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.

Pissed off, knocked down, can't piss and more joy.

Pissed off because I don’t get to go boxing today. Because I didn’t sleep until 9 am. Because, yeah, bowels not a functioning. Thank you again for the manga and the books since it was not hard to imagine, like in BoneShaker (Steampunk novel), living in a toxic, zombie infested Seattle at 5 a.m. with the sound of rain and howling above me, plus my pain and a little delirium (That book is headed out to ya, V!).

This has been a bad week, two days of heart erratics, the fever returning, pain so bad that, well, people could tell I was in pain, even when I was smiling (it must be that, “I am going to eat your children” smile that pain gives me instead of the “Aren’t we having fun now?” smile). And seizures, lots of seizures, and going blind with neuro blindness, again and again. And paralyzed, and blood from nose and mouth, and more seizures. It knocked me, in my grand plan from stage 4 all the way back to stage 2 (from ‘Going out every week and exercising weekly to build reserves’ to ‘Have no reserves, try to maintain and stabilize life functions, work toward gaining reserves’). That means bed days (or at least hours!). It is why I blogged about Squirrels because while Squirrel and Seizure both start with S, one is cute, fuzzy and neurotic, and the other leaves you with bruises in odd places.

I wish in some ways I could not make what I have been going through since late Sunday sound like the flu. But how do I list what a couple hundred minutes of seeing the back of your eye sockets while your body danced like being whipped with piano wires feels like? This morning I was so weak it took me 1 hour and 20 minutes to pee. Well, to pee AND stay conscious. Either way, not getting all that I want to get done, not sending emails, not answering comments, not doing enough. And since I am not getting better but the other direction, going to have to say, ‘Lonely, love some email but may at best send back a couple lines’ (who wants to bet I write 1000+ words!).

So the disease is kicking me around like a home-made soccer ball this week (Soccer theme today). Got to try to look past that. Which is hard in those days of bad, bad pain, when my arms and body were shaking from the pain, and I was maxed out on painkillers, and seeing anything beyond that was hard. See me at a Spring Market was hard. Seeing me going to Sakura-Con was hard. But Sakura-con is now (insert number of days until April 2nd) away and I am going. Or my body is going – Sakura-con, the corpse tour! No, let’s not think thoughts like that. I will be animated, since Seattle is the town of zombies (BoneShaker again).

I am also pissed as the first thing I see when I turn on my computer at my home page is this story:

Paralyzed Soccer Player walks again

‘With Positive Attitude and Hard Work..”

11-year-old Mackenzie Saunders was playing soccer, got hit, then got up and played, at the halftime started feeling numb in her legs, later taken to hospital. Cracked vertebra with a blood clot (and swelling around the injury). They (at hospital) could not find a history of a lower back injury causing paralysis in girls soccer.

Mother says: “She has never asked ‘will I be okay?’ She has said, “I will walk again.” (I don’t think there is a SCI who hasn’t said that.)

Interviewer asks “When that day comes?”

“I guess I just want to hang out with my friends or …(thinks)..play a game of soccer).”

She walks out with a limp. “It is her attitude that is the story.” (well since she got an MRI within an hour of getting to the hospital, and still gets constant therapy that probably helps too – A friend with the need for admitting into the hospital due to his heart told us that now the wait list for the MRI in this town, is 13 months. He says his heart could go at any time but is waiting for the specialist test and referral, and may not get the operation “until Christmas, who knows.”)

Neurologist: “You really, really have to look in the MRI, and you can see that little fracture and there was a little, little fracture, and a little bit of hemorrhage and that hemorrhage put pressure on the cord. And THAT is what started to cause the neurologic problems.” (on questioned making a ‘full recovery’ the neurologist said that she is glad the girl can ‘get around as well as she can AND the fact that she is young’ as ‘nervous systems repair themselves much better in a kid than an adult.”

