Lois Pare: From chronic Lyme to determined activism
GRANBY — I am a wife, mother, grandmother and great-grandmother. Up until 2005, I was a vibrant woman, teaching, working, gardening, reading, foster-parenting, playing with my family and filling every moment of the day with life.
I never knew how wonderful my life was, but do now. In 2005, I was bitten by a tick. I do not know how long it was in the back of my arm, but by the time it was discovered, I had already experienced some of the initial symptoms of Lyme disease: bull’s-eye rash, fatigue and a flu that seemed odd. Unfortunately, due to circumstances beyond my control, I went approximately four months before I received treatment for Lyme.
Sadly, it was too late for me. I knew it was Lyme, but I could not get the medical system to listen or to run the needed test to confirm it. The test eventually came back positive, but treatments did not work. Since then, I no longer work — I cannot muster enough energy to be upright. Since I have what is known as “neuro” Lyme, my whole neurological system is affected. I suffer from partial paralysis of the stomach and have spent more time in the hospital than home.
Now, I get my treatments at home. I have developed heart palpitations, a heart condition, mood swings and poor concentration and memory loss. I also endure light-headedness and dizziness, Lyme arthritis, have difficulty moving my hands and suffer bouts of severe depression.
Clearly, I am unable to work, and my children worry about the grandchildren spending time with me, for fear I would end up needing medical care.
Still, I do what I can and help with social activities when I physically am able. I am chaplain of Granby American Legion Auxiliary, Unit 266, as well the District 2 Unit. I am vice president of the Friends of Granby Elderly, past president of my church council, co-chair of a senior program called the Social Connection in South Hadley and a member of the Granby Lions Club. I was involved with many other organizations, but little by little I have had to give work up to keep fighting this disease.
My husband, who is also disabled, has had to take over most of my roles in the home due to my fatigue. Most of my days are spent on a couch so I do not have to hold my body upright. I spend 50 minutes a day receiving medication intravenously. Later, I spend four hours on another machine to receive fluids.
I cannot imagine you would want this life for your spouse, significant other, mother, father or child. And I will tell you what I and others are doing about it.
Unfortunately, there are many of us suffering, including hundreds of children, and insurance companies often deny treatment due to disputes over late-stage Lyme disease.
But I will not just sit back and die, not without letting others know this disease exists, how to protect oneself and how to advocate.
And so I am working to get the public involved by hosting both a fundraiser, “Bite Back for a Cure,” and informational session. On May 4 at Our Savior’s Lutheran Church, 319 Granby Road, South Hadley, the Granby/South Hadley Kick the Tick Chapter is hosting a 5.3-mile walk through South Hadley, a lunch of soup and sandwiches and speakers, some who are living Lyme every day.
We will close the day with a memorial service for those who have lost their lives to this disease. To register for the walk, visit tbdalliance.org. Our walk is listed under events. “Bite Back for a Cure” is affiliated with the Tick-Bourne Disease Alliance, a group dedicated to raising awareness, promoting advocacy and supporting initiatives to find a cure for tick-borne diseases, including Lyme.
Chronic Lyme remains controversial in the medical community. Until legislation is passed, Lyme sufferers struggle to get appropriate treatment covered by insurance.
Come walk with me. May is Lyme awareness month in Massachusetts. Let our voices for a cure be heard.
Lois Paré of Granby is president of the Granby/South Hadley chapter of Kick the Tick, a Lyme disease awareness and support group.