Wednesday, January 26, 2011

Wish by Joseph Monninger, and the three types of people met in Chronic/degenerative illnesses

I read Wish by Joseph Monninger, recently published book about 11 year old Tommy with Cystic Fibrosis who is on a ‘Make a wish’ trip with his 15 year old sister Bee, who is surrogate mom and caregiver. Grace, the mom spends her energy landing loser guys and disappearing for nights and days. Wish shows a lot about how people interact to those with obvious chronic diseases, and life shortening ones. Bee, as narrator, shows the real and fake faces people put on, the assumptions people place on Tommy and as the caregiver, is a strong voice as she wants Tommy to get his dream trip. Also, it gives the physical aspects of living with Cystic Fibrosis (a patient with Cystic Fibrosis also features in Mercy: The Complete Series, the TV series about Nursing, and thus, includes chronic illness, as doctors may only care about the disease, but the nurse must advocate and care for the person).

Tommy loves sharks, the great white in particular and he wrote up his wish so that he could go out to California, where he is friends online with Ty, a big wave surfer out of Mavericks who had a shark attack him, and chomp his board. He is supposed to go down in a cage, to see the great white shark. That’s his dream, his wish. Except that everyone but Bee assumes about Tommy, no one listens, but decides for him what his wish is, what he must mean, that he is just a kid after all. So he is greeted at the airport by a volunteer who has a cap with a shark fin on it, and plunks it on Tommy’s head. This is not the way to greet a marine biologist. Tommy talks online to marine biologists, he is on shark online boards: he knows every attack, every kill zone, and why the great White is dark on top (they get sunburned), how they put their eye above the water to look for splashing, he is serious.

What happens when you want to be taken seriously, and people don’t because you are sick? Talking about his ‘wish trip’ to the dive cage:

“Still,” Charlene pretended to shiver. “You’re brave.”
People always said that kind of thing to Tommy, as if saying he was brave or smart and daring covered the fact he had cystic fibrosis. They figured the teeter-totter had dipped so far down against him that they could put anything on the other side and he wouldn’t notice it was phony.
While they had approved his trip, the group had no intention of him going into a cage. Cystic Fibrosis stops the body from absorbing fat from food like other people and the lungs are always full of fluid. So Tommy is thin, and takes vitamins, but is still undersized and doesn’t put on weight, a stick boy at 80 lbs, who will die in his 20’s. It is a Chromosome 7 genetic transmitted carrier, and to keep breathing he wears a $10,000 vest that vibrates, to free up the crap on the walls of his lung. And he has to have inhalers around at all times, Pulmozyme for when he can’t breath, because if he can’t do the vest or the inhaler, then he dies. And one part of this book which shows that the author doesn’t have CF, is that going on a trip without the fear that the vest may break down. Because at home, there is always a back-up, the hospital or something, just as there is for me, but to go out on a trip, with a vest that they can’t afford to replace, that is walking the tightrope without a net.

Grace is busy making the moves and phoning Bob, who she met on the plane, and Tommy finds out that the boat which was supposed to take him out to see the sharks is going to have a group of kids on it. Because people decided ‘it is all for the best’ or ‘he isn’t serious’ or ‘he won’t mind’ and after writing the essay over and over and getting his wish approved, it is only hours before he finds his wish isn’t his. It is a vacation for his mother, and it is just a wish to be bundled with other ‘good works’ for the organization. Finally at Pier 39, he sees seals, just after finding out that his boat and trip aren’t ‘his’ and his mother was trying to be a public figure of the ‘perfect mom’ before ducking out for calls to Bob (who didn’t know she had kids) trying for a hookup, using the money given by the organization to cover costs for Tommy’s “Wish Trip”. And so when she demands he stop watching the Seals and take a picture instead to show how much fun he is having he doesn’t turn, or respond:

..he had taken the shark hat and worn it like a good sport, and he had accepted the news that the other kids might be on the shark boat tomorrow, all without protest. But now the seals lay right in front of him, the real animals, his shark’s favorite food, and no one on earth was going to interfere with that….He had finally reached his shark’s world and though it’s probably crazy to care so much about something that you refuse to undermine it in the smallest way, he did and I admired the heck out of him for that.
The next day, a bus load of kids from a school for the disabled and they are going to be on the boat for whale watching and the shark trip is a far second thought. But they thought it wouldn’t matter to Tommy. The volunteer who brought the hat, Mr. Cotter finally understands that his idea of what Tommy should want is not the same as listening and accommodating Tommy:

