Oh yes. Not certain if it's seasonal or whatnot, but my asthma has been kicking my ass the last couple of days. Can't breathe, sleep, run, stand, move... basically suckage.
And in between that still trying to be responsible for everything.
Wash has been helping as he can. He did a load of dishes by himself today.
I am beyond tired, but I honestly feel like if I truly gave into it I would never wake up. Wash is worried I have clinical exhaustion now. Maybe? Even so, there's nothing to be done about it. I still have to take care of him as long as he's alive.
(3 hour gap)
Sorry about that. We had our AC blow out today. Friday afternoon of course. One of the last 100F+ days we had! Joy!
Still waiting for the repairmen to come. Hopefully less than an hour now.
Trying so gorram hard to keep Wash happy and cool and not dead.
My life? Long moments of monotony and small moments of pure love and every now and then a complete disaster thrown in.
And yes. Wash can't regulate his body temp. When my bedroom is more than 90F it literally poses a threat to his life.
Such it is living in a 30+ year old place. No insulation so it gets HOT and fast here.
I've had at least 3 asthma attacks in the last 4 hours. This does not bode well as a calm or good day for me.
I've been trying to do the best to keep his spirits up lately. He's recovering from chemo so that normally knocks him down to start with, and he's fighting an infection now to boot. As of now nothing serious, but I have to hope and get him to work to keep it that way.
He's been spending a lot of time in bed because of it. So, we've had time together. Books to read, games to play, movies to watch. In between all that a bunch of doctor visits and pharmacy consultations. I did send our Pharm another thank you note though. They really work hard to help me manage all his pills and medications so that they work and I don't mess it up.
He had some good moments in therapy today, perhaps the start of progress. I can hope. For now, there are a few new tools to try out to see if his coping and learning skills can improve.
I've been thinking lately of what my life might seem like to you, dear reader. Chaotic? Depressing? Faithful? Morbidly entertaining?
Perhaps it is a mixture of it all.
The best way I can think of to explain things is that to me I now see things and time as closer to being in a movie theatre. The house lights are down, the screen begins to glow, and the scary previews for the halloween period come on. You know the movie will start soon, but you have no real idea when, no control over it, and there is a new story being thrust in your face to watch and experience. That's a mild analogy.
There are moments of great excitement, worry, stress, fear, relief. There are boundless times where he is just asleep and I can only watch, soaking up the time and memory of him. Life changes goals and time for us, focusing not on a future goal or idea, but instead the moments of life currently passing by, as it's all the guarantee we have. Focus changes. Time still passes, never ceasing.
The bad days are days when I cannot remember the good outweighs the bad. Those days I fear and hate. I hold myself to be perfect all the time- for his sake?- and I cannot keep up. No one really can, but I cannot stop myself. I grieve that I do not have the knowledge or power to stop this, to cure this. I cannot take it away.
But I can write and record and remember the laughs and smiles of him today. The cheer on his face at seeing his friend. The satisfied look of feeling no serious pain and just enjoying breathing and singing. I can remember that.
My life is both all that it was, and nothing at all the same.
I have to write my own rules for this. There's really very little precedent.
I can hope this was more insightful than rambling.
I was asked a few days ago about the History of why I call Kevin "Wash".
Back when we first went out the first movie we saw together was "Serenity". This was back in 08 and we were/are huge Joss fans, so it made sense to spend our date on the couch enjoying something.
Over the next few weeks as we talked and dated we went through and watched the whole season of Firefly. Between the two of us we have 2 copies of Firefly and at least 3 of Serenity.
I also own all of Buffy TVS so we made use of that as well. It was one of those instant we can talk about the characters and morals for hours relationships.
I knew Can't Stop The Serenity day was coming up, and Kevin had at the start of summer asked that if we were still seeing each other at the end would I go to the screening with him?
He had no idea, but for 3 weeks in June I was working and knitting.... completing my very first project ever. He gave me motivation. I knit him a Jayne cap. It was literally one of the best gifts I have ever given, and I cannot forget his smile when he got it. Something like the photo here.
