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.