Jury Duty

I received a jury summons several weeks ago. I cannot do jury duty. So, chalk up another plus for lupus patients, I guess. I would love to serve on a jury. I find trials fascinating. Unfortunately, I recognize, too, how corrupt our system is on many levels for Black people. So, maybe it wouldn’t be as interesting now as it would have many years ago. However, I can always be that stubborn person who won’t budge.

 

However, my body limits my ability to participate in this way. The fluorescent lighting might be fine for a day, but an entire week is too much. The county understands, but still wants a note from the doctor. When I lived in Flagstaff, I did not need this. I merely wrote a note describing the problem. My note was pro-jury so maybe that’s why they let it go.

I have been calling my doctor for at least two, maybe three, weeks. I don’t want to check as it might re-irritate me. I have been calling for the last three days and each person tells me the same thing – no response. I was very confused how they could be in the two-story building that houses my doctor’s office and not have more info. It was only today that someone thought to tell me I was talking to a call center somewhere. Ugh.

I was running out of time and was getting ready to just drive over there and talk with the intake people when my husband  demonstrated his genius. He asked, “Why not call and defer it for 90 days and then you’ll have more time.” This is why I married him. When I am all out of patience, he brings it for me. When he needs understanding, I try to do the same. I think I got the better half of this deal though.

But, this episode has got me thinking about doctors and chronically ill people. When I went for care at the U of Chicago as a seminary student, I had a run-in with one doctor that was epic. For me, anyway. During an appointment, I mentioned I hadn’t been to the eye doctor yet. I’m lazy about that. I admit it! It’s my eyesight, right? Her response was to start lecturing me about the dangers and dictating to me what I was going to do. You’re going to do this and you’re going to do that. I stared at her in wonder. I’d heard about these doctors but had been lucky enough to never have one.

The entire time all I could think was, "I’ve been sick way longer than you’ve been a doctor. Who do you think you are?" When she was done, I smiled and asked, “What are you going to do if I don’t?” By pointing out the obvious flaw in her lecture, I kept my cool. She didn’t like that. I don’t remember her response, but I hope she remembered mine. Patients are not just things you push around. We are not here for you, you are here for us. Ideally, we work together.

Today, though, I was the one to lose my cool. It was so frustrating. It felt as though my concerns just didn’t matter. I apologized to the person I was speaking with. I knew she was not at fault. 

Outsourcing services such as this puts an unnecessary layer of management in between the doctor and their patients. In addition, the call center employees are just as helpless as the patient. Now you have two people with no power to effect change. Chronically ill patients do not have the energy or the time to be chasing these things. Adding this extra layer of not-help is disrespectful to patients and their concerns.

Your Eyes Are Friends

One thing about taking Plaquenil is that it can cause changes to your retinas and damage your vision. Such changes are reversible if caught early enough. That means regular visits to the eye doctor. The only thing I hate worse than dilated eyes, is the headache I get from Novocaine when I go to the dentist. It just makes me feel weird and not myself.

I went for my annual visit yesterday and while we were testing my vision, I noticed that I could see the lines better with both eyes than with only one. I asked why and then answered my own question. Our eyes are friends! They work together. Okay, mine only work together when I’m wearing my glasses. But, what a reminder that trying to do everything by oneself is a mugs game. We need other people to survive and flourish.

I’m not just talking about chronically ill people or people with other disabilities, but everyone. We cannot survive without our neighbors. Both our direct neighbors, and our neighbors all over our city or town. One way to begin to pull our country together might be to begin recognizing this in our own lives. Honoring our neighbors for taking care of us and honoring our own actions that benefit our neighbors. Even if that’s just obeying the laws.

By working together, our eyes see better than the sum of each eye alone. The same is true of our social and political lives. I’m gonna look for opportunities to practice this today.

Summer

Today, I am filled with gratitude that I am able to not work outside the home. In other words, I currently do not have to go anywhere in the summer should I choose not to. This keeps me healthy, but it can also be a little bit boring. To be fair, I can get out in the early morning into the cool shade of our backyard. But, once the sun comes fully up, I’m inside. Since the sun doesn’t go down until 9 pm, that means all day. Let’s do an experiment: imagine you are sitting in a dark, air-conditioned house all day. How would you spend your time?

That is the question I face every day. I have three blogs I write. I am working on a book project that I have already mentioned. I’m preparing to get an online masters degree from Iliff School of Theology. That will keep me busy come September! I also do housework, read for both research and pleasure, call and write my senators, and hang out at my favorite blog. I am involved in my presbytery’s effort to address homelessness in our presbytery, and I edit the local homeless newspaper, The Cleveland Street Chronicle. All while inside my home. That might sound suffocating to you, but to me this is freedom.

I get to choose when I go out and by staying in most of the time, I have a better chance of feeling better when I do go out. When I worked full-time outside the home, I barely had the energy to do much of anything else. Keeping up with my family seemed a chore. When I lived in Chicago, I worked outside one day a week. I’m still not sure how I managed that in the summer. I know I was a lot sicker than I thought at the time. We have lived in Cleveland for almost a year, and while the sun is stronger and out longer, I feel better. Because I only go out when I choose.

I have to say, I feel a little unsociable because I don’t stand and talk with the neighbors like my husband does. I hope they understand. I do what I can and wait for the fall when the UV count goes down to manageable levels.