During this the Camera is on MacKenzie with bold caption “PARALYZED SOCCER PLAYER CAN WALK AGAIN”

We are not told what her treatment was but it is alluded to in the interview by the medical specialist as “Intercede immediately and doctors, even if they don’t see these injuries very often, have to think sometime ‘outside the box’ and THEN you get great results...”

One leg has regained sensation, one has a brace on the lower leg.

Interviewer, “So next time I see you…maybe the olympics?”

CRASS!

First off, the Paralympics start tomorrow, so a –10 out of 10 for that final question (Sorry all you Paralympians, too bad you didn’t work hard and have a positive attitude!).

This story is interesting because it manages to encapsulate so much about the popular ideas about wheelchair users, paralysis and SCI while reinforcing propaganda instead of information (‘Thin blonde girls are happier!”).

Problem 1: No education at all on what an SCI is, or the types of paralysis. All we are told, (in subtitles too) is that she was going to have to use a wheelchair (they don’t even make clear if she had paralysis complete or loss of feeling), and now she can walk: due to the ‘American Dream’ of hard work and a positive outlook. (BARF!)

Problem 2: The ‘will to power’ presentation of wheelchair use and the implication that all wheelchair users could, if they were just perky enough and worked hard, could walk again. Except that spinal cord severing and a blood clot pushing on nerves are different, much like a Gillian-Barre paralysis and a SCI paralysis are different. And I don’t think there is anyone in a rehab center who hasn’t said, “I’m going to walk out of here” (unless it is amputation, in which case, there actually is a decent chance they will walk out of there).

A meta-study I referenced in an earlier post showed that perky, positive attitude cancer patients had the EXACT same percentage of survival based on treatment as the "Fuck this and fuck you too!” ones. It isn’t the image able body people WANT, but it is the scientific facts. Motivation comes in a lot of different flavors and some of it is optimistic, and some of it is, “Damned if I quit!” – one makes the front page of the news, one does not (even if both end up walking – because society doesn't want to hear, “I thought the doctors were fuck-ups, I thought the whole system was a fuck-up and yeah, it hurt like an acid bitch spitting venom but damned if I was going to let someone tell me what I do. What am I going to do? Fuck like a rabbit! What did you think this rehab was for?”) Though oddly I remember them asking the oldest living man once how he did it and he said, "By smoking a cigar and drinking every day!" Hmmm, think that health book would top the charts?

Problem 3-10) Chronic conditions aren’t a ‘pause’ button and the more society reinforced that, the more invisible we will become. MacKenzie COULD hang with her friends; the fact that her friends were not hanging with her at the rehab center says something. The fact her parents or her never thought that, only, “Must walk again and resume the EXACT same life I had before this happened” and they are REWARDED for this, makes failures of every other person who ‘gave up’ (That IS what wheelchair use is depicted as in this story, in society – with the words ‘tragic’ lingering around there somewhere).

It was an unusual injury. She happened to get very fast, very good medical treatment and was in a very high end, and expensive rehab program immediately. That makes me happy. Is she a typical spinal cord injury, wheelchair user or paralysis patient? No.

What has she learned from this? About different types of SCI’s and paralysis? About different friends she made who use wheelchairs? About adaptability in her home? Who knows? Because if she has, that’s not what we, and all the other families and teens, and tweens are hearing. They hear, ‘Just be perky, and work hard and all will be well.’ Oh, if we only DID live in a world like that.

Sure, I had my denial too, and could have had a stroke, oh wait, I DO, regularly. Part of that is my autonomic failure, part of that is because I knowingly take risks which can and have resulted in permanent injury (though not massive stroke yet, whew!).

I cannot have a disease and then ignore it, and decide ‘I will do everything exactly how I want!’ – or I can, if I want to be in the hospital or die. It might seem like that but I don't actually do that. What I do is make all the preparations possible to avoid a negative outcome, I plan with the help of medically trained individuals to avoid problems and then decide what accepted level of negative outcome might occur. I do not recommend that people who live with long term chronic conditions be giant risk takers if permanent injury is involved (now if the risk is pain, and something new and maybe that things don’t go perfectly – well, I advocate evaluating and trying the things that are worth that risk).

