January 26 - In the Kitchen

The kitchen can be an interesting place for someone with little or no sight. For myself, I know that I need to be super organized. The main reason for this is to stave off frustration and the other part is a simple safety issue.

I start my organizing when groceries first come into the house. I am fortunate in that Lyle is there to identify the various cans and packages that I have ordered. I line up the cans of soup, beans, etc. in a particular order in the pantry cupboard. One of my friends who is totally without sight and living alone has an arrangement with the grocery delivery person. This young lad puts her groceries away wherever she tells him they belong. She used to use braille strips but now relies on memory. People with visual challenges often rely on memory for many daily tasks.

I find frozen packages more difficult to identify. I can feel things like french fries through the outside of the package but other items aren’t so easily identifiable. I recall the time that I tried to fry frozen corn instead of hash browns. Only when they were cooking did I realize my mistake.

I’m not fond of working with other people in my kitchen. Family is different. They all know that my quirks are often safety issues. For instance, they know not to leave glass tumblers or coffee cups in the sink. I don’t tend to see these and can all too easily bang a heavy saucepan down on top of them. They know not to put sharp objects in the dishwater if I am the one washing the dishes. They know not to rush around me when I am in the kitchen. They know that I need to work more slowly and carefully than someone with full sight.

As far as cooking goes...I have my regular recipes. I prefer casseroles or using a crock pot. I’m fortunate in that Lyle likes to barbeque and so often I am only responsible for the vegetables. Undercooked vegetables aren’t as much a concern as undercooked meat!

So, speaking of being in the kitchen, that should be where I am heading to next. Low vision or not, I like to eat!

 

January 20 - White Canes in Winter

Walking with a white cane in winter weather can be a daunting experience. The challenge of negotiating freezing cold and snowbound sidewalks is difficult for many, but especially so for people with mobility challenges. I never look forward to those inclement winter days and was pleased when this past week CNIB introduced an initiative to advocate for better snow removal.

In its communication, CNIB encouraged people to self-advocate when they encounter poor snow removal practices in their own communities. We could do this by bringing hazard spots to the attention of municipalities, businesses, snow removal contractors and homeowners who might be responsible for keeping these pathways clear. Regardless of the weather and the season, pedestrian walkways should be accessible to everyone. The campaign hopes to make us all aware of this important issue.

While I am writing this about snow removal, this isn’t the only challenge of winter weather. This past week or so has been extraordinarily cold and I find holding my cane uncomfortable to say the least. If I wear light gloves or mitts, the cane is too cold to hold. If I wear heavy mitts, grasping the cane is awkward. The heavy gloves also lessen the sensation of my grasp on the handle of the cane.

Winter weather can be difficult for many of us who have mobility issues but still want or need to be outside. I am glad that CNIB is addressing this problem with its self-advocacy initiative. You can read more about the SnoWay campaign on the CNIB website by clicking here.

January 9 - Do I Look Blind?

For the most part, I don’t worry about my appearance. Certainly, before I step out the door I comb my hair and hope that my clothes match but I don’t worry unduly about how I look. Definitely I don’t stop to think and worry that other people might or might not point me out as being blind.

This brings me to a day before Christmas. Lyle and I were in Costco. We were doing a little bit of last minute shopping after an appointment in the city. I wasn’t wearing my low vision ID badge and I wasn’t using my white cane. So, when we stopped in the aisle to sample one of those sample goodies, I was quite surprised when the woman manning the counter asked me if I had macular degeneration. I was taken aback. Did I look blind?

When I told my daughter about this experience, she told me that although usually I appear to be someone with sight, when I reach for something, just as I did in Costco that day, my eyes sometimes seem to wander as I reach out searching to grasp the object. I hadn’t thought about this before, but I know that she was right. I am always careful when I am on the receiving end of something being handed to me.

Jen and I agreed that the question from this stranger was a little intrusive, but then Jen asked if the woman seemed to have a particular reason for her question. She said that often people will ask if they have a story of their own to tell. Indeed this was the case. Once I affirmed that I did have a vision problem, the woman launched into a story about her sister who had recently been diagnosed with macular degeneration. From that point on in the exchange, all I needed to do was to nod.

So, while I usually use my low vision badge and white cane to intentionally alert other people to my visual challenges, it seems that I don’t always need these aids. I just need to be myself - after all, I am legally blind.

January 1 - Keeping Current

When I was first diagnosed with my particular eye condition, I read everything I could about it. Although I wouldn’t classify my condition as rare, it isn’t especially common either. My initial reading told me that my eye disease was inherent, and that there was no cure or preventative measures to stall further sight loss. At least I now had a name to what I was experiencing.

So, if there is no cure, why then is it important to keep current with recent research and developments? Because my eye condition is not common, I have found that not all eye health care practitioners are aware of it. In fact, initially I was misdiagnosed with another eye condition.  I need to be able to advocate for my self and to stay informed.

Unfortunately I have been a little lax about this as time has passed. However, a few weeks ago my sister Jill found a 2018 update on the Web. There is still no cure for PXE, but there was certainly more information than I had found in the past.

For instance, some of the symptoms that I have noticed in my physical health are actually connected to my disease. I have often laughed at the fact that doctors and nurses find it difficult to feel and detect a pulse in my wrist. Until the 2018 article I had passed this off as merely coincidental. Now I have learned that the phenomenon is related to poor circulation in my hands and feet and that is part of PXE.

More importantly, there are other possible adverse effects of my disease. While I haven’t experienced any of these, now that I am more informed I can at least be vigilant and watchful. I would not expect that my regular local physician would be immediately knowledgeable about the other aspects of PXE. For me, this is a good reason for me to stay current. I am the keeper of my own physical health. I need to be able to advocate for myself and to keep to date on research that might affect me.