Monday, October 26, 2009

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.

24 comments:

JaneB said...

Hugs. Many gentle internet hugs. A good day, even for TAB people, is one with time for gazing at the sky and spending time with loved ones. I wish you many, many good days to come, even if you need more help during them.

Lovely pictures again

Lene Andersen said...

Lovely and profound. Time to stop hating yourself, indeed.

(and Fearless is awesome!)

Neil said...

Triumph wants you to pay for an non-functioning computer? Send them a cheque that can't be cashed. Or take them to small claims court. Except you can't do the latter if it takes more spoons than are available.

If Hippocrates won't take you as a patient, would his office at least help you find a doctor who would take your case? No, that goes against the Bureaucratic Oath: Promise noting, so you can't be held responsible.

I scream at the injustice.

At least you have Linda and Cheryl, and squirrels.

Love and zen hugs,
Neil

Tom P. said...

I am glad you had a good trip. I am sure these are memories that you and Linda and Cheryl will treasure forever.

We have a little beaten up squirrel that hangs out in our backyard. he is a gray squirrel who has eaten through our plastic garbage can lids so that he can enjoy the remnants of what we throw out. He also enjoys the sunflower seeds that Michel puts out for him. His tail was stripped bare and looked sore and bloody but it seems to be healing well with the fur growing back. I'm not sure if he was in a fight or got it caught somewhere.

Dawn Allenbach said...

I love you, and I'm glad you're still here.

Is that selfish? I don't think so. YOU are still wanting to be here, to a degree (I know you have pain-filled moments where you want to let go), so therefore I am thrilled to have you. In the end, when your desire to let go is greater and lasts longer than your desire to stay, then I will ask the Higher to make your passing quick and painless. Some here may think me awful to say that to you, but you expect honesty from me, and I owe it to you. I would ask it, but it would be difficult, and the selfish part of me would scream and rail against it. I would ask it, because it is what you ask for. No one knows your pain and function loss like you do, so only you can pick the right time of your passing. No one has the right to cling to your life when you are ready to let it go. My brother's death has taught me this.

While you cling to life, I will be with you and love your sisterhood. When you decide to go, I will cry and feel your absence in my bones, but I will sing you to your new journey because it is the best, most supportive thing I can do as your sister.

rachelcreative said...

I'm glad you got to visit with the squirrels.

I think that bump back to reality one gets after a holiday doesn't only happen to people who have to go back to work on Monday morning. It happens when you're sick and isolated and the reality can bite pretty hard.

"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."

Good. Good for you Beth. In my experience it's hard to let go of that but it's liberating to let go of.

SharonMV said...

Dear Beth,
I love you, your candor, your heart, your strength. I find myself in another period of "just hanging on" as you put it in your e-mail to me. My pain is not too bad (fortunately I have adequate pain meds), except for the emotional pain of being me. The fatigue from adrenal glans that aren't working on top of my usual fatigue from lupus, respiratory infections, fibromyalgia is almost insurmountable. Sometimes I sit unmoving, just thinking about the next movement on the way to standing up (My mind is shouting get up!, get up!) But I know that my body will at some point obey me and I will be able to stand up.
And now, my blood sugar has decided to act up again & I have to deal with trying to regain control over that. how dare that diabetes type II flout my will!
And then I come here and you are visiting with squirrels and Linda & cheryl are with you. And for that moment, I feel all is well in your world & mine. To still have moments like that & to still be able to enjoy them, is so very important. You show me how to keep trying, to keep going & when there is nothing else possible, to keep hanging on.

I wish I could take some of your pain go away.
Always your friend,

Sharon

cheryl g said...

I am glad some of the Hawaii memories are staying. I am sorry you are in such pain and so exhausted.

Feeding squirrels was lots of fun! I was getting a real laugh watching the pair where one would come get a peanut and quickly bury it. As soon as he ran back to get another peanut the second squirrel was digging up the freshly buried peanut and eating it. That does seem like something siblings would do.

I like your line about ‘a peanut for a starving artist?’. It made me laugh.

Fearless is a good name for that squirrel. Definitely an ‘I want my peanut and I want it right now!’ personality. Obstacles were to be ignored – why go around Linda when you can just scale her to get to the goal.

