Thursday, September 29, 2011

Wheelchair Bowling (and a little death).

This week has been all about Death and control. I lose control when I sleep through all of Tuesday, but others, such as the Palliative in Victoria and other caregiving demand more and more control until words like ‘allowed’, ‘will let you’ and ‘will decide’ infiltrate sentences. Though care groups are set up until a broad invite, there is usually a gatekeeper, likely the moderator or a medical person appointed who ‘will decide’ if you are acceptable. In Palliative, though the people are employed to ASSIST and improve the quality of life of the person dying, and it is stated often, that would make the person dying the one who calls the shots. Is that something you can imagine? Particularly if there are some senior RN’s in their 50’s and 60’s and see the PEOPLE (they like to call them ‘files’ or ‘clients’ or ‘bed’) come and go, but they protect their small kingdom. So do many others when care giving is involved.

Should I lie here and not talk about my plans for ending my life in a dozen hours and talk about bowling instead? Or talk about the emotions that make me want to speed up, or at least control a fast moving schedule? I live now not because of any care made by any doctor (treatment is not what I am receiving, but pain killers and band aids), but because I pushed myself very hard to live. But if I live, but all that I desire to live for: quality of life, friends, energy, spending time doing things, spending time with those I love – if all that goes away, then why keep tormenting myself?

Thank you for raising $190 for Cancer with the Terry Fox, it was almost double the goal.

Ah, awkward silence means that bowling wins rather than the uncomfortable feeling of not knowing what to say.

I went bowling. It took two months, two trips to Port Angeles, planning but not a great deal of money once there to accomplish. Linda and Cheryl also came. Victoria does not have a 10 pin bowling alley as that was wiped out for a condo and business part. Joy, something we were missing, I am sure. The alley in Port Angeles is a wee dodgy, with a bar, but it does have a lane, by the side and I found a large finger ball which weighed about 6-8 lbs, none of the 10 or 12 for me. The idea of bowling is to throw the ball, which is kept on track by back and side spin and it hits between the first and second pin to get a strike, or knock a lot down. If you knock all down on the second ball it is a spare. Gutter-balls go into the gutter on each side of the lane and knock down no balls.

This was a first for me, bowling from the wheelchair and it was hard. Plus I sucked, since it was my first time. Standing bowling I can do, except I can’t stand (the damaged caused to my knee and legs from the Terry Fox precludes doing that anymore). And getting the spin and momentum from the ball is hard indeed sitting down. Yet it is an official wheelchair sport and popular compared to many, as it available without a lot of specialized equipment.

I got gutterballs one after another after another – by the fifth frame I had thrown one ball that made it to the end to knock down pins (9 gutterballs). So I asked them to raise the ‘bars’ – if you SUCK at bowling or want to have fun in the wheelchair use the raised bars which need to be set by the staff to come up on your turn. These are barriers to stop the ball going into the gutter so it is like pool/snooker, you can end up with a strike on the rebound.
I found in the UK, where 10 pin bowling is not common, that a church, or mixed age outing with those who have to use walkers or other aids, having the bars up only makes a game which is boring and sad (who wants to pay to show everyone that you can only throw in the gutter), fun and exciting as even a bad throw can get points. It is used for kids often but I have used it for adults in the UK and USA with positive results – it makes new players have fun, which is the point of bowling. For those who have arthritis, and can’t throw the ball, there is a ‘ball slide’ where the ball is placed, you aim, and then with a small push, it slides down a ramp and off toward the pins. I have used this with adults, particularly those who have hip problems or movement and shoulder or joint pain. Again, it makes a outing for all ages and abilities (the staff has this, again usually for kids, but my policy is that adaptive equipment is not age limited, and YOU are paying, so have fun!).

Linda was pretty consistent and took the lead in both games. Linda got some spares and one strike, learning to lower her knees. Cheryl had the same sort of curve as I get, a slow start, good middle, and then as fatigue hits, more erratic, but she finished well and I think we all improved over the first game.
For me, there was two scorekeeping: what I threw which went straight, and what I threw which rebounded into a score. The best I did for straight throws was a spare (all down in two throws) huzzah! After two games I could throw straight down about 50% of the time, instead of 10% at the start. While the worse I threw, the better the score on rebound. The best/worse was a ball which gripped my thumb, got thrown almost sideways and made THREE rebounds on the way down…to get a strike! I was ashamed as I had groaned with the ‘what an ‘ack’ throw’ and then I get full points for it – bah! Next time I will use the gutter blockers for the first game and none for the second.

I do recommend bowling as an inexpensive group activity which fits all ages and abilities. I enjoy it and enjoy the social aspects as well. Wheelchair bowling is very hard, and I find no cross over skills at all, but then, learning something new, while embarrassing at first, is something good to do often. I would like to challenge myself to do more new things, however humiliating.


Noisyworld said...

