CHAPTER 18 TURNING THINGS AROUND
Count since July 09


hughesnet
I read over the blog -the last chapters were darker than I remembered. Being a mute quadriplegic is definitely no picnic, but some positive things have been happening to make the situation a lot more bearable. The turnaround in my life began with the vineyard. As it grew, so did our lives. About the same time they planted our vines, a friend, Allyson Campa, suggested we write a blog. This was really helpful, because it served as a form of release, which I desperately needed. We had tried counseling, but it didn't work for me because I am mute. No counselor was patient enough to hear my story. The blog is different because no matter how long it takes us to write, a normal person can read it at normal speed.

Shortly thereafter, another friend, Katie Roper, told the local press told the paper about vineyard, and they were very taken by our story. They ended up writing a two part article on us which won some kind of award. http://www.latc.com/2006/10/18/special_sect/special_sect1.html
http://www.latc.com/2006/10/25/special_sect/special_sect4.html Sometime about then, I went to a class reunion, and Allyson Campa wrote a blurb about me in the class newsletter. A guy named Jim Shea read it and said his employer made a product that could help me. It was called the Dynavox and was essentially a mobile speech computer. It is slow but allows me to talk directly to people without my wife interpreting. Dynavox also did a short film on us-we got to be movie stars for a day! See http://www.dynavoxv.com/ .

Meanwhile the whole Laserfinger thing was taking off. Laserfinger as an idea had its roots back in Montana when someone gave me an environmental control unit that originally cost five thousand dollars. At first it was amazing but we soon learned that it was so complicated we needed to hire a technician to make a phone call. We used it about three times and then never used it again. I envisioned a device like my headtracker that would allow me to switch on lights just by looking at them. I had no idea how to build it. All ideas lay dormant until I returned to California, and an old friend, Chris Tacklind, visited. He listened to my ideas, then said it sounded like a good project for his robotics class. A few months passed, and then Chris announced that they not only had a solution, but they had gotten funding from MIT to prototype it. About a year later MIT invited me to Boston to demonstrate what the team had invented.

I thought airfare was included until two weeks before the trip. A friend offered air miles, but they didn't end up working out. Out of desperation I called another friend who often did school fundraisers and asked for help. Imagine my surprise when she emailed the very next day and said she knew a family willing to help by getting tickets for our whole family!

MIT went extremely well, and they even gave us an award for inspiration, and named the annual award after our family. For the whole story see http://www.paloaltoonline.com/weekly/story.php?story_id=6204

See also http://www.laserfinger.org/, which references many articles, including one by he AP, which showed up all around the world. After MIT, we went on to St. Louis, where we saw old friend. After a week's rest at home we went to Lake Tahoe in California for a family reunion. They took me to a car museum, through a gold mine and on a boat ride. All in all, it was a great summer.

It was capped off when my classmates raised the money to build us an accessible shower -it has been great for me as now only one person can give me a shower. Some other friends offered their design services, and a contractor built it.

Two more things hapened recently. First, Jane and Fogarty Vineyards harvested our grapes and made wine. We made custom labels with a picture of our backyard at sunset -Hevans Vineyards. Then our church called and wondered if we would donate half of a case to their charity auction. We did, and bundled them with a Napa Valley wine train ride. It raised $5000and we got a standing ovation. A local newspaper covered it - see http://www.paloaltodailynews.com/article/2008-3-24-henry-evans.

Then, the very next week, a friend, Rick Zirpolo, took me in his racecar at Infineon Raceway. This was the real deal -we went 125 miles per hour! I think I was the first quadriplegic the track had ever seen!

All in all, about twenty five articles have been written about me -google Henry Evans, quadriplegic. This Christmas I got a card from someone I had not heard from in twenty five years. They included a poem I wrote twenty five years ago. I thought it would be a fitting way to end this chapter:

Hope

When gray light spreads its heavy gloom
Upon your worn and weary face;
When the path ahead is long and steep
And your spirit wants a slower pace;
When your feet can't follow one another,
When your soul has reach'ed dark despair;
Fall not into the hand of darkness
Think not the thought that no one cares.
Do not succomb to evil's quest
And ponder not on pain untold
For gloomy, grey and deep sad thoughts
Can only lead to sorrow cold.

Sometimes living takes on shades
Of amber brown and cloudy skies,
But know that when the sun 'gain dawns,
You'll see the world with clear bright eyes.
Think then not of foregone grief
Or of the past days' lonely grip,
For each new dawn is golden joy
Which sweetens sadness with a sip.
The sun will shine and bring to you
Its warm and fresh and happy grin;
You'll grab the world with all your arms
And hug its happiness again.

Henry Evans, 1981

CHAPTER 19 - Our New Life

CURRENT WORK IN PROGRESS

CHAPTER 17 WHAT DOES 'YOU' MEAN - THE MENTAL VERSUS THE PHYSICAL

My body changed in a few hours, but my mind still has not fully accepted it. I still can move normally in my dreams, for example. A really bizarre thing happens when an itch wakes me up. I start out in the dream state, where everything is functional. I think to myself, just reach up there and scratch it. There is confusion when nothing happens. Then the logical part of my brain begins to wake up and tries to convince the dream side I am paralyzed. Eventually I wake up and realize I can't scratch the itch.

The first time this happened, it freaked me out. I thought I was going crazy. After it kept happening, though, with no lasting effect, I realized it must just be how the brain works - in a dream state I revert to a 'normal' me. I also see the world as if I can still effect change, but, of course, I cannot. It has been four years - I wonder if my mind will ever come to grips with what happened. In some ways, I hope it never does. At least I can still run in my dreams.

In the awake state, your body is no longer part of 'you' in the normal sense, because you can't control it. When someone says "Move your leg," they might as well be talking about the chair leg across the room - it feels to be as much a part of you as the leg that happens to be attached to your body. Perhaps the worst thing I can do is move something once when asked, especially under special circumstances, like therapy. The reason is that people then think you can always do it and think that if they yell at you you will remember how. Certain things are very fickle, and only work sporadically, beyond your control. An example for me is opening my mouth so someone can brush my teeth. Sometimes I can and sometimes I can't. This gives the impression that when I don't, it is because I don't want to. Every morning. , I get yelled at to open my mouth, as if I don't know to try. It is maddening, but I can't do anything.

Handicapped people are often seen as selfish with their many demands, but it is more complicated than that. Since I can't control my body, I often ask for things for it because I know it will cause trouble if I don't. For example, I may feel my legs about to straighten and ask for a blanket because I know how much work it creates when they stiffen. I may even become impatient if the person takes their time. What I am really trying to do is save them more trouble later, almost as if the legs aren't mine but I know what will happen if they don't cover them RIGHT NOW. I am perceived as being selfish because I can't explain all of this and because the legs are perceived as being part of me. They are not, I am only trying to make everyone's life easier. Sometimes it is better to keep quiet than to be perceived as selfish, and just let what happens happen. Since all I can do without help is lie in bed and eventually die from pneumonia, I NEED others to help me get up and do everything for me, and that is eventually viewed as selfish. Never mind what I WANT to help with - I can't.

Selfishness cuts both ways. Someone that stops feeding me to talk about something trivial may think nothing of it. Yet to me it appears very selfish - they dangle delisciuos food in front of a hungry man because THEY want to yap. It comes down to basic needs, and most people take care of their own needs first, regardless of how much pain I might be in.

I put a new standard for selfishness on others, too, probably unfairly. I need so much help, that unless someone constantly pays attention to what my physical body needs, I often suffer. They appear to be selfish to me, although all they are just doing what they want to do. Some people have a knack for knowing what I need. Women are more likely to do this than men, although some men do it very well. People trained in healthcare are most likely to help, because they know what I'm going through, but even they don't all get it. Kids can actually be very observant, but they often have short attention spans. No one devotes time to me consistently like Jane, my wife. I think we are both mad that it happened and often think of happier times together. What is most frustrating is the lack of choice we had. If you ever start to take life for granted, don't. It can change in a second. Treasure every minute.

CHAPTER 16 RELATIONSHIPS

WIFE

What can I say? Not only did my wife save my life but she is the one who keeps me going now. It takes a special kind of person to live with you twenty four hours a day, and to stay positive most of the time. We always had a pretty good relationship by any objective measure but nothing tests the promise 'Til death do us part' like being put in a crucible like this. The odds aren't good - about ninety five percent of marriages to people who get quadriplegia don't make it. I got the feeling that the people in the hospital in San Jose were just waiting for Jane to walk out on me. That is the problem with thinking you know everything - they didn't themselves the opportunity to learn anything new. They kept sending in a shrink to talk to me and I think she kept wondering why I didn't need her - she finally went away. The hospital in Montana was better - they told the local paper we would make a good Thanksgiving story. That kind of thing keeps us going because it feels good to share our story with other people.

We have often debated who has it worse - the person trapped in their body or the one left to care for them. The truth is, we both have it bad, but whereas I am stuck in this nightmare, she is not. That fact makes her plight much worse. She could leave this nightmare anytime, but doesn't. I am convinced that she greatly prolongs my life, and that I would soon die without her. I need constant adjustments to sit in my chair, and any nursing home would just leave me in bed, where I would soon get pneumonia because lying down does that to you. No one besides Jane would take the time to constantly adjust me. It's not that people don't care, they are just too consumed with their own lives to do anything.

