disability

Holy week is unique in 2018

On April 1, 2010 I had a cardiac arrest at work. I was able to survive, but have been disabled since them. Despite my best efforts, I haven’t been able to work and the biggest long term accomplishment is that I’ve lived independently since then. Considering the length of time I was on CPR before my heart rhythm was restored, that’s no small matter, although I tend to take it for granted.

In addition, I was never in a coma and woke up the next day which was Good Friday. I had no broken ribs from the CPR and had no coronary artery disease when they did the heart catheterization.

This year, the 8th anniversary of the crisis, April 1 is Easter. That’s hard not to notice and it has a symbolic significance, if nothing else. Some of my friends with special dates such as the date of a death in the family, getting off drugs and alcohol or a divorce, the period leading up to the anniversary can be difficult.

This month I had a psychiatric crisis and was in the hospital for 10 days. Although it was triggered by a medication change, the day before my admission, my computers were doing impossible things. For example, one spontaneously started playing a recording of an learning day event I had recorded from a couple years ago. I do not even know where the files are and the tablet playing them had never had the audio files on them. One computer had the icons in the task bar counting in binary and there were other peculiar things as well. It was more than I could handle at the time and I haven’t looked very closely at it either–I don’t need to freak out again thinking dark agencies were at work against me. There were more than 8 files identified as being corrupted with viruses on my laptop and it was too much. However, I didn’t fold, throw down the cards and run.

It freaked me out extremely. As the last day unfolded, I became unable to do even some basic tasks like organize my medication tray. I discovered when I got home that some medications were causing bad effects when I took them.

This years, the weeks leading up to Easter are turning out to be difficult. Despite my decreased level of functioning (Now it *is* an accomplishment to be living independently), I’m hopeful that I can begin working again. No one has told me that it is not realistic, but they don’t want to dash my hopes. As a result, I haven’t got feedback how it’s unlikely that I’ll succeed, but I notice that unlikely and impossible are not the same.

I’m really thin emotionally and get sad and weepy really easily. I also have a lot more empathic understanding and am really good a recognizing other people’s challenges and try to help them as much as I can in a kind manner when I can.

I’ve made it through difficult times in the past and never given up trying to reach a fulfilling life. I have a lot of strengths, but putting it all together isn’t possible (today). I don’t have to run from my painful experiences and have faith that they are leading me forward. Easter is a celebration of rebirth and new beginnings.

I hope that I have a similar experience.

On cameras

Out here we’ve been having a lot of fun watching the two babies. They both just turned one. They have really different personalities… not really surprising but it’s nice to see them become their own individuals.

I’ve had a Canon PowerShot camera for a long time. It’s not high end. I prefer buying mid-range devices.  Often my theory is to buy the second least expensive or second most expensive.

I never use my phone camera. For a long time I had it blinded until I wanted to take pictures of the Magna Carta and Declaration of Independence at the library. I’m sensitive to privacy concerns and go to longer lengths than most people, thus the blind camera.

So, the real camera I have includes some nice properties that I like.  Some are on the phone but I haven’t used them consistently to know how to put them together with the phone.

I like being able to power the camera up in a moment’s notice.  The optical zoom is convenient for taking pictures with closeups, for example, of kids and an adult.

My sister is a professional photographer so she explained how to use features I didn’t know were there. I’ll get the real manual to learn more.

I like exploring the different options of a technology to see how they work. One feature I’d never used was changing the criteria for light metering. I wanted to take some pictures that were back lighted by a window.  Changing light metering and the manual option let those come out well. It looks like controlling the auto-focus and automatic light metering independently may not be possible.

It would be fun to write reviews for software or devices after becoming an advanced user. My first impression may being unnecessarily negative or undeservedly positive.

Another thing that is nice about the real camera is that I can hand it to someone else. They’ll know right away what to do. I don’t have to worry whether they’ve only used a Windows phone and won’t know how to use mine without some encouragement.

Almost everybody left a little bit ago so I won’t be taking many more pictures.

We’ll head home tomorrow.  First we’ll go to Indy and then Fort Wayne… not the direct route,  but my car is in Indy right now and my sister’s step-grandson needs to be in Indy as well.

This afternoon, my sister left for Cornell to do more research for her history PhD. Part of her studies are about disabilities rights and their evolution. It’s a challenging topic because personal autonomy and desires may not match the expectations of the majority. Most people have their own definition of what is a “valid” life. A doctor or legislator may demand a certain lifestyle as if it was the only one that is acceptable.  On one hand, it is desirable for a person to achieve all that they are capable of, and on the other, a person may choose for themselves to reject that expectation.

It’s so easy to look at a few specific examples of a life and generalize that it applies to everyone.  Life has infinite complexity, so deciding for someone else their needs uses broad brushstrokes. But that ignores the subtleties and nuances where the artist has used the lightest touch… where meaning resides.