That looks like fun, I'm so glad you had a good time doing something that worked for everybody :)
I have great memories of bowling with my school friends pre-injury, half the fun was putting Bon Jovi on repeat on the juke box lol (not an option now!) must have driven the staff to distraction XD

imascatterbrain said...

I come to your blog for uplift-ing-ment (there was a term in there somewhere, in memory?)
and inspiration - and the best bowling I had in decades!

thanks! Lorraine

oh, rats, is "inspiration" the term I was searching for?
Then, that PLUS another good term...

Elizabeth McClung said...

Not dead yet, but not able to sleep, insomnia now. Seizures preclude an opium drink.

I did have fun bowling, too bad that with the change to winter schedule, it will be a challenge to go bowling anytime soon. But I like trying new things and the advantage was: I didn't have to pay for shoe rental! I would like to have a juke-box in the bowling alley - I wanted to go to the drive in, but it is closed for the year, I didn't know it had winter/fall/spring closure, which means I have to wait until next late spring to go to a drive in! LEt's take odds on that.

I often hide what has been occuring in my life to try and provide upliftment - I don't know if it is a word, but you created it so why not?

I hope you go bowling, if you hope to do so, then inspiring is perfectly apt - as you were inspired to do or think something.

SharonMV said...

Dear Beth,
thank you for telling us about the bowling expedition. I've never seen a little one-lane bowing place like that. Less noise, (noise is one of the things I didn't like about bowling). Looks like you had fun from the pictures.

I am here to listen if you want to talk about the other topic, the one that is hard to talk about.I'm sorry that you don't have more control over your care - hard enough when you don't have control of your body, when sickness takes away time - at least the bloody care workers should do what you want them to & follow your wishes.

I love you Beth, you are an inspiration to me & provide much upliftment whatever you do or don't do, whether you give me joy or pain.


Anonymous said...

that is why I love you oh brave warrior.. keep up the fight a hug for you if you could accept without pain{{{{ELIZABETH}}}}


Neil said...

Huzzah indeed for bowling! Good, clean, uplifting fun. Despite the lack of Bon Jovi...

Beth, I love you as much I could love anyone I haven't met and aren't likely to. I've learned a lot from you; seen a few great movies, read some good books, and had some very enjoyable email conversations with you.

You're wonderful, Beth, and so is Linda. Cheryl too.

Love and zen hugs,

Raccoon said...

NDY. That's what I like to hear.

Awkward silence. Yeah. We all know it's happening. We still don't know how to talk about it.

Don't you know that, as you get sicker, you are less able to know what's best for you?

I can hear you now: "Yeah, right!"

I didn't know that bowling alleys have gutter guards! Maybe I should try. There is an alley just a couple of miles from me...

Lorna, Bob and Liam said...

Uhhhh, no awkward silence here.

You're on such an emotional rollercoaster, it *is* hard to know what to respond to.

Your despair at the beginning of your post? I actually can empathise on a very superficial level with your desire to take back control over your life - I won't embarrass myself by relating the story, which does end with my getting an unusual piercing because, while it was inflicting pain on myself, it was MY decision to do something to MY body. *sigh* Let's see - a piercing versus taking your own life. Not much of a comparison, but honest to gawd, I can inch toward getting why you must feel that way.

At the same time, later in your post you are hopeful - talking about continuing to learn new things. We enjoy hearing about the bowling, not because it's easy or superficial or comfortable, but because it was a good thing for you - a chance to get out, to challenge yourself, spend time with folks you love, etc.

Do we hear your despair? Yes. Do we hear your hope? Yes, also. Keep talking to us, as long as you can and as long as you still want to - we can listen, and care, and love. I wish we could do more - but we can do no less and still call ourselves your friends.

Tina Russell said...

I’m glad you had fun bowling! I think it is best to try new things when they make you a feel a little silly, especially when you’re with friends who feel a little silly too.

About the death and suffering stuff: I’m sure I’ve said it before, but we’re happy to have you around as long as possible, Elizabeth, but ultimately it’s your choice when/how you’d like to die. I’m just grateful for every second you’re around, and I’ll continue to be grateful for that time even after you’re gone. (hugs) I’m sure you already know all that, I just wanted to reaffirm it.

Baba Yaga said...

Hi, Beth. I have an e-mail from you, which needs a little time to answer. Time I shall have today, but what I have *right now* is cup-of-tea-length time.

So; yea, I entirely understand the need for control. Only someone who's never had it removed from him could really fail to. Death as control? A very reasonable thing to think of, in your position. If you come to that point, then know you go with love; and no blame, for you've fought far too long and valiantly for that. I hope you don't come to it, because it's such a horrible, lonely way to go. I imagine dying is always a lonely road, especially when those who should be on your side treat you as an uncontrolled force, to be contained (I remember that well from my years in the psychiatric system; that it should happen also in palliative care is shocking). & yet, when willed death becomes a friend where others are absent, that is loneliness indeed. I'm sorry.