People often complain about euthanasia. It is pretty obvious to me that passive euthanasia not only exists but is well accepted by our society. I have watched other young people have strokes that were not as bad as mine be left to die because their was no one in their life like Jane who cared enough to help them. Let's face it - when I was comatose I would have died without a strong advocate like jane. The doctors even told her I would be better off dead, and then tried to put me in a nursing home to die of neglect. Everyone is concerned at first, but as the years pass, only my wife stays by my side to take care of me. People are opposed to active euthanasia because it requires action on their part and implicates THEM; however they are perfectly happy to let someone die of neglect and say it is just 'nature taking its course,' even though neglect is usually more painful than chemical euthanasia. I am not defending chemical euthanasia; I am just annoyed by all of the hypocrisy.

What really brought it all home to me, was when a quadriplegic I had gotten to know died of pneumonia. I told his sister, "Look what I have to look forward to." Her reaction was telling. Instead of telling me how to avoid it, she said, "Oh, I hear it is not so bad." In other words, nobody will care enough to keep you well, so just accept it." Hopefully it won't be like that - Jane and I are fighters.

Kids

Trying to raise kids as a mute quadriplegic is a joke. The older boys were especially vulnerable; given that we tore their worlds apart just as they were becoming teenagers and needed a father. Talking to teenagers with the Board does not work - they just put it down and walk away if you say something they don't like. It all fell on Jane, like everything else, and she was too overworked to really pay attention to them. We needed some time to figure everything out - but we didn't get it. When I stood up in Montana and we decided to stay there, Steve was one week from going to the high school of his dreams. In Montana, they had to learn limits from the police instead - luckily they didn't get in any real trouble, just dumb stuff.

The younger two kids were still pretty adaptable. I felt terrible because they essentially lost their father, almost before they could remember me. I also had really enjoyed being a Dad and felt like we all had been cheated. They learned to take care of me like a baby. One thing I never have liked is how much power over me the Board gives them. If they don't want to hear what I'm saying, they take away the Board. Even speech computers can be turned off. It is what makes trying to be a parent so hard for me - especially when Jane is gone. And nobody tried, or probably could have, to help us with parenting. It is just tough luck when a stroke like mine occurs - no one else picks up the pieces, at least not for very long. It is up to the family to work things out. We barely made it. What really turned it around for us was returning to familiar friends and places in California. That is not a knock on Montana -we just had a huge support group in California. It takes a lot of people helping to make a difference.

Friends

It takes a tragedy to really find out who your friends are. Even with that, what really matters is to have LOTS of friends, because everyone alone has their limits. A lot of people treated me like I had died, paying their respects and then disappearing. When I lived, it was amazing to us how few people actually seemed to care. In a way I felt like Tom Sawyer listening to my own obituaries - it was fun, but when I lived it was somehow anti-climatic.

We found that, at first, the people we had been the closest to most recently did the most for us. Then they must have gotten burned out, because after awhile we stopped hearing from them regularly. I think everyone is just busy. Older friends started to reappear and take up the slack. Over time, I find that the people who help the most aren't necessarily your 'best' friends, or the most 'religious,' or even the closest relatives. It is the people with the most energy who find the time to actually do something. Everyone else just talks. Luckily we have a lot of friends.

Most people express concern but don't actually DO anything. Some actually help, either her by giving time or money. The help usually comes from unexpected places. People who, despite declaring themselves to be good friends, talk the most about how much money they have, are least likely to help significantly with either time or money. The ability to empathize with your plight enough to offer actual help is rare indeed.

Some people actually treat you badly. Luckily, this is pretty rare. It does catch you off guard and make you not trust anybody. Few individuals have distinguished themselves by coming immediately to mind. One was a good friend of Jane's for many years. When I got sick, she offered to watch the kids. This was the case when I had my definitive CATscan. The doctors wanted Jane there in case they needed to do somethinG. Right before the procedure, she dropped the kids off with Jane, saying she had to do something. Never mind that my life might have been in the balance. Jane had no choice but to take them home - they weren't allowed to stay. We never said anything overtly, but we stopped encouraging her friendship and eventually she went away. Another 'friend' really shocked us. When we were trying to decide whether to stay in Montana, she offered to take in Nick in case we stayed past Christmas, so he could graduate with his class. Nick was best friends with her son. In the event, when she realized we were actually going to take her up on it, she changed her mind and we had to scramble and find someone else. She then decided she was going to be in charge of Nick's academics. She somehow managed to get all of his papers and began badgering him if he didn't get all A's. He didn't need this and said something to her. What he said, we don't know because she never told us. She just decided that nobody from her family would ever talk to anyone from our family again. Her gutless family agreed. We decided that other people were much better to spend time with and never tried to figure out what happened. Luckily, most people were at least encouraging and saw us through the most difficult times.

One more thing about friends. There must be something about being disabled that makes people promise you things they never deliver, just try to make you happy. We were promised tuition for our kids, help with my salary, and many other things, none of which materialized. It has become such a pattern that now, when people promise us things, we just smile and thank them, and don't even pay much attention to what they say. Every now and then someone actually delivers, and at that point we are truly grateful. I don't know what it is, but it took some getting used to.

Nurses

The nurses who took care of me were interesting because they didn't know me beforehand and they were the first group to treat me like an invalid. Everyone else, including me, was in shock, and waiting for the nightmare to end. The nurses just treated me like another mute quadriplegic, and assumed that my wife would leave me and my life would be hell from now on, like they had seen so many times before. At first I was confused, but soon learned to appreciate their experience.

IT COULD HAPPEN TO ANYONE ...
By the Evans Family

Copyright 2006-All rights reserved.

You are welcome to disseminate this for free.
However, dissemination of all or any part of this blog, in any way, for a fee of any type, is prohibited.

Expect 1 -2 chapters per month.

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A CHRONOLOGICAL HISTORY

CHAPTER 1 THE EARLY DAYS
CHAPTER 2 THE FIRST DAYS OF THERAPY
CHAPTER 3 OUTPATIENT THERAPY
CHAPTER 4 MONTANA
CHAPTER 5 THE FIRST BIG SETBACK
CHAPTER 6 THE FIRST WINTER
CHAPTER 7 ON THE ROAD AGAIN
CHAPTER 8 THE SECOND WINTER
CHAPTER 9 THE LANDLORD
CHAPTER 10 BACK HOME!
CHAPTER 11 REBUILDING OUR LIFE

REFLECTIONS

CHAPTER 20 WHAT IT FEELS LIKE TO BE PARALYZED AND MUTE
CHAPTER 21 THE FRUSTRATIONS OF BEING DISABLED
CHAPTER 22 THE BOARD
CHAPTER 23 THE PASSAGE OF TIME WHEN YOU ARE PARALYZED
CHAPTER 24 RELATIONSHIPS
CHAPTER 25 WHAT DOES 'YOU' MEAN? THE MENTAL VERSUS THE PHYSICAL
CHAPTER 26 INTERACTING WITH OTHER PEOPLE AND THE ENVIRONMENT -TECHNOLOGICAL IDEAS
CHAPTER 27 THE POSSIBILITY OF A CURE

CHAPTER 15 THE PASSAGE OF TIME

When I first emerged from the coma, time took an eternity. That was probably due to the fact that I was transitioning from leading a frenzied life to laying perfectly still on my back all day. I thought I was in the ECU for months; it turned out to be just 22 days, much of which I spent in a coma. I usually lay awake all night, watching the second hand go around to pass the time. Basically, my body was in excellent shape because I had been a health nut, and I just did not need much sleep after lying in bed all day. What I really craved was action of any type - bedbathes, rubdowns, anything. Just try lying perfectly still for a couple days without talking to see what it is like. The only difference is, I had no choice and no way out.

They say the passage of time is relative, and after what I have been through, I couldn't agree more. It has made me reflect. We are used to thinking of some animals as having very short - say a year - lifespans. But to that animal, I doubt it SEEMS short. They are born, know their parents briefly, and spend what must seem like endless days learning about their world before they die. We do much the same thing - only we may know another generation . In the big picture, neither of our lifespans is significant in view of the earth's existence. What, so one lives one/five billionnth years and the other eighty /five billionnths? So what? The best micrometer in the world couldn't tell them apart. What does seem to make a difference is the rate of change - when I first got sick and overniight went from hyperactive to motionless, the passage of time seemed to take FOREVER; but now that I am in a routine again things have reached an equilibrium again. Not that it is the same equilibrium as a normal person - I am used to things taking a long time and so I appear patient to everyone else. I can't put math to it, but the rate at which time appears to pass is inversely proportional to the rate at which things around us change. Remember how days seemed to last forever when we were kids because everything was new to us? And how time flies now that we have established routines? Well, it doesn't take the Earth a shorter period of time to orbit the sun, but our PERCEPTION has changed. I'm not trying to make any grand revelations here, but am just trying to make sense of what happened to me. The more change you allow (Or, as in my case, is thrust upon you), the longer life seems; and the more of a routine you follow, the faster time seems to fly.

