What HAS Means to Me
I will never forget that dark afternoon in my bedroom. In the winter it gets very dark in northern Sweden. In fact, we only have 3 hours of daylight a day when it's darkest. I don't know what the rest of the family did but I had a long time to myself. I guess I was a bit bored, it's hard to entertain yourself with snow on the streets and you're in a wheelchair. I was lying there scrolling through my usual feed on Instagram while resting my tired legs. You might be wondering why my legs were tired. I've lived with ALS for many years, and at this point I could still walk short distances. Often my muscles felt so tired, like I had run a marathon.
In my Instagram feed, suggestions for accounts appeared. I imagine that the algorithm decided to give me a bit of dignity and security. Suddenly I found accounts of women like Sunny, Alex, Brooke and of course Leah. I couldn't believe that there were other young girls who, just like me, were trying to control their own lives despite ALS. I found videos of them swimming, laughing, and dancing with their walkers, and I fell in love with every single one of them. I found a community who got it. Suddenly, it didn't feel like I was alone on the other side of the Atlantic. They were with me, in me–in my heart. I had found friends in Sweden, I connected with ALS siblings, and I had found some support networks. But that afternoon in bed I found Her ALS Story. If you know, you know. I contacted the organization directly and received a very warm welcome. I, a young woman in small, cold Sweden, was a part of something greater than any distance.
I know that I am blessed to have a slow progressing form of ALS. It is both a blessing and a curse, to be honest. It's a blessing to live longer, spending time with family and making memories. It's a curse to live with the mental side of ALS. To live with the knowledge that I will slowly become weaker. That the person I think I am is slowly disappearing. I have stayed in each stage of ALS for a long time and many times I have felt alone. I live in a small and quiet community in northern Sweden. There aren't that many people living here. We usually say that "everyone knows everyone.” I know some older men who have had ALS in my part of Sweden, but I couldn't identify with the older men. I was 28 when I was diagnosed. I had a son who was two and a half years old and was busy creating a career and finding myself as a mother. I read on the Swedish National Board of Health and Welfare website that a person diagnosed with ALS lives about 5 years. Most of those affected are men aged 55 plus. I had 2 wishes when I was diagnosed:to be able to WALK into my wedding by myself, and for my son Sam to have a sibling. I was unsure if I would experience my own 30th birthday. I didn't dare hope for it. I took out the fear and sadness in advance while understanding that it progressed slowly and that I would live longer than the 5 years I had read about.
It is now almost 14 years since I was diagnosed. I was able to walk into my wedding by myself and my son Sam has a sibling, Elsa. When I found HAS I had a place, ended up in a chat and my everyday life was never the same again. So to Leah, you who created our community. To Leah, you who welcomed me with open arms. To Leah, you who have been a pillar of support. I thank you from the deepest part of my heart. It's strange to lose someone you've never met but who meant so much. The grief and the loss are not location-bound, they are real and tied to you Leah, wherever you are. And to all of us other badass fighters: until further notice, celebrate everything (thanks Kim).