Chapter 5
Just Say "NO"

So, my wife survived multiple strokes on both sides of her brain. The chances of survival in such instances is very poor- but she survived. However, the person she was after the strokes was vastly different from the person she was before the strokes. Much of her 'memory bank' had been erased or deleted. She was nearly unintelligible when she tried to speak. She couldn't swallow food, and she was virtually paralyzed on one side, with severely compromised physical abilities on the other side. But worst of all, Nancy had lost the ability to think and reason.

She was discharged from the hospital where she had been under acute care, and transferred to a hospital specializing in rehabilitation. After a few months, they did a series of examinations on her and told me that she would never be able to think and reason for herself ever again. One of the doctors told me, for example, that if the house we live in caught fire and the front door was blocked with flames, Nancy would perish because she couldn't think to go to the back door instead.

The doctors at the rehab hospital advised me to put my wife into a nursing care facility and let her watch television for the rest of her life. At the time, Nancy was 46! I was furious with those doctors. I virtually screamed at them, telling them that they had no business saying such things because no doctor could make such a statement with the certainty of being correct. No one wants false hope, but there isn't anyone who has the right to take away your real hope. I told them they had no idea of how hard Nancy was willing to work to overcome her new limitations. I told them they had no idea of how dedicated I was to helping her recover whatever she could.

I just said, "NO. You're not going to poke us into a syrup jar!"

I cut back my practice. I took courses on how people learn. I began to develop a plan of treatment, using computer programs, to retrain her brain to think and reason. All of this has worked out quite well. Today, my wife still has some severe limitations, but as you will see as you read through this book, we live a great life, far removed from the nursing home to which they would have had me send her. Our lives are rich and full of wonderful experiences.

I beg of you- Please do not let anyone else tell you what you can or cannot do. No one knows- not your family, not your friends, not your doctors. The only way you will know is by trying. Play the cards you have been dealt to win, as they are likely to be the only cards you'll get. Don't waste your chances, and let yourself learn to expect success.

Here's a good "for instance" of what I mean. It is a great example of not letting anyone poke you into a little syrup bottle. It is also a great example o why you must not let others, particularly those who are not familiar with your needs or abilities, make decisions regarding what you can and cannot do:

A few years ago, we took our very first cruise, the Dawn Princess to Alaska. It was a wonderful cruise of 7 days, but we wanted to see the luscious countryside as well as the ocean. Princess had set up a number of pre and post cruise adventures, and I decided Nancy and I would fly to Fairbanks a week or so before the sailing, then planned for us to amble down the state by train, making our way south to Anchorage, where the cruise would begin. There seemed to be plenty of support for us, and the trip certainly did not appear to be more than we could handle. Princess has fantastic equipment for those of us in wheelchairs, and has, overall, a great attitude toward helping you out. The really try.

One of the highlights of any cruise is the opportunity to take excursions, small side trips along the way of the big trip. Princess offered one such excursion, a rafting trip down the Talkeetna River. I signed up for it, but a few days later, someone from Princess called and told me they would not take our reservation because my wife was in a wheelchair. We would not be permitted to take the wheelchair into the raft with us as it somehow puncture the raft, thus putting everyone at risk. Sorry, they said. For the moment, I was crushed. They had dashed my hopes of being able to do something unusual and enjoyable, something 'outside the box.' Then, I stopped myself. What was I thinking? Was I going to let them make that decision for me without having any idea of our capabilities? As you very well know, the minute you say, "Wheelchair", everyone not challenged automatically jumps from thinking DISABLED to UNABLED. I was going to prove them wrong.

Problem:

How could I work out the logistics so my wife and I could participate in this adventure? How could I convince Princess Lines to flex on their decision?

Solution:

I spent a good bit of time thinking about this and came up with a plan I thought would work. This is a strategy we have used successfully, over and over again. I called Princess and told them I knew how to do it and wanted them to give me the opportunity to try. I said I was willing to pay in advance, and if things didn't work out and we could not take the excursion, I would be content and not ask for a refund. In other words, I made them an offer they couldn't refuse.

When the time came that we were actually at the 'put in' point of the river, I asked them to hold off boarding the last raft until I had a chance to figure out how to get us into it. I watched as they loaded the other passengers first. I noticed with everyone else, the raft was already in the water, and everyone had been supplied boots so they could step into the water, then into the raft. When they were finally down to the last empty raft, I told them to pull the raft slightly out of the water onto the beach area. Then I brought the wheelchair down directly alongside the raft and transferred my wife to the edge of the edge of the raft, just as I would transfer her into a car or onto a toilet. Next, I got into the raft behind Nancy and asked one of the staff to get directly in front of her to catch her in case what I was going to do didn't work. Finally, I simply lifted her legs and rotated her around on her butt, so that  she was still sitting on the edge of the raft, but her legs were now inside the raft and she was facing me.

Mission Accomplished!

The staff then pushed the raft, with only Nancy and me aboard, back into the water to float, and the rest of the passengers got in just as with the earlier rafts. They loaded her wheelchair onto one of their trucks and took it down to the place where the raft trip would end. When we go to the 'take out' point, we simply reversed the process. All the others got off the raft and into the water first. They pulled the raft up onto the beach, and brought Nancy's wheelchair up to it's edge. I got Nancy up on the edge of the raft, rotated her legs our, and transferred her back into the wheelchair. Simple!

It had never occurred to Princess this was possible. Wouldn't it have been a shame if we had allowed them to make an arbitrary decision?

That is Mt. McKinley (Denali- the Tall One) behind us. it was a splendid afternoon, and, as you can tell from our faces, we had a fantastic time! The Princess people were well-meaning, they were just wrong in their conclusions.

We would have missed it if I had let them just say "NO."