It was so hard to decide who to go as for the showing. There was really no question that we'd be dressing up / going as the characters, but which?
We ended up trying to do something a bit creative; I dressed as River- the flowy dress, loose hair, kickass boots, crazy eye...
Kevin put on his best suit and borrowed a pair of blue nitrile gloves from me.
Two by two.... hands of blue....
I wouldn't say our love of Joss Whedon and his works is what brought us together, but I will say it has created a bonding point so powerful that I can know with absolute certainty that if he is having a bad day, I can put on Dr Horrible's Sing A Long Blog, Once More With Feeling, Serenity... and he will be smiling with me by the end.
The real story behind Wash? Who's the character with the biggest heart? Some might argue Kaylee on that crew, but my guy is the same wonderful type of man, has the character that he will still sneak off to go take on the danger because he cares about me. He protects, and loves, and keeps everyone together. He can tame me, and shows me the good side of humans.
He made this video after we got engaged and right before we moved in together.
My Wash says, "Gorram Tashi! I thought you'd seen the movie! His script ends on page 87! My script is shorter than everyone else's now too! Guys? Page 87!"
We also are the really fancouple types that his beautiful huge 3'x4' cast autographed Serenity poster is in our bedroom. Sadly I don't have the proper frame for it, but he loves it and loves to tell the story of how he won the poster from right under Harlon Ellison at the con a few years back.
I had a few posts planned out, a couple announcement-y type things to say.
Today I am feeling rather worthless. Valueless. Severe self hate.
From a biological standpoint, I purely fail. I should just take myself out of the system, using up resources that could be allocated to those who can successfully breed. Not me.
From a culture specific socio standpoint, I also fail.
My value placed on me from birth up by my family was to continue the name, pass the genes, raise kids, propagate the cycle. And for a long while, I didn't want to. Then I fell in love and got married to a man I thought would be a wonderful father. We wanted to enjoy each other, then expand as a family. We thought we had the time to wait.
Right now I care for Wash. 24 hour a day everyday. Dear, reader, this is something I've actually been doing since June 2009. With no breaks, time off, holidays... Since Nov of 2009 I've been caring for him as a husband and cancer patient too. I don't get a 'weekend'.
I'm not able to create future taxpayers. I'm not able to contribute now to taxes, as I don't get paid for the work I do. No one considers the person keeping someone alive to be "work" unless they're not related it seems. I cost money. Merely to exist.
With the medical debt and trashed credit score from Wash's incidents when he had the tumor I cannot afford to go back to school to finish my degree- or any. So, that cuts out education. I now have the start of a nice looooong gap in my work resume which I'm sure will be helpful if I ever can go back and do some work some where. I doubt I will ever get a high enough clearance to do some of the other work I once dreamed of.
The family that I tried to start with him will die with him. And there's really no one else. Most of my family, it's as if we don't really exist.
By opening up to the idea of a love; I've lost half of my heart to cancer. Attempting to succeed at "life"- to have something average and at least something good, has just led to utter failure.
Sometimes I am so jealous of him. To have no idea what it is like to have your entire value put not on your mind or heart, but honestly, from just between your legs.
If I was living in certain parts of India or Iran there'd be a 1 in 20 chance Wash's family or even my own would burn me to death after he died. Not useful anymore. It happens a lot more often than I think a lot of Westerners are aware. And it's horrid.
Rational truth is not always compassionate.
The pondering I have is this, every human life has the possibility of life changing value... but for how long?
Does a time ever come when we can admit to ourselves there is no more use in life? Do humans?When one consciously looks back and forwards at their situation and societal surroundings and says, "I have done my part, made my mark, now it's time to go."
Could someone decided when they wanted to go and just will their heart to stop? Physiologically- perhaps?
How does one determine worth if every marker you fail at?
Both cats are still asleep. Wash has taken his pills, taken his anti-emetic and gone back to sleep.
And here I sit down to type. It's been a bit since I've really opened up and not just passed along the inane details of my day to day life.
So, what's up, Tashi? as the saying goes.
