and evening in order to make the likelihood of her living another day a probability.  Some days his daughter would beg him not to but he knew her life depended on it so he always followed through. He was shouldered with the responsibility since his wife did not have the physical strength to loosen up as much as he could…..and the writer carefully explained how this procedure went on for years.

 

     I sat reading the article in the doctor’s office, crying at my own inability to really be a good parent. This guy had the right stuff. How was I ever going to cope with such life issues? I knew I was embarking on the most important job of my life, being a mother, but I knew full well that I was woefully inadequate compared to this guy. My husband then, Gordon and I were already questioning our ability to really be grownups, (a sentiment we STILL feel almost daily!) and I knew that this was a touching reminder of our shortcomings. I knew neither of us had the steel to be able to ignore any child’s whining, how were we going to be able to make sure we gave the children what they needed instead of what they wanted? If Gordon’s daughter begged for him to stop in this case, he would have quit hands down and so would I…we are that kind of folk.

 

       The projected life expectancy in 1955 for a baby born with CF was 5 years old. By the 60’s that figure was moved up to under10 years of age. By 1981 the figure had reached the age of 20 and in 1985 life expectancy reached 25 years of age. In 2004 life expectancy reached the mid-30’s.

 

     Fundraising and research has changed this dramatically.  Advances are made every year and I have been watching these events unfold in a highly personal way. I have a young friend with CF. His name is Zen. I saw him at parties and being a kid person I watched his exuberance with a smile. He is funny and sweet like any child. His eyes light up when he is getting away with something. He now has a little brother that he dotes on at family functions. One of my favorite memories of him at these parties was when we were at a small park in Santa Cruz. He endlessly road around a small blacktop area on a little bike….around and around…his face beaming.

 

     I had known him for over a year without realizing he had Cystic Fibrosis since his family is so upbeat and fun. They focus on the positive so much that no one had mentioned it at all.

 

     I wondered if his father had to hit his chest with cupped hands to loosen the phlegm in his chest….and I wondered how long he would live. Thanks to advances in research and innovation Zen wears a little vibrating vest that accomplishes some of what the thumpings had done to loosen it…and my son said Zen watches TV while he wears it before bed. I am afraid to ask if they still need to repeatedly hit his chest to give him optimum chances to survive the night. I do know that his parents are the best they can be to him so whatever they are doing it is going to make sure Zen stays Zen.

 

     They have a walk that they seem to be key components of and I was only too glad to walk for Zen. If money is what has caused these advances in life expectancy then I am on board. I have several T Shirts with the label ZenWalkers that I had been wearing as night shirts.

 

     I have a job this year that sometimes matches donations to charities like this that I can go to and beg for funds. It has to be local though. So my Zen family set up a team for me in Tuolumne County. Our walk in Tuolumne County was done before I moved back home though back in April…actually the local CF walk was done while I was in Wales with my Miss Kimberley.

 

    I guess the bottom line is that I am asking for walkers to join my team and for donations to help increase the life span of Zen and all those like him. Right now it is 37 years. It is only in a few days away so my goals will be small…but if I can make even a couple of hundred dollars it really can make a big difference.

   

        I will be walking the Sonora High School track on September 15, 2012. I will be walking 2 miles starting at 9 am. I might be alone but I will be in spirit walking with any who are willing to donate via the CF Foundations website.  I gladly welcome your well wishes and company if you can.

 

     Thank you for your interest in my goings on…..

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8078&idUser=511770

 

   

Further Cystic Fibrosis information-

 

Deford Frank, Alex: The Life of a Child, A famous sportswriter’s true story of his own daughter who grappled with CF.

 

http://www.cff.org/UploadedFiles/aboutCFFoundation/NewsEvents/2005_News_Archive/50YearTimelineFinal.pdf

35 Monkey Suit

35 Monkey Suit

     It has been months since I posted last on my blog. I wrote many essays since that I cannot post since there is much that is being saved for my book. I can say from this point that I am at now…life has taken so many significant twists and turns I have no idea where to start.

     Tonight on my drive home I burst into tears as I drove up to “my home.” I was borrowing my good friend Mike’s truck and wearing what I lovingly call my Monkey Suit.