Humor me for a minute while I play philosopher. Let's take that one step further. It is hard to conceive of a change more drastic than the one I experienced -one day an overactive father, CFO, and husband; the next day a motionless mute. As a result, time almost stood still while I adjusted to my new reality. That begs the question, how far can you stretch time/space? Now imagine the smallest distance we have measured, the size of some subatomic particle, versus the largest; the distance across the universe, measured in lightyears. There is no reason to believe those represent endpoints-why couldn't we be just be a subatomic particle ourselves in a much larger reality? What is so special about five billion years, the age of our universe, especially if time is so elastic, as it was for me? What came before? What will follow? What happens when there are no heavenly bodies revolving around each other to mark the passage of time? What role does religion play? Above all, if we are just the product of some cosmic accident, why haven't the trillions of stars/solar systems in the universe produced many races like us? Once we answer these questions will the questions stop? Or have we forgotten how important yesterday's questions were, like, does the sun really revolve around the earth, and why can't man fly? It seems to me that religion and science continually struggle to answer these questions, and will never converge. Religion maintains that we are unique and at least momentarily finite, while science refuses to acknowledge anything that can't be routinely repeated. Perhaps this endless struggle defines existence; certainly The Inquisition put as much weight on the questions of the day as we do on today's questions. If this all seems incomprehensible, now you know what it feels like to be able to do nothing but think.

What really brought the elasticity of time into focus was my side yard. I had been landscaping it right before my stroke. When I got home, I wouldn't give up on it. I typed out directions for my kids and my dad. To my surprise, they didn't read them carefully, when they read them at all. It was a good lesson. People don't like to be told what to do, and writing is a terrible medium for urgency. I learned another painful truth - what I used to do in a few minutes now could take weeks or years, if it got done at all. First, I had to find someone actually interested in doing it. Then, I had to get the parts. Then, I had to communicate how to do it. Finally, I had to watch it being done, because very few people follow directions. Without the art of communication, my reality existed only in my head. I soon learned to take what I could get and be happy. Not easy for a perfectionist, but the other choice was to do nothing. The lesson in all of this was that time was suddenly greatly expanded. Say, for example, I wanted to move a board from my driveway, a task that used to take me a few seconds. Now, I have to wait for an opportune time to ask someone to do it- that is, when I am near the wood and they have time to use the Board. This alone might take a week. Odds are they won't do it. I then have to wait for another opportune time and try again, until I get lucky. The whole process might take a month or more. The garden I started before my stroke still isn't done, and it has been four years. I had planned on it taking a few weeks.



OK, one more digression -evolution. While lying there I couldn't help but think about evolution and the passage of time. As helpless and as unattached to the environment as I was, it was hard for me to imagine us arising out of the mud, even given the passage of time. I am not defending creationism; that seems even less plausible. History has a funny way of compressing time. Oh, perhaps the order is right, but certainly the meaning of 'day' is not one Earth orbit around the sun. Remember; they thought the sun revolved around the Earth then. Who knows what Genesis means by 'day's? No, as I lay there I became convinced we just don't know where we came from, at least not in the way we know everyday things. The fossil record indicates that evolution likely played some role, but it does not account for everything. Like why do some species stop evolving -Cockroach - while others keep going -man>? Why haven't many other planets produced life? The biblical accounts of Creation, are very vague, even if they have a grain of truth. No, this whole area calls for our being humble enough to admit we just don't know yet to say exactly what happened, just as many things were shrouded in mystery for years before a completely new perspective revealed a generally plausible answer



. Ok, enough musings; now back on track.



I said before how it can take all morning to get up. My routine is usually this; get ready for the day and get in the wheelchair. Eat brunch - I call it that because eating both takes too long. It is now usually afternoon. I then exercise or sit at my computer for a couple hours (more results in bad posture), before they feed me dinner and then put me back to be, where I watch whatever is on TV until I fall asleep again. Exceptions might be taking a shower or going to the bathroom, either of which takes about two hours. Some days we go into town for therapy or to shop. My favorite thing is to take my electric wheelchair and speaking device into Costco or Home Depot and just look around. That is my life, and is just a stroke away for everyone. Believe it or not, I have come a long way. Some people can't even do this much.

CHAPTER 14 THE 'BOARD'

First of all, what is 'the Board? 'Physically, it is a 12" by 12" piece of Plexiglas with all 26 letters and all 10 digits stenciled on it. The translator then holds it up between us so I can see all the letters. I stare at the group of letters that contains the one I want. The translator calls them out until I hear the one I want, at which point I nod. In this way we slowly spell what I want to say. It is very slow. Before I could nod, I blinked, which was even slower.

While on the one hand the Board keeps me from being a vegetable, it is also very tedious and drives everyone, including me, crazy. It is not easy to use for the translator. My part is also painstaking and difficult, although I am used to it.
The worst part about it is I never appear any smarter than the person using it. If they add, drop or misconstrue a word, they never remember doing it and blame ME when it doesn't make sense, even though it was THEIR fault. I can't explain what happened; they never get THAT explaination right, either. Basically, when I have no choice but to try to communicate with someone who is no good at the Board, I stick to single, short words when I talk at all. Communication at a higher level is impossible. Thus, when I am left alone with strangers they treat me like a vegetable. For this reason I am pretty dependent on my family.

When first using a Board, there are several tricks. First, make sure yes and no are clearly understood. Next work out a way to signal 'end of word'- this eliminates a LOT of problems. Work out a signal for 'I don't know'- which is often the case in a yes/no question. Focus on timing - nothing is harder to correct than a mistake. Work out a way to say 'start over'- for when things get all tangled up or you change your mind about what to say. Another handy sign is to indicate when you didn't hear the question - there's nothing like someone mumbling a question you don't understand, and then demanding an answer, to make you look mentally challenged. They have no way of knowing you just couldn't hear the question. Another thing that makes you look bad is when you try to say something, buy no one wants to take the time to use the Board. Those same people get mad AT YOU later when they figure out their lives could have been made easier if you had spoken up. They forget that you tried but nobody would use the Board. Finally, make about ten Boards so you can always find one.

One of the most insidious aspects of the Board is the way it changes your perceived personality. People don't want to spell out 'please' and 'thank you' constantly, so you learn to omit them. This gives you the appearance of ungratefully barking out orders all of the time. People also get tired of using the Board, so little niceties often go unsaid, leading people to think of you differently. You have to choose words very carefully because people often misconstrue them. They also stop when they think they get it. For example, when you want to say, "I want to go outside to see how cold it is," they might stop after "I want to go out," drop the Board, and say, "No, it is too cold." Never mind what I think.

Another common mistake is adding or dropping a letter or word and completely changing what I am saying. An example might be dropping the "let's" from "let's go outside" - the person might then just drop the Board and leave - very frustrating. The ultimate insult occurs when someone is watching TV or is otherwise interrupted when I am in the middle of painfully spelling out something. The listener often just puts down the Board to pay attention to the other conversation. The effect is to tell me (although it is not their conscious intention) "Shut up. This other thing is more important." People didn't used to tell me to shut up often - it takes some getting used to.

Some people are intimated by the Board - they think it is an IQ test and are afraid they will look stupid. the truth is that some people are good at it and some are not. If you have a normal IQ you MIGHT be good at the Board, although if you have a low IQ you don't stand a chance. I have had complete strangers get fascinated with the Board and just pick it up and start conversing with me, no problem. Other people never catch on.

I am often misunderstood because of the way questions are asked. At first, people forget I can only answer yes/no questions. Then they ask double questions, like "Do you want more or not?". No matter how you answer you might be misunderstood. Another common problem is when they INSIST on a yes/no answer. For example, they might say, "Do you want more food, yes or no?" The answer might be "Yes, if you put it between my teeth. Otherwise no." Unless they are willing to use the Board, they misunderstand - often yes or no isn't enough.

One thing the Board is no good at is yelling. It is hard to express any emotion when you are slowly spelling out words it is hard to convey a sense of urgency. And you are lucky to say something once if people don't like what you are saying and think you are repeating it, they just put down the Board, effectively telling you to shut up, something that only gets you madder. Unfortunately there is nothing you can do about it - if you show signs of being upset they just leave the room. To them, it is probably just a normal reaction when they hear something they don't like, but it hits pretty hard- they might as well tell you to shut up and go sit in a corner. After a while you realize that arguing is pointless, so you tend to get more passive with time.

I got a partially reprieve from the Board after a class reunion. A classmate, Allyson Campa, wrote about me afterwards. A guy from another class saw it and emailled me that he could help. He was VP-Marketing for a speech device company. They had a device for people like me that operated without my wife's continuous help. It was much better than the technology I had seen four years ago. Although the Board, because my wife is so good, is often as fast, the independence of this thing is great. I can even tell people to be quiet now, And no one can edit what I say, much to their chagrin. Most importantly, it is tough and simple, so any caregiver can set it up. With it, I am always free to convey my thoughts.

Another technology which works very well for me is email, because even though it may take me and my family hours to write, to the reader it looks like any other text. There are a lot of nuances to using email as your primary form of communication, however. For starters, I can only email people who give me their email, and can only have conversation with people if they answer back. Only about ten percent of emails get answered. To normal people this is not a problem, if it is urgent they just pick up the phone. To me, however, it feels like, "Shut up - I don't care if it is important - I will decide if I feel like answering." Another disadvantage is anger - write an angry email and the other personnel is not likely to answer, depriving me of the satisfaction of even having a good argument. Email also deprives the listener of any non-written feedback. I can never look at someone's face and judge their reaction, or if they even took my email the right way. Email elongates time dramatically. A simple question and awnswer may take days, a whole conversation weeks while your wait for responses. It is kind of like trying to have a back and forth conversation with someone in another city via regular mail. It takes forever. it is often my only choice

CHAPTER 13 THE FRUSTRATIONS OF BEING DISABLED

For a disabled person, it is never a question of IF you are frustrated, but how badly. For me, it starts every day at daybreak. We live on a high (2000') hill above Silicon Valley. The mornings in summer are crystal clear because we are above the Bay fog and smog below. I used to get up early and walk in the backyard to take in the beauty of the sunrise with a big cup of coffee. Now I still wake most days at the crack of dawn, but I have to watch what I can see through the window because I can't begin to get myself out of bed. Often times they can't get me up until mid-morning, and 3.00 P.M. is not unheard of - that is about eight or ten hours of lying there doing nothing. To pass time, when TV gets old, I have perfected the art of daydreaming.

