Catch-Up

I'm 'back'.
Though, I never really left. I've just not been sleeping much at all for the past almost week and I often cannot write after staying awake for four days.

I read a book series for myself. It was nice to have something I wanted to read, wanted to finish. I don't think I've had a "fun" read since Wash died. I have some books and novels to catch up on.

So, aside from the reading.

Things have been good and things have been tough.

The hard stuff first.

I have lost about a stone (14lbs) in the last two weeks. Not for really trying, or stress, but mostly due to lack of food. This is hard to be honest about, which is likely why I have not said anything, but I don't really have money to get food anymore. SNAP (either due to Arizona State frak-ups, or Federal [Congress] Frakery) has been reduced for me, and with no income, I'm trying to eat on about ~$20.00 for 7 days.
I have no grocery stores I can get to by myself or walking, and I have no funds for a bus pass, since they increased the rates back in March. I have the CVS and the Farmer's Market. Both have a small selection of foods, and both are pretty expensive compared to national brand grocery chains. I do have friends who take me to one of the stores a few miles South of where I live, maybe once or twice a month, but I'm still on a stretched budget. So, I've been averaging about one "meal" a day.
This I am sure is contributing to my tiredness.

I have a lovely friend who is also an animal lover who has been helping me to buy cat-food so the kitties are taken care of. I have a lovely reader here who sent litter as well, which we are all-ALL- very happy for. (Thank you, K.)

But, I have about $36 to my name, and $4 in SNAP food benefits to last me until well into next month. Which is hard. It is hard to be 26 years old and having to ask my mother for help to buy toilet paper, and peanut butter. I have not had much of any luck with finding a short term, or part-time job. Most business close or get smaller for the summer when all the students and SnowBirds leave, and the few who remain, or who move here in the summer before school starts have seemed to taken all the open jobs around here.
I am worried. I have no idea honestly how I am going to pay rent, electricity (it's in the 100sF now. Would you like to live in the sun with no A/C?) or my internet; which is mandatory for me now, as I'm doing some things to get ready for college this summer.

Wash had no life insurance. Neither of us had even health insurance when he was sick!
Side note: our appeal date for AHCCCS was originally on Oct 28th, 2009. I had applied in August when Wash was ill and I knew he needed a real doctor, not a undergrad student at the college health center, and we were denied. I often try not to think how many more weeks or months I might have had with him if the tumor was removed 3 months sooner than it was.
No funds, no insurance, no savings. The bit we had went to our wedding in March of that year; and the whole thing was done for under $1000. Once Wash was not working, not able to work, from the tumor none of us knew was there, my savings were gone to pay rent and food. His parents, before they blamed me for his illness -and death- did help us that summer. I remember Wash crying so much. I remember being told by his father that "this was the true Wash, you're seeing his real personality coming out. He is lazy and unmotivated." Which, really, was entirely untrue- however it was correct in that those were the symptoms of his tumor manifesting.
I try not to be angry about that summer. None of us knew what was really going on inside his brain. The tumor growing, killing healthy cells, pushing his brain- swelling inside his skull. He was not able to be honest with me, or his family, or his friends, or the few campus doctors he did see. None of us put it together until he was in the hospital on Oct 26th.
I try not to think about how it could have been different.
I often fail, but I try.

This May marks 3 years of me being "unemployed"- as my State and the Federal government do not recognize being a fulltime caregiver for your spouse as "employed". Though it should be. Caregivers at home help keep the patient's Quality of Life high, and help keep Medical care costs down by not needing a bed in a care-giving facility. Those of us doing it for the people we love though, we are not paid or compensated. Even though most often in a situation where one partner/spouse is needing the care and the other doing it; neither of them often has income, or enough, coming in. Try living as a terminally ill person with special dietary needs, medication costs, rent, and electricity on ~$800/month. Or less. Often less.
It's hard. It is hard to say to someone who is dying, "No you can't, we cannot afford it."

I've been doing a lot of processing of my feelings, obviously. Which lately has included a lot of tears. I'm not fighting it, and it hurts, but the pain seems to dull more quickly when I don't fight it.

Moving more to the good, now.

I got some sleep last night/this morning. [5am-2pm]
As I was lying down last night, I smelled him. On our-my- pillow, and his bear Hoban. That was a great comfort to me. Maybe that helped. Or, maybe I just hit my wall of not sleeping more than 3 hours since last Thursday.