An overwhelming majority of the TIA’s, seizures, strokes and other incidents have to do with that I have vascular autonomic failure. I just try not to live as if having autonomic failure means I have to go inside a sterile box every minute of every day. Nor do I give up (or wait to be 'saved') if systems fail and I need them to survive. Giving myself CPR by hitting my chest with my right fist to try to get regular heart beat is something I’ve done, and something I would do again (though due to lack of feedback now, it is unlikely I would feel that before I pass out). You have to do what you have to do. I continue to try to maintain the best possible health in order to achieve the best possible quality of life, so I can do dangerous and interesting things. Haha.

SCI’s, wheelchair use, diseases, and chronic conditions don’t make you a different person, just the same person facing different situations. Maybe a different person will arise out of that. I hope that if I sneezed and was suddenly all better, I would NOT go back to be the same person, do the exact same things, with no awareness of disability issues. Speaking of doing what I need to do to survive, that’s why I have to go to bed. Because I need the energy to get better. And as Linda will very much attest, I am not always perky with a positive attitude.

a short squirrel interlude: being home

Hawaii is over, Hawaii is still here.

The trip is over but some memories stay, and the idea that problems are just things to be overcome, that stays. The attitude that I am a valued member of society remains. But the last two memories or ideas are under assault: phone calls daily, from wheelchair sports collecting money, from Triumph who says they have been trying to get in contact (“When?”, “Uh, I believe I called in June.”) as they want $700 to avoid putting a computer unused due to glitches on the loan program. VIHA, Beacon, is there anyone who doesn’t call not giving a damn about me compared to the forms. I still have no GP, the walk-in clinic cancels the specials or tests ordered. I long for the time when people saw overcoming obstacles as something good, when at Badminton a player tries to claim a point because I was wheeling by (off court), “Wheelchair near court! Interfere! My point!” He later looks at me, realizes he will be in a match with a female wheelchair user, and takes his racket out of the line up, then puts it back to end up on the court minutes after me. Try putting ‘Jew’ instead of wheelchair and see how that sounds. I worry I left the best part of my on the Big Island.

Lungs, heart and nerves are withering, are dying. I live a life of oxygen and dusky fingers. I am adept at using my teeth for many things now. And the signals, the heat has increased in my upper spine, above the T-section. And by increased that means I am on 3 pain killers during the day, and at night the strongest, 5 pain killers, 2 sedatives, and then a spray of medicinal marijuana onto my cheek to help it absorb in minutes. I hallucinate. I bite my lip, my tongue. And I scream. How can I hold on to something, squeeze something to help me take the pain when I can’t feel my hands? I live by watching what my limbs are doing, I have gross motor function, felt or not: a crane operator. But the spine, it burns literally, while my body is goosebumped in shock it burns hot as I scream, my voice husky from a lack of oxygen. I don’t know how long? As many breaths until my lungs can’t push out any more.

I asked advice. What to do when the future is here? When it is seen? Spend more time with Linda, spend more time with squirrels.

I can do that. We have polite squirrels who often have a ‘a peanut for a starving squirrel artist?’ look. Yes and peacocks. The ones who aren’t thin are the ones who are bold. We found a pair of squirrels, both blacks (the smart ones) and one was getting peanuts every 30 seconds, running off and burying them. The other squirrel was digging up the recently buried peanut and eating it. Squirrel #1 hadn’t caught on yet by the time we left. I hope they are siblings.

We met an offspring or cousin to Psycho I call Fearless. Fearless is one squirrel who is going to survive the winter. Why? Because as Cheryl said, “That squirrel will be mugging old ladies for Chicklets.” Well, as to mugging, she would know.
As for me, I perfer my squirrels to view me as sort of like the bookmobile, I am the peanutmobile and all they need do is climb up and take a look at what is on offer. Fearless, upon returning, would run across 200-300 yards before leaping at least four feet away and landing halfway or more up my leg. Now I know what a tree branch feels like (and isn’t peripheral neuropathy good as he was using claws). I could feel the whump of force through the wheelchair. But at the end of the day it turns out he is quite picky, Fearless the gourmet? Or just wanting the highest calorie content?

