I didn’t get to take my first beach walk in 2015 until January 9. For those who live in cold winter climates this would not be unusual. But I am fortunate to live on the California coast and regular beach walking is my salt water “high.” I missed the ritual New Year’s Day walk as I did not start the year off healthy. I ended up in the hospital on January 2, with flu/pneumonia. The flu was an unpleasant surprise, as I had gotten a flu shot. The pneumonia was not, as I have had it more times than I can remember. This bout knocked me pretty hard and for the first time I had to have oxygen (O2) and was quite weak. Walking the hospital halls tethered to a pole does not get you very strong. Of course, I am getting older (68 years) but still expected to quickly recover and get back to life and exercise. I managed to convince my doctor to let me out of the hospital on the following Monday, January 5. I continued the I.V. antibiotics on my own at home for another week and was eager to get outdoors.
A few days after getting home my O2 levels were still down and I did not have a lot of strength but I got outdoors and walked the beach slowly. I walked on the beach alone as I often do; and thought I really wasn’t “walking alone” as I dealt with another challenge of living with CF. Dr. Belkin and the Santa Barbara Cottage Hospital, CF Center team knew how to treat me and got right to it. My husband, Rich, got me to the hospital and gave me comfort while stuck in there. He got me home and picked up most of the household chores, even cooked dinners, while I recovered. When I got home my brother and sister-in-law were visiting from NY for a few days. I only get to see them a few times a year and did not want to miss them. It was great to see them even though I wasn’t much of a host and we couldn’t play golf together.
On my walk, I enjoyed the fresh salt air and reflected on life remembering my dear sister Loretta who lost her battle with CF at age 21, in 1971. I thought of my dear Mom, a polio survivor, who loved the beach even though she couldn’t make it to the ocean water. This was long before ADA improved public access, but our family made many trips to local Southern California beaches for picnics and recreation. Pictured here are Loretta and Barbara at Zuma Beach in 1968. Mom taught all her children “to walk with hope in their hearts” even when she could not walk without braces and crutches. And who knew back in the 1960’s, how beneficial the ocean air and salt water was for two of her children.
As the word got out among my family, friends and neighbors, that I was ill; I got texts, e-mails, and calls reminding me that I wasn’t “walking alone.” I even got calls and e-mails from other bloggers on this CFLF Blog. Thank you Brian, Erin and Klyn.
After ten days the PICC line came out on January 12 and I was free to beach walk more, swim, and play golf. Yeah!! Well, not so fast. My first swim attempt a few days later was lame. A few laps and I had to rest and catch my breath. I am used to swimming 30 laps or more at a steady pace with no rest. But I kept “hope in my heart” and went back again, figuring some laps were better than no laps. And at my age swimming helps more than just the lungs and my pace is improving. I am set to play my first round of golf for the year this week; even if I have to ride in a cart and not walk the course. Walking the hillsides in my neighborhood is still a bit hard, but improving.
2015 did not begin well but there is “hope” on the horizon and it is only up from here. In the State of the Union address President Obama even mentioned progress on the reversal of cystic fibrosis. I recently had a call from Vertex Pharmaceuticals Support on the process for getting Kalydeco, and heard from my specialty pharmacy that the new drug is on its way. This new drug was recently approved by FDA for CF patients with gene mutation R117H. I am one of 500 patients In the U.S. with this mutation that can benefit from this drug. I never thought that I would live long enough to see a breakthrough in drug research that could potentially correct the defect caused by the gene mutation.
In January I may have felt like I was “walking through a storm” but I made it to February and I am “still holding my head up high… walking on…though some dreams may be tossed and torn, walking on with hope in my heart that I will never walk alone.”[1] Knowing, I am not walking alone.
Barbara Morris Harison lives in Ventura, CA 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 retired after a long career in public parks and recreation administration and later managed her own consulting business, Harison & Associates for 20 years.
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