“You look after him, don’t you?” (Mr. Cotter to Bee)
I shrugged.
“Taking care of someone can teach you a great deal,” he said. “It’s troublesome, and it’s easy to get annoyed, but your heart, well it gets stronger. You do it for Tommy, of course, but you do it for yourself too. I took care of my wife at the end and I wouldn’t trade that time.”
“Was she sick for very long?”
“For quite a while. More than two years. I learned to love her in a different way.”
Back from the trip, Tommy cries and Bee says what those with chronic illness experience know all too well:

(Tommy) “I thought it would be different. I thought I was going to dive in the cage. That’s what they said. That was the whole point of coming out here. But it didn’t happen.”
“You saw a shark,” I said. “And blood.”
“Anyone could do that.”
(Bee) “I’m sorry. I get what you are saying.”
“It’s not your fault.”
“I know. But I understand what you mean. It was nearly what you wanted, but it wasn’t, and now you have to pretend that is was, right?”
Grace has gone and doesn’t come back that night, or the next day. So Bee decides to salvage the trip and they take some of the money from the envelope and go up to see Ty (and his little brother, also 15, called Little Brew). With Ty, Tommy can be Tommy, no expectation or projections, and they adjust to the living of Tommy, making jokes about his voice in the vest. They and Tommy play along so that the thing you have to do with a gun pointed at your head twice a day, for as long as you can remember, and as long as you live becomes fun for one out of the 8,000 days.

Ty is going to take them surfing the next day, before they take the plane back. And Tommy sees the board with a great white shark bite in it, and while it isn’t the shark cage, it is having friends for the first time, and people who groove with you on your disability time and wavelength. Ty makes money filming big wave surfing for hangouts and clubs and other sports where the reels are projected on the wall, and then change every month. First Bee rides down the wave cradled by Ty (in his 20’s) and then it is Tommy’s turn, in his life vest, with his surfer name they gave him the night before from his pale skin, Snow Pony.

It was obvious they had all talked about Tommy’s Condition and they all tried to help. Tommy ignored them. I saw his jaw set as he tried to climb up onto Ty’s board as I had done, but his arms were too weak…then Honey came over and let Tommy use his board as a second point of balance, and with everyone helping, Tommy finally clambered onto Ty’s back. Little Brew gave out a whoop, but you could tell it was forced.

I wanted to stop Tommy. It wasn’t a good idea to let him run the waves. I knew it. Everyone there suddenly knew it…

Then Tommy surprised us all.

With extraordinary effort, he pushed himself onto his knees. Then inch by inch, he lifted the top half of his body so that he knelt on Ty’s back, his hands slowly leaving the safety of the board…He raised himself, only for a second but for that second he surfed as others surfed. He stood, as much as could, proving something to himself. ..He was a boy and he was on a surfboard and he did not want to be the sickly kid. But he was of course, and that was in his movement, too.
And things go very wrong. But would Tommy have chosen to do it again? Yes. For there are some moments, which are stolen from the drudery of chronic illness living, and the disappointment of what people have turned our dreams into, and our disappointment at what dreams we have left. For us, things take extraordinary effort, because that just is, it isn’t brave or inspirational any more than studying hard at school to get into a good college. We want a better life, and that’s going to cost, in effort and body, even if that better life is just a day or a moment.

Wish is an excellent book about the interaction of chronic illness’ and the way people react. Some, in fact most, run away in various ways, distance themselves, or ‘if they happen to have a free afternoon’ they might see you. Which is like announcing they have no intention of friendship, for friends make regular meetings, plan things together. So there are those who, like ‘Whack a mole’ pop up a few times a year, because they can’t get past the barrier of what they imagine (either that you are, or what limits they have around illness) to find the real you.
In chronic illnesses, in visual degenerative illnesses, in life shortening illnesses there are the three types of friends who stay. One group will never admit that you are sick. No matter how bad it gets, they never use the word ill, or sick or dying. They talk about leaving the hospital like inquiring about a train schedule. And the numbers who do this are more than one would expect: about 25-30% of those who stay.

They project their assumptions on you, like the volunteer did on Tommy, like the organization did. Because it was ‘for the best…because…you know.’ Being around these people is hard and tiring. They drain your energy whether you try to live up to their expectations or not, the fact that you are still ill seems a burden on them, a sadness you have forced on them. And as they continue to not acknowledge it, they can’t express dislike of the disease when things go wrong or for example I have to cancel a meeting or activity. They are mad at me: because if you can’t talk about the disease, you don’t know me, because the aspects of the disease are failings in my (insert assumption: character, will, positively, etc).

