From Punch to Perspective: When Autonomy Fights Back

“Everything happens for a reason.”

Does it though? Honestly, I’m not too sure either way. It is hardest to believe this when terrible things happen. The last 13 months have been pretty terrible for my family. There have been a lot of moments recently that I have questioned something I wasn’t sure I believed in to begin with. 

When the Covid 19 pandemic started, I remember asking my boyfriend at the time if he thought we were supposed to learn something from the devastation we were experiencing. He told me, “nope. Some things just happen.”

I was working in a nursing home at the time, and I’m not sure if you remember, but that was not a great place to be. The National Guard came to test all of our residents and employees. 

That was the first time I had one of those brain ticklers shoved up my nose. Let me tell ya, those things got better before they were handing them out like candy. Those first models were terrible! 

No joke, my face hurt for 2 hours afterwards. 

Some of the residents, especially those with dementia, had to be held down to be tested, and since their family members weren’t allowed in, holding them down was part of my job. Later, we learned gathering an entire floor of residents into one location to make it easier on the National Guard was a good way to spread a deadly disease. 

I feel like the phrase “hindsight is 2020” has a whole new meaning to me now. 

Although it was not what I meant when I asked “are we supposed to learn something,” but we did. We learned not to gather, you know, stay 6 feet apart. We learned how we feel about surgical masks. We learned how to test ourselves for this virus. 

2020 normalized meeting online, having online doctors or other appointments, and working from home. Many people learned greater empathy or understanding for mental illness (or even physical illness. We learned to appreciate some of the silent heroes in our own life, and how fun howling as a group can be… for a short time at least.  

When I asked “Are we supposed to learn something,” I really meant it in a spiritual sense. Like, is this event going to teach us something bigger than us. I’m still not sure if everything, or anything, happens for a reason… but with more distance from the event, I do think there were things to be learned. 

Sometimes I wonder if there are messages or learning moments all around us. Maybe it’s about looking for them, or allowing them to teach us. 

There are things that have happened in my life, and those closest to me, that do not feel they would happen by chance, They feel bigger. 

I do still feel that as humans we have free will. What I am less sure about is, are there lessons, or people, or events that are designed to teach us? 

Lessons, or people, that will continue to be presented in our life to allow us to choose to learn? We are not forced to take the bait, but maybe it will continue to arise for us. 

My step-daughter was diagnosed with Loeys-Dietz when she was around 6 years old. At that time, the diagnosis had only been around for about 10 years. Dr. Loeys and Dr. Dietz had been studying Marfan Syndrome and discovered there were distinct differences. 

Around the time this diagnosis was coming into existence, my husband, at the time just a kid himself, researched and wrote a paper about Marfan Syndrome. I don’t think there’s any way he could have known that this path was in store for him, and I also do not think it was all just by chance. 

What does that mean exactly, I’m not sure. Did these things happen for a reason… Maybe?

My mom recently sent a youtube video about cats, and their spiritual connection with humans. I guess my dad has been listening to “the sleeping prophet” Edgar Cayce, and they wanted to share it with us. 

Basically… with these two stories combined, the thought is that Charlie “chose me,” for a reason. I mean, no. I don’t have actual proof of this, but something about it felt very relatable. I often do feel like she knows more than a pet has any business knowing. Read my story about my connection with her here.

According to Cayce, cats choose humans that they believe they can help. Sometimes, this might even be literal healing. That was wild to me to hear, mostly because it is something I have been saying to my husband for almost a year. 

“It’s like Charlie knows what I need.” 

Jared is sweet to me. He nods along when I say things like that, but I’m not sure he believes it. He’s not judging me for believing it, but he told me he thinks we are given things in life, and it is about how we behave in those moments more than things are “meant to be.” 

I’m still not sold on it myself necessarily, and at the same time there are times when life pieces seem to fall into place in a way that makes it hard for me not to question if there is not some sort of plan. 

Jewel and Ash, for example. I say I “came up with it in the bathroom.” 

This is not untrue exactly… but it might be a little more complicated than that. I was not trying to come up with a name, it was more like it came to me. From where? I am not sure. 

I was up early in the morning, and I just kept thinking about it. I was not totally sure what it meant at first. 

Once I committed to using it, and I thought about it more, the depth of this name started to come to light. The layers started to be seen. 

I wish I could say that I came up with this multilayered concept all at once, and I knew how perfect it was. The truth is, I didn’t know how fully encompassing this name was until I had already committed to using it. Until my husband had already bought the website. 

