Val is an aboriginal woman from the Sandy Bay Ojibway First Nation Reserve in Manitoba. She is sixty–four years old and has amyotrophic lateral sclerosis (ALS). ALS is a neurodegenerative disease that results in the death of the nerve cells that control the body’s muscles. The “living wires” that connect the brain to the muscles degenerate, leading to a loss of mobility and the loss of speech. Eventually, the disease impacts the ability to breathe.
Val had already been diagnosed with ALS before she fell in her home in October 2015. Her leg muscles had become weak and after falling she was unable to get up. However, Val managed to activate her lifeline alarm to summon help. She was admitted to Humber River Hospital (HRH) with a concussion. After examination by the health care team at HRH, it was determined that Val needed to be treated for aspiration pneumonia, a complication that can develop because of ALS.
Aspiration pneumonia is a lung infection that develops after a patient aspirates (inhales) food, salvia, liquid, or vomit into their lungs or the airways leading to their lungs. Since ALS causes respiratory muscle weakness, the muscles in the back of the throat are weakened, which results in the airways to the lungs being unprotected during swallowing. This leads to aspiration, i.e., the contents of the oral cavity entering the airways.
Estranged from her only living sister and half-brother, Val has no family support. She had been receiving home care through the Community Care Access Centre (CCAC); however, the health care team at HRH determined that her physical decline had progressed to such a point that the CCAC support would not be enough to allow her to return home and live alone. As a result, Val was admitted to the Complex Continuing Care (CCC) unit at The Salvation Army Toronto Grace Health Centre (TGHC) for rehabilitation in January 2016.
When I spoke with Val, she was candid when discussing some of the adversities she has faced in her life, and her ALS.
Val’s parents were alcoholics and they were unable to properly care for her and her siblings. When she was just four years old she was taken from the Sandy Bay Ojibway Reserve and placed in a foster home with a white family in the country close to the town of Neepawa, Manitoba. She was separated from her siblings, who went to other foster homes.
As a young child she endured sexual, mental and physical abuse. She still remembers the bruises and broken bones. She had three foster care placements before she finished high school. The last placement lasted eleven years, and although she was treated as an unpaid servant, doing housework and burdened with childcare duties, she believes the family treated her decently. She remembers receiving Christmas gifts and nice clothes for school. However, Val also recalls that when her birth mother tried to visit her she had to remain at the end of the driveway because she was not allowed on the property.
After graduating from high school, Val married her high-school sweetheart and moved west to Vancouver. They eventually divorced, however, and afterward, Val moved east to Toronto. She began working for Bombardier as a seamstress. After twenty-seven years, Val was packaged out and she retired.
Shortly after that, she met a man and began a relationship that quickly centred on drinking. By her own admission, “it wasn’t the way her life should be.” She needed to stop but found it terribly difficult to get sober. She eventually succeeded to some degree.
In 2006 she was invited to attend a traditional pow wow in London, Ontario. Pow wows are celebrations where First Nations people meet to dance, sing, socialize and honour First Nations culture. Val confessed that she had always been ashamed of her aboriginal heritage but the pow wow changed her whole outlook and perspective toward her people.
One of the sacred traditions at a pow wow is the sweat-lodge ceremony, an ancient indigenous ritual that symbolizes rebirth. During this ceremony, the participants enter a low, typically dome-shaped hut. Inside the sweat lodge, the participants sit in a circle around a central fire pit. Stones in the fire pit are heated and then cedar water is poured over them to create steam. The ceremony is said to clean and detoxify the mind, body and spirit. Val participated in her first sweat and received her spirit name – Autumn Tree Women.
She continued to try and maintain her sobriety and attended short-term drug and alcohol rehab programs, but they didn’t work. She then began meeting with a counsellor from Anishnawbe Health Toronto, a center that provides mental health and addiction services for aboriginals in Toronto. Anishnawbe Health helps its clients to build their identity as aboriginals, helping them learn about their culture and tradition so that they can begin and then maintain their journey toward wellness. Being surrounded by aboriginal people is what Val liked most about Anishnawbe Health. Val has now been sober since 2009.
Inspired to learn more about her heritage, she took courses at the University of Toronto in aboriginal and religious studies. She continued with her studies for almost three years and entertained the idea of becoming a counsellor. However, that all ended she said when she found out she had ALS.
Receiving the news made her want to start drinking again. In the end, though, she fought the desire. She realized that doing so wouldn’t help her. As she says, “I would still have ALS.”
When Val came to the TGHC she was able to walk with assistance and was using a manual wheelchair. She began receiving physiotherapy as well as occupational therapy three times a week. By March 2016, her ALS had progressed to a point where she was no longer able to use her manual wheelchair and required an electric wheelchair. Val was still determined to walk though, and so was hesitant at first about using an electric wheelchair. Ultimately, however, she realized that using one would help her to keep her independence. The TGHC was able to provide an electric wheelchair through the ALS society. The rehab team at TGHC helped train her to acquire the skills to safely and effectively operate her electric wheelchair.
Through the ALS society, the TGHC was also able to provide Val with an alternating air loss mattress. These special mattresses are designed for patients like Val, who are unable to change positions when sleeping or who have limited mobility. These mattresses are designed with air pockets, which shift so that pressure is not static but moves along the contours of your body. This helps prevent skin breakdown or pressure sores.
The nurses have put Val on a schedule and help her with activities of daily living. Each morning they get her into her wheelchair with a hydraulic lift and help her wash and dress. If she needs assistance with her meals, the nurses are also there to help.
Val says the nurses are good and overall very attentive. However, although Val is on medications to manage her pain, she felt there was a time when some of the nurses seemed not to understand just how much pain she feels or her inability to preform certain activities from day-to-day. She communicated this to her health care team and an in-service appointment with an ALS coordinator was arranged. The coordinator did an educational in-service session with all the nurses on Val’s patient care unit, helping them to become more knowledgeable about ALS.
Val believes she should be receiving more rehabilitation than the three sessions a week she currently receives; however, her ALS has advanced to such a degree that her muscles have atrophied and her movements are now more restricted. Although the rehabilitation team helps her do a lot of stretches so her legs do not stiffen, more therapy would exhaust her and she would not be able to make any gains. The rehabilitation she now receives is to maintain her current strength and endurance.
The health care team has adjusted her rehabilitation program to include more recreational therapy. Val enjoys many of the programs that recreational therapy offers like Bingo, Crafts, ‘Sitting and Dancing’ and ‘Coffee and News’. She would like to do more, although she is quick to point out that Tai Chi is not for her. I asked her what it is about recreational therapy that she enjoys. She said, “It keeps you connected with other patients and you’re able to socialize and not remain in your room.”
For Val, her physical decline has been hard to accept. It is a constant reminder of how, slowly, she is losing her independence. During our interview, she mentioned how limited the mobility in her hands was and reflected on how ironic it was that someone who enjoyed working with their hands so much had been afflicted with an illness like ALS. She is worried about what is coming and does not know what she is going to do.
“What do you want to do,” I asked. She said, “I would love to live in an apartment again, but what I really want to do is to go dancing!”
This past summer, Val was invited to Anishnawbe Health for a ceremony and was able to share her life story there. For sharing her story, she was given an eagle feather. An eagle feather is amongst the highest honours that can be awarded in aboriginal circles. The giving of the eagle feather acknowledges the hard work and achievements of the recipient, and today is used to pay tribute to individuals who greatly impact their surrounding aboriginal community. Val is extremely proud to have received this honoured gift.
By Gerry Condotta