He would have been so happy and excited for me.
I got in to my college programme. I'm doing fundraising to cover the costs; like the down-payment for classes, and uniforms, and airfare. I am also applying like mad to every scholarship that I can. I am working hard on this, because this is for me. I have not done anything for myself since Wash was ill, even before.
I took a holiday in late spring of 2008. I married Wash in early 2009. That is really the only things that come to mind over the last 5 years that were in any way "for myself".
I want this. I want to go back to school, at least, in this small way. It is a summer term, so just under 2 months long, and not as much pressure as re-enrolling for a whole school year, or even a normal term. That might still be too much for me right now.
But this? This is perfect.
It is an all women's college. Dorm life. A town about the size of where I live, in Tempe. Lots of gardens. Outside classes. Peaceful parks. More so, it is in Israel and is history I can study and touch. This is a chance for me. This is a chance for me to find something inside myself. Some passion.
When I was about 8 years old, I read a novel (the third in a long, and still continuing series) that moved me and impressed on me so much I still re-read it yearly. A strong young heroine, adventures, dangers, and in this book- a trip to Israel. Archaeological sites and digs, and reading in original Hebrew and Aramaic words written by human hand thousands of years ago.
To me, that was the epitome of excitement. A small fire inside me started when I read that book, and I knew in my lifetime I wanted to travel there. I wanted to have a chance to walk in the Old City. I wanted to read those words written so so so long ago. I wanted to smell the air; so different I imagine from anywhere else I've been.
I have that chance now. More. I have a chance to learn for myself. To seek out the direction to continue on.

There is no "moving forward" or "moving on" from my husband's death. It will always be with me, and a part of me. But, I have been able over the last few months to heal enough to begin to see the world with me in it instead of mourning the loss of the we. 
This is a large and important step, and I am recognizing that.
My therapy team is also quite encouraging in this, as are my family and all my friends.
I like to think they are happy to see my desire to do something-anything- again. In a way, I am too.
There is still a part of me that wants to just sit in my closet, hold his TARDIS urn, and cry. Forever.

I'm growing to see that not only is that closer to impossible, it gives me no quality of life. That, he would mind.
School, though? Things being different, him being alive, both of us working, he would take me out to celebrate and encourage me every step of the way on this. He is the cheerleader inside my head. Much cuter than Teri/Ferrell though.

Things going well and I can raise the funds, get scholarships, and take care of all the other details? I'll be in Safed by the end of June and back home sometime in August.

I am also working on a few projects to hopefully get some of the novellas/short stories Wash wrote and illustrated published. The cancer could not take his creative imagination from him, and perhaps knowing that his works, his passions, were "alive" in a way, being read, being appreciated, will help me. Knowing that he is not forgotten.

That is where I am at.

My belly might be hungry, but my self has Hope to feed on again.

More To Come

Well, there are a few logistical issues to take care of, and a few scholarships to apply for, but it looks like with some help and luck, I'll be in Israel this summer for a college programme.
I am aiming for 6-8 credit hours to earn, and as my school is in the North part of the country, I also hope to be able to visit Jerusalem while I am there.

There is a lot I need to get done, and a lot of support I will need to get through this, but I am excited to be back in a learning environment. Learning and knowledge make me happy.

Thank you Friends, for all your support, prayers, wishes.
I'll have more information in a few days to share.

Here it goes...

Tomorrow I have a video interview (my first!) at 10am.

With a college admissions coordinator in Israel.
I hopefully will find out if I have been accepted into a summer college programme.

Before I go off on premature plans, or more information, I will say this.


I am scared.
Terrified.
Anxious.
Filled with trepidation.

I am also hopeful.
Hopeful I have friends near and far who can help me with logistics.
Hopeful I might get in.
Hopeful I might begin to find the "me" that was given to "we" when I married.
Hopeful this might be a good change for who I am and have been.
Hopeful this might let me start walking again. Looking forward.
Hopeful I may again remember passions, and desire for learning.
Hopeful I could survive (short term) without my cats, my only Companions left.

Hopeful I can adapt to the potential change, the new-ness, the shuffle of my routine.

Hopeful I might make new friends.
Hopeful I may even meet another (young) widow.

Please keep me in your thoughts and prayers tomorrow morning, if you would.

I am hopeful if everything can come together, this might be what I truly need to find life, and begin to see where my own will go.

I have not been able to think about my future for 4 years. It is daunting, but I am growing to see it can empower me.

Down the Rabbit Hole I Go!

Like a rainbow

I am not touching the topic of Mother's day with a 40' pole right now. Moving on.


This week, with a lot of encouragement and support from my friends, local community, and most family, I decided to apply for a summer college programme abroad. I would be gone between 4-6 weeks, depending on how I can set things up before I would leave.
I am hoping to find out soon if I was accepted (it's a very selective Women's College) and if I can qualify for some scholarships to help out. I would still need to raise funds to go, but...

This is the first time since Wash died, and certainly the first time in perhaps the last 4 or so years I have felt like I desire to go back to a college environment and learn. Since Wash was sick with brain cancer, I have felt zero desire or goals to go back working forensics. To go back to bones, and skulls- of which all morph into his- to go back to Death, really.
No. I've spent too much of my life already in and around Death.
This is a chance at something new.
This is a chance for me to do some self-exploration.
To see what knowledge still excites me, what stokes my personal fire.