As it can become surreal, they can only be honest when I or Tommy is hospitalized and unconscious. I have watched while someone who refuses to accept that a person has cancer is irritated because they have to go to the hospital to ask if the person is done with the book they lent them, while the person is helpless and having their clothes changed. Do they think if they ignore anything that implies illness it makes the person feel better? The person is suffering and grieving, and they can’t be a part of it, because they refuse to accept it happened, like someone refusing to accept a suicide occurred.

I’ve had careworkers quit (people to take care of ill people) because they didn’t want to care for me, because they don’t want to think about something (getting ill themselves?) and I remind them of that.

The second group are the ones who ‘accept’ you like those who ‘accept’ your being gay, but still hate pride parades. While they want to know all about your illness they either cut you off half way, saying ‘That’s enough’ or just ignore what you say. Then, over time they constantly act in ways that endanger or exhaust you, showing that they might know things in the head, but aren’t planning on changing attitudes, habits or their life to be willing to accommodate you. The mouth says they care, but the actions say they care…about themselves, but not you. Because going left or right is a choice; but taking heart medication at a precise time isn’t. And to treat both as the same makes them scary, and dangerous.

Do they refuse to accommodate because it is easier than changing? Or because they want to see themselves as a friend, but aren’t willing to change to do that? Virtually every day, a person, today is was a woman who KNOWS and states how I can’t remember, can’t remember beyond a day, but then asks me questions about the last time we met (me: “I don’t know”).

It took a couple years before I stopped adding, “I’m sorry” to “I don’t know.” Why am I apologizing for a disease symptom? Why am I ashamed, or need to ask forgiveness for being ill to anyone, much less to a ‘friend’? If the disease does this TO me, then I am the one who is being inconvenienced far more than the other person. For the women, my answer was ignored (as it always is) and the questions continue, including her asking what movies I have seen in the last few weeks that are worth recommending. Maybe I used to recommend good films to her. If so, she isn’t talking to me, but to a past ‘me’: the ‘me’ she wants. People often want the ‘other’ you, the active you, the you in remission. But they forget the baggage and stuff that happened during those periods, just that you weren’t like THIS. So they blunder on, demanding that I or Tommy BE what we are not.

This second group CAN be made to accommodate you, but only after they make a large fuss and then mention the trouble in accommodating you many times when you are there. Would a friend want to distance you like this?

All this only humiliates me. It humiliates everyone with a chronic illness, degenerative illness. But we take it, because they tell us how they are our friend in the same way they imply how difficult that is, and we take it because we are so lonely. And because these are often the individuals in charge of care, of health facilities.

The last group, which is small, and 10% if you are very lucky, but honestly maybe just one or two people: those few who know that you can’t have the thick juicy happy times without the thin and horrid times. These few are those who accommodate without a fuss. Who recognize what parts of life are grey and try to make those bright, they bring themselves to the worst parts, so that you are not alone. They accommodate you at best and at worst. For Tommy that was Ty and the surf crew, who helped him reach a dream, a dream with the danger of life and death (not a lot of 11 year old C.F. 50 foot wave surfers), who gave him a nickname, a place to forget how different he is. These are the ones who make us feel a full person again.

Most of the time I don’t feel like a person, but a problem. What does Tommy think of a mother who disappears on sex hook-ups, no wonder he idolizes his sister. The way people treat me or react to what is just the crappy part of the day to me says I am not part of the ‘human’ experience. When I am too exhausted to try and fit in anymore, when I am too exhausted to accommodate those who are able bodied, then I find those who know I am dying grow frustrated, and have reasons to go.

For me, who has such little human contact, even a not so great human contact is better than none. So the leaving hurts, double so because I was unable to pretend to be something they already mentally know, even if they haven’t emotionally processed it. How can I tell myself it isn’t my fault when they just disappear, or I see them leave?

This third group, who know I will not remember a postcard I sent them and send me a picture of it, or describe it in detail without making an issue of it are the small times when I feel that I still have worth, and that I am still human, or mostly human.

I was fortunate to spend a Xmas dinner with some people who were in the third group and didn’t need to finish my sentences (due to brain fog, and speech problems, I am often lucky to get out two word with the first group before they finish my sentences for me…incorrectly; while the second group gives me a chance, then steps in as I get tired and not only finishes sentences but starts and gives the whole sentence for me…..also incorrect – the energy it takes to say over and over, trying to get enough steam to get the sentence fully out is so draining, I begin to wonder if this is some sort of game to them, as I begin to gasp for air).

