Health and Wellness

A New Calling

By Janice Kenefick

Ship’s captain, passenger ship safety officer, marine fire-fighting instructor – all titles I held before Lupus. But none of them offered the rewards I’d find in my own backyard - literally. After several years traveling the world as a merchant marine officer and teaching navigation, on Canadian and foreign flag ships I settled into my favorite job – teaching marine firefighting to ship’s crews. It was challenging, kept me fit and paid well. What I liked best of all however, was seeing my students gain the self-confidence that would help them survive a ship’s most terrible emergency.

Summer is a busy season for mariners on the British Columbia coast but a slow season for instructors. Teaching jobs were on short-term contracts with summer layoffs. During that time I converted a section our 60’ by 60’ lawn to a native flora and fauna filled space that would attract birds and butterflies. I worked at this with the same enthusiasm I put into my job. I poured over books and took courses on everything from mason bees and organic gardening to identifying wildflowers and birds.

But on the brightest summer days, when I felt like I could accomplish the most, nausea and fatigue would force me to quit early and my face would break out in rashes. I didn’t use pesticides and herbicides nor did I have allergies. Why my hobby made me ill was a mystery.

Back at work, I blamed fatigue and stiff joints on the physical exertion of hauling 30 lb fire extinguishers or heavy hoses around and wearing the heavy turn-out gear and the breathing apparatus that went with the job of fire fighting instructor. I told myself that the nausea resulted from working in a smoky environment with chemicals from foam and extinguishers. I also suspected my age - late forties – was making me more susceptible to feeling unwell. One day I became so stiff my jaws wouldn’t open and I had to be helped into a chair to sit down. I could no longer dismiss this as working too hard or the early onset of age-related problems. Something was seriously wrong.

Lupus wasn’t easy to diagnose in the 1990’s. First my doctor thought it was rheumatic fever, and then rheumatoid arthritis. He referred me to a rheumatologist who discovered that it was Lupus, an autoimmune disease in which the body’s immune system attacks organs, joints or anything else antibodies can get to. Lupus is nicknamed “the disease of 1,000 faces” because it can result in a wide variety of symptoms. It’s not curable although it sometimes goes into remission and medication can reduce its harmful effects.

The most devastating part of the diagnosis was that I had to avoid heavy joint impact, sun and even fluorescent light - all integral to my work and hobbies. I cut back to part-time work to rest between teaching days and later changed jobs for office work. Despite medication and sun block, the symptoms worsened until I had to stop working altogether.

Our household income took a big hit. My husband and I cut back on everything we could. It wasn’t as difficult as we thought it would be. When the symptoms settled down and I got over the initial stage of chronic fatigue, I discovered that for the first time in years, I had time and that helped us save money. I trolled thrift stores, canned and froze fruit and vegetables in season and prepared home cooked meals. We went camping locally with our dogs instead of staying at guest ranches or motels. Air travel to see friends and relatives gave way to emails and more letters.

I was fortunate to have a supportive spouse who happily did everything from helping me peel peaches for canning to taking over the dog walking. He never complained.

When I felt better, my thoughts returned to our garden. I had always loved nature and bird watching. If I could convert our garden to a little sanctuary, it wouldn’t cost a lot of money to maintain but how could I garden and avoid sunlight?

Being in a gloomy, rainy northwest coast climate was an advantage. Applying sunscreen was a habit by then. UV resistant clothing came on the market and it helped. On sunny days, I followed the shade or worked at dusk. In the brightest, sunniest part of the day I remained indoors with my binoculars trained on the bird feeders, pond and nesting boxes. I was amazed at the variety of birds and even wildlife – squirrels and raccoons – that visited the garden.

My husband helped me with the heavy work in the garden and any work that needed to be done during the day or in bright sunlight.

The interests that started in my garden carried over to our vacations. I learned to identify wildflowers and trees. My husband and I watched birds on our camping trips and even carried out volunteer surveys. We discovered good places to find wildlife including bears, bighorn sheep and deer.

Then came the hardest adjustment we had to make. We couldn’t afford to live in our home on my husband’s retirement income.

worried about my garden as well as the birds and squirrels that it their home. When people looked at our house while it was for sale, I prayed the buyer wouldn’t be a builder hoping to knock it down, as is so common in our older neighborhood.

The person who bought the house called us the day after the deal went through and asked if he could show it to his sister. It was an odd request. However, I gave her the grand tour of the garden, which seemed to be her main interest. The family stood out in front of our house for a long time, pointing and discussing who knew what? Then they told us that the sister was going to move out of her brother, the buyer’s home and rent our house from him. It looks like the garden will be saved for now at least.

Perhaps our enthusiasm for the birds caught on in the neighborhood for there are several new feeders up near other houses and in nearby parks, people feed the squirrels and birds. At the end of August we’re moving to the east coast of Canada at opposite end of the country, where I’ll continue to be a gardener, wildlife watcher and a writer too.

For more information:

Lupus Canada
Lupus Canada is a national voluntary organization dedicated to improving the lives of people living with lupus through advocacy, education, public awareness, support and research. There are also provincial branches of Lupus with support groups, information meetings and special events.

The Lupus Foundation of America
The Lupus Foundation of America (LFA) Inc. is the USA's leading nonprofit voluntary health organization dedicated to finding causes and the cure for Lupus in addition to providing support and services to all people affected by the disease. LFA has a wide variety of resources and operates a nationwide network of chapters and support groups.

Watch out for other articles by Janice Kenefick in the coming months on ThisAbled.com.