... And then you have such a strong gift for hope, and for making connection happen. I'm glad you got to go bowling; I only hope you don't pay too extraordinarily heavily for it. I've only done it once, and it was fun until the loud music began - oy! Thanks for your perspective on making bowling more accessible: you're quite right, all aids are there to be Used.

Learning new things? Yes, very much to the good.

SharonMV said...

Dear Beth,
Hope you got decent care today and had some time doing what you enjoy and time with Linda.

Also I wanted to make clear something i said in my previous post. You do not give me pain, I was referring of course your writing of your story and the pain you experience. Although it does hurt to read about the bad experiences, I want to know whatever you wish to share. I may not know what to say, but I do listen.

The fun stories are good too!

Love, Sharon

Neil said...

Raccoon, and others: Regarding your "awkward silence" comments; thank you all. I wanted to say something about that, and didn't, because I couldn't phrase it properly. Raccoon, you said what I would have liked to, but didn't have the tact and grace to say.

Lorna, Tina; you both have far better writing skills than I do. Thank you both.

My taking-control piercing was the navel, and I was 42 at the time. It didn't get infected, but my belly didn't like something about the piercing, so after three years, I gave up and removed the ring; the hole closed within 24 hours, and I couldn't have put the ring back in if I'd had to.

Beth: what the others said goes for me. I'm happy to have you as long as possible, but this blog is purely your choice. We all love you, we all want to keep hearing from you, and we all know that you're not going to be around as long as we would like to keep the blog going. Yeah, there's an end to everything. Let that end be positive, and let it be YOUR choice.

Your choice, however, should (SHOULD) be with a clear head, and a functioning brain. I offer my usual atheist prayers that you have those when needed.

Love and zen hugs to Beth. Linda, and Cheryl; plus Racccoon, Sharon, Lorna(!), all the other usual posters, and everyone else in the room at the moment. You're all special. In a good way, of course. :)

GirlWithTheCane said...

My sister and her husband eventually talked me into bowling a few years back. I was terrible, because my balance is so bad...but we had fun. I'm glad you fun too.

There are lots of people who care about you, including me, who are willing to hear about the other stuff. You know where to find me.

Noisyworld said...

Write what you want to write, write what you need to write- we're here to be part of your life (and perhaps death) wherever that takes you and us.
Rock on Beth :)

Kathz said...

I'm glad you enjoyed the bowling. I haven't been for a few years but used to enjoy it. When I took the children w almost always had the barriers up for all of us and it was a good way to develop skills - and it also gave the option of going for a ricochet quite deliberately, which was an additional challenge for good bowlers. Perhaps you and Linda could try deliberately ricocheting the bowls.

Anonymous said...

Hi its Nicci :-) We like bowling, I am not very good tho. Nina is quite good in fact she went last night for a work do, she won the first game! She also like playing skittles although that's a bit more of a hassle as someone has to stand them all up again! I like the new word upliftingment. I hope there is something today that is gives upliftingment to you both xxx

Anonymous said...

How people here can write about bowling, knowing that Linda beats you is beyond me. You've clearly deliniated that you are in an abusive relationship - if Linda were a man - there would be outrage. Shouldn't there be outrage? I'm afraid that my only thought was that at least with bowling, that abuser had something else to strike.

wendryn said...

I will still be here, listening, whatever you choose to write about, no matter how hard.

I am glad you got to go bowling. I like bowling, despite the fact that I am awful at it! :)


Elizabeth McClung said...

Anon: caregiver abuse is more complicated than spousal abuse, though in this case Linda is my spouse. In the same way you don't need to 'beat' a child for it to be abuse, you don't need to beat someone who is unable to provide oxygen, or food, or medications for themselves in order for it to be abuse, there is withdrawl of care, psychological, emotional and other types. And since in a recent US survey 2 out of 3 women had been in an abuse relationship or were still in one, it is not always as black and white as in after school specials.

Anonymous said...

because we are so far away
because we do not know the whole situation
because we can only use words to help,
we write of things that might be uplifting,
we write of experience and shared times
we try to convey love and thoughts. we try to be uplifting

Anonymous said...

I am praying for an end to this abuse soon in anyway God wants to!
God have mercy...

Lene Andersen said...

no awkward silence. Post what you want to talk about.

That said, the wheelchair bowling pics are great! I wouldn't be able to do it, but it looks like fun.

SharonMV said...

I love you Beth.


Kate J said...

Beth, the bowling sounds great! I bet you'd beat me at it,though - I'm absolutely useless when it comes to bowling, even with the side thingies 'up', I can still easily miss every single pin.
I'm so glad to hear that you, Linda and Cheryl got out and had some fun. Having fun is the most therapeutic thing going, in my opinion.
A little pleasure doesn't make the pain, the fear and all the rest of it go away, but it must surely put it 'on hold' for just a little while? I hope so, anyway.
Whether you're talking about the pain or the pleasure, the fear or the fun, you know you have friends out here listening.
Love and peace