As you can see by the leg, as he starts to eat after mugging Cheryl, Fearless has had plenty of action like fights. There is a claw mark on his back, likely a crow. This must be why he is basically sitting atop the person he just mugged and having a sandwich. Luckily Cheryl didn’t mind. See, we have VERY disability friendly squirrels (the people, ehhh, not so much – as we had been just been to a pumpkin farm and found it hard to find space in the disabled parking full of race cars and family vans, without a single blue badge in sight).

As we wheeled home, since I had frostbite in one hand, after turning off our cameras, a full grown bald eagle flew over us, just above treetop. She had a whole branch in her claws, nest building was my guess. There is one bald eagle at least in the park, but rarely seen. It seemed a good time to go home, falling under the shadow of the bald eagle.

The pain is still here, the fear of living without a net medically, the isolation, the daily times of being helped to breath, to clear the passageway, passing out due to lack of oxygen, the inability to move at all more and more often. I look into a future which realistically has no hope and want what everyone else does: living, a job, a social net, family. On one hand, VIHA has been hinting at a care facility. On the other, I am still planning a new trip while paying for the last, while sending out postcards and thank you’s. The race to use my hands has never been more painful, aching and conscious. No, I haven’t been well but I force myself out anyway. I force myself to do so many things, and now, I force myself to step back and take time to be here, and grieve a little bit.
It was too hard to face things. So my degeneration progressed. Starting today, a ‘Good Day’ isn’t a day when I am mentally like I was, or had a competitive experience, but one in which I didn’t scream, in which I smiled, or just stared at clouds. It is time to stop hating myself for the parts and times of me which aren’t as close to my Able Bodied Life as I could get.

Lie #5: “I can’t handle this right now” and going on.

I’ve been hit by one of the most painful lies from a few different sides over the last few days.
When I listed the lies the other day, I missed this lie, a lie the person saying it tells themselves, to excuse what they are about to do to you. It hurts me the worst, and hits at the lowest parts of my life. Variation are “I just can’t read your letters/blog because I can’t handle any more bad news right now.”, “I just need time to step back and ‘process this’”, “I don’t know how to handle this”, or “I just can’t deal.” These statements come from AB people, probably you thought of as friends, people you may have been there for in the past. But when your time of trouble comes, when your illness comes, when your diagnosis comes, when you start getting visibly ill THEN like shaking a tree for rotten fruit, friends fall into two groups: those who stay (the few) and those who run away (with a lie to make it a virtue).

Those who are burnt-out can’t even survive really by themselves. I can understand that. Someone in a deep depression is just hanging on and surviving is all they can. I understand that (in fact, this person usually will have the ‘I can’t handle the negative place you are’ bailout of friends also when most needed).

People will decides that they do not want to face the facts and consequences of a friend/partner/mother/father/grandparent/child who is dying/has chronic condition/has chronic invisible condition or is going through burn-out/unemployment. And let us not delude ourselves, it IS a decision: they come up with an excuse and run away.
For those who act that way, I still care for them as a person. I find their acts despicable.

Why? Because that child, or friend, that mother, or partner who is dying, who has a chronic condition like depression, or other visible or invisible ones: they CAN’T run away. Oh, they want to. Some days they might pretend for a while that they can, but in the end, the requirements of living with these conditions means that if not managed, if not resisted, if not maintained, if medication is not taken, then the consequences are extreme. So no, they can’t run. And so they watch the back of a so called friend or family as they run off.
Running away is easy. It is always easy. It also makes the burden harder for those who stay, and for the person who is struggling.

Okay, hands up anyone who WANTS to get a diagnosis of cancer today? Okay how about ALS/MND? CFS/M.E.? Bipolar disorder/Unipolar Depression? Lupus? Lymes? Who wants an accident which will affect their spinal column and thus the nerves below that point? How about a layoff and unemployment? Come on, I can’t see any hands raised! What, no one wants a nice terminal illness today?!