    
     I am employed at a job at a grocery store and back in my real “home” of Tuolumne County. I have not been back here to live for 4 years and it feels like it has been a lifetime. My Monkey Suit is my uniform as a “checker” and actually brings me much security as I don the silly thing. I have spent over $150 on the clothes for my suit and I make a point of ironing and washing my pants and shirts often, wanting to show the same love and care for this job as I would if I was working in an embassy or for an international organization which are my “Dream Jobs” at this point. I wear a white collar shirt and colorful scarf, or tie as well as black pants and an apron.

     I love people and love the job…the co-workers are good fun people and the customers are simply wonderful. I look forward to almost each and every interaction I am fortunate enough to experience in that building.

    I also am amazed at how gleeful my home life is at the present. I showed up, literally homeless, jobless and feeling for all the world like the biggest loser at my friends’ home. I had only called them a few hours before. Of the two places I really wanted to crash and land, they were the ones who answered the phone.

     By the time I showed up at their house after having tracked my poor old car all over Northern California, it had gotten rather worn looking and could not take speeds over 55 mph without drastically quaking and proving its intense need for a wheel alignment. I knew I was going to have to simply give up and trust when I heard my tire pop on the last couple of miles of the drive to their home.

      I drove it on a flat tire until I reached gravel, locked up the car, (a silly thing to do in the outback of the countryside!) and grabbed my suitcase to yet again drag it to my latest destination. This had become the drill anyway for both my son and I and this particular case was not more difficult from all the rest of my travels. Spencer and I had taken to calling ourselves “turtles” since we had gotten so accustomed to carrying all of our clothes and belongings around in our bags almost all the time. I could not drag my bag on this road as I had done in Rome, Florence, Heathrow, Charles De Gaulle Airport in Paris, Munich, Porth, Wales and San Francisco since this road was dirt and rock. I realized as I lugged the suitcase that I had grown very strong on our travels and it was a piece of cake to carry it up the steep hill to Ann and Mike’s house.

     My friends greeted me with open arms and obvious trust that I was not the biggest failure in the world. They instead saw me as a capable world traveler like my friends in Italy or family in Wales seemed to see me. They instantly made me feel welcome and asked me to consider staying.

      I cried myself to sleep in their cavernous upstairs, which already had a bed made up in it.

    
      I should give a bit of background information. I am not the sort of person with lots of friendships. I have many people that I love who are unaware of my affections and many acquaintances that I value deeply. But those that I love are people I trust with all my heart and soul. Ann and Mike have always been in the “love” category. Ann always has gotten me since we first met. We instantly understood one another. She is a calm and beautiful version of Anne of Green Gables. She is a better housewife and better at keeping her priorities in order but never makes anyone feel even the slightest bit of intimidation about her abilities. Instead she nurtures all around her and reminds me of a Snow White where all in her presence grow.

      Mike, her husband, has been amazingly like a brother. I can dress and be as schlocky and stupid as I desire around him and I feel comfortable. We have matching senses of humor, matching high blood pressure issues and matching attitudes about life in general. I have this desire to torture him and irritate him but also I understand him completely since he seems like me only the grownup and masculine version……or I guess he could be what I would be if I applied myself more…I find both of them to be role models as well as buddies. Their son, Lars, is a person I find myself learning from and admiring as well. He holds himself at healthy distance from bitterness as life swirls around him.  I need to learn to do just that.

      Tonight on the way back home from a shift as a supermarket checker, I found a deep and profound joy fill my heart. The countryside I drove through and fields with livestock looked much the same as it did in 1979 when I was learning to drive on these roads so long ago. I was carefully negotiating the curves and twists in a borrowed truck as the music combined with the setting sunlight to make the home I was heading towards stand out on the hill. A conversation with a beloved friend from the morning drifted through my mind making me smile...Sandy always has that effect on me…and I was happy to know who was at home waiting for me to return. Two dogs rushed out to greet me as I drove up wearing my Monkey Suit.

       No wonder I felt so happy and emotional. I was “home” for the first time in so, so long.