March is Epilepsy Awareness Month and March 26th is Purple Day, a day dedicated to increasing awareness about epilepsy around the world…
In a story of love and resilience, Rachelle and Barb’s journey stands as a testament to the strength found in adversity. Rachelle, navigating the complexities of epilepsy, and Barb, her unwavering pillar of support, offer a profound narrative of love, perseverance, and community. Their story, spanning over two decades, intertwines the challenges of epilepsy with the steadfast bond of partnership. Through heartfelt exchanges, they reveal the profound impact of Rachelle’s epilepsy diagnosis on their relationship, the depths of support they’ve shared, and the transformative power of finding solace within the epilepsy community.
As Epilepsy Awareness Month comes to a close and in recognition of Purple Day (which falls on March 26) we sat down with Rachelle and Barb to hear their inspiring epilepsy story to help raise awareness, break down stigmas, and dispel misconceptions. Their tale serves as both an homage to love’s enduring strength and a beacon of hope for those navigating the complexities of life with epilepsy.
Did Rachelle’s epilepsy diagnosis change your relationship; and if so, how?
Barb: If anything, it deepened our relationship. With each health crisis along the way it called upon us to be there for each other. Sometimes it was Rachelle being there for me during my cancer treatment, the year after we married. And then it was Barb being there from Rachelle’s first seizure, the diagnosis and to the present.
Rachelle: I had my first seizure two weeks after Barb retired in 2010. Our lives changed forever that day but not always in a negative way. We had been together for 13 years and married for six at the time. Now it’s 27 years together, 20 years married and 14 years with epilepsy in our lives.
Barb: Rachelle’s diagnosis sent us down a different path and along the way we met some amazing people through Epilepsy Toronto. Some had epilepsy and some supported those with epilepsy. It was a new community that welcomed and helped us. Of course, family and friends also factored into our support system.
Rachelle, in what ways has Barb supported you through your epilepsy journey?
Rachelle: Barb has been so supportive. She was my wife, caregiver and medical advocate at a very hard time. At first, I was having trouble verbally communicating what I was going through and I was so angry. I was angry and frustrated that this was happening to me and it wasn’t until Barb videotaped me during one of my many seizures, that I understood her concerns.I remember her driving me, more than once, to our pharmacy in the middle of the night when I miscalculated my epilepsy medications and I needed more.
She literally held me up during a seizure while I was mid-cleaning our cats’ litter. I froze in place and her concern was when coming out of the seizure I would have fallen into the litter. And this is a woman with severe arthritis and spinal stenosis.
She always made sure I was in a safe space and she encouraged me to get counselling through Epilepsy Toronto which helped so much. Through their CBT individual sessions including anger management, they helped me to become a happier individual and partner.
The first year Christmas that I had epilepsy, she made me a photo album called “2010 – Ah What a Year.” It showed us doing fun things. I remember there is a photo of a deer we saw in Mount Pleasant Cemetery on a fall day. We started to try to see the joy in everyday things rather than being angry with things that were outside of our control.
Epilepsy slowed down our world and Barb had to take on so many more things about our home. I never doubted though that she was there for the long haul come what may.
Barb, what have been the scariest parts of Rachelle’s epilepsy journey for you, and how did/do you deal with the fear?
Barb: The first year was by far the hardest. It took ten months before we got a diagnosis and during that time Rachelle was having frequent seizures and they thought she might have a brain tumour.
We never knew from one minute to the next what was going to happen. Every time she had a seizure I would worry, will she come out of it. Will she come back to me? It was very scary.
Education about epilepsy really helped and for us, that came from Epilepsy Toronto. Without ET, I don’t know how we would have survived it. Both Rachelle and I received so much support from them. Through counselling, support groups and events we got to know the epilepsy community and that having epilepsy did not define who Rachelle was or who we were as a family. It was certainly part of our story but not what defined us. Going to the Epilepsy Toronto Christmas parties every year is always a highlight. Seeing old friends, ET staff, interacting with new members plus seeing our poster on the wall is always fun. We were very honoured when they asked us to be part of their “See the Person” campaign a few years back and it resulted in a poster that hangs in their office.
You don’t know what you can handle until you are in the situation but for me, I turned into a mother lion and was very protective of Rachelle. I went into crisis mode juggling the doctors, taking care of her – during a seizure and after- plus fighting for her. I knew that we could do this together but again, Epilepsy Toronto was a HUGE part of that process.
What are some of the misconceptions you have had to face since Rachelle’s diagnosis?
Rachelle: That all epilepsy is the same – it is not. When people think of epilepsy, they think of tonic-clonic seizures (formally known as grand mal), but not everyone falls to the ground, convulses or even loses consciousness when they have a seizure.
Barb: Rachelle’s epilepsy became very normal for us. It was just part of who she was. To see people freaking out just because she was having a seizure was both nice (that they were concerned) but strange because I knew what to do and that she would be coming out of it. It all became just normal for us.
What advice do you have for people with a new epilepsy diagnosis – both for the person living with epilepsy and for their partners?
Rachelle: First step would be to breathe. It is not the end of your story but a new chapter in your lives. There are of course some changes that will be emotionally difficult and physically hard. I think losing your driver’s license is a great example. Even if you can control the seizures through surgery or medication enough to get your license back, you may still have side effects from the treatments that will challenge you. Extreme tiredness, headaches etc. may become your new norm but you can still live a fulfilling life.
Barb: Rachelle and I were featured in a recent documentary to celebrate the 20th anniversary of the legalization of same-sex marriage in Ontario in 2023. The film is called When You Find the One and was funded by the Ontario government. It was part of a WoodGreen Memory Project involving the stories of 17 seniors who decided to marry after the law changed. It is a celebration of love and commitment.
Rachelle: Navigating an epilepsy diagnosis is much like being in a long-term relationship. With love and commitment, all things are possible.
Epilepsy Toronto is a place where Torontonians living with epilepsy can learn more about their condition, get the help they need, and be a part of a family of caring and supportive people. For more information visit: epilepsytoronto.org.
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