Not being able to make my presence felt is another big source of frustration. People often just ignore me and treat me as if I were addled. They talk right around me as if I weren't there. Some try actively to take advantage of us while I am watching. That just didn't happen to me before the stroke, but it is a pretty common occurrence now. That is why I was so gratified to win with Nick in small claims court when he was rear-ended. The other guy was plain trying to take advantage of us. He made a big mistake - the judge handed him his head. And I showed Nick not to let himself get pushed around, no matter if you are a quadriplegic mute.

One of the struggles it leads to is how to be a good father and husband. Anyone who thinks you can talk to kids through a spelling board just has not tried it. Kids often don't obey when you repeat things many times; to expect them to hold up the Board while you REPEAT anything is ridiculous - you are lucky if you even get to make your point once. Once they learn, and it doesn't take them long, that they can shut you up by not getting the Board, all is lost! More than once I have asked a child to do something only to be told "No, and don't ask me for the Board." What kid wouldn't want to be able to flip a switch and shut up their Dad? When Jane is around, she often fixes things, but she is often busy or gone. What makes it worse is I have to stay on their good side so they will pick up the Board when I want to say I need food or water. Over time, you just have to let them learn things for themselves. I didn't die from my stroke, but I ceased being an active parent. The older boys, especially, lost an active father - their boyhoods ended abruptly when I had my stroke. It is tough communicating with my wife at times, too. Somehow we actually manage to do pretty well. That is, until we have the inevitable spousal tiff. It goes like this. Somehow I manage to upset her. She promptly launches into a verbal assault, and won't give me the Board to respond. Then I have to endure two hours of haranguing. And if that is not bad enough, if I don't lie there with my mouth shut AND look her in the eye, I pay dearly! Generally, though, she is unbelievably understanding.

One of the more disgusting things I have to endure has to do with kids and food. My kids often feed me. It gets gross when they have a runny nose, and constantly wipe it on their hand. They then play with my food before feeding me by hand. When I shake my head 'no', they misinterpret it and ask me if I mean I don't want any more food. When I ask for the Board to explain what I mean, they refuse to hold it up, saying, 'C'mon, Daddy, either you want more food or you don't. Which is it? ' The choice is clear - either starve or stop complaining. My answer usually depends on how hungry I am . . .

While we are on the subject of food, I might as well Bring up another pet peeve. About 3 1/2 years after my stroke I began to eat solid food again. That led to one of my worst frustrations. I can't really feed myself, except under special circumstances. That means I have to wait until someone else is good and ready to feed me. In the meantime, they set the plate of aromatic food on my tray, right under my nose. As if to purposely torture me, they first stuff their own face and tell me how good it is. When they finally do get around to feeding me, they do so very deliberately, despite the fact that I am famished. Worse, after they start, the slightest little thing distracts them, and they ALWAYS find that more important than feeding me. Meals can take two hours! It is ALMOST not worth it.

While I am on the subject of pet peeves, let me rant and rave a little. Another thing that bugs me is how my wife parks. It is not that she is a bad driver - to the contrary, she is an excellent driver. Rather, it has to do with her INSISTENCE that we always find handicapped parking with room to operate our lift. She will circle a parking lot endlessly, looking for such a spot. If it doesn't exist, she will launch into a tirade about the store. If, God forbid, someone has used the spot WITHOUT a clearly marked handicapped sticker, we get treated to another tirade. Meanwhile she passes numerous parking spots for normal cars. All she has to do is have the kids unload me by the door and go park. Instead, I get to spend half an hour driving around.

One of my most frustrating things has to do with my wit. Love me or hate me, people often commented on how quick my wit was. It is still just as quick, but it takes me so long to say anything that most of the time the timing is ruined anyway. In the wit game, timing is everything, so I usually just keep it to myself and laugh at my own jokes. I was always my own biggest fan, anyway.

Another thing I don't understand is how my caregivers, who know how much I fought for life, can throw theirs away by smoking. What part of tracheotomy don't they understand? "It is addictive", they whine. I'm sorry, but coming from someone who controlled his urge to eat and lost fifty pounds, and then learned to breathe well enough that they removed my tracheotomy, I don't buy it. I think they just don't care enough about life. They will, but not until it is too late.

Above all, what constantly eats me up is, why me? I don't remember doing something that was that much fun, , or doing something dangerous or stupid. This definitely was not the Darwin award. To the contrary, I was a health and safety nut - this struck me down in the prime of my life without warning - I still can't believe it. I still wake up and have to remind myself that it happened, because it is so weird. The odds must have been infinitesimal, particularly since I was in such good shape. It is something I doubt I will ever come to grips with.

CHAPTER 12 WHAT IT IS LIKE TO BE PARALYZED AND MUTE


First of all, I should explain exactly what is wrong with me. When the inner lining of my basilar artery came apart, it destroyed my center of motor control, leaving me quadriplegic and mute. Only my eyelids were not affected. My center of emotional control was also severely damaged, leaving me extremely labile. My senses, including touch, were not affected. Neither was my mind, including my memory, which is very good. People, especially little children, often ask me what it feels like to be paralyzed.

First of all, everything feels very heavy, almost as if I were glued down. Second, it is like someone just cut most of the control wires. I can't even try to move most muscles - I can't do anything at all. To the extent I can move anything, it tires me out immediately - something which is very foreign to me - I used to be a long distance runner. My limbs are still partially wired - I have a little movement in all of them, very little. At night my limbs sometimes lie so still I begin to get sores - I feel the pain but can't move enough to relieve them. That is the blessed curse of my situation - I can feel pain but can't do anything about it except eventually signal for help. In this way I can avoid serious injury in the long run.

Powerlessness goes hand in hand with being disabled. One day I was a 6'4", 200 Lb. executive whom people didn't bother very often, and when I woke up from my coma I couldn't even go to the bathroom by myself. Anyone could do anything they wanted with me. Let's say I was in my wheelchair and my attendant got busy. They would just leave, regardless of what I needed. It was always about what they wanted and never about what I needed. After awhile I got used to it - there is no point in fighting it because there was often no way to even express what I needed. If I got too excited because of frustration, the doctors just inject me with morphine until I quiet down, because that is generally easier for them than to figure out what is frustrating me (they don't do it to be mean). It feels very much like dog training - if you don't behave the way they want you to, they assume something is wrong with you. My wife was one of the few people I see everyday who actually takes the time to figure out my point of view. Not that she always agrees with me, but that's something else entirely. . . that is when she tells people the stroke affected my brain :).

I had always been fiercely independent, probably to a fault. With one stroke I became completely dependent for everything - eating, drinking, going to the bathroom, scratching itches, etc. I would, to this day, literally die if someone weren't around to help me, 24 hours a day. Most of us are able to take control over our own bodies for granted. Not me. Every single thing I want done, I have to ask someone else to do and depend on them to do it. They get tired of it. So do I, but whereas they can walk out of the room or pretend not to see my gestures, I cannot escape. People say I am very patient, and I am. It is only partly due to my nature. The basic truth is, I have no choice. If I get impatient, people either leave me alone and tell me to do it myself (which I obviously can't) or, if they are medical, they have a doctor inject me to calm me down. That only happened once. I learn fast.

Another thing that disappears when you go mute is any type of 'presence' you may have had. People treat you as helpless, which of course you are. Forget trying to be forceful or even persistent. Hey, you are lucky to even get your point across. No one can follow complex thoughts on the board I communicate with, so I am forced to reduce everything to basic thoughts. Typing with the head tracker does afford me the luxury of more complex thought, but it is nonetheless a terrible medium for urgency since it is inherently two dimensional. If you do try to show emotion through capitalization and punctuation, and people don't agree with you, they don't argue back. They just ignore your point of view and don't let you type anything else. Being quadriplegic and mute pretty much reduces you to being treated like an animal by most people.

If you go to the far end of the spectrum, to complete strangers, it is often worse. They treat you as if you don't exist, or are addled. I have had people wave their arms in my face, screaming at me as if I were deaf AND stupid. People often instinctively raise their voice. Occasionally someone will actually see me as a human being and talk TO me. A few people (complete strangers)have even been fascinated with the whole thing and have learned how to use the board to have a conversation with me. But that is pretty rare. Keeping my self esteem up is sometimes hard (although that is always a fleeting phenomenon with me). When I realize someone wants to ignore me, I usually just zone them out or imagine what it would be like if the tables were turned. I have even watched as people tried to take advantage of us. That is usually a mistake with Jane.

I guess the best way for me to summarize what it is like to be mute and quadriplegic is to think of a dog. In a word, it is very dehumanizing. Dogs can't talk, so many people assume 1) they are pretty stupid compared to people who can (I know some people who might be exceptions), and 2) that they have no emotions. Their behavior is shaped by obeying orderS to get treats. They like to have their heads rubbed. If people get tired of them, they put them in a room and leave. All of this could be said about me, especially when I am around only strangers. Around people who knew me before my stroke, it is different. They assume I am still at least partly the person I always was.