No, nobody WANTS those things to happen to them, which is why when an AB friend tells you that ‘they just can’t handle it’ explaining why they will be/have been ignoring you, then it really puts the boot into you. You think, “What, because they thought I could?”

Be honest. Say, “I am self centered and cowardly and while you might be there for me, and care about me, if I CARE about YOU, that means that I might get depressed and when I go out to dinner, start my exercise program, go to movies or when I am on vacation, that CARING could make me feel…..bad. And I don’t want that.”

Yes it could make you feel bad. Because when you care about someone who has something bad happen to them, then you feel bad too. And sure, people have their own lives and issues and need to take breaks and can’t be there all I time. I can’t. There are more I would like to be there for, but I can’t even control or predict my consciousness. I try. That means trying to read blogs once a week, or two, or sending emails back once a week, I try.

Why, beyond the cruelty of a ‘me, me, me’ generation does this matter? Because this is the lie that will hold you in a prison of isolation. Because every person alive will go through a dark time; their period of suffering. And if all you know how to do is run. Then you have no friends. Because every time a ‘friend’ has bad news, isn’t cheerful or funny anymore because their child died, or they have a Flare, or an MS diagnosis, and you ran, who do you expect to be there for you? Who will care about you? No one.

And you will face that darkness alone.

If you are reading this, commenting, then this isn’t about you. In fact, you are probably one of the people who have been ‘gifted’ with those things no one wants to raise a hand to receive.

I have been ill, coughing up bits of aspirated food and other particles. Apparently last night I was delusional and telling Linda that the ‘radio in my stomach’ was telling me to do things. Pain, exhaustion, fatigue will do that. Make you curl up for some time.
But then you get up again. Not because you want to, not because it is fair, but because whether you can ‘handle it’ or not, no one will save you but yourself. Today, a doctor who said last time that this had become ridiculous and they would take me as a GP told Linda and I that “Well, I can’t really take on the responsibility.” What is that? #30? So we suck it up and go on. I went to badminton tonight. I will post the pictures tomorrow. Because keeping me healthy and alive is my job, my full time job. Whether I am ready to ‘take on the responsibility’ or not.

Tips for Chronic Illness: from the Chronic side - Onward!

I have been reading a book I deem to be of some slight value and of some incredible bias called, Chronic Illness and the Family: a guide for Everyday Living. Which has a section called: 'The Well Spouse', and a Section called, 'The Family and the world' on dealing with all the agencies and other people who don’t get it. Do you notice a missing spouse (this is sort of like, “Where’s Waldo”)? I do, that’s right, there is no section called “The Chronically Ill Spouse” because this book assumes that person is pretty much dead, or going to be so they are here to help the partner to learn how to live, and enjoy life WITHOUT the spouse, while the spouse is dying (Super hints like "Get a change of scenery. You don't need to sit in an ugly room filled with oxygen tanks.." - yeah, no AB bias here, and no attempt or understand for the spouse who is hooked up to those tanks and might like a change of scenery too!). The sections on how to plan vacations and enjoy them and return to your life of going to movies, theatre and restaurants while your spouse stays home seems pretty shitty (along with sort of a how-to guide on verbally and emotionally abusing your spouse - including leaving them repeatedly, and how that's okay). I am not saying that Linda shouldn’t have a night out, I am saying, if it is a bond of true love, the ‘sickness or health’, leaving your spouse to wait in their own shit moaning because the caregiver forgot a pain dosage while you taking in the sun of Spain seems a bit, odd to freaking callous. But then I have noticed when I got ill that the books were always written by the survivors of chronically ill people who talked about how great it was when their spouse got stuck in a lift for three hours so they could read a book in peace. Or how they took a lover because their spouse wasn’t going to be able to fulfill that need. Nice. And also Ablist, because it makes no attempt to view the life of the Chronically Ill Person who might desperate lie dreaming of a vacation or even an evening out at a restaurant. Except that there IS no rest from Chronic Pain or Chronic, Degenerative and Terminal Conditions. No vacation. No extra lovers. No nights out on the town leaving you at home.

