Your mom was such an interesting combination of being spiritual and yet practical. Her faith was profound. She trusted that God would get her through every trial. At the same time she was a realist, insisting on finding the truth in every situation, delighting in the world around her.”
- Rev. Helene Burns
Jegasothy “Lilly” Jesudason moved to Canada in 1966, with her husband and young family. Originally an immigrant of Sri Lanka, she was the primary caregiver at home. Along with the usual (labour intensive) traditional cooking, cleaning, laundry, ironing, and taking care of the entire family, she shoveled snow, took out the trash, and drove her kids everywhere. In addition to all of the above, she took to woodworking and sewing! She built shelves, backboard for tennis/basketball, sewed school and Halloween outfits for her kids and did substitute teaching as well! We remember how our Mom would awake every morning at 6:30, cook several curries, then get breakfast for us all, clean the entire home, get groceries, run errands and still help us with our homework! Not a day went by that she did not do it all. In her forties, however, this amazing superwoman was in excruciating pain. The same woman, who built a tennis backboard and re-did the downstairs bathroom, now could not even button her blouse.
Lilly's hands went from this:
To this:
Over the decades her feet and other parts of her body suffered the effects of rheumatoid arthritis. The medications used to treat this disease also came with severe side effects. Soon she dealt with weight gain/loss, shortness of breath, fatigue, some hair loss, and eventually the arthritis flare ups. Older medication used for treatment lead to lung damage. She was eventually diagnosed with advanced interstitial lung disease. Life was hard, yet Lilly persevered. She took pride in cooking full traditional meals, even for her now adult children, whenever possible, still did groceries and cleaned the entire house daily. However, the disease, in combination with medication side effects, took its toll. She needed help doing the most basic things. She tried at least 8 different kinds of treatments including gold injections, Finally, in her 80’s, she tried a treatment that was intensive, but finally seemed to keep her arthritis at bay. However, by this time her interstitial lung disease and arthritis was so severe that her hands looked like this:
Of her ten fingers only two on each hand were functional. Still she did as much as she could on her own, though dependent on the help of others. Even though her new medication seemed to slow down the effects of arthritis, the interstitial lung disease progressed. Had newer medications, with less side effects, been available earlier, and had she been diagnosed and monitored earlier, she could have maintained her independence and quality of life much longer. She will always be “Mom” to us and to many others. Research into finding ways to treat this horrific and painful disease is so important to keep wonderful people, like our Mom, at their best - independent and productive.
We saw our mom go through excruciating pain and suffer without treatment for many years. We saw her lovely fingers and joints become deformed. It is difficult recognizing the obstacles that people with rheumatoid arthritis go through yet persevere. Today, we realize how our mom’s strength and determination to see a difficult job through to its completion inspires us and everyone she touched in her lifetime. These are great lessons to live by.
If arthritis has touched you or your loved ones the way it has touched ours, we encourage you to make a gift in their honour to the Arthritis Society, or a legacy gift in your will to the Arthritis Society. It’s a gesture of generosity which helps to keep their memory alive.
Perhaps your generosity will give others extra years with their loved ones – and you can’t put a dollar value on that!
If Lilly’s story inspires you please give now for arthritis research!
Donate to Lilly's Legacy
Download Lilly's story [PDF 427kB].