CHAPTER 11 REBUILDING OUR LIFE/THE SECOND BIG SETBACK

So we set about rebuilding our life. One of the things I really missed was putzing around the house. When I had the stroke I was just starting on the sideyard and vineyard. We decided to keep going, at least on the sideyard. The boys professed an interest in working, so we went after it. Jane wanted a vegetable garden, so we made that part of the plan. Before they inevitably burned out, the boys were pretty helpful, putting in a watering system, an arbor, and raised beds. One day, as I was staring at Fogarty Winery across the valley, I decided to email them and see if they would plant my land in grapes, which had always been my dream. To my surprise, they answered, saying they would come take a look. They did, and said it was too small for them to be interested in. Oh well - I was used to giving up on my old dreams. Then about two weeks later, the main winemaker, Mike Martella, said they wanted to plant a couple rows for me so I would at least have a mini vineyard. We redesigned the gardens and had a fence built. The 'vineyard' was really neat - perched right on the edge of a hill outside my window.

One of my friends took me on a walk in my wheelchair every Sunday. It was great to see familiar places again. It was also great to see old friends again. we even braved a trip to Colorado for a family reunion. It was great to see everyone, but the trip was hard on me. Shortly after the trip Emma decided to go home. We couldn't blame her, and decided to go without help for awhile.

One thing that happens when you are as badly disabled as I am is that certain people try to take advantage of you and your family. This happened to Nick when some guy, speeding in a school zone, rearended him in the car he had bought with dishwashing money, and totaled Nick's car. The guy somehow convinced his insurance company to only offer Nick half. Jane wanted to take it but I was mad. A friend offered to be my interpreter and we went to court. Just before the court date, they started offering Nick more mone, but he told them to pound sand. In court, the guy's defense, unbelievably, was that the police were all wrong when they said it was his fault. The judge gave Nick about twice what the insurance company had offered him. I just wanted to show him not to let himself get pushed around, even if he gets disabled.

I soon started having more medical problems. One day I woke up and couldn't see well. We feared another stroke and called the ambulance. They arrived with about ten people, and said I could take a helicopter if I needed to. I didn't, so they took me in. The doctors checked me out and decided it was a migraine. About a month later I woke up in the middle of the night with spasms - my fever was 105. That earned me another ambulance ride. They determined that I had a urinary tract infection and put me on intravenous antibiotics. Just as I was about to go home, I noticed flashes in my left eye. The first opthamologist thought he saw something and wanted another opinion. By now a black curtain was coming down. The second guy thought my retina was detaching. By the time the 'pro' could look at me, another black curtain was forming. He immediately recognized the gravity of me losing vision, and assured me he could reattach my retina as soon as the bladder infection subsided. Meanwhile, I had to lie with my head still, for two days . He finally operated on me under general anasthetic. When I came to, my eye was bandaged and sore. They apparently had pulled my eyeball out of my head, secured a band around it, and reattached the retina with a laser. No wonder it hurt! I had not been able to go to the bathroom in a week and I was constipated. Despite this, they discharged me. I told the doctor I didn't feel well, but he said that was no reason to keep me. As I was leaving my bowels let go and the nurse had to help me. They tested me to make sure I would not pass out going to the car and told my son Nick to take me. He insisted that the nurses help him, and they did, even though they weren't supposed to. Luckily my van has a bed, like an ambulance, and Nick was able to lift me in.

It turned out I had felt bad because, besides being constipated, I had a blood clot in my right arm. It was not a threat to my heart or brain, but could have damaged my lungs. My right arm started to swell and get sore, and my regular doctor confirmed that it was a blood clot and gave me blood thinners. I was very weak for a couple weeks but slowly recovered. Once again I was made to realize you can't take anything for granted. I also realized how lucky I am to have Jane. Not that it had slipped my mind.

One good thing that came from our adventure in the hospital was they hooked us up with an agency that came to the house to help Jane. some friends at St. Nick's raised a fund to pay for them so Jane could get a break. The helper brought a friend who did gardening for us. We thus made a little headway on the homefront.

We also tried taking the family to counseling but the counselors didn't seem to know which direction to take and it was too much trouble to go. My own therapy went pretty well - we started at the hospital where I originally was in the ICU. The Physical and Occupational Therapists were two little Indian women and they were very good. I was sorry when it ended. We took a break from therapy for awhile and then went to a new hospital. I had started to eat solid food and the OT, Margaret Dougherty, set me up so I could feed myself. The speech therapist, Sandra Deane, saw to it that I got a speaking computer for my wheelchair. More on that later.

Remember when I said Nick had a penchant for getting caught for doing stupid things? One hot summer night he got bored and decided to take a plywood cow from someone's lawn. He then went to spend the night at a friend's house. About three a. m., The police woke the Dad up and said there was a stolen cow in the green car. The Dad, thinking they meant a real cow, assured them there was not. They insisted on dragging Nick out of bed and making him open the car. Sure enough, there was the plywood cow, with the GPS tracker blinking madly. They ruined his sleep that night, taking him down to San Jose and booking him. They tried to call us about five a. m. to pick him up but luckily our phone was out so we slept through this stupidity. When the sheriff brought him home about five thirty a.m., the police solemnly reported that they had had two detectives working on the 'cow case' all night. I almost laughed - these were the same policemen who had refused to investigate our stolen car for a week! The local news even showed Nick's car, assuming he had taken the cow for political reasons. Only in Los Altos! Luckily Nick decided to apologize to the homeowners, whom Jane had known, and they dropped all charges.

All in all, it was nice to be back in California. We traded serious problems like where we were going to live for the day-to-day hassles of ordinary life. The kids definitely settled down back with old friends. Nevertheless, our life was never quite normal. About six months after we returned to California I began eating solid food - even chewy things like meat, as long as someone put it between my teeth. I went through another bout of eating out, especially sushi. Then my son Mike, who by this time had began to take my chewing for granted, popped a chicken nugget in the middle of my tongue. He then ran away to feed himself. Unable to chew it or cry out, I reflexively swallowed it whole. It got stuck in my throat and cut off most of my air. As I sat there gasping for air, my thirteen year old daughter Mikala jumped in. She had taken lifesaving for a babysitter course, and calmed everybody down. First she tried to give me the Heimlich manuver, but couldn't reach around me. When that failed she reached down my throat and gagged me until I cleared the obstruction. I don't know what would have happened if she hadn't done that - I couldn't clear it and was barely breathing.

So my story ends as it began - with my family saving my life. Tellingly, this time it was viewed as no big deal because strange things have happened often enough to become almost commonplace. But we have gotten accustomed to it - especially Mikala and Mike. Such is the nature of kids - they just naturally adapt.

* * * * *

This concludes our chronological history, at least for now. Next, I thought it would be interesting to record what it is like to go through life as a mute quadriplegic.

CHAPTER 10 BACK HOME!

The trip started on an ominous note. We were spending the night at a motel. Emma got up early to work out. The exercise machine she was using in the motel came apart and hit her right between the eyes, stunning her and knocking her back. She refused immediate medical treatment and we drove off, with one of the boys driving her car so she could sleep. By the next day she had a bad headache, and we decided to rest a day. We called the motel but they said they weren't responsible since Emma had initially refused treatment. Luckily she came out okay after a few days. I wanted to sue them but everyone thought it would be too much trouble.

Actually coming back to the Bay Area was kind of strange. We came through the East Bay, then across 92 and the Bay Bridge to Skyline. The drive went from very built-up to rural. The air was quite dry and had the familiar smell of Eucalyptus. Everything seemed very arid compared to Montana. It felt great to be back in California. As we entered the driveway I noticed that much of the grass was about three feet long. We had hired a gardener in our absence but I guess he had decided that he only had to trim a small part of the lawn. It was prophetic - happily we had just traded the landlord problems of Montana for the everyday problems of running a household. In this case, Don mowed the lawn and that was the end of it.

Another everyday problem surfaced when we opened the front door. The tenants had, without asking, painted the interior walls. They actually did a good job, although some of the color choices made Jane cry. Worst, the hall was lime green and one of the walls in our bedroom was orange. When we had time, we had those walls repainted. We also found that a bunch of mice had moved in. We just called an exterminator, and soon we had the house to ourselves. Don and Barb chipped in and helped us move everything in and get comfortable. In the end, it felt good to be home.

One of the first things we did was have one of our traditional crab boils. Some friends of ours took care of the cooking. We only invited family - my brother's and Jane's twin sister's. It amounted to over twenty people. They wheeled me out to the edge of our backyard so I could look down into the Nature Preserve that adjoins our property. It brought back a lot of memories because I used to go there early in the morning, drink coffee and watch the deer play. When the fingers of fog drift in it's pretty spectacular. Right now, most days a family of deer likes to forage for acorns under our big oak tree, which frames the view of the valley below. The antlers silohuetted against the fog at sunset still take my breathe away.

One of our biggest fears was also allayed soon thereafter. In Montana, my brother had always made sure I got excellent medical care, and we didn't have such connections in California. However, the rehabilitation doctor was excellent - just as good as the one in Montana, whom we had really liked. So was my primary care physician - and he really took a real interest in me.