So first off, thank you again to all the readers who have stuck with me because yes, I burned out, I went insane, I couldn’t take it anymore,. I was the Beast of the Apocalypse and planning how to burn down several government buildings, and how to take a 9 mm. to my head (trust me, I wouldn't miss, I was trained by better than the national guard, I was trained by survivalist Christians!). But you know what, though I went a wee bonkers from the pain and the stress and the unrelenting seizures......the illness and the pain just goes on. And I narrated it. And you were here. And I have been leaning on you and only just realized how much. Thank you.

So here is, from the last 24 hours, my guide and plans on how to live, and fight for an adjusted life as a chronically ill person. And tips for CareGivers:

1) Being ill IS a job, so is being as healthy as you can: your caregiver has two jobs but so do you. So no, you don't go to the office, you don't get lunch or coffee breaks or gossip, and you have long and shitty hours, but yeah, you have two jobs too! Or three.

Okay, there is a lot of emphasis based on caregiver burnout, but not a lot placed on Chronically Ill burnout because, look at you, you’re not doing anything, right? Wrong. Being ill is a full time job that you can’t quit with unbelievable overtime. Linda has had naps on Sunday, Linda has slept in, I haven't had a nap in two years. I haven't been able to sleep in. It is shitty and horrid and unfair. I don't get a 'return' on my exercise, and yet I do it anyway. This is life.

Then there is trying to remember and stay on top of all the things needed to keep yourself at optimal health; a full time job too (and if you have only minimal memory like me, it means you have lists posted all over).

Now other people, even caregivers forget you have two jobs and they get resentful. You will notice that after a few months the sympathy goes away and you seen as a burden or an annoyance. Doesn't mean you get to stop your two jobs, but you get less support. And you NEED support. For me, I don’t know how to stop that. As you if you read regularly, my family are the people who help and support me in need; and that is not my biological family. Cheryl is my sister, Veralidaine is my Cousin, Kathz and Yanub are my Aunts, Wendryn is my sister, Nancy is my cousin, Lene is my friend and family, I could go on but these happen to be the names of the people whose letters surround me at my desk right now. They are those among others who write to me, who send me food and make sure I eat, who come over to help me so Linda can do her tour for work, or have time off. Without their love, without the support I get from them, I don't know how I could go on. This online family embraces me, holds me, sustains me. I wish I could repay them as much as they have done for me, I wish I could repay them ten-fold, but I can’t. What I can do is try to remember and acknowledge the people whose support, literallym keeps me able to get up and continue. And for whom when I can, I write, or send emails, or support to them. I have 260 names on my postcard project; I have 90 subscribers to my blog, I have 20 or so who comment. Some people support in different ways, some don't comment. I try to remember them all (or have them printed down!)

So aside from family and how being ill is a job, here is my advice: 2) determine something to do once a week or so that is beyond your jobs. Yeah that's right, make life HARDER for yourself. Why? Because I will not, and I don’t like seeing anyone defined by their illness. Today I sorted and put away clothes from the last months' worth of luandry that was stacked in three rooms. Maybe it took me 20 times the effort it would take an AB person. So what. I DID it. It was my VICTORY! Not because I had to, I could have kept with my regular jobs (ill and staying as healthy as possible), but I did it because I wanted Linda to come home and know her sock and underwear drawer was full. I wanted to know that as much as I am consumed in the illness, and it regulates how I sleep, how I eat, how I shit, how I breathe, how I can shower, every detail. I am NOT my illness. Yes, it is stickering, or doing postcards, it can be fun. Today it was sorting laundry, No, not a night out on the town, but something.