So to spend an hour, but in this case a whole evening with people who let me stop for seconds, for even up to a minute so I can breathe, and gasp and then continue as if it was nothing is a blessing. That is what makes an experience great. A bad experience is when the food server finishes your sentences…wrongly, on your order, and leaves. Why? It is because they are intolerant or scared of speech problems. But those who bring the food cut up for me, who listen to what I have to say and engage me at the level of intellect I am at that time are somehow more than friends. I realize the level of energy they must put out to be calm, to be deliberate with me. Often they are those who have had illnesses, chronic illnesses, or accidents themselves. They understand how important it is to have a voice. And to have a group that, yes, slows down to the speed of the slowest member – which is now me.

That is true friendship and love.

They asked later how I was, and Linda said that I passed out as soon as the car went down the road a bit. They were concerned but Linda said it was good, “She spent all her energy being happy.” Those are the diamond experiences of this part of my life.

From Wish:

Later on Tommy sighed and said he didn’t really know why he loved sharks, but that it didn’t matter. You didn’t have to explain why you love something.

He said sometimes he thinks he likes sharks because his illness made other people leery, made them afraid that what he had could pass to them somehow….creatures ran not only for their lives but because a shark was the other side of their characters. So he was not afraid of sharks, he was a shark, and CF marked him among other people. That is why Ty and Little Brew meamt so much. That was why one day, filled all the way up, meant so much to him. In the California sun he had shed his sharkness, left it for a moment and he had risen up, a surfer, a boy again.
So, to each and every person who spends the time and effort to accommodate a person with a stroke or seizure disorder, or chronic illness, degenerative illness or other conditions, please know that it is noticed. Those hours filled up, those days filled and the sense of ‘other’ disappearing, along with the feeling of frustration…for the first time in a long time.

Any event with someone like that is better, even if it is just a cup of tea together. These few, they know they don’t have to fill up the silence with speedy chatter, or know when I need the chatter to help me focus from the pain. They speak at my speed, the slower speaking so I can understand and process what they are saying. For everyone who has ever done that, it is a great gift, and thank you. Each person you helped feel this way, they may not have been able to say it but thank you for not making us feel a burden, or pointing out our differences from the rest of humanity.

Being accepted, free at last to dream, to try, to BE, it is the greatest gift. And to accept is to know that it costs us, and that we already know the risks and would trade safety or play life and death for a single good day. We know that standing by to support us will be painful emotionally, and yes, I will die, and with that support I can be ME before I die, or writhe alone, an ‘other’.

From Wish:

What we both understood, I think, was that we would meet again like this. We knew it. The day would come when we would stand on either side of a hospital bed, Tommy between us, and that would be a different day. That would be a day without end
(part of this was posted in my blog for those who have life shortening illnesses, are terminal, or caregive or care for those who are: My undead life. Comments posted there should not be about ego, or memo's or 'Hey Beth, hope you're okay': I need someplace to write what I can't write here. Because I'm end stage. And because I need somewhere to talk, as I have no one to talk with (and few 'get it'))

I will be posting 2-3 times a week again. I got ill, and now I am recovering. The first part is scary, the second part is slow, slower than I used to but in this game, I’d rather be the slowest player and IN the game than not.

23 comments:

Laura said...

Thank you for another informative blog Beth. I guess I can get caught up in the hurry up scheme of things of todays fast pace world and forget the world that you live in. For that I am truly sorry. Even with the condition that I am dealing with I find that people like to treat me like a child that cannot make any decision on their own. I guess that we as human beings like to assume to many things.

We like to think that we are helping but we actually take away your humanity. I know that I will try my hardest to be mindful of this in the future.

Thank you again my teacher.

Tobi Carlson said...