Beth as the peanutmobile – that’s good…

As for the rest of what you write… it is beautiful and poignant. Yes, please stop hating yourself. I like the redefinition of what a good day is. Having you smile at me is always a good day for me.

Dawn – what you wrote is beautiful and not awful at all. Thank you for saying it.

FridaWrites said...

I hope the pain medicines are helping some. I am interested in knowing more about how/if it works very much for you--there's been a lot in the US news about it lately. I've started wondering if I should be looking at states that have legalized medical marijuana--you have to be a resident to get a prescription, so I can't try it for a short time to see if it would work (with my luck, I'd get caught in my own state).

I love the photos--Cheryl shows the same kind of reaction I would to being mugged by a squirrel--high interest, but some caution. I love the photo of you bending to talk to the squirrel too--the splashes of color from the peacock and your socks are vibrant. You look great in your chair.

I'm glad Hawaii memories are staying!

e said...

Hi Beth, Cheryl and Linda,

Beth, as others have said, you need not hate yourself. I know your life isn't as it once was, but as recent experiences prove, it is still worthwhile. You have a wonderful humour, wit and intelligence, and plenty of joie de vivre!

Thanks for sharing the squirrels.

I don't know what to think of the GP issue...Before I started reading your blog, I had considered possibly immigrating to Canada, where the costs of medical care are not as onerous as they are in the U.S.

Is it just Victoria or does this problem with docs happen elsewhere there???

I wish you many more good days!

wendryn said...

I'm glad you got to see squirrels. I'm glad you are still here.

I guess we're both accepting limitations right now. Not easy, but I'm proud of you for finding a little peace where you can.

Devi said...

I'm normally not one to say that "animals are better than people," but it doesn't escape me that the squirrels, unlike certain people, don't mind a wheelchair in their space (the adorable furry things). The one you dubbed Fearless is my favourite - the personality is practically shining out of his little eyes.

Cereus Sphinx said...

I'm glad you're back and feeding squirrels. The new level of pain sounds rough, though. And jerk doctors. :(

But mostly I'm glad you are getting to be ok with what your life is like.

PS- Do you or Linda like jam? any flavors you particularly like?

Elizabeth McClung said...

Cereus Sphinx: I know Linda uses jam often, I will ask her.

I am not used to my life, but maybe I don't need to pour my energy into not being what other people view as a tragedy, like when I am sort of alzheimers, as long as I am happy, or not unhappy, then does it matter if I know everyones name?

Devi: the one thing about squirrels, or these ones is that they know they are supposed to be there and will allow us to be if we accept them and their rules. Humans have a lot of different rules and that itself doesn't always mean acceptance, sadly. I like Fearless, but I fear sorry for the ones who are just twitchy and give them peanuts on the hope they get over it or they won't make it through winter.

Wendryn: Yeah, loss kinda sucks. I am not to the part where I am actually okay with it, it is just this is my intention. Now I have to defend that line against the society which will try to impose value on it and me.

e: I am glad to share the squirrels, I am glad they shared themselves with me.

Victoria has no teaching or university hospital so no one comes here because they want to be better doctors (which is why we have so few specialists), but put in hours or come for family, or to semi-retire. But yes, this is Canadian medicine, having talked to others with different conditions, you need to be more than an advocate but collect the names of who you know - as they will be the ones who will help you and often it is the only way to get past a RN with a 'god complex' or some other obstacle. And if you don't fall into the pigeon holes, then no, you are on a track, which socialized medicine is about - putting you on this or that track. And if you aren't on the spinal cord track you get no rehab, no visits to vancouver hospitals, nada. And if you don't advocate and scream a little then the chances of you getting to a person who cares about your care, your need for care instead of going home at 4:30 is going to be difficult. It is free, it does have great benefits for those who need medicine for regular conditions or mainstream conditions. But the medicine is 10-15 years behind the US and EU in many places, in remote areas, add another 10 to 15 years.

In a different province I had a choice of GP's of - the doctor who would not ever touch anyone, the doctor who liked giving out morphine, and a new south african doctor. The south African doctor was deported after a time for crimes against humanity to stand trial in the Hague, so I ended up with the doctor who won't touch you - which was difficult when I cracked part of my spine.

