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When No One Speaks

In July I attended a webinar on diversity. The presenter knew two things: people of color and compassion for the LGBTQIA2S community. And the presentation, or lack thereof, bombed. Just my opinion, but I know something about the subject.

What really bugged me is that he really didn’t have any presentation; he wanted people to ask him questions, and the hour was Americentric. It was an hour I’ll never get back.

Many people, when they attempt to speak about diversity, completely ignore the community that intersects all communities: the disabled. It is as if they have blinders to the reality that someday, they could become a card-carrying member of the disabled population.

When these conversations occur, if we’re mentioned at all, it is as an afterthought. This really bugs me! We have conversations about everything else that is diversity, and we even talk about use of white privilege and economic privilege, and the disabled are left blowing in the wind.

The voices that should stand for us don’t really show. Parents show for their children. Who stands for the vulnerable adults? Special interest groups? Many of those groups focus on children.

I’ve stood for myself, and I sure wish someone would use their privilege to stand for me. I’m worn out from being the justice warrior in this area. I may be an enneagram type eight, but who will speak for me when I need assistance? For the most part, I’m left to find it on my own.

Finding it on your own can be messy. And the mess in my life came to a crashing halt days after that webinar.

Lessons From Room A341

It began on July 20th, after a day in Utrecht. I woke up tired and attributed it to the running around I’d done the previous day. By Saturday morning, I had to fight to get out of bed, and Sunday I felt awful. Monday, I let the sick state of being take over, thinking that resting, plenty of fluids, and eating would fix the situation. It got worse. The next Sunday, I knew I’d better call the doctor’s office. I was sicker than I’d ever been in my life, and my gut was telling me that I needed to get to the hospital. I also needed the doctor to make a house call. My head was working well enough to know that I couldn’t care for myself. In the past week, I’d become disoriented during the night and couldn’t find my way out of my bed or my room. I couldn’t even think straight enough to turn my lamp on. This was bad. I also knew I was a physical mess. So, Monday morning I rang up the doctor’s office, and around 5:00 PM the doctor came. She called the ambulance, and I settled into more of the disorientation that was present. I was finally able to just lay in a bed.

After eight hours in an ER, and the staff finally able to get the proper IV and other things inserted into my body, I was moved to a room on the same floor for observation. That Tuesday, they finally sent me upstairs to a room. I think it was evening by then. Wednesday, after cultures were grown, I found out my diagnosis. I’ll say that it wasn’t the E. coli that was doing bad things to me—they could cure that with antibiotics—it was the kidneys and my diabetes that went completely out of control. My personal education was about to expand, and I was also about to expand other people’s education as I lay in a bed in room A341.

If there is one thing I don’t like, it is having to explain the why of, after over twenty years of living in this wonderful country, my Dutch is so bad, and why I can’t speak more of it. Being hearing impaired and learning Dutch do not pair well. As languages go, this one is like a spoiled child who keeps wanting to change the rules because no one has told them NO. I lay in the bed, minus my hearing aids, having to tell people to speak only English. The fact that my vision was bugging out on me was less of a worry. I also had to deal with that.

I’m having to explain this to people when I’m really sick, not fully understanding what is going on, and my head is being hit with not knowing what I need to do to process it all. And, to top it off, I’m weak.

I’ve come to the conclusion that teaching hospitals at universities work better for me. I don’t have to explain things.

I’m angry, and all I want is to be shown some consideration, because nothing is working correctly. Why do I need to explain this to everyone? I fantasized about what I’d say when I could write. I don’t remember what I thought. I do remember that it hurt to think about it. I was really too sick to think straight.

The Upside and the Downside

Having my meals brought to me, and discovering that someone in the kitchen was able to do fish that tasted amazing, was wonderful. I had to admit that if one is sick, this is the way to do it. Yet, not having physical visitors took its toll. Messenger and Zoom phone helped with that.

Most of what I’ve learned I’ve discovered since discharge. It’s been eye opening.

When I use the word “sick” in the bullet points below, I am speaking of the “sick” that puts one in the hospital, and that requires longer recovery periods:

  • Being sick can cause trauma to build.
  • Being sick can cause someone to become self-centered.
  • Being sick can close our eyes to the lessons we need to learn around our own situations, and how we treat others.
  • Being sick means we need to listen to others when they tell us to slow down and nap during the day.

I feel awful about the self-centeredness and realize now that it stemmed from trying to recover too fast.

I’m convinced that there are times when nursing staff don’t understand the behavior they are seeing. Trauma can build due to uncertainty, and in the early days of my hospitalization, I didn’t understand that what was going on could have killed me. I was in a daze, and nobody picked up on it. I had told a friend during my time at home that “I don’t have good sick skills.” This is because as a child, what I learned post all of the normal stuff children get was not much. I was a healthy person. It has caught up with me. It is also my personality. I don’t like to stay in bed. I share this because of the fourth bullet point listed above. My doctor told me to take the time to nap if I felt I was tired. She also told me to begin to build up walking strength slowly using my treadmill. I tried to ignore self-care the first few days I was home. Then I made an effort to follow her suggestions, and I found that my strength was returning! 

If we listen to our bodies, we can learn wonderful things! It’s been over a month since this began, and today I’m enjoying a pleasant afternoon at my computer. I’m gaining strength, enjoying insights, learning about myself and others, and understanding that my challenge is to keep healthy in new ways. I’ll keep this short so that I can exercise a wee bit of self-care. I’m doing well with this new routine of mine. I just wish I wouldn’t need to do so much explaining… and yet that is what we in the disabled community must do.

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