Dear Beth,
Slowest player or not, you are certainly one of the wiser ones, and I am relieved you are feeling a bit better and able to carry on teaching us. Illness, disability and death seem to be our greatest taboos in this society, and an area we have chosen to ignore to our spiritual peril. I think it was not always so... death isn't a new development! But we are all so afraid of it now. We've made a natural part of life into an alien, foreign thing, when it should be a time for cherishing. For those of us struggling with how to "be" with the people in our lives leaving before us, howevermuch we may fail at times, a blog such as yours is a huge gift. Very few have the ability to bare themselves as freely and eloquently as you do, so for you to spend your remaining time and energy sharing with us is precious beyond measure. I have my own regrets about people I may have let down, and the best tribute I can make to them (not that it helps them now, but one must make what good one can out of the crap in life), is to learn more and stretch myself, so that I can truly be there the next time, to be quietly open, honest, patient, and stare straight at the darkness. I would like rise above my own good "intentions", and reading your blog is making me think in depth about these issues, and what might make a "good dying and death" experience, so I thank you. I only wish it didn't have to be at the expense of your own emotional pain and frustration. We can only choose our own reactions, and it is important to do so as consciously as possible.
On another note, thank you so much for the gift you just sent me, of a lovely floral japanese journal (it's baby blue, with pink flowers all over it), and the photo card of you and Linda. You two are so kind and open-hearted. In the card you were asking about my son -he's almost 5, and whether he likes manga. He doesn't know what it is, exactly, but he's all over Pokemon (*sigh*), and we are both huge fans of Studio Ghibli (I love the quality and mystery of their stories and haunting images, as opposed to Pokemon, which is just a marketing vehicle as far as I can tell). BUT! This is important! Do NOT tax your energy fussing over other people!It is not necessary. :o) WE appreciate very much that you want to think of us and spread the joy, but mostly we want you just to last as long as possible and live for yourself, in the very best way that you can. So thank you for the gifts of your words, postcards, and treasures otherwise, and you're welcome right back for any little things that may find their way from me to you and Linda. (Courtesy of Cheryl's delivery service, eventually).

Best wishes to you both.
Tobi

SharonMV said...

Dear Beth,
Great book and blog post. You are right about the friends, so few remain & stick with you. And even fewer allow you to be you, as you are & not some former you or fantasy.
Even close family members who love me are still in various state of denial. I am silenced not by the inability to speak (or speak fast enough), but by their refusal to hear me. I can talk to my older sister who is a nurse about some things, but only so far. My baby sister, Joann, is the only one who is interested in hearing & learning about my diseases. She called on my birthday, she asked how I was doing (and I knew she really meant it), but I felt very nervous, felt the alarm bells going off, the fear as happens so often when I try to talk truthfully to my other sisters. Because they cut me off or finish my sentence with something happy, they invalidate me. I have become conditioned to try and avoid that So I really could only answer with a few generalities (the truth, but not all of it and glibly spoken). I'll write her or call & and apologize and give her the conversation that she deserves.

Your explanation about the 3 types of friends or contacts,aquanitances is very true. You have written what so many of us have experienced. Even those of us who have serious, debilitating chronic illnesses but are not terminal. The people we know don't want to think about our altered lives. It must be harder for you & others who have terminal diseases.

I'm glad you're doing better & are able to blog.

Sharon

annette2 said...

I really enjoy reading your blog Beth. And I love the postcards that you send. I have saved them all. They are exceptional works of art.

Annette

Lorna, Bob and Liam said...

Sounds like "Wish" is another book I'll want to be getting for my (almost twelve-years-old) son Liam. I was astounded at first at the energy you must have used in writing this "review", and then I realised no, this isn't just a review, it's a sharing of how this book resonates with your experiences.

It's weird, sometimes, being on both ends of your discussions. I've been a less-than-understanding friend of chronically ill folks, largely due to my own discomfort and fear regarding illness. I've also been on the receiving end now that I've developed my own chronic illness. Round and round and round I go on the wheel of life, acting, receiving, learning, teaching, observing, experiencing...

I am grateful beyond measure that you share your experiences and lessons and learnings.

tinarussell said...

Oh, God, yes. I hate it when people make such a fuss about “accepting” you that you can’t tell if they really accept you at all. In my experience, it’s the people who try the hardest to say that you’re accepting are the people least likely to actually get close to you.

I’m glad to know about at least some of the stuff that indicates true sensitivity to your condition. I certainly haven’t been as good as I could be about accommodating your memory loss, for instance, so I’ll have to be more careful in the future.

Much love, Beth!

Neil said...

I feel a bit like the odd one out in these comments, because I'm (mostly) able-bodied and (relatively) healthy.

I don't want to make you think that I'm in the first two groups of people, Beth. I'm here to learn how NOT to be that sort of person who finishes your sentences and is only here to Do Good Work. And I have learned not to try to finish sentences for people (except for my Beloved, since we do that all the time anyway, but that's different).

If I don't mention your illness, it's only because there might be something else you'd rather talk about sometimes.

I know you're dying - we all are - so please forgive me if I don't dwell on that. You're not dead yet, and you have this blog as a voice, and I'm listening, and learning. I may not always reply, but I am reading, and listening.

I'm here, I'm listening, and I'm staying until the blog disappears.

