In honor of Bernadette
San Francisco Mucker, Tina, shares with us a small glimpse into her sister’s life after living with MS for almost five decades. Her experience provides a long-term perspective on how MS affected one person, her family, and her friends.
My sister Bernadette lived with Multiple Sclerosis for close to 50 years. My sister passed away in 2014 at the age of 69 years. Participating in MuckFest® MS 2016 is something that would have brought her a big smile and many laughs.
The impact of MS was most tangible in terms of mobility and freedom. During my sister’s life, the effects of MS changed a lot from its earliest expression as intermittent stumbles and falls. Through the years she experienced the gradual diminished use of her legs resulting in the need for a cane, then crutches, and ultimately an electric wheelchair. The impact of MS was hardest in terms of interacting in a world not particularly friendly to a wheelchair. One area of great happiness for my sister was world travel and cruises. Until the symptoms of MS became too severe, she enjoyed many years working as a travel agent. Her core support group through the years were women who became close friends from sharing travel – they call themselves the “Cruise Girls.”
If you want to stay engaged in the world, there are all manner of things you just have to have in place. It’s easy to not notice the independence of walking, driving a car, hopping in a cab, or taking a bus/train/plane …freedoms we often take for granted. In the latter years of living with MS, mobility and freedom was enjoyed by my sister through the use of a very nice electric wheelchair and a wheelchair van. These two things enabled her to go out shopping, get to appointments, have lunch with friends, and catch a movie or concert. When she could no longer drive, a driver was needed. She was blessed with wonderful friends, family, and a wonderful husband who made sure her needs were met.
My sister lived in a lovely suburban neighborhood in a good sized Midwestern city. Her neighborhood did not have sidewalks. Therefore, in order to just go out for a “roll” on a lovely day, she had to enter the street. Approximately 1/2 mile from her home was a lovely park with a free art museum and nice café. It’s a place that people enjoyed very much. I remember trying to go there one day with my sister – it was sooo close! After navigating the traffic on the street, we came to the sidewalks with no curb cuts for access. What was an easy 15-minute stroll for me was a 45-minute dangerous obstacle course for my sister. I didn’t think about those difficulties she experienced every day until I walked along with my sister that day.
My sister also addressed ways to remain independent in her home. The 1970s ranch-style home had to have many modifications. These included, entry ramps, wider doorways, and a no-threshold shower. She had shop hoists and ceiling tracks installed so she could self-transition from her wheelchair to sit in the family room in a lounge chair, to get in and out of bed, and to use the restroom. It was important to her to make these physical modifications in order to support her sense of dignity and independence.
When I would visit from California, I tried to think up gizmos and ways to make things a bit easier for her. As the fine motor control in her fingers diminished, she had difficulty holding objects. She really enjoyed popsicles – but could no longer hold one. And, it isn’t a popsicle if you eat it with a spoon! I made her a popsicle holder with some foam and a wooden clothespin. It made her laugh and it worked! She had safety bars in her bathroom, but could no longer get a good grip. So, I went to a bicycle shop and got some high-quality handlebar tape. It cost $14 and she was really concerned about using such an expensive tape, but I didn’t care. And after 5 years, that tape was still going strong and providing a safe non-slip grip! My sister began suffering from leg cramping and spasms. They started using some silver duct tape to help keep her foot in place on the wheel chair pad. On one visit to see her, I noticed she had upgraded to leopard print duct tape! It reminded her of the animals she saw on her trip to Kenya.
There were many challenges and difficulties associated with MS for my sister, our family, and friends. It was not easy. But it was an experience that showed all of us how many things really can be done that do make life a wee bit easier and fun.
Despite the barriers for being out in the world, my sister militantly refused to see herself as disabled, handicapped, or sick. Through the years she experienced many additional health and medical challenges including breast cancer and severe asthma. Yet, she absolutely refused to be emotionally and physically knocked down. And this inner strength was part of the bond she shared with others around her who also had challenges and difficulties. My sister was generous and she often gave her time and energy to help others. She consistently gave to several groups that helped children without families and animal rescue organizations. I remember years ago when I was in a very difficult time and my sister said, “Just go out and help someone else.” My sister possessed a strong positive attitude in the face of being dealt many challenges.
Bernadette’s primary support group through the years included the steadfast and consistent relationships of family – her husband, along with our father, mother, and brother. Her network of friendships was drawn from friends from high school, college, work, and travel. Her core group of friends made a concerted effort to come together at her home to just enjoy each other’s company. This type of social time helps so much to prevent isolation that can result from living with MS.
My sister also enjoyed the consistent help of a housekeeper/driver who was a true friend. Plus, she enjoyed the affection of the next door family with 2 young girls who grew up with Bernadette. Since my sister had no children, this bond was very important to her and gave her much joy.
I did not know anything about MuckFest MS until my best friend Dianna invited me to do it with her this year. As soon as I saw what it was, I was “all in.” I am happy to be raising funds for MS research. Plus, I get to bond and identify with the MS community that understands so much of my story. And who can say no to a chance to slog through some mud and laugh in honor of their sister?