I can earn credits that can transfer back to the US. I can be in a (temporary) new place. I can clear my head, focus my mind, distract the pain in my heart.

Now, I'd have to be accepted first. I have to make sure my house here is taken care of, either house/cat sitting or subletting. It is one thing to go away for a month, it is a negative thing for me to come back and not have the home I have been living in with my husband since 2008. This much I have already talked to my Hospice doctor about. Now, there is a hope that perhaps when I come back I will be stronger personally to really start to not just sort through, but figure out where Wash's things and stuff will go. I have about a dozen packages I still need to send to his friends of his things. But, I am still letting Future Tashi deal with that, as right now I see a mountain of his clothes that will never be put back on his body. Fabric with a faint scent of him. Fraternity and Drama/Theatre shirts. Dress clothing.

His custom ties. Those I know what he wanted done with, how to get them to his friends, but it does not make it hurt less to do.


I had a moment last week. I was having a conversation (in my head) with someone, and my narrative said- "When I was married..." not "...I am married."
I think this was the first time my brain has phrased it for me. My world stopped last year, but things move. The Earth still spins, I still age, my cells grow and die, plants flower and die, and lives just move.

I had a Phoenix ComicCon brochure come to my house. Addressed to Wash, of course.
It was like a punch to my chest, all air gone out of me in a second.
It really sank in, Wash will never see another 'Con. I will never get to dress up or Cosplay with him again.
I am the one left. I carry the burden. I carry his voice, his desires, but in a way he will never see.
Too much emotion overwhelms my system and I just emotionally shut down. It hurts less that way.


Back to topic. I need to make sure my cats will be loved after while I am away (if I am accepted.). Leto really has not gone more than a day or two without human contact his whole life. He is a Comfort Cat, and he wants to be where he can get pets, attention, and love from other humans. Aelphie I am also worried about. She really only ever bonded with myself, Wash (after some years), and a great friend from college - and his sweet cat. I don't know if leaving her at my house, with me gone, is good for her, or if it would be worse to move her somewhere for a month where she can have more attention and less Leto/kitten escapades.
I worry about the TARDIS urn. I worry about leaving it, I worry about moving it. Anxieties and worry.
The cats are the closest thing to children I will ever have. Leto is the only living connection left to Wash- that is not me. (in my house)

I worry if I can raise the funds to go, to cover airfare and the costs for my home as well. It will be more than 7 more years before I will be able to get a loan, or not need a co-signer for anything. That puts me in an odd place for a 26 year old. Even harder trying to get really any job to get me out of the house, earning, paying bills. Part of me hopes this trip might help with that though, making new contacts and friends, or even just being able to say that I've done something in 4 years besides caregive (unpaid, thanks Arizona!) for my husband.

This is a chance to do something for Tashi. Not 'Wash and Tashi', not in his memory or honour, but for myself. Who I am, without him.


Wash always supported learning. We had a plan. He was willing to work to pay for me to finish my schooling once he was graduated and had done his Taliesin internship. I was willing to work and wait for him to finish. There was a plan, we both supported. We had even planned that if we had a child while I was in Grad School he wanted to be the Work From Home Dad. He wanted me to focus on school, and my desires. This I know. He would have supported me in this. He would be happy I have at the least, applied.



This feeling? It is not Depression. It is not Grief. It is like a horrid hybrid monster of the worst of both of them. It sneaks up in the quiet and calm before sleep. It strikes at a song, a moment, a memory.
It fills the nose with smells that trigger memories of happy or sad moments. There is no control. There is no bargaining to stop. It does not listen to pleas or rationality. It rears up, an angry wild stallion. It runs deep inside, pounding hoof beats to match broken heart-beats. It is tears at a kitchen sink that do not come from onions. It is a weight so heavy the body literally drops. It forms a Compassion, a desire to not wish it on any other human; though most every single human will experience it. It is the pain and darkness of a mile underwater, a place sunlight does not- cannot penetrate. It is the creeping darkness that whispers over and over and over- the worst broken record- "Is there really any Hope left?"

This is the feeling I have and fight every second, hour, day. I do not think English has a word comparable.
I wonder who else is aware of this? Who else knows this feeling? Who else knows this is what I am living with?

There is a lot for me to ponder lately. I have been trying to focus on the positive ponderings, less on the negative ones. It is a battle. Every day. For me, time does not ease up. Time allows no real respite inside my head.

That is where I have been, Dear Readers. That is where I am.

Afterwards

There is always love in the world.
Even if it does not know you by name.
Even if it does not come with your image.
Even if it travels from around the globe, or across the city.
Love comes from family. Friends. Partners. Soulmates.
Children can love with freedom and enthusiasm that sometimes fades as we age.
There is love for the newly born, and those departed.
There is love for the past, and for the future.