Love and zen hugs to both of you,
Neil

Aviatrix said...

I enjoyed the review and the discussion. I was always suspicious of the number of kids whose greatest wish was to go to Disneyland. As you explain the experience of the person with the illness, I wish to explain one perspective of the person without. Mentioning the illness or its effects at all opens me to the risk of saying something that depresses, discriminates or angers. Even this does, but I'm taking the risk. I want to accept. I want to talk about what is relevant and interesting to you. I want to be honest. I want to treat you the same way as I treat any other human being.

Let me describe it like parking a car. It's very tricky to park near you. If I park close enough to be in the third category, I know I'm liable to get a few scrapes on the car. I might even hurt you trying to get in. That's dangerous. I park further away and it's not as good, but there's less risk.

I can explain on behalf of the people who say they understand, then ask you about the past, too. (I hope this is a compliment, but if it isn't, well I tried to park too close). In most moments you present yourself so cogently, with your considerable wit about you, that even with the full knowledge that you can't remember events of a few days ago, it can be quite difficult not to think you remember everything. When someone forgets and refers to such a thing, it's a sign that they are interacting with you without scrolling a mental banner labelled "handicapped!" across your forehead. The people who don't share your illness may have full physical and mental agility (even if not enough to constantly remember which limitations to allow for), but only you know how you are feeling. If someone worries about making you feel bad, about doing more harm than good with their so-called friendship, that might make a person park very far away indeed, or just keep driving.

Now I have to decide whether the risk of having said something upsetting above is worth the reward of interacting with you.

Elizabeth McClung said...

I think in the way, I saw Wish as a way to reflect on my life, many people reading this see it as a way to reflect on their life. Reflecting and sharing is good.

Elizabeth McClung said...

Laura: one phrase that stuck with me was someone who chastised themselves with "the urgent over the important". I did it, I still do it. The thing is, the urgent is always there, no matter what pace, and yet often the important is not. We lose relationships, friendships, I lost myself to the urgent - so busy, busy with what 'must' be done, that a year had gone by and I hadn't seen my partner for one weekend or one evening. Who was I? Thanks for reflecting on that.

Tobi: I like that, Death isn't a new development. Your comment is one that has a maturity I would like to adopt for myself, to look forward, not back in learning change and rising above 'intentions'. Thank you for such an insightful comment.

Okay, 5 may be a little young for SOME manga, but what about Vigus the Viking? Ghibli seems to know children so well, understanding that they can accept the bitter and sweet - I am always amazed how popular the aspects which I would think too hard are to children. You are welcome, it is what friends do, right?

SharonMV: Thank you for sharing your experiences and helping me in understanding better how that affects people. I always worry that one experience and observation is true, but also glad that it does ring true beyond a book and me.

Annette2: My pleasure, thanks for the feedback

Elizabeth McClung said...

Lorna, Bob, Liam: It was a lot of energy, a couple days, but worth it, I hope.

I think the hardest part it for anyone to accept they will be where someone else is one day - but with illness, disability or dying, it is almost certain. I have acted poorly in the past, not understanding the need for privacy for a bed bound (hate that phrase) person and caregiver, people I never followed up with because I was too 'busy' (there is always something 'urgent' over the 'important')

Maybe, now I learn almost too late to help me reach out that much: learned too late. I hope others find it of use before then.

Tina: Yes, in many ways, the acts are far more convincing than the words, though both together help. But I have experienced that as well.

Neil: Well, as Tobi refers to, illness, death or declining health is not a surprise (or it is, though we know it is coming, because our parents take great pains to say: "you'll be here one day!").

Elizabeth McClung said...

Aviatrix: Perhaps it is easier for those who have been ill, had cancer, or other accidents to accomodate without have to say anything. I remember the one person who knew to cradle my head after I was thrown from a wheelchair and went into a seizure was a mother whose daughter had Spina Bifida.

Interesting metaphor, I will try to use it in answering. I suppose since 1 out of six people in North America have a disability/chronic illness/invisable illness it makes a lot of parking, or a lot of driving on.

As I said earlier, when I was visably able bodied, then it was easy to drive on, or to visit a couple times before getting busy because I didn't really see myself reflected in the person lying or sitting there. I saw myself as a different person and would have found this post, an observation of a person that perhaps I visited to be offensive, even though they may not have intended it to be a mirror, that is how I would have seen it (with probably a bit of 'Geez, how dare they...critize, they should be grateful' thrown in - since I was the type which might have interacted with the person but knew it was in the 'good works' catagory).