Fridawrites: I am glad you like the photos, I think that I am happy when I get a close encounter with a squirrel while others are still sort of 'it is how close to my face?'

As for Medical M. - I have found the mouth spray very effective for assisting sleep and relaxing muscles. I have never felt particularly high, as I am thankfully never awake for a long period after spraying it, nor have I had to spray more than once. But I will see how that works for long term use. The cookie is so far a dud, as we are not sure if I am absorbing it because I do not seem to have the benefits. We have oil that we will try adding to a drink or other substances once we get things regular. That will let me know how it will work against pain for the last several hours of the day.

Elizabeth McClung said...

Cheryl: Well, I wondered what the long term effects would be - I will see what happens when my adrenal gland has more time to recover.

I did like the second black squirrel who learned it was faster and less running to just dig up what the other buried. It just reminded me of so many siblings. Fearless was! At least this time he didn't try to steal the camera.

I need to be able to find and create an environment where both are good days, mentally acute and non - and there is a place I will be able to smile and enjoy things. The one thing I lie about is the same as you - how much I am faking it disability wise. But now I don't have all the energy to pretend I know what is going on.

Sharon: I am glad you don't hate me for having these people who, without which, I would be at home, instead of out with squirrels.

That level of fatigue is like being in a far off purgatory, trying to send messages to people here, who are far too fast and busy to slow down to understand. At least that is how it was for me. Please do hang on as I hope that your future is one where energy lies.

RachelCreative: The post-blues is one Linda and I are sort of used to but it still bites, as she gets to go where she can socialize, and I go back into the hole.

That letting go can only occur in a place where I am safe, where I am able to have a 'time' where I am not mentally AB, then if hated for it, I learn to hate myself. And our whole culture hates it. How to defend myself when diminished capacity? dunno.

Dawn: I think that the choice will not be mine. I don't know how long the body will be sustained, or ugly the death will be, but it will be bad, when it comes, whether it is starvation or slow choking to death, or on a respirator with a failing heart, unable to scream. There are things that being in so much pain that you scream until you have no more voice teach. But that wasn't something I had time for before my trip, so now as it were, like death, it came for me. My death will be what it is, I can't change that, but I will talk about the reality of living, because the squirrels, postcards and Hawaii are the flip side of the screaming, I can't have one without the other - they both reside in the same body.

Neil: It seems you know the Canadian Beurocratic system well. Yes, I wish there was some ironic justice but now, just focusing on survival and helping those who need help surviving keep going.

Lene: I think we all have infinate ability to reflect what we are told, or how we become compliant, which in one way is to hate, to never show or BE certain ways. I want to BE.

Jane: Yes, it was good advice, squirrels and loved ones. I want to get help for Linda and some safety for me so that I have someone here who can let me just BE without putting up so much of a care plan that 'being' is something people have to call 911 or report so that no one is liable. I am being cared for by the same people who care for seniors - what do they think will eventually happen to us all - we will live forever? Sorry, their attitude, not yours, confuse me.

SharonMV said...

Dear Beth, I could never hate you! I am glad that you have Linda & Cheryl. MY heart sings when I see photos of you & the squirrels. I've increased my adrenal steroid replacement and am feeling a little more alive today. And I'm going to try another endocrinologist.

Can you try using some of the Medical M oil topically? Maybe it can be absorbed with a trans-dermal application.

Sharon

Neil said...

Dawn: That was beautifully said. Sometimes honesty hurts, but it's usually appreciated.

Beth: I, too, will mourn your passing and celebrate your life, and be happy for yor next journey.

And we're about to join the medical bureaucracy here. My wife was diagnosed yesterday with breast cancer. She starts on the merry-go-round next week with biopsy and MRI to find out how advanced it is. The fear level has currently advanced from merino to llama (the knitters will understand).

Love and zen hugs,
Neil

A. J. Luxton said...

Hiya. Just wanted to apologize for being so slow about mailing lately. My college courseload has been taking more of a toll on me than I'd thought it would (and making me really, REALLY glad I didn't sign up for more, as I'd originally planned to do) - (deleted litany of things I'd messed up this week.)

