Learning to Reach

January 1994 we spent a long weekend in San Francisco for Dave's birthday. It was also when the biggest sail boat show on the west coast, Sail Expo, took place. Besides the boats in the water there were vendors for dinghies, custom mattresses, outboard motors, emergency beacons, pans, life jackets and about anything else you could think of. One of the attractions for us was the seminars. We had signed up for a few including engine maintenance, food storage and favorite cruising spots off the pacific coast of Mexico. All of this lead to future plans. But wait, it all began much earlier. Friends called and said they were looking at chartering a sailboat in the Caribbean and would we like to join them. We asked a few questions, discussed dates and then we said yes. After looking at many options Patty selected the vessel Encore owned and operated by Ann and Marvin. Five of us went, Tom and Patty and Patty's sister Chris and us. Four engineers and me. Then we found what a perfect choice Patty made. Marvin is also an engineer and Ann was an English major. Soon those with engineering degrees were discussing how the wind provided lift and other technical things. Meanwhile Ann and I talked books. It was a wonderful week of swimming, snorkelling, sailing a one person boat and having a great time. We had so much fun that we took the kids two years later. It was just as good. One of the bonuses of the boat being owner operated was that they could go more places than other charter boats. Consequently we often anchored in " hidey-holes" where there was only room for very few boats. Both kids had fun with all the various toys; windsurfer, snorkel gear, underwater camera, and one person sailboat called a mini-fish. One of my favorite memories is watching them sailing the mini-fish. They went downwind and across with little problem, only dumping each other a few times. The fun began when they tried to go upwind back to Encore. Finally they gave up. Being competitive swimmers it was much easier to swim pushing the mini-fish back. We all had such a good time and talked about it so much that Dave's dad, Jim, said if we ever went again he wanted to go. Our next adventure was chartering a sailboat in Hawaii ending in Maui where Dave's parents had a condo. They had rented another condo so the whole family was all together. We discovered several things during that charter. One was the difference between a single hull and a trimeran. Second was that people really do get green when seasick. Poor Kari did not enjoy those five days. After Todd graduated from high school we decided to go to Encore again since it might be our last opportunity for a family vacation. Of course we invited Jim. Dave's mother took the opportunity to visit a long time friend in Florida. Again everyone had a great time. It was also a time for Dave to continue quizzing Marvin about boat maintenance and navigation. I continued to learn about food storage and preparation. One fun thing was grocery shopping in different areas. The British Virgin Islands reflected their heritage. I was excited to discover several different curry blends. Good thing we did not have TSA inspectors at that time. They would have thought I was trying to hide something with the strong curry smell. Three years later when Kari graduated from high school we went again. This time with an added bonus. The charter guests after us wanted to be picked up in Saint Martin. Would we like to explore that area too and would we like to help on the passage. Dave jumped on the opportunity to be on the passage as did Todd. Kari could only think about her experience in Hawaii and wanted to join them in Saint Martin. Dave, Todd and then girlfriend now wife, Cindy flew to Saint Thomas 5 days early and took a few days to aclamate and show Cindy some highlights before making the passage. So Kari Jim and I flew to Saint Martin most where they met us. This was a fun area to visit because there is Dutch and French islands. Of course everybody had a great time. Ann and Marvin had a policy that after four charters the 5th is free because by then you are friends. That was true for us. Once again we helped move Encore to Saint Martin and did some maintenance that Dave loved. As Dave became more enamored with everything about sailing I decided I better learn a little too. This was really the first time I had tried the mini-fish. After I dumped him a few times Marvin tied a very long rope to the base of the mast and left me to figure it out on my own. All of these experiences led Dave to subscribe to sailing magazines and going to boat shows. After one show he came home and said he found the boat he wanted to buy. I decided that I better get interested if I wanted to remain in his life. Therefore the trip to San Francisco was my way of saying I am with you. While there I looked at sailing schools. We had learned playing tennis that some things were better done separately. I found the right place to learn. The women's sailing association was sponsoring a learn to sail womens week at several sailing schools. I signed up for one on the west coast of Florida. Might as well have sun and warm water. It was a great choice. All of these experiences led to our choice to buy a sailboat and later leave the routine and marina behind. It also shaped and prepared us for unexpected twists and turns of life. One of the sailing magazines gave me a favorite saying. The difference between ordeal and adventure is attitude.

ready

I have been doing more writing and thought I had posted some. When I went back see which ones I discovered I had not posted any. Be ready there will be some long entries.

Smart Grandsons

Mothers day dinner was fun. For some reason Sam was fixated on a question. If you always move halfway to a destination do you ever get there. After some discussion he started with the idea that if you were half way there the next time you would be a fourth. Then 1/8, 1/16, 1/32, 1/64, 1/128, 1/256 and on to 1/512, 1/1024. Then would that be apart or a hair apart. Meanwhile I was impressed with his understanding of the concept that he developed on his own. Also how quickly he did the math in his head for a 3rd grade kid. Second grade Miles also did the math. Of course even that did not answer the question. What do you think? If you always went halfway to your destination would you ever get there?