3) Welcome to the 21st Century

I know that your life has changed, and being a girlfriend, or a spouse or a friend. I know that with chronic illness throwing on a top and heading out to the pub is a two hour prep with a 50% chance you will have to come back early. It sucks. It really does. However, while the AB world will not slow down for you, there is no reason NOT to use the advantages of it. While you may not be able to dress up and eat out, there is a thing called “take out” – they even deliver it now! And while you may not be able to get a dinner and a movie, you can lie in bed or on a couch and watch a computer flatscreen (with a 25 foot cable) eating Chinese, or Thai. While you can’t take a traditional vacation, you CAN take a vacation; move to a new central location, which is a base, and then take small trips from there. It takes planning and work (lots), but it is possible. You can order your food online (many stores including safeway offer this option and delivery free for people with disabilities). You can have a standing order. You can order some premade meals to be microwaved from various agencies created to help seniors (you aren’t one, but hey, let them do the heavy lifting!). There is simple tech like clickers for lights or using high tech one way baby monitors so your partner can monitor while you sleep AND have a conversation on the phone at the same time. If you dream it, do it! Find it and do it! Is there a recreation organization for people with disabilities near you. Tell them what your dream is and let THEM figure out how to do it; because if they can take adults who are withdrawn autistic on double kayaks, they can take you, or on hang gliders.

Me, I am going to use my recline chair to watch Bones season 3 with my partner tonight, because I can! Because I want to. See, I went insane, I was covered in pain and I still am. So I need to decide: I can sit and wallow or move forward. Both look tempting. If there was the wallow without the pain, I would for that. But there isn't, so Onward.

I just ordered something I wanted on the net. Yes, it was $20. And yes, it wasn’t absolutely needed. But sometimes, I need to feel that I can do that and NOT feel guilty about it. And that I am not “mad” using my “mad money” – I am, deliberately getting something for me, knowing that there is a chance, hopefully not a big one, that I may not be here when it arrives (insert lilies and organ music!). Because I believe it will give me pleasure. I believe in myself! I get things for Linda too. Last night because A&E had a buy one get one free TV sets – a set on the ‘underground cities’ of current cities – from catacombs in Paris to the ancient aqueducts in Rome, to an entire underground city abandoned in Seattle. We will watch it together and even if we don’t get that opportunity, we had the joy of CHOOSING what we will want to watch together.

Anticipation, joy, a different day tomorrow; all these are sucked away often in Chronic illnesses. IS $14 too much to have something we both want and spent 30 minutes picking out? That’s cheaper than therapy, and if I am well enough, we have some fun in the future.

4) Keep one limb in the world. – I was going to say one foot but if you can’t move those or had them amputated then that is somewhat not great advice.

For me, that is sports, maybe it is a bookclub for you, or meeting someone in a café, or for coffee. On online gaming! Look, I know you have two full time jobs but what I am saying is that winter sucks and that times when things do suck, we need to remember that we ARE part of the world. We may not be seen as much (and we may feel alone, very alone), and it may take extra to extraordinary effort to get out there, but to go, once a month, or twice a month and BE part of it, to be known, to have passing the head nod of, ‘hey, glad you could make it’. All of those aspects which remind us of AB life and AB thinking because I can tell you: all work and no play and no going outside make Elizabeth a little loopy!

I think I better stop there. And stop talking big and start talking small. Because that is how chronic lives are counted, both in days (which pass in blurs) but in the minutes and the pills and the pain, and the calls for help. Also the arguments which after a while you feel there should just be a number. Oh yes, I was going to say, as important as it is for your partner to have their space and time, it is just as important to have your space and time. Your space is YOUR SPACE. Just because they bring you your food, or assist you or anything does not means that your partner or ANYONE has the right to touch YOUR things in your space. And you may need to explain this to different people a few times. But they will get it.

5) I cannot survive by hate. I realize now after a solid month of abuse and hate rained downed on me and Linda that hating back, that what this hate was growing was what Blake called the poison tree. Love and passion wins, over logic, over society, over hate. Yes, there is a time to deal with the issues of agencies and the people attacking you; but I say this from only my own experience, there MUST be a time to stop and step away. There must be a time to say, “They don’t rule here” and where what is genuinely important in this world does. Maybe for you that isn’t a person, it is animals, or even your passion for inanimate objects like books. Many great writers and thinkers both male and female said their best afternoons were ones spent with their books. But find Passion! And I say this to myself: Find Passion McClung. If I can find passion, I will not need to escape, I will not need to kill myself, because I will have something both to hold onto and to look forward to. Find many passions.