So, rest assured, you are NOT down there on my priorities list; my brain has just been struggling to keep up. Even though I can't always get my shit together to make it to the post office, I promise to never forget your friendship and I WILL write you soon...

I am so glad you have good solid memories of Hawaii. Enjoy the squirrels, and do what you can to get what you need...

If you are still in need of a functioning computer, I can get you one - not a new one but rebuilt, with decent specs (2-3 ghz, 512 mb ram) from this organization: http://www.freegeek.org

I've accrued almost enough volunteer hours there to pick up a free machine and would just need one more shift. They have Linux loaded, Ubuntu, with a graphical interface. I might need some amount of the shipping cost (not sure what it would cost to ship safely but it's probably pretty heavy.) Let me know if you still need this and are interested - my name, no punctuation, at gmail dot com.

rachelcreative said...

When my capacity is diminished I just have to hope I am too slow/confused/not getting it to realise I need to defend myself.

But there are times when you can't escape it. Most of the time I try to have the attitude that life is too short and I have too little energy to bother paying any attention to the cruel, nasty, unpleasant, prejudiced people. But when those people make up your personal and medical care and assistance it's kind of hard to avoid huh?

Just because they are bigots doesn't mean I have to accept their view of me. I'd rather listen to my family and friends instead.

Baba Yaga said...

Oh, I'm glad you've retained a bit of Hawaii. Hopefully long enough to give you a little sun in the dark days.

Not hating yourself sounds like an excellent idea. You've quite enough to contend with, without that.

Yes, there's need for grieving. So far, on my rather different path, I find it doesn't stop, it just gets gentler and less over-mastering, & more intermittent. & doing it, accepting the limitations of now (only the real ones, of course), *does seem to have its reward in peace, even joy. Joy more and more in the little things, if friends and squirrels and sky-gazing really are little.

When I had my first spectacles, everything *shrank - I kept falling off kerbs because they looked so narrow -, suddenly buildings had sharp edges, suddenly I was dazzled in bright sun... A change in focus is an odd thing, one realises that the world is very different from one's myopic view of it.

If we can help make the quiet days, the 'disability days' (I think of it as off duty and on) more enjoyable, sing out.

Dawn, what you said was lovely.

Diane J Standiford said...

The ONLY thing that matters is that you are happy. That, and that one of you wise up the poor squirrel who is getting his nuts stolen by a smart-alek. Your squirrels are WAAAYY nicer than mine were, in my old 'hood. They ganged up on me in my scooter, ripped my nut bag from my hand, tried to take mt SCOOTER away! I gotta get those pics on my blog. I think they were doing drugs left over my the 'hood heroin addicts.

SharonMV said...

Dear Neil, i'm so sorrry that your wife has to face this disease. I know you will be a great support & comfort to her during this time.

Is the fiber fear level ascending? For us stitcher's silk is the top thread. Anyway I hope the fear goes down after the tests & results.

Sharon

Elizabeth McClung said...

Neil: I wish you and your wife the strength and the courage to deal with what comes up. There is this idea that Breast Cancer is the 'good' cancer because you can survive. As you are finding out, there is no 'good fear' or 'good terror' or 'good invasive treatments' or 'good radiation' or 'good chemo'. I wish she did not have breast cancer, I do. But she does. Now she has to do what must be done. They are very good with oncology regarding breast cancer in Canada. I hope it is benign. And I hope that you both find the support you need to last another week, and then another.

Sometimes the hardest thing for a guy is to just be there; when all of live teaches you to do something, to solve something, to build something. Fight against that to be there for her, please. I know that it is not my situation it is yours, both of yours but I've seen it a lot. I hope it is beneign, and if not, a lumpectomy, and a time when this is just a long ago memory and a little scar.

Neil said...

Thank you, Beth and Sharon. The lump is apparently somewhat bigger than it might have been; it was her first mammogram. She has a family history of cancer, so the odds of it being benign might not be good.

She goes Monday for MRI and a biopsy. And she's prepared to knit a new boob if necessary: see http://knitty.com/ISSUEfall05/PATTbits.html

Most of all, we are BOTH going to augh as much as possible, stay positive, and not psych ourselves out.

Thanks again, bear Internet niece.

Love and zen hugs,
Neil