It was also nice to see friendly faces again - people who knew me before the stroke. They recognized me for who I was and made me feel human. Coming home was harder on Jane - seeing all of the places we had shared so many memories was painful for her. The kids were mixed - Steve and Mike had good friends in Montana, Nick was indifferent, and Mikala was philosophical - she said no matter where she was she would miss the people she wasn't with, and enjoy the people she WAS with. She always bloomed where she was planted, so we didn't worry about her.

The boys quickly went nuts with cars. Nick bought a nice used Nissan, and Steve bought two more Honda's - real junkers, and decorated our driveway with them. We consoled ourselves with the thought that at least the old cars gave them something to do and kept them nearby and out of trouble. They also worked on projects I had started before my stroke and generally calmed down when surrounded by old friends and familiar places. Mike went through an adjustment period but soon fit right in. Mikala never missed a beat. Our old world was coming back together. . .

CHAPTER 9 THE LANDLORD

The landlord decided to do something. Two months before we were to move back to California, he lied to us and said he was retiring to his lake house and needed us out immediately. We could have fought him on it, but we were tired of him and his friend. I knew that he had been wanting to remodel since before we came along. And I knew the wheelchair had damaged some walls, so I wanted to offer him some money because I figured he just wanted to redo everything anyway. However, he refused to speak to us or give me his email. Instead, he hid behind his obvious lie and watched us move to an old run down resort nearby. We hired a handyman to fix everything, which he did. Then it got nasty. After we had moved out, the landlord had he police find us and accuse the boys of shooting pellet guns at an old shack at the rear of his property. Remember, EVERYONE in Montana has at least one pellet gun, and we lived next to public land. The boys immediately denied it and gave him their guns for ballistics testing. The policeman was a real jerk, and treated us like we were guilty. Again, the boys sure didn't ACT guilty. The tests came back inconclusive, but the landlord wanted money for it anyway, along with an old couch and some miscellaneous things. It was only $2,200 total, but we had had enough and decided to fight.

The first thing we did was to call five lawyers, but none of them returned our call. We kind of felt helpless, because, unlike California, we didn't know anybody. Then Emma offered to help us. One of her ex-husbands was a landlord, and knew the law inside and out. More importantly, he was an imposing presence at about 250 lbs. He told us that it was up to the landlord to prove damages (and without videotape of the place before we moved in, we would win 100% in court). He decided to have a little conference with the other party. They demanded $2,200, and he said we WANTED to sue them anyway. This was only partly true, because we would have had to come back from California for court. Jane offered half. The rental agency urged the guy to take it, probably because they knew they didn't have a tape. The guy took our offer, and then left us alone.

Back in California, the real estate market was heating up. This, together with the fact that both of our neighbors were selling and bringing by lots of buyers, resulted in our getting a few pretty good unsolicited offers. Thus, we had yet another big decision to make. We decided, however, to give our place in California a try, since it was home to us and we had a much broader support group there. We figured if it didn't work out for one reason or another, that we could always move somewhere else. It helped that our caregiver, Emma, had decided to come with us for awhile. That meant one less thing to deal with in California. After what we had been through as a family, though, nothing scared us anymore.

About this time I became eligible for Medicare. What that meant was I was not allowed, by law, to keep my Blue Cross policy (except as a supplement). This had several ramifications. First, I lost the case manager at Blue Cross who had been so supportive - they had ended up paying for two years of therapy. Medicare cut that off right away - they said two years was a long time and if we wanted to complain to call such and such a beaureaucrat, etc. - as if we had time! On the positive side, they had no DME limits, unlike Blue Cross, who would not even cover my wheelchair. Which brings up the medical equipment fund a family set up for me. We used it to get a standing frame, a mat, a power bike, and many miscellaneous items. It was a Godsend, especially after formal therapy ended.

One of the things it got was the Cyclatone. Through some stroke of luck (no pun intended), a man in a nearby town had an aunt with a condition similar to mine. He was an inventor, and had built her a power bike for both arms and legs. I had been looking for just such a device, and since his aunt had passed on, they sold it to me. It allowed me to move all four limbs at the same time, greatly reducing my dependence on a caregiver. Once when it broke we called a guy we had gotten to know. He was a paraplegic who had been an All-Pro linebacker for the Miami Dolphins. Unbeknownst to him, he had sustained a serious neck injury playing football, and then snapped it completely in a skiing accident. He was still able to flyfish and fly a plane. Fortunately, he was also pretty handy and was able to fix the Cyclatone.

We ended our stay in Montana with a final newspaper article. It was mostly about the wheelchair everyone had rigged up so I could ambulate and talk at the same time, using mainly head movements to control my wheelchair. It was fun - we had some pictures taken in Home Depot and showed that I could be independent for brief periods of time. They kind of forgot to mention how much work it was to set up. We also took the opportunity to thank everyone in Montana for helping us out. In reality, many people had been extremely good to us. It was just the accomodations that had been a nightmare.

With the help of some old friends, Barb and Don Tate, we loaded up a truck for the seventh time in two years (and the last time for awhile), and headed home to California!

CHAPTER 8 THE SECOND WINTER

After a year of going without help, Jane was getting burned out, and wanted to hire help, The person we had interviewed the last time, Emma, was available again, and we hired her. She was pretty hard-headed, and so was a good match for me. She worked out well, and we ended up keeping her for over a year. I'll never forget when Mike asked if she was going to steal our van - he was really traumatized by Keith. She had owned a daycare, and so was more familiar with kids than Jerry and Elaine had been.

Therapy was going well, although the pace of progress slowed down. I learned to pedal a handbike without assistance, wheel my wheelchair if someone pulled my hands into position, use the Total Gym, kick a ball, etc. Around the end of the year they told me that I probably would not be in therapy anymore by June. At least these therapists were straight with me, and enabled us to plan our lives. We decided to stay until June no matter what so the kids could finish school.

About that time our California renters announced they were leaving December 31. After spending all that time fixing the place up. Go figure. It was mixed news. On the one hand, we wouldn't get rent for six months. On the other hand, they were leaving peacefully when I thought that might be a struggle. We heard later that they were breaking up, which may have had something to do with it.

About this time the speech therapist recommended I go to Missoula to Montech to see the equipment they had for disabled people. Montech is funded by the Federal Government by a program designed to help the disabled in rural areas. At first I was unenthusiastic, but agreed to go. What kind of technology could they have here? In the event, I was favorably impressed. Not only was the technology good, it was reasonably priced. I also found a power wheelchair I liked. Back home, a medical equipment vendor fitted it with a head array, so I could drive with my head. My Occupational Therapist, Denise Zander, and her machinist husband raised the seat and put on straps for my feet. We designed a special tray and had a custom plastics guy make it to hold my computer. My speech therapist's husband rigged up the chair with a power inverter, a USB hub and a place to plug in my special mouse. After all of this, I was able to drive and speak all by moving my head. Jane was wary of my new-found freedom, especially after I ran over some poor old man. She kind of liked the control that came with a manual wheelchair.

Once, Jane had a close call. She had to drive Mikala to school early one day, and discovered she had locked her keys in the van. Because they were in a hurry, the girls took Stephen's Honda. The driveway was steep, and as she neared the bottom Jane hit the brakes. Nothing. It turned out Stephen didn't want to spend money to fix the brakes, instead downshifting and then using the e-brake to stop. Jane didn't know about any of this and luckily didn't hit anyone. She came right hom, hitting the fence behind our house to stop. Jane had the car towed to a brake shop later that day.

Speaking of close calls, not long after she started, Emma tried to transfer me herself, and I ended up on the floor. I was unhurt, and Emma made me comfortable. She tended to freak out in pressure situations, and this time she panicked and called Jane. Jane interrupted what she was doing and came home and called the fire department. They came and lifted my sorry butt back into the bed, no worse for the wear. I decided to have some fun, and told all the therapists about it, and to give Emma plenty of s___ about it. It backfired. They decided it was not funny at all, and trained us on the use of the Hoyer lift. The Hoyer lift is a small hoist that lifts you up like a storks carrying a baby. I protested mightily, but to no avail. The thing is a royal pain in the neck. But at least I learned to keep my big mouth shut!


We still had our Chevrolet Suburban back in California. Our friend had it detailed and tried to sell it for about nine thousand dollars. It was in nice shape, but we had put 106,000 miles on it and it was, after all, an American car. Some guy from Tracy almost bought it, so we had my brother out there try to sell it. He had it on the market for over six months, marking it down from ten to six thousand with no takers. Meanwhile, we had gotten to know a used car dealer in Montana who said he would have no problems selling it for a lot more. Based on this, we paid a thousand dollars to have it hauled up there. The guy detailed it and even threatened to buy it himself, then put it on his lot for $9,800. Six months later it was still sitting there, marked down to six thousand. We finally gave it to my brother for $4,500, because he had helped us so much. It seems no one wanted to take a chance on an old American car.

One of the things I did to alleviate boredom was to play Scrabble. My speech therapist was pretty feisty and thought she was pretty good at Scrabble. We decided to go best 3 out of 5 games. Everyone else made book on us. Some people gave me the sympathy vote; others played hardball and voted against me because the odds made it a good bet. In the event, it came down to the last word and I won. I asked her how it felt to lose to a mute quadriplegic. Somehow the pot mysteriously disappeared, but I didn't care. I had what I wanted - bragging rights.

