During the past week, there was a heavy discussion in an RP support group about independence issues with RP. Is really about losing independence or being inconvenienced? Is it about mobilty? What's the difference? I'd say it's interrelated.
Let me describe what I felt after giving up driving before we move on to independence, inconvenience, and mobility.
At some point, some beyond that point, we realize we can not keep driving, for whatever reasons-vision problems, health, age, etc.
If you are still driving, but walking into things, do you really think you should be behind the wheel of a vehicle?
You think, Okay, I'll scan more; I'll look left to right more. I can't see anything below my nose, but I can quick glance down at the dashboard to check how fast I am going. (It's so easy for the brain to make you feel like you see more than you think you can.)
Quick description of retinitis pigmentosa (RP)-the first signs are night-blindness, followed by loss of peripheral vision. Central vision (tunnel vision) may be retained or slowly get narrower.
The first thing I did, though, was stop driving at night. I hated being caught in the dark. If I was driving when the sun started to set, I would panic and hope I made all the green lights. I wanted to get home as quickly as possible.
There is a train that cut through town. It always chugged through between 4:30-5:00 p.m. When I got home from work, I had to get to the other side of town to pick up my daughter and it almost never failed, I got stuck by the train on the way home. (We all know in the winter hours, it gets dark around 4:30. At least, it does here.) My oldest daughter and I would sing, "Train, train, go away. Go find another way."
I made arrangements to get rides with co-workers, because it got too dark in the morinings to drive. I paid them for their gas.
I did a lot of things to narrow down any distractions while I was driving. I didn't want any talking while I was driving. Towards the end of my driving "career", I kept the radio off. I thought I was hearing sirens when it was coming from the radio. I wanted to be on the lookout for ambulances and fire trucks.
I avoided left turns unless I was at an intersection that had either four-way stop signs or traffic lights. Sometimes I went out of my way and added a few extra blocks to my route because I made a right turn.
I was doing okay driving in the daylight hours. Soon, the lengthening shadows of the trees from the late afternoon sun made it too "dark" for me to see the road clearly. And on rainy days or when the roads were wet, it cast a shine (glare) on the road that made it hard to see. (Glare is another enemy to us RPers.)
What made me to finally give up driving was the fact that I got "whiteouts". This would happen when I had to adjust to the sunlight after being inside a building. Just stepping outside (it didn't matter if I had sunglasses on or not) made everything appear white until my eyes adjusted to the light. Imagine driving and making a right turn--facing the sun. My eyes would get instant whiteouts. It took a few seconds to adjust before I would give the car a little gas to speed up. Finally, I told Hubby I had to "hang up" the keys. For good.
To be honest, I don't know if he was "listening". Was he in denial? Did he think it was safe for me to continue driving? I guess I was glad that I did this on my own. No one took my driver's license away. I knew it was time. I was ready. Around this time, we were planning a trip to visit my FIL and his girlfriend.
Ironically, it was they who finally drilled into him that I shouldn't be driving.
Within days I was snappy and depressed. At times I was tempted to hop into the car and drive. No longer could I just go anywhere I wanted, when I wanted. I had to PLAN. I had to give advance notice if I wanted to get anywhere. I lost my independence.
Sometimes I got a taxi; sometimes I walked. I didn't want to ride a bike, because I didn't trust my hearing to listen for cars. I grew more frustrated, because I like being punctual. Taxis are late or busy. At first I gave my husband lots of space. I didn't want to "bother" him. He was used to doing his "thing". I did all the "boring" stuff. Go grocery shopping. Get the kids new shoes. Take them to the big park. Visit some relatives. I felt like a burden, that I was inconveniencing others. It didn't matter if it ended up inconveniencing me to fit their schedule, especially if it meant I could get something done. In other words, I was not the only one adjusting. My family had to adjust with me. It's getting a little better, day by day. I don't drive. That's that.)