The standard family issues. We have someone close to us I will give the moniker "G". "G" has known me for years and years, and knew Wash pretty much from the start. G has not had an easy life either, and when in the past few years he has needed something- an ear, a meal, a ride or 7, groceries, movies... you know the stuff you do for a good friend without a moment's hesitation because ... that's what people do, right?
Well, not G. And now I am not sure if perhaps I have misunderstood someone so close to me, or perhaps they are normal and in fact my Aspie brain is doing more than needed.
See, for me anytime G needed something that I could provide I would. Never a tit-for-tat, quid pro quo, it just was. To me, a close friendship- like a sibling relationship- is something that you love the person in a way and treat them as you want to be loved.
Am I incorrect on that? I tend to take things very literally in my life, and I do recall from age 3 or so on being told to "always treat all people like you want to be treated, and love like you want to be loved".
I had one friend years ago back in high school call me "Loyal". I took this as a compliment until he amended himself- "It's not Tash. On you loyalty is like a dog, you keep giving it to people who don't deserve it or abuse you for it. On you it hurts."
I have remembered and held onto that comment for a long time. I have to think sometimes it is true. Is that normal? I don't always have good models to compare and go from on behaviour.
Back to the story. So, earlier this week Wash apparently (I don't monitor his every email or phone conversation) asked for some help. Like, I *need* something can you do it type, a request. Not a demand, and not a "for trade" (help me move, I'll get you pizza) just a request. I assume this is something that Wash thought G would be able to help him with. Now, I am not sure if perhaps Wash was unclear (possible) or if G was just being a dick (possible) but there is some strife and unbidden anger in our house.
The thing about me is that I do not ask anything of anyone that I would not do myself if they refused. I will ask for help, but my understanding of my self is that if they fail it must be something I am able to then accomplish. This is my wiring and has always been.
So, I have never asked any favours of G that I was not willing to do either myself, or right back for him. I assume the same of Wash. Perhaps not.
Here is the issue, G does not feel the need, want, desire to help at all if it is not reciprocated in some way to him. "Why would I go out of my way to do something for Wash if it didn't benefit me at all?"
Alright. My issues with this. I have rarely refused to help G when requested, and usually there was a solid reason why. Wash has been the same and has pitched in a few times when needed. Now, granted Wash was asking for help. But he is G's friend too. And I can understand a friend a time or two saying no. This was not by means an extravagant request- when I asked Wash I learned it was something in fact I have done in the past for G on more than several occasions. So I am just genuinely confused.
Why wouldn't you go "out of your way" to do something for a good friend? Why wouldn't you "go out of your way" for a fracking terminal cancer patient? Trust me G, he has much less time than you.
I just simply do not.get. humans. No matter how much I read about them or history, or watch and observe guided and unmannered behaviour I don't get it.
I guess that's why I never flinched around the murdered and other victims- the capacity for violence and savagery and selfishness of humans is unsurprising, but I cannot say I understand it.
I simple don't.
Now, I am not equating murder with refusing to help Wash, let me be clear. But in the same way I cannot understand how a human can murder another I cannot understand how one person can seem to and say they care about someone and literally make it a conditional and not giving type of friendship.
Do you have scorn for other humans Tashi? Honestly, yes. Not all, but many more than perhaps I had imagined as a child. Funny, sad, miserable, and sometimes, vary rarely, absolutely brilliant and limitless- humans.
At least I got almost 7 hours of sleep last night...
Chemo week has hit.
Today, here is my "fun";
*Take Wash to dr appointment. This requires getting him up, out of bed, showered, dressed, into the car, and up into dr office.
*Grocery shopping- need food! Least for him.
*Have to cook matzoh ball soup for dinner
*Meet up with a friend who has some stuff for us
*Possible bank run
*Driving out of my way to Southwest Laveen to see/yell at my brother. Funny how every time he moves more than 15 miles away we are always required to come to him, yet when he lived 15 mins away from me before, I still had to go see him. I can tell how much/little he values me or my time. Or Wash's...