A few people visited us in Montana, always a welcome respite. Unfortunately, Montana isn't exactly on the beaten path, so visits weren't as frequent as they could have been. Email became my best way to stay in touch with people, and I kind of lost it whenever my computer broke. Once I inadvertently urinated on my computer and shorted it out. It took two weeks to repair and I almost went nuts. The computer guy laughed and said "it is a keyboard, not a PEEboard." That was no help!

Meanwhile, relations with the crazy neighbor and his friend, our landlord, continued to simmer. One day we got a note asking for a couple hundred dollars to repair a bullet hole in his house. Realize that this was Montana and everyone has guns. We also lived by some public property where there were old cars, empty beer bottles and shell casings. Every redneck around went there to party. The guy actually accused Nick . Nick asked him, "Why would I shoot your house? And denied doing it. " What was laughable was that when we asked to see the damage And to do ballistics tests, he said he had already fixed his house and threw away the bullet. We know our kids are not perfect but Nick sure didn't ACT guilty. He just liked to blame us for everything bad that happened because I couldn't get in his face. It was an ominous sign. . .

CHAPTER 7 ON THE ROAD AGAIN

Once again, they began by showing us a trailer. A double-wide with a nice view of the lake. We weren't so taken aback this time, mostly because it was for such a short period of time. However, some friends pointed out that it was right across the street from a bar and not a good place for kids. We passed on it and looked at a house that the agent showed us . We took it because we really did not have any choice, provided they would build a wheelchair ramp.

First, soon after we moved in the booking agent got fired. Because we didn't get it in writing, they billed us for the wheelchair ramp. Then it turned out the house was listed for sale. People would knock on the door at all hours wanting a tour. We complained, and the landlord agreed to give us a day's notice each time. Great. Then the water stopped Working. We asked for a rent abatement. They laughed and said it was a city problem; that if we didn't pay rent we could leave. We were in no position to argue; we had no place to go and Jane didn't have time to fight it; she was trying to take care of me and the kids. We didn't know any lawyers. Luckily it was only a few weeks. Suffice it to say housing in Montana was a nightmare; we had to move seven times in two years.

Before we moved this time, though, we visited California for Nick's eighth grade graduation. This was no trivial undertaking. It meant driving 24 hours one way, and then finding a place to stay. This was a tall order for Jane, who nonetheless was determined to try. Steven was able to do some of the driving, but he was only fifteen. We got the TV, DVD and VCR working and headed out. Jane held up very well, all things considered. A friend let us stay at her place, which worked out great. For me the trip was bittersweet; seeing everyone was great, but I knew it would be over soon and we would have to go back. They did recognize me at the graduation, which was nice. The time flew, and soon we were saying goodbye and getting ready to go back again, where we had to move into a new house.

If this wasn't enough, it was about this time that our teenage boys decided to act like, well, teenage boys. I'm sure anyone who has raised teenage boys can relate. The driving age in Montana is fifteen. Although we weren't sure that was a good idea, we needed the help. Our policy is to pay half of their first car, and then they are on their own. We helped Steven get a nice little used Toyota pick-up. At first he was fine. Then he decided to pretend it was four wheel drive and pretty much trashed it going off-road. One night he called to say he had rolled it going around a corner. He was not hurt. When we saw it, we were aghast - it was a total loss. He assured us it wasn't that bad-until they finished it off with sledgehammers for fun. That night, both boys went to bed early. We were woken up at about three by a phone call from the police. They had two boys who looked like brothers; could we come <45 minutes away > and get them? At first Jane was puzzled. Then she realized the boys had snuck out of the window and taken the truck to a drive-in. It still ran . The police pulled them over for not having any taillights and ended up impounding the vehicle. Luckily they weren't doing anything else stupid like drinking or speeding. They didn't even get a ticket; the police said they just couldn't drive their truck on the road. When Jane got to the station, an officer met her at the door saying, "Your son is a genius! You should hear how he is going to make it into a convertible! " That was, well, the wrong thing to tell Jane. By the time she was through with him the cop could have walked out under the door. We attributed the boy's actions that night to a malady known to afflict teenage boys; "SAS," or "Sudden Acute Stupidity." The next day we had the truck taken to a junkyard in order to prevent any more outbreaks.

One good thing that came out of this was that Jane learned a new parenting trick. She discovered that the boys liked to sneak out of the window to do things we would not have allowed. She began doing frequent bed checks, and when she found an empty bed she would climb in and go to sleep. In this way the returning boy, who doubtless thought he had pulled one over on us, arrived to a very unpleasant welcome. It helped slow them down.

One neat thing we did back in Montana was go fishing. They had a fishing derby for the handicapped, and we entered. Seeing all of those other people made me realize how lucky I had it; but it also made me realize how much I had lost, so it was hard to appreciate it. Anyway, we hooked a fifteen pounder, but he got away. After we got back, the local TV station interviewed us, which was fun. When they asked Jane a question, Mikala, then all of ten years old, swept Jane aside and said, "Mom, I'll handle this," and took over the interview. We watched the news that night, and sure enough, there she was.

We also had fun on the Fourth of July. Some really nice neighbors invited us over, and the boys did their best to burn down their beautiful new house with armloads of fireworks. They almost succeeded. After the Fourth, we stopped by a fireworks stand that was closing up, and they gave us many leftovers. I don't know what we were thinking. There's something about the words " Free stuff " that brings out the irrational side of everyone. In any event, we were ready to party. We ended up throwing most of them away.

One night the boys were shooting off fireworks with some friends < legally >, when they decided to climb a mud cliff for more elevation. They assumed it was part of the public land behind our house. Wrong. It turned out to belong to some nut who chased the boys home with a shotgun. One of them slipped running down the hill and impaled his buttocks on a tree branch which broke off inside him. Luckily his Mom was a nurse and patched him up. We learned two things: the neighbor was a certified nut and was good friends with our landlord, who was not nuts, but heartless even though his son was in a wheelchair. It portended things to come. . .

CHAPTER 6 OUR FIRST WINTER

Things actually started off pretty well. The local paper did a story on a patient each year, and this time they chose me. The reporter was very nice and the interview lasted three hours. The hospital, as would be expected, sent a muckity-muck in a suit to make sure everything went smoothly and to take some credit. It was the only time we would ever see him. All in all, it was great fun and a nice distraction. We were driving in the van one day and caught a glimpse of our picture on the front page. The reporter did a very nice job. I made a point of rubbing it in to my daughter, who loves publicity. People in restaurants even recognized me - I was famous for a day in Kalispell, Montana!

Another thing that was nice there was the proximity to the ski runs. Steven would take a ski-shuttle every weekend - it was only a few minutes away. It began to get cold in September and soon it began to snow. One day it hit -30 F and Jane called to see if the kids' school was closed. They laughed at her. We had sent the kids to public schools because there wasn't really anything else available, and in Big Fork that meant one campus and one bus for all four kids. The grade school was pretty good, and had advanced programs our two little kids got into. The High School was a big letdown - the first thing they told the boys was that C's were good grades. Basically, there were a few good students but many people were just getting by - not a great environment for teenage boys with a powerless father and an overworked mother, and no support group of old friends.

We decided to get Nick out of this environment so he could still get into the College Preparatory school in the Bay Area. Although the original family that had promised to take Nick backed down when they realized we were actually going to take them up on it, another family stepped up. At first everything was great. The family that backed down at least tried to help Nick academically. However, when Nick found out this lady was somehow getting all of his grades, he said something to her. What it was, I don't know because no one ever got me involved, but it must have upset her because she decided no one from her family would ever talk to our family again. Big help she was! And her family, who had been pretty close to us, didn't have any guts, either. Hard times really bring out people's true colors. What we needed was help with a bewildered boy whose world had been torn apart. Instead they took the easy way out and ran the other way. The family that did take him in found him somewhat confused (no surprise after what he had been through) and difficult to talk to, but they managed to keep him the whole time and kept open communications with us.

Meanwhile, therapy was going pretty well. Probably the biggest thing that happened was I gained some volitional control over my diaphragm so that I could make a quiet noise when asked. After awhile the people close to me began to be able to interpret these as words. I learned, for example, to say, "I love you Jane," for the first time. That scored some points with her! It also made me feel a bit more human.

That fall, we had found out we were entitled to another $15,000 of California state disability, but the state had kept it because we had not known to fill out some piece of paper (while we were occupied fighting not to get discharged early). They said to get it, we would have to appear in court in San Jose. Luckily the judge let us call in. This must happen a lot, because the judge was very sympathetic, gave us the money and wished us well. A few days later we got another nice surprise - Social Security said they screwed up and had forgotten to pay us $20,000 for our kids, and did. Just as we were starting to feel like Christmas had come early, our disability company wrote us a nasty little letter and said they were entitled to the $35,000 due to some fine print in their policy, and oh, by the way, if we did not mail them the whole amount in thirty days they would stop my checks. Luckily, we lived pretty simply and still had most of the money to mail them. It was no fun.

My link with the outside world, including California, was email (that is still the case). There are a lot of disadvantages to using email to talk, but it is better than being a complete vegetable. Often people don't answer, but there is something about being able to ask that is better than the alternative. I decided that speech is the main thing that separates us from other forms of life. Email became my escape and separate little world; when my computer broke I overreacted, feeling lost and isolated - often it was the only way I could express complex thoughts. Without it I just dropped off everyone's radar screen; they might have thought of me, but I never knew it. I even learned to slowly draw simple diagrams on Power Point (with assistance). It may not sound like much, but it was huge. A picture is worth a thousand words, especially when you have to use a letter board. That is no fun for either party.