Flash Back

On one of our walks recently we came across a young man trying to start his lawn mower. Judging by the look of the lawn it was the first time this season. As he repeatedly pulled the starter rope and adjusted the choke I was reminded of an outboard motor we had. As it is with most two stroke engines ours was difficult to start. Usually after they are warm they start easier. If I wanted to go some place without Dave I had to be able to start the motor. More importantly if he went some place with someone else I needed to be able to start it. I could put the dinghy in the water and lower the engine using the hoist but still could not start it. So that became my next goal. The comedy began. First Dave started it so it was not completely cold. Now it was my turn. I had previously attempted doing it like most do. That was sitting and pulling quickly on the rope. That had never worked even with a warm engine. So had to try something else. First I tried pulling with both hands. As I tumbled backward over the seat ending up on my back the comedy began. There I was on my back on the dinghy floor with my feet up in the air over the seat. Rather like an upside-down turtle. Did you know when you are laughing it is hard to sit up? Good thing Dave was sitting down or he might have fallen in when laughing. Finally got the engine to cough when I straddled the seat and pulled with my whole body. Now I was making progress. After a few more tries I did it! Okay now for the trial run. I took Dave to a friends boat where the guys were supposed to listen on the radio in about an hour in case we needed help. Their outboard was bigger and even harder to start so the guys wanted to take it to go diving. Off we went to our Spanish class. Landing on the beach was no problem since it was usually a two person process and we both were experienced. After class we both were determined to be able to launch the dinghy. Since we always launched stern first when in the harbor I was able to turn the motor and pull the rope while standing on the beach. Success! Much easier when I could use my legs too. We called on the radio just to see if the guys were listening. They were. They now knew they could go diving when we had our next class.

SUN

My sister Pat was here for a long weekend. The California sun came with her much to everybody's pleasure. We could not stay inside and she loves to walk so we traveled the neighborhoods. We also were able to watch some grandsons soccer games. The weather was so perfect that I am thinking about having her come up and bring the sun with her for the ALS walk in September. Last year was record rainfall.

Technology is good this time

Visited today with a neighbor that I met because he has ALS. Actually like many people he knew Quincy and had often talked with Dave. Orville attended a support group shortly after diagnosis. Everyone along the route to the kids house know me by sight but I might not know them. When I went into support group Orville said I know you. You are Quincys mom. I am your neighbor. Our common disease gave us an instant bond. Unfortunately he has had a more rapid progression. Caregiver Cindy and I stopped by to see him today. Had to laugh when I thought about it because our two machines were talking to each other. He can still use his hands so he talks faster than I do. It is such a perfect example of the wonders of technology. After visiting I then came home to work on a story using eyegaze. So far I have only used it for times when I am writing stories or blogs at home. I continue to use my foot when out and about. I have discovered a problem using it outside. Weekend before last was sunny and I spent as much time as possible outside. It was difficult to give up sun for writing. Actually I did not give up sun. I did manage to read some with the computer in the shade and part of me in shade. Most importantly I have lived here long enough to know that when it is sunny you get out and enjoy. Now just need someone to invent an eyegaze system that can work outside.

technology is wonderful!?!?

Computers - my friend and my frustration. Actually it is called a communication device which is really necessary but..... Soon after I first got the eyegaze attachment I discovered it only worked when on battery. We had preevosly bought a second battery so I rarely used it when pluged in. I have a tendency to forget I am on a leash and either pull the plug out or get completely tangled up. Back to the story. Todd called tech support and after they tried several things remotely decided the problem was the charger. (it is fun to watch the cursor move and pages change while not touching anything ). They sent a new charger and I assumed everything would be fine but did not check. Bad idea. When I finally tried it when the local Dynavox rep was here it did not work. Damn. Okay so now the next thing was to send the entire unit to Dynavox so they could figure it out. One problem. I needed a loaned unit to use while it was gone. The rep had already loaned her spare, but hoped to have it back soon. Our ALS chapter had one in the loan closet but the assistive technology person was in Medford for the week. Anyway she did soon set me up with a device and transferred most of my data. In the office she was able to adjust everything so I could get in the car with it attached to my chair. This is a big deal because previously it had been higher than my head to get a good connection with my eyes. I left my device there for the Dynavox rep to pick up because she had a good shipping box. l told the rep that I had separation anxiety when I left it. Anyway it was shipped and they figured out it was a bad circuit board. Of course it had to be shipped to Philadelphia where winter was not leaving. Finally they were able to ship it out just before another storm battered the area. Meanwhile we were struggling to adjust the eyegaze so it would stay focused on my eyes. Fortunately I still have the option of using my foot so I was not in complete silence. When the rep brought my unit back she checked everything and had the same frustration as my caregivers. After removing my glasses everything worked great except I could not read the words. That did answer the question about the adjustment problems. For some people there is a glare off their glasses so back to raising the unit up to a different angle and all worked well. I realize that technology is my friend and necessary for my survival and ability to communicate but that does not mean everything is wonderful.