Now, it feels like it was meant to be. I feel like the name is exactly what I wanted to express. Coming up with this name felt way too easy, and almost like I did not come up with it at all. 

When I was talking with my sister about all of these “coincidences” in both of our lives, and trying to understand more about them, I felt I was overwhelmed with things that just felt tied together. 

Events, that at the time felt meaningless, now almost seem to be lights to a path I didn’t even know I was choosing. 

My degree for undergrad, for instance. I started as undecided, and truthfully I still feel that way sometimes. The school counselor suggested I take a social work class, and then it was my major. It feels random. 

If he would’ve said a different class, would that have put me on a different path? The truth is, I will never know. 

My degree required a practicum, and mine was spending time with a woman with MS who was in her 60s and living in a nursing home. This was in 2009. Medications that exist today to help pause or slow down disease progression did not exist then, or at least not to my knowledge. 

She was in a wheelchair. Her family rarely visited her. She still had a positive attitude, and found ways to have fun. When I went to visit her every week, we would sit outside and count two door trucks as they passed by. Sometimes, when we wanted a challenge, we would only count the red ones. 

Her hands were contracted, which made it very hard for her to get around on her own. Sometimes we would go for a walk in the park that was attached to the property. She knew every pot hole or bumpy sidewalk area. 

I remember thinking she was dramatic, or too focused on the little things. Until one day when I was pushing her wheelchair over a foot bridge and I went over a bump too quickly. She almost fell forward out of the chair. 

At the time, I felt really bad. Especially when I saw the fear on her face. Now that I have experienced many of the same things, I have a greater understanding. 

She was out of control at that moment. Completely. Her hands were not strong enough to stop it, or catch herself. 

I think she knew I meant well, and I was kind. For me, now at least, there would also have been an element of not wanting to lose a human connection. Maybe some guilt for being a burden to this “kid” that was spending time with me. 

At 21, 60 something felt old. Now, at 37 it doesn’t. My parents are 60 something. I can’t imagine them living in a nursing home and not being able to take care of themselves. 

My grandpa, at almost 90, is going through this right now. He has Parkinson’s Plus. 

Yeah… I didn’t know that was a thing either. It’s a neurological disease, more complex and more difficult to treat than Parkinson’s. 

There have been many moments in the last year that I have felt like I can relate to my grandpa. His symptoms and disease progression are much more advanced and worse than mine, yet I feel like I can relate to the emotions. 

We are lucky that my mom, aunts, and uncles have been able to provide 24 hour care for him at home, and he has not needed to live away from his house for long. He has had a few hospital stays, and then a few weeks at a rehab facility to get stronger before going back home. 

He, like many of us, does not like to be away from home. Most of his life he did not need to rely on others to get his needs met, and struggles to ask others for help. 

This is another way I can relate to his experience. I am not as independent as Grandpa. Honestly, I think few people are. But, I am not a fan of asking for help. 

I would rather just figure it out on my own. 

MS has mostly taken that privilege away from me. I need help now with things I have been doing for a long time. Things I feel like I should be able to manage. 

This feeling of having my independence taken away from me reminds me of another person I worked with in my career that had MS. 

You know, since my diagnosis, a lot of people have told me, “oh, I know [insert random person] they have MS, and they are doing great!”

Not only does this not help me feel better, and feelings invalidating to my own personal struggle, it has not been my experience with people I have known with MS. In addition to the woman during my practicum in a wheelchair in her 60s, there was a resident at the nursing home I worked at in 2020 with MS. 

He was 42. 

His mom helped him pick our location for two reasons. 1. We took Medicaid, and 2. His grandmother (her mom) also lived there. 

He was 42. 

By 2020, there were disease modifying therapies (DMTs) that were found to be effective and safe to use. I didn’t know it then, but now that I have a neurologist, and have had the conversation about what DMTs would be right for me, I know it would have been true for him then as well. 

The difference was, he did not want medications, mostly because he did not want the side effects and did not want to use needles. At the time, I did not pay attention to the names of the medications, but I remember his mom explaining to me how many advancements had happened recently for MS treatment, and how important it was to her for him to reconsider his choice not to treat his disease. 

He was 42. 

I don’t remember how old he was when he was diagnosed, but I do remember him saying that the treatments had been worse than the disease. I’m not going to say I didn’t believe him, but this didn’t make sense to me. He was in a wheelchair 95% of the time, and only able to use a walker when he was with physical therapy. 

They had told him, and me, that his muscles would likely not recover or change. At the time, I did not recognize that the medication would not change this either. Once the damage is done, to my knowledge, there’s no going back. 