I've had to swallow my pride. I hated, and still hate, to ask for rides. I was afraid of being turned down or appearing desperate. When someone offers, sometimes I'll take him/her up on it, sometimes I don't. It depends. Most of the time, I walk. Dentist appointment? Walk. Hair cut appointment? Walk. I want to be sure I am on time. Sometimes I can't depend on taxis unless I tell them to pick me up an hour earlier than the appointment time just to ensure I am on time if they are delayed. (It's more of an inconvenience, if you ask me.) I find I am shorter on patience these days. Don't get me started on city transit. To get from Point A to Point B, it can be an hour an a half. Might as well walk a half an hour to get where I need to go.
What makes it harder is that sometimes it's not just for me. I have to arrange rides for my kids, too. (Sometimes for the three of us.) I've been lucky that their school was only eight blocks away so that they didn't really have too far to walk/ride a bike to school.
Now, my oldest is entering high school (a good 45 minute walk/20 minute bike ride) this fall. I may end up asking a neighbor who has a teenager going to the same school, if she'd be willing to pick up my oldest on the way to school.
Because the elementary school my kids were going to is getting old and there is no room to modernize it, the church and school is building a new church and school on the outskirts of town. I've mentioned my dilemma to the principal. The school bus service won't pick up my kids because they aren't a "special needs" child. (I wrote about this in a previous post.) So far, I haven't heard anything. (Moving out to the country just to get bus service is not a good option for me because the proximity to other services/businesses I have now would be gone, too.) I may start calling some parents to see if they drive by or live in the area and can pick her up/drop her off for me. Paying for gas is not a problem. As far as I am concerned, I have no car payment, no car insurance, no maintenance or gas to pay for, so it's not a big deal.
Getting back to the words "independence", "inconvenience", and "mobilty", what do they really mean?
Dictionary,net-1) The state or quality of being independent, freedom from dependence, exemption from reliance on, or control by, others, self-subsistence or mantenance; direction of one's own affairs withour interferece. 2) Sufficient means for a comfortable liveihood.
What is inconvenience?
Dictionary.net-1) The quality or condition of being inconvenient, want of convenience, unfitness, unsuitableness, inexpediency, awkwardness, as, the inconvenience of the arrangement. 2) That which gives trouble, embarrassment, or uneasiness, disadvantage, anything that disturbs quiet, impedes prosperity, or increases the difficulty of action or success, such as, one inconvnience of life is proverty.
What is mobilty?
Konsult-ease of moving about. Often specifically meaning access to a priviate vehicle for travel.
St. Louis Great Steets-Movement of people or goods within the transportation system.
Word.net-Quality of moving freely
Giving up driving is a loss of independence. It is an inconvenience to rely on others. Is it, then a state of mind? You can be "independent" as far as making decisions for yourself, but it would take a lot of adjustment to change the mindset that "independence" isn't about having your own car to go anywhere at a moment's notice. You just shift your "dependence" on your car to "dependence" on others. It is far easier to "depend" on your car and provide your own transport.
Transportation is a big issue. In our society, it is the norm to own your own car, thus providing your own transport at your convenience. I do not live in NYC or Chicago where subways are a common mode of transport. I do a lot of walking so I can retain some semblance of "control" over my independence.
Where does mobility come in? Finding other options of getting around.
There will come a time when just walking around freely may be just as "dangerous" as driving was. I will need to find other ways to remaim mobile to stay "independent". This will be my next step: The white cane. (Scary prospect, but for me to maintain mobility and independence, I will have to face that.)
I am a "closet" RPer in a lot of ways. Some people just don't realize I have a vision problem until I tell them. If they did notice something was wrong, they may attribute it to my hearing loss. If someone is trying to talk to me, I may scan my eyes to find the speaker. They may just think that I am trying to find the speaker by sound, not by sight. I will have to overcome my fear of coming out of the proverbial closet. The only way that can be done is to start doing it. The more you do it, the easier it is. As one RPer said, "I am too busy watching where I am going to pay attention to people's reactions."
Thanks for "listening".
Labels: RP/Usher Syndrome