How would you like to be parked next to? 90% of partners who are male end up leaving chronically ill partners. That's just how unused to dealing with each other in all states of being our society is. There is risk, always in approaching another, much as there is risk in putting personal experiences on the web. Tommy in Wish finds that most people, seeing his frail and disabled body, assume that 'handicapped' or 'disabled' or 'crippled' means of lesser intellegence or interest in things than themselves. Then, the two people who do hang with him long enough to realize he is like them (the volunteer and ship captain), still stare at the body, finding this almost an contradition to them. And this awareness comes too late, because they have already made decisions about how to treat Tommy which dictate his trip.

I think as Tobi says, the best way is to accept the gaff, the goof and move on, and try better, learn more, interact MORE. ALL people will be in some way, as I am. I am sure you don't want others to assume, if you can't walk one day, that you can't talk either, or that if you talk like them (as why wouldn't you), that you must be able to walk. It is an error, it is recognized, and added to our learning, much like how we learn to be better drivers, or fliers. We challenge ourselves to be better drivers. Sure, some people NEVER do parrellel parking their whole life in case they make an error. But to apply that to people, and to never risk getting it wrong and so avoid all people who are known to be different is too great a sacrifice...not to them, to me, to you, to us. I don't want to close off a section of my life just because I am afraid.

Everything, even interacting with someone from a different culture, or region is difficult because mistakes will be made, people could be offended, so some people never leave home, never talk to anyone whose skin isn't the same as them or whose interests aren't the same. But illness, and getting older (which bring degeneration) occurs to us all, and if the worry is ONLY about making mistakes, then we are locked into isolation by the time that happens - a self imposed one.

Since you asked, this is the solution: Try - learn - try harder - learn more, learn better, try again.

Aviatrix said...

I will take that as a statement that you'd rather have your toes run over a few times than have me park far away. Sometimes Linda has to have me towed, though.

cheryl g said...

I have added Wish to my reading list. Thank you for the recommendation.

I strive to be in the third group in my interactions with the disabled and the chronically ill. I strive for acceptance. I know I don’t always get it right but the only way to learn and improve is to keep trying. I worry that I am too often in the second group but I use that as incentive to continue to change.

Thank you for the insights into your experience and the lessons which help me improve my interactions.

The illustrations are wonderful. My favorite is the last pcture of the girl with the plushie and the playing cards.

Elizabeth McClung said...

Aviatrix: I would personally hope that like in all things, you strive forward, that not just me but all who may be different, disabled, ill.

I just had an experience where the person I was paired with, after the instructor has NOT talked to me for two entire sessions (almost 4 months now) but talks to each other student 3-4 times, after the class, she asked how it was, I said it was not a class for 'all people of the community'. Her response was, "Well then maybe this isn't the class for you." - she felt if the instructor wasn't comfortable around someone in a wheelchair, the person in the wheelchair should leave, because following the tone of the instructor, she also did not know how to interact with me (because he had not modelled it) and she did not want me in the course, as probably several others students didn't. I am not sure how this improves them either as human beings or in learning how to do this sport with ALL people (as the course is to teach). Try again, learn again, try smarter. So, the fellow student will have some opportunities to 'try again' with me (ironically, she is a RN in this city - how comforting).

Raccoon said...

I have seen the situation before. The one in Wish, I mean. I've probably been in the situation. The "I know better than..." situation. And I've probably been the person thinking "I know better than..."

I think I've been doing better.

Baba Yaga said...

Thanks for posting this here too. It's important in a 'here' way, as well as a 'there' way.

& thank you for the review of Wish. That's one to seek out, and you balance review and commentary so well. (I'd bet some people have run away because they think they need brains to understand you, not just hearts. Heart-understanding seems not much prized, in this world. I think everyone who ever receives it does prize it, but who talks of it?)

One of the things I admire in you is that you don't consent to be silenced, to be forced into the corners of 'normal' life. So many people learn that silence is the price of admission, and not only pay it (because one does! one must, sometimes, or be cut off even more), but take the silence into themselves as what should be.

I'm guilty of it, although - thanks to the honesty of others - not one half so much as I used. (But I still generalise better than I particularise.). & it pains me to see others immured in the silence.

It pains me that the silence presses on you, as I perceive - doubtless inadequately - that it does; as posts like this show me that it does.

The urgent over the important? We do it all the time, don't we? - those who can manage anything much, that is. Sometimes more when one's on the edge of not managing anything but the essential. & it's been much on my mind lately, for reasons personal and at a remove.