Although I could tell this was hard for him, I did not understand his choices at the time. Now, I have made other decisions in my own treatment, but I have a lot more empathy for the struggles he was experiencing. 

He was only 42 years old. All of his independence had been taken from him. Especially in a nursing home in 2020. He couldn’t leave his room, much less the building, without permission. There was so much fear that the virus we didn’t know much about was going to be brought in a kill residents. 

Then, the fear became reality. It did get in, many times. And it did kill residents. A lot of them. 

The choices about how privileges were not made by me, or even ownership of the home. In many cases they were well outside of our control too. The county, state, or sometimes even national mandates told us what was and was not allowed. 

He didn’t want to be in a nursing home, HE WAS 42 years old! Okay, I’ll stop saying it, but just imagine. He was stuck in a building with people the age of his grandma. No one in, no one out. He couldn’t even order food to be delivered. 

Then, another rule was made. All of these rules were made out of fear. Although I completely understand the fear, because the impact was very real, there was not always a lot of logic to the timing and impact of the rules. 

Residents were no longer allowed to go outside to smoke. I mean, they were also not allowed to smoke inside… but surprisingly, the smoking was not the only problem. They couldn’t leave their rooms. 

We had an outbreak, and we didn’t yet know how to control it. I say “yet,” like we ever learned to control it. I don’t think that was ever the case. The management of the virus just changed. 

At the time, the fear was so high, no resident was allowed to leave their room or the floor they were on if there was an outbreak. We had one. We were on the 3rd floor, and he smoked. 

I first heard the commotion from my office. Yelling and banging noises. 

One of the CNA’s came running into my office, panic all over her face. “We need you,” is all she said. 

He was standing, sort of, using his walker… I’m not sure why. The nurse was standing between him and the elevator repeatedly saying, “you can’t go! There’s and outbreak! You have to stay here.”

He could barely stand. He told her how much he didn’t care about the rules, and used a lot of language I won’t repeat. 

I remember thinking, “what do they want me to do?” So, I walked up to them, and tried to stay calm. “What’s going on?” 

Now, I feel like that was a dumb question, and probably would’ve annoyed me as much as it did him. 

When she saw I was there, the nurse sighed, and walked away from the situation. I did my best to stay calm, mostly because the situation was anything but. 

“I’m going outside, I’m buying cigarettes, and you can’t stop me.” He could barely stand. I now have firsthand knowledge how detrimental stress can be on your nervous system. Poor guy. 

I could hear the nurse and the CNAs working themselves back up when they heard him say this. To be honest, I wasn’t sure he was going to make it across the parking lot to the liquor store where the residents all bought their contraband. 

“Where is your wheelchair?” I’m not sure what my plan was in asking him that question, especially with the continued education I not have in how our brain works in emotional situations. He was not able to have this type of conversation with me. 

He escalated again, yelling at me trying to push me out of the way. At the time it didn’t make sense to me. I thought I was trying to help him. Honestly, I felt for him. 

Then, he punched me. Right in the stomach. Surprisingly hard. 

He got on the elevator, and left the floor. At that point, the emotion of the floor staff erupted. I was just trying to breathe again. Turns out once I breathed out, which felt very counterintuitive at the time, I was fine. 

When I look at it now, I see a much different story. He wanted to have some control of his life, of his situation. Every choice he was making there was one (or multiple) people telling him why he was wrong. 

He just wanted to be. He didn’t want someone to take care of things for him, or tell him what he should do, or even have to think about everyone else. His body was literally attacking itself every second of every day. 

This virus was not that big of a deal to him. He didn’t really care. 

I didn’t get it then. 

I see it differently now. My choices have been different than his, and my life has been different than his, but I get it. 

At least I think I do. It sucks to be both that old and that young at the same time, and feel like your autonomy have been taken from you. 

It sucks a lot. 

And that is before we get into the effect MS has on the brain itself. The brain damage that occurs. (read my story about that here)

I would encourage us all to just take a breath. Try to understand yourself and others. We all just want to be okay, and live our life. 

Whether you are experiencing chronic illness or not, I think the feeling of wanting to make your own choices is probably relatable to you. Also, regardless of your job, and if you have been a parent or not, I bet you can also relate to wishing you could stop potential harm from happening to yourself or people you love. 

Our brains literally have one main job, and it is to keep us alive. 

So, take a breath. Listen to others emotions when you can, and walk away when you cant. 

Forgive others when they punch you in the stomach, and recognize they were just trying to stay alive.