Part three of a three-part series

Jess Gustafson says she will never forget the first time she met Lianne, the ALS Canada Regional Manager in her area. Lianne came and sat with Jess and her husband, Alan, on their front porch to talk to them about what they could expect following the shocking news confirming Alan’s ALS diagnosis. Lianne provided informed and direct answers to their questions. “Lianne was the first person we talked to after the diagnosis who was so practical and helpful and compassionate,” says Jess. “You don’t necessarily expect that kind of follow-up when you have a disease that has no treatment and no cure. You can end up like an orphan in the healthcare system, so people like her are really stepping in in an important way.”

Man living with ALS holding infant son in his power wheelchairDuring June Awareness Month, Jess sees a unique opportunity to draw attention to the important gaps in the healthcare system filled by ALS Canada. “There are a lot of needs that you would be surprised to learn are not covered by the provincial healthcare system or corporate insurance plans,” says Jess. She points to a huge need for the kind of equipment that ALS Canada lends out as well as help they provide navigating the system to access supports like in-home care. “We were able to keep Alan at home with his baby and his wife living as comfortably as possible. The support being provided by ALS Canada is literally helping to keep families together with the best possible quality of life in the face of such a devastating illness,” says Jess. She considers this one of the most compelling reasons to donate and one of the main reasons she is so grateful for the help she received.

This month, Jess also wants to let people know they are not alone. “It’s important for me to share that message,” says Jess. “There were many nights when I went upstairs after putting Alan to bed and caring for our baby, when I would have two minutes to myself and I would look up at the stars and feel so desperately alone. I think about people who are in the situation we were in who are feeling isolated and feeling in pain and I want them to know that they are not alone. It’s really good to hear when you are going through it that there are other people who have been there and that they’ve come out the other end.”

Today, Jess is busy working part-time from home, looking after Harvey, and carrying on in Alan’s footsteps. While Alan was living with ALS, he volunteered to raise awareness during June Awareness Month by participating in activities such as raising the ALS Canada flag at City Hall in Ottawa, giving speeches and interviews, and visiting public schools to talk about ALS. “He used the very limited energy he had to try to get momentum and get the word out about ALS so I want to continue that work,” says Jess.

Jess is candid about the process required to bring her to the point where she now feels emotionally ready to jump into supporting the ALS cause in spite of – or perhaps because – the disease took so much from her. Over time, she has been able to conquer the fear that this chapter in Alan’s life would shape the way she remembered him even though Alan himself was never defined by his disease. She is able to separate that time in their lives, honour it, and still focus on all of the wonderful qualities about Alan and the happy memories she cherishes from before his diagnosis.

Recognizing the urgent need for action inspires Jess to give back, even after all the giving she has done to come this far. In fact, it seems the love and caring and the hope she has sustained have opened her to the possibility of re-engaging with the cause in a way that keeps Alan’s memory alive with the utmost grace and dignity. She hopes others like her will also be open to give again to help families living with ALS today and to pave the way towards a future without ALS.

We can’t take back everything ALS has stolen. But we can give hope to a future without ALS. Please donate today.

Read Part 1: Championing the ALS cause
Read Part 2: Speaking out against the helplessness of ALS

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