Ah, Beth. If I could sit and drink tea with you, that would be a good thing. These words are clumsy things.

wendryn said...

Thank you. I will find this book. It made me tear up a little. It reminds me of how frustrating things could be for my brother when he'd try to explain things and people wouldn't try to understand.

I try to be in the third group. I know I'm not, always. I haven't had a chronic illness, just been around and taken care of a lot of people. Even so, sometimes I forget to be mindful.

I'm glad you wrote this. Not only is it a good review of an interesting book, it's a small glimpse into your life, how you interact and what you have to deal with. That is important to know.

Kate J said...

Sums it up about you, Beth, you'd rather be "in the game than not". Yes! And I do hope you get to stay in the game for a long while yet. Forever!
Very moved about what you wrote about the kid with CF. One of my dear friends lost her son to CF a couple of years back. He was 29. AS soon as he had his diagnosis, Margaret,her husband and the older kids devoted themselves to giving him as full and as normal a life as possible, and succeeded. Iwan spent the last half of his life raising funds for CF research and awareness of CF among the community. His funeral was one of the biggest I've ever been to, the whole village and many more, standing outside the little church in sub zero weather, while a male voice choir sang in the church... and then came out and sang for the rest of us. (Iwan loved the choir, which his Dad sings in, and although he couldn't take part he travelled on all their tours with them.) Then the whole village rocked to the sounds of Iwan's favourite bands via a couple of loudspeakers, as the hearse drove away.
Iwan told everyone about CF, and encouraged people to talk about it too. He knew he wouldn't live long, and talked about that, while living life to the full when his health allowed - in his last couple of years he was in hospital more than he was home. People said of him how very 'alive' he always seemed, because he knew he had to cram a lifetime into a short time.
I think you're the same, Beth, you don't deny your illness, it must 'define' you in some ways (not a good phrase but I couldn't think of another one) but there is so very much more to you than the illness. You blog about your illness... and then blog about art, books, nature, love, sex, cats, squirrels, Japan, Hawaii... always interesting, always something new, always you, Beth.
I don't read your blog because I feel sorry for you, but because it's always interesting, because I admire you, because I like you. And I did meet you face to face one time, even tho' you might not perhaps remember it (in a park in Victoria, feeding squirrels, September 2009).
Thanks for another memorable post - and for the lovely postcard which arrived the other day too. There's one on its way to you!
Love & peace, EFM!

Aviatrix said...

I had a temporary injury once, during which I worked in a wheelchair. My supervisor was someone who knew me, had worked with me before, and who treated me utterly differently because of what I was sitting on. It was stunning.

The students, who had never met me before, behaved as every other class of students had treated me on two feet, except that they would offer to carry my coffee and notes as I negotiated the chair over the door threshold. I think through the generations we are making continuous progress in acceptance of people who use artificial aids to increase their abilities. Old childrens' stories, and adages like "men don't make passes at girls who wear glasses" indicate that once upon a time people who wore corrective lenses were discriminated against!

Joseph said...

Hi, Beth....This is Joe Monninger, the author of Wish. I am so moved and touched by your review, and your comments, that I really can't quite describe it. You melted my heart with your commentary and with the hints I can gather about your circumstances.

I also wanted to say that you write beautifully -- a genuine style and a sense of language. You have a voice. You let us -- me, other readers -- have a glimpse of what your daily life involves. I love the line about a group working at the speed of the slowest member.

I've been in this writing business a long time, and I've had plenty of reviews, good and bad, but I promise I will remember this review when most of the others have slipped away. Thank you for writing it....Best wishes, Joe

Elizabeth McClung said...

Dear Joseph, as you might tell, I enjoyed your book. I did not include the cover as it seemed to focus on the back story of Bee, which I wasn't reviewing. I am glad you got a good hardcover launch and hope that it is recognized and appreciated as the fine work of disability fiction. Not as glamorous as other areas (where are the awards?!), but read with more passion of identity, I think. Thank you for writing Wish.

Tobi Carlson said...

Oh Beth. I just read the other blog, and saw how you are suffering. It is the greatest cruelty of life that some of us have to finish it suffering this way, and that there is very little the rest of bearing witness can do to help. (If there is anything, say so. But I am sure you would, not being one to hold back). I am so sorry. My heart aches for you. I hope the pain eases for you and gives you room to breath again. Small words, I know, but I don't know what else to say, but you are on my mind constantly, which is quite a lot for someone I have never met. Should I pray? Is that offensive? Super novas should touch god, in return for their fire.
Love Tobi