There is love in the smallest of kind acts, and love spread across millions or billions.
There is love from religion, and love from science, and atheism.

It can be hard to see the love around, sometimes. Often when we cannot hear it given directly to us.
But it exists. As surely as there is human capacity to think, reason; there is also the deepest capacity to love.

01.20.09

I've been awake for about an hour.
It just hit me.

The last time I saw this, the last Presidential Swearing-in, Wash was still alive. We were watching history being made together, and how excited and happy we would be to tell our children about getting to witness that day.
We were about 6 weeks away from getting married.
Wash was in school, and had a "brings in money" job, and a better one lined up after we got married and came back to AZ.
I was still working full-time. I saw myself being able to go back to school to finish my own degree in a year or two from that point.

Neither one of us thought in any way, at all, that he or me would not be there just 4 years later.

We thought that it was the start of a new wave of Hope and Change, but it turned.

4 years ago this day, we thought anything was possible.
Now, it's just me.

One "term".

I'll most likely be crying a lot today.

Not worth it

I so do hate the days that take away my loving husband and leave me with a angry, selfish man who does not even see his wife as a human being.

I know it is 90% cancer/tumor/medicine shit, and maybe 10% his old personality, but I hate it all the same.

I get so sad and frustrated trying to anticipate what will set off his ADD like symptoms; he literally can not multi-task. I as a person, as a wife, even as a caregiver always lose out. I get pushed back to second place or further and forgotten.

I lament and I mourn I had perhaps 4 maybe 6 weeks as a newlywed with my husband before the tumor took over. Now I've had two years longer than 98% of his type of brain cancer patients have had with their spouses; I think of that every day.

I don't feel respected, and I don't feel loved. Rationally, I am aware, it is his brain.

But I'm not an android. Even with Asperger's I feel. I hurt.

I wish there was some kind of "happy" we could both enjoy. There does not seem to be much of it lately.

If this is his last Christmas (I can always hope it is not, but the numbers are killjoys), I want it to be a good one, a happy one. I want him to have things to make him smile, to feel joy for. Something to encourage him to just keep living.

At the same time, for me, it hurts so much to know this might be his last Christmas, he can and will treat me however, and I have to just deal with it somehow.

I wonder if it's too much to ask for both of us to be happy.

Laser Cat

One day down, just have to make it through today.

Wash did not get all his testing done yesterday. We arrived thankfully early for his appointment (paperwork! ) and the first problem arose; no record of his appointment.

Seriously?

They knew who he was, one gal even remembered seeing an email about him.

So we waited, and lo and behold, the very time we were supposed to have an appointment the doctor was free!

So we had a long visit, the doctor had already had a conference with Wash's neurologist about him and we were asked various questions and Wash had a few physical tests.

The specialist does not think he has epilepsy per se, but was concerned about some small seizure activity in his damaged frontal lobe- it seems to fit what Wash has been feeling.

So, tomorrow they want to admit Wash to the hospital for more tests. They want to take him and try to induce seizures in him. Now, rationally I understand the need for this test, and the information it will provide. Also, he will be in the hospital, so if he does have seizures, he is in the "best place" for it.

BUT, even knowing that, it is scary as hell for me to know they want to put him through that. I know he is scared and I am too. No one wants a seizure, and to have one if not more induced... not a pleasant thought.

Thankfully I am feeling better this week than I was last. I have more tests of my own this week, but I am a little more hopeful right now that I won't have to have my own surgery right now.

I have to rise above my own feelings and be strong for him for this.

Sons

When every day you wake and are just thankful for nothing more than that, when you find thanks in your husband remembering your name, when you are thankful for just one more day with no bills calling, when you are thankful for what you have had, not what has been lost...

My thanks does not need to come at the memory of a group of indigenous deaths.

Turkey day did not go to plan. We were supposed to head up North to a friends' home but I cocked things up. My doctor did not give me good news this week and I might have to have a small surgery soon if things do not begin to get better with myself. So, this boiled over Wednesday night and I got very very very ill. Could not drive, barely able to come out of the bathroom. I'm still not better today and we're both hoping to see relatives today.

I'm trying to not be scared, or mad, or upset, but it's not easy. I do not want another emergency type of surgery like my gallbladder which melted inside me. I'm trying to stay ahead of my body, but it really likes to fuck with me.

Mostly I'm just scared.

I'm scared because we have so many bills right now. Wash has had extra doctor visits with his Neurologist ($760 per visit) and after a week with insurance fuckery he's finally going in to see the Epilepsy specialist and they won't even tell me how much out of pocket that will be. And then there's my own medical bills for my issues, co-pays, medicine. And I worry, if I do have to have surgery again who will look after Wash? Or even me?

I've just been depressed. It seems