On my March 1st beach walk in Ventura, California I was enchanted by the clouds above the hills and beyond. Ventura doesn’t usually have such clouds. As I walked and thought about the clouds I couldn’t help but think of clouds in terms of life. The song, Both Sides Now[i] echoed my thoughts. I really don't know clouds at all.

Clouds can be positive: Bows and flows of angel hair and ice cream castles in the air, And feather canyons everywhere, I've looked at clouds that way. In Ventura clouds might bring rain and that is a positive as California is in a severe drought. In other parts of country people view clouds negatively, wish clouds would go away because Now they only block the sun they rain and snow on everyone, So many things I would have done, but clouds got in my way.

As a metaphor for life clouds come and go, there are cloudy days and sunny days. For me this year started with negative clouds. I was in the hospital with pneumonia and PICC line for IV antibiotics but by February, I was back swimming, beach walking and enjoying the view of clouds. I also started KALYDECO (ivacaftor) the new VERTEX drug for the treatment of CF in patients with specific gene mutations. What a difference this has made in my lung function! I can take more walks, swim more laps and play more golf. I hope this lasts and there is hope on the horizon for more CF patients to benefit from new drug treatments.

Throughout life, I can recall clouds getting in my way, when my sister Loretta (Lori) and I took a vacation trip to the Northwest, in late summer of 1971. We started in San Francisco traveling in my 1969 green Volkswagen Bug and were headed to British Columbia, Canada. One destination along the way was Crater Lake National Park in Oregon. The sky was gray and as we gained elevation it was very cloudy.  At 8,000 ft. we got to a parking area for a lake trail.  So we got out of the car with rain jackets and umbrellas for a walk in the rain to see the lake. Only to find out you couldn’t see much of the lake and hills around. Clouds got in the way! Loretta also had trouble with the elevation as her lungs were weak. You see my sister had Cystic Fibrosis (CF). As her big sister I wanted to share time with her and this was our chance for an adventure but I thought maybe we better stick to lower elevations for the rest of the trip. Since she and I were not living together at the time I was not aware how sick and weak she was. But she proudly wrote a post card to my Mom letting her know that “We were at 8,000 feet and everything was fine.” Not letting clouds get in her way.

I have been thinking often about my sister and this memorable trip. This month is her birthday month; she was born on March 31. This trip was the last time I would see my sister alive. She died from CF complications at the age of 21 just two months after this trip. I have the many  joys and memories of the trip, as we did make it to Victoria, British Columbia. But there were clouds there and rain so we took a horse drawn tallyho carriage ride through the city to check out all the sites and went to the Empress Hotel for High Tea. Lori was very weak by this point of the trip. I was carrying all her luggage and equipment. The next day I suggested we head home but she wanted to go to famous Butchart Gardens - it was on her bucket list. So we headed up there. The gardens cover several acres and I knew Lori could not walk all of it. So I got a wheel chair at the entry and pushed her through the garden tour. It was a grand garden and we did enjoy the day but I was worried. The next day we headed south back to Washington State and made a call to Mom. Lori was still reluctant to give in, but I got her to Portland Oregon Airport and arranged a flight back to Los Angeles. It was a sad farewell and lonely drive back to San Francisco with lots of clouds along the way.

I look back on it from Both Sides Now and still somehow, I don’t know. Should we have taken a shorter or simpler trip where she could do a better job with her treatments? Not that there was much available back then; especially not like the portable nebulizers and drugs available today. Why did she die and I am still alive and living with CF? I knew I was a CF carrier back then and had lung problems but was quite healthy. I think Lori knew she did not have much time to live and was determined to travel, living on the edge doing what she wanted to do. My parents did not hold her back. My life went on and Lori’s memory lives on – her grave stone at San Fernando Mission Cemetery is engraved LET IT BE[ii]. Hardly a day goes by when I don’t think of her.

My active lifestyle, filled with fitness, recreation activities and volunteering is the reason I am still around even with bad lungs. In 2010 the year I was diagnosed with CF, I wanted to give back and remember my sister.   The end result - the Loretta Morris Memorial Fund was established with CFLF to give recreation grants for activities that my sister and I have enjoyed: Swimming, golf, dancing, and horseback riding. In just over four years 45 donors have supported the Fund and 78 recreation grants have been awarded to CF patients.

The youngest grant recipient is just nine months old and the oldest 55 years old.  It is the highlight of my day when a thank you from a grant recipient is shared with me. This clears the clouds and I know that Loretta’s spirit and drive to live life fully is with me.

 

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Barbara Morris Harison lives in Ventura, California and serves on the CFLF Board. She was diagnosed with CF at age 64. She lost a sister to CF 43 years ago. She established the Loretta Morris Memorial Fund with CFLF in 2010. Barbara is now retired after a long career in public parks and recreation administration and later managed her own consulting business, Harison & Associates for 20 years.