I refuse to live my life in fear.Fela Kuti
World, welcome to life with ALS! Stuck inside your house? Check! Hours spent with only the ones you love? Check! Already binged every worthwhile Netflix series? Check! Worry about catching a respiratory infection that fast turns to pneumonia and you drown in your own mucus? SUPER Check! Every flu season this is generally the life of an ALS patient and definitely the life of more advanced ALS patients – think those on permanent ventilators. Before you get all upset and scream “This IS NOT the flu!”, I know. It’s not the flu. But how you respond to this uncertain time is something you are going to look back on and think “Wow, that was tough but I was awesome” or “Wow, that was really scary and we were lucky to make it through”. Which do you want to be? I want to be awesome.
I choose not to watch the news. I don’t like seeing the death tolls and the mortality rates scrolling across the screen constantly. I don’t let the kids watch it because the sensationalism of the American media is disturbing. The culture of fear they have instilled in society at the moment, I believe, is unnecessary and harmful. It is an uncertain time and they are not making it any better. There is probably nothing you can say to make me change my mind. I see parents who are sitting in their houses, freaking out, afraid to go for walks or let teachers caravan through their neighborhood. Friends who have completely healthy families who are now convinced that this coronavirus will land them all in the ICU. It most likely won’t though. The vast majority of people are going to recover. There are people walking around with this virus that have NO symptoms. While we don’t want anyone dying, this is not a virus like Ebola that does not care about your age, race, health status and if you are a healthy individual you stand some good chances of making a full recovery and leading a normal life. That is not true for everyone, with or without coronavirus. So from this side of things, living with a man who has a disease with 100% mortality rate, can I give a little perspective?
I have one friend who we see almost daily – before and after Pandemic 2020. Every morning I take the boys and the dog for a walk around the neighborhood. On nice days we get to do the “Hause loop”. It’s the longest walk we can do in our neighborhood and it’s nicknamed that because we go by, wait for it, the Hause’s house. We are really original at the Bellina house. Our boys scream for the Hause’s to come to the window or front yard so they can say hi to each other. It’s the highlight of their life right now. I was talking with the mom who is anxious about all this as she is pregnant with twins right now. She’s worried about not having her husband with her when she delivers. Worried that she will get sick and compromise the babies. She could easily go down that rabbit hole but she doesn’t. Because she has perspective. Yes, this disease is especially nerve-wracking for her, but her husband dying in a car crash is more likely. You control what you can and leave the rest up to whatever it is you believe in, fate, God, etc. They are doing everything they need to to limit their contact with the virus. They don’t go out shopping. Her husband washes his clothes when he gets home from the grocery store. I can’t say with certainty they will be fine but I’m going to guess that they will survive this pandemic even though they let their kids outside to say hi to ours. They are choosing to live life instead of live fear.
Another person we have in our life is a mom of one of Kip’s classmates. We aren’t good friends, but we have been in the same orbits for about 5 years now. She has breast cancer, metastatic breast cancer to be specific. This means that no matter how hard she fights or different treatments she tries, she has cancer that has spread inside her body. Norine has 3 kids, little petri dishes. I am sure she kisses, hugs, loves on them when they get home from school even though her immune system is compromised from whichever treatment she is trying to contain her disease. She drives to school and walks in to pick up her daughter. She smiles, laughs, hugs other people and is a ray for her kids (and others) even on the days where I am sure she feels like crap. I see her at the baseball fields in the spring, slathered in SPF with a headscarf on cheering on her sons. Or when she can’t cheer, she is in the stands for them to see and know their mom is there. When she is especially compromised she keeps her distance from others because that is what Norine has to do for her life. But I never see this woman stop her life because she is sick. She is smart about her disease, she is smart about her precautions, and she is living a life she can look back at and say “Wow, that was tough but I was awesome.” Norine does not live fear even though it would be so easy for her to do so.
Now something I know a little more about, ALS. We have been driving this course for 6 years. Matt being especially compromised the past 3-4 years. Pneumonia is one of the leading causes of death in ALS. ALS patients have decreased muscle tone, their diaphragm becomes compromised, they can not cough to clear their lungs, the weight of their chest slowly suffocates them or they choose to cut a permanent hole in their throat and live on a ventilator with skilled nursing care 24/7. This coronavirus turns to pneumonia in a heartbeat. Our lives have not changed much since the “stay-at-home” order except we don’t go to the NAC and I spend a lot less time and money at HomeGoods and TJ Maxx. I also wash my hands the minute I am in the car from the grocery store and wipe down anything that could have touched the cart with baby wipes. I think I am also drinking more wine so some things have changed. As a family that should be scared by this disease because Matt will likely be a part of that mortality rate, a family that is the ones being guarded by the order put in place by our governor, a family that has been in the ICU for a week plus while Matt fights to come back to us, we should be terrified. We are not. We are smart about what we should and should not do, smart about where to go and where to avoid. We have not for the past 4 years and will not now live fear. That’s not awesome. That’s not a life.
Recently our elementary school was going to have a teacher parade. They were going to post the route so families could come to their doors or driveways or walk a little bit and stand on the side of the road and wave as the teachers drove by. I say this was a necessity for our children, our school and our community. It was cancelled. My frustration at this is something I can’t convey. The reason being told was that it was contradictory to the order to “stay-at-home” to give families the option to come outside to wave to their teachers. Fear is why it was cancelled. Fear that gripped some parents so tight that they complained to the school and ruined a happy moment these kids needed. Fear of living life in the face of a virus.
I urge all of you to live your life. You know your family and community better than the President, your governor, your mayor. You know if it is a good idea to let your kids in the room while you watch the news. You know if you want to feed off the fear gripping the country and world right now. You know if it is safe for your kids to ride bikes next to their friends – with no touching and distance. Do everything you can to minimize the risk of this coronavirus spreading, my family is counting on it. You know whether you want to look back at the end of this and see yourself as awesome or scared. I can’t say that one is exclusive to the other, but I can say being awesome is hard to do if you are living a life of fear.