Okay, two more quick ones and then I am out of here. 6) Find a friend. If you are reading this, you are one or two comments away from being part of a community. No there is no forum or bulletin board because I am crap at HTML! But there are a lot of people here who are caring people. And if you had to choose a group to start to try and find a friend in, I would start here. Find a friend. To find someone like Cheryl or like Lene, or SharonMV, whose prescence and understanding is carried by years of the hard road of Chronic illness, is for me, worth having the illness. I was well, I was fit, I was successful, and besides Linda, I was alone. I knew after I threw a party for everyone in the fencing group and not a single one of the 25 people came – three blocks from the training area, that if Linda went first, I would die alone. Die as I live, alone and not really understood. Now I know, what friendship, what having a friend, a soulmate means. We can be associates with many. We can have a few who care when we don’t post, or email on weekends when they know we are the most lonely, and fewer still for whom every communication is like the continuation of an ongoing conversation. I don’t know why I have been so lucky, so fortunate in finding someone like Cheryl, for example. Who I KNOW will be with me at the end. Yes, I’m in pain, all the time, and I’m dying. But we are all dying. But few of us are as fortunate as I am in friendship.

7) And the seventh is to serve. Service, is a misunderstood concept, since the King or Queen was considered a LIFE OF SERVICE. To serve is to think of someone, to consider what they could use, whether it is simple and steady communication or random and exciting gifts, or a day out at the museum. Serve. Yes. I am asking even more again. I know, you have two jobs and I have asked for more and more and here it is with more again. Every time you get a postcard and you want to email me or send me a postcard, please do this instead: Think of the people you know, the quiet ones, the ones you haven’t kept in touch with, the one you see at church, the one who you know a little bit about and their story isn’t really that happy, the one who might not have the greatest social skills. If they are NOT stalker material, then please, take the energy, and the time and write them instead. Find a little gift for them instead of me. Please send them a postcard just for them; for me, for you. Yes, this next month is going to be horrid and hell for me. But December is hell for many people. Your act of service may be the little bit that tips the scales from hell to bearable. The thing is, you can only send, what happens after that, if you never hear again, that is out of your control. Deliberate service.

So, you have two lifetime jobs of which any doctor would give you a stress leave, but you can’t get one. Your caregiver can, but you can’t. And you are in pain, and you are working to do more, to do an extra job showing that this illness does not define you. And finding friends, finding love, finding passion (this by the way comes under prioritize – sometimes you just have to say, “And what is the worst that can happen?” – meaning, sometimes I can’t stand any more people, I can’t make it to that pain specialist test, so I don’t. What is the worst that could happen? That I be in horrid pain and face an even more painful death – golly that would be.....well, every day, wouldn’t it? Or that a specialist pouts and they don’t like me? Oh for goodness sakes, I’ll send a note saying, “I’m sorry, now how about YOU trying to act like an adult?”).

Anyway, next week I am going to do an 8K 'Merrython', at Oak Bay, I have never raced that course, I have to check over my racing chair. I have a chance to either have a slim possibility of dying or have a significant experience of doing something that rebels against every idea and aspect of the darkness of winter and expectations of people in my stage of chronic/terminal conditions (and will be COLD). Hell yeah! Let's go! I don’t care that my injuries from the August 1st race haven’t healed yet, at least this one I won’t be overheating.

EFM rides again. I don’t know how I am going to survive this winter but I am. I don’t know how I am going to stop the pain and the jobs from driving me insane, but I AM. And thank you for letting me lean on you, because while it seems my illness hasn’t given me a choice, you have in how to deal with it. How to fight to stay me, and free.
Sometimes, a girl’s gotta fly.