Speaking of no fun brings up the subject of lability (not liability). Lability is caused when the stroke takes away your emotional control. I used to cry or laugh fifty times a day, including a few times a day over having left my life in California. It is exhausting for everyone, including the person crying or laughing. Sometimes, however, it can be pretty funny. Once we were at our kids' talent show. A little girl was bravely manglng the 'Star Spangled Banner, ' and everyone was pretending it was pretty good, as they often do at such events (I used to misquote Winston Churchill and say that ' Never have so many clapped so long for so little '). It built up in me until I completely lost it, shreiking hysterically at the top of my lungs in front of five hundred people. The more I tried to stop, the louder I got. Everyone turned around to see a guy in a wheelchair, with his whole family trying to stuff towels in his mouth. They finally gave up and dragged me into the lobby, where I eventually calmed down. Poor little girl was probably scarred for life... I actually felt really bad about it because I couldn't help it. A physician at the clinic there discovered that a low dose of Prozac actually helped me control my emotions (although not completely). That helped everybody (although it was not as funny ). For some reason, other anti-depressants did not.

I really missed California, but not for the obvious reasons (weather, etc. ). It was in not knowing anyone who knew how I had been. I had never been shy before about moving to new places, but this time it was different, because people I met hadn't known me before my stroke. They only knew me as a mute quadriplegic. I will never forget a nurse who had taken care of me there who later saw me in the cafeteria. She came towards me waving her arms and shouting, "Henry, do you remember me? " I had to spell on the board, " I am neither deaf nor stupid. Yes, I remember you!" No one there knew me as I had been, and often ignored me. They would say "Hi!" to Jane and try not to look at me. Some people who used email got to know me a little, but it still was not the same. I thought about my old friends everyday.

About this time we decided to rent out our California house. Some friends of ours fixed it up and we put it on the market. We rented it to an unmarried couple. It soon became obvious that she liked the house more than he did. In fact, she loved it- so much so that they were a little possessive. One day he emailed to ask if they could paint the walls. When I said I would think about it, he called Jane and said there was nothing to think about - they had already done it. Then they asked us to empty the last bedroom so they could use it. We reluctantly agreed - finding tenants from Montana was not easy. They stored most of our stuff, but managed to discard a few personal items, like the fly fishing rods I had made by hand. My life was so jumbled up, I was kind of numb.

The first winter ended on a deja vu moment. Around March, we asked the landlord if we could stay there for the summer, because we wanted plenty of time if we had to find another place. He said, "Sure." Then in late May he had the rental company tell us he had changed his mind. His family had decided to spend a week there, as had his relatives, and they asked us to move out for the summer. Once again, we were looking for a place at the worst possible time of the year.

CHAPTER 5 THE FIRST BIG SETBACK

Our life, which the year before had settled down, was completely unsettled. We had no permanent home, a few days to find a school for all four kids, no permanent mailing address, and very few frends around. Worse, we were subject to monthly reviews by the insurance company to let us know if we could continue in therapy - after I stood up they decided to pay for therapy every day. It seemed like we had to make a terrible decision every week. The first thing I did was to email the hospital in San Jose to see if this development would give them a better attitude. I asked for therapy every day because it obviously made a big difference. They said, 'Good to hear from you, glad things are improving, we will resume therapy two days a week." It made no sense - I had heard them complaining about revenue shortfalls, and yet they did not want me. I knew it was not the insurance company, because by now we had gotten to know them and they were both sympathetic and helpful. It would have been much better if they had just told me the usual out comes and their probabilities, instead of treating me like that. Then we could have made some informed decisions about our lives. Instead, we got the impression that those people in San Jose did not know what they were doing, like when they tried to tell Jane I would never move. Well, at least that made our decision to stay in Montana easy.

One of the first things we had to do was get a more permanent roof over our heads. To stay at Terry's meant sending Steven to 'Flathead High', not exactly what he needed. It was like a bad dream. We read in the paper that Bigfork schools were good, so we looked for a home there. The first thing we did was stuff a few hundred mailboxes with a flyer with our story, thinking someone who left for the winter would rent their house to us. We got a call from someone who set up a prayer group for the 'flyer family,' and from a real estate agent trying to sell something, but no tangible help. Meanwhile we started trying to find a rental home. The first agent showed us a place with five steps, but the second agent was a little smarter. She showed us a place with tiled floors, no step, a Lake view and a month - to - month lease. We rented it on the spot, just in time to register the kids for school. For the boys that was a shock -Steven had gotten a scholarship into the college preparatory school of his dreams, and Nick was about to start Eighth grade with his friends. They were aghast when we told them we had to move. We solaced ourselves with the knowledge that Steven could get back in the school at Christmas, and Nick's best friend said Nick could live with them if we stayed past December. The bad news was that we couldn't move into the new house until after school started.

It was about this time that we got the idea for our cookbook. I was complaining so much about institutional food that my speech therapist suggested she, Jerry and I all write a cookbook together. We all agreed, and I started outlining it. We also discovered a simple thing that really changed our lives. At night my legs would spasm and pull up, which was very uncomfortable. I, of course, could neither prevent nor rectify it. It would wake me up several times a night, and I had to wake Jane to straighten me out. For several months, we never got a full night's sleep, and it was showing. Then we came up with a plan. We tied a bedsheet from one rail to the other, just above my knees. Now when my legs spasmed, the sheet kept them from pulling up and waking us. Jane finally could get a full night's sleep. We still use that idea, with some modifications, to this day.

Before we even got a chance to move into the new rental house, THE BIG SETBACK happened. As Jane was getting me up one day, I felt faint and laid back in Terry's guest bedroom. I kept feeling faint, so Jane called my brother. He listened to her, then told her he wanted to see me in his office. Jane said I couldn't sit up so he suggested she have the ambulance take me to the ER. The paramedics arrived and hauled me out on a gurney. They did their normal tests and discovered my heart rate was 250 [normal is about 80]. I told Jane I loved her and prepared for the worst, even though I felt okay. My brother freaked out when he saw my heartrate, which was discomforting. The cardiologist gave me medicine to slow down my heart and said I had atrial flutter and needed surgery. Great-like we didn't have enough going on!

They drugged me up and made an appointment with a cardiologist in Missoula, about an hour South. The drugs knocked me out so that I could only sit up a few minutes. This is where having a private 'ambulance' was so handy. To go anywhere they would get me in the wheelchair, quickly roll it into the van, and lay me on the bed in there. It was a lot of work to go anywhere. We were lucky Elaine came along when she did, because the kids were in school. Then we got the news, good and bad. The good news was the guy in Missoula could fix my heart; the bad news was they had to keep me drugged up for two months until the blood thinner worked since the surgery could loosen blood clots. This was bad news because it meant I had to lay in bed for two long months before therapy could resume, virtually assuring that I was not going home at Christmas. To make the best of it and to preserve my sanity, we focused our energies on the cookbook. After our part was done I wrote Jerry a very nice note asking him to do his part. Instead of writing he had been sitting alone in his room watching football. The note freaked him out and he withdrew from the book. The speech therapist didn't do anything, either, so friends and family finished it. I wanted to have it done before I had to focus on therapy again. Meanwhile, all that laying around gave me pneumonia on top of everything else. Finally I had the surgery. The doctor said he got 'most' of the problem; then my heart swelled up and he had to stop. Either that or he didn't want to be late for dinner. In any event I got off of the heart medicine and resumed therapy.

I did get one nice break during this time. My birthday is on October tenth, and everyone came to our house for a birthday party. Jerry and Elaine used to run restaurants, so they knew how to handle large crowds and entertain everyone. I was confined to bed, so they just brought the party to me, and we had a blast. We had been planning it around a Notre Dame football game, but decided we didn't want to dampen everyone's spirit's (except Alicia, my physical therapist, who went to USC), so we passed on that.

After surgery, I was still weak. One of the most difficult things was sitting on the commode chair and going to the bathroom, because the suppository made all my muscles stiffen. It was so painful, I was convinced it would kill me in a few years.
One night it almost caused me to pass out - my blood pressure, normally 110, was 38. Jane called Elaine, but she didn't come down, so Jane managed to get me back in bed with the kids' help. Elaine later explained (in much more detail than we cared to hear) that she couldn't come down because of what she was doing with Jerry. All we knew was that we almost had a medical emergency.

It seemed like life those days was filled with horrible decisions. One of them presented itself when it became obvious we wouldn't be able to wrap up therapy by Christmas, and it had to do with Nick. He had been going to finish eighth grade with the kids he went to kindergarten with. We now faced the question of whether to try to send him back for his last six months. Doing so would greatly enhance his chances of getting into the high school of his choice in the Bay Area. The family that had agreed to take him, however, changed their mind, so we would have to make other arrangements. I was pretty adamant about it, and Jane finally gave in. Some other friends of ours agreed to take him, and we decided to send him back.


About this time Jerry and Elaine decided to leave, even though they had committed to staying for a year. We couldn't tell if it was because we went ahead on the cookbook without Jerry, or, if it was, as they said, because of the children. The children were a bit rambunctious for Elaine (who had never had boys), and refused to eat some of Jerry's vegetarian meals. It didn't really matter; it was probably time for them to leave anyway. They had come along at a great time and had been kind enough to help us, but we were clearly getting on each other's nerves. So we welcomed in the New Year knowing that we didn't have a caregiver, and only had one son left who was big enough to help Jane transfer me...