(rant about "help" another time)
*Drive into Mesa to grab/store some things for a friend who is moving this week
*Drive to North central Phx for Rosh Hashshonna dinner.
*Monitor Wash through this
*In a car with no air conditioning
*Make several follow up phone calls
I so already want a nap.
Hey, are you on the Facebook? (Not into arguments over its usefulness as a tool, but I do long and miss the days it was for college students and alumni only. Le sigh)
Then check out the awesome fan page Wash's Frat set up for him!
If this was a Hollywood movie we would be coming up on the climax and "good beats evil" resolution.
If this was a movie I could feel confident that Wash would get sicker, then make a marvelous and miraculous recovery.
If this was a movie someone famous would be alerted to Wash's plight (and mine) and step in to help.
If this was a TV show we would somehow be able to start our own foundation and maybe "Find a Cure" (TM).
If this was a Hollywood movie I would not have miscarried and Wash would have a son to "live for".
If this were a Hollywood movie his brother would be a match for an obscure and experimental treatment that *gasp* works and cures Wash!
If this was a Hollywood movie Wash and I would be on a plane with a fantastic orchestral background testifying before Congress about how horridly the dying are treated in America and the Government and Health Care imposed poverty while a 26 year old man who just started his life now dies destitute.
If this was a Hollywood movie, we would have the perfect ending.
But this is not a Hollywood movie. This is not a Lifetime Made-For-TV-Movie, or even a televised special.
This is real life.
This is my life, and I am the one who faces the daily hardships, the daily bad news, the daily needs to hold the will to survive.
Sometimes... sometimes when I go to sleep I ask that it turns out it is a movie.
Tragedies are entertainment..... until it's your own life and not fiction.
It's always hard to write these posts. The ones not about ordinary life, or the attempt at. No, nor is this a "oh Lords of Kobol he's dying!" one either.
It's one about the smallest, simplest things.
Last night Wash wanted to make himself some kind of late night snack. I thought the microwave was involved. It was instead the toaster-oven.
He was downstairs, so I - I- made the assumption he was watching the kitchen or his food.
About 10 ish mins later I'm getting a bit thirsty and as I stand up and walk towards the stairs leading down I smell it- SMOKE.
At the stairs, I can see a cloudy haze and I start shouting his name. (smoke detector did not activate)
He was sitting on the downstairs couch, 12 feet away from a smoke filled kitchen watching TV.
Didn't notice the smoke.
Didn't notice the smell.
Didn't notice anything but the TV.
Our kitchen is fine- not sure about the TO.
However, my security again has been lost. Now I cannot even feel comfortable leaving him alone for a min. I can't help but think- what if it had been worse. How far would an actual kitchen fire have to spread before he would notice and think to call/get help?
Has he regressed again? Do I need to not let him ever try and multi task again? Do I have to now say he can't use a toaster without an adult around?
His parents see him so little, they are just too far away. And honestly, I think he lies- or understates what it is like when he talks to them. His close friends, the ones who see us every few days, or once a week are more aware at how his brain now has to work, at the level he functions at. To them, he is -partially- an adult. Oh, he is still "their child", but they more or less see him as "capable" still.
Nothing earth shattering about that, it is just the truth. It just is. No more denial, no bargaining, no anger. Just acceptance of the situation.
I am so so so so sick of people that are not around him 24 hours a day trying to decide where he functions at. He has good, sometimes great days. And he has days where he will wash and hang dry my flip-flops with the clothes, or burn something down. This is what *I* live with. Not anyone else.
It just hurts me because sometimes I don't know if he is my husband or a child.
I watched my grandfather succumb to Alzheimer's and my grandmother to cancer and senility. I know how this story will end.
I'm a 26 year old former Caregiver. This is my voice to talk about my life- mostly about learning to live now. My husband was diagnosed in November 2009 with Glioblastoma Multiforme- terminal brain cancer. He was only 25 and I had literally just turned 23. He fought hard for almost 3 years before he passed away September 2012, just a month after turning 28.
This was my blog about our life.
This is still my space to find Hope.
This is now my public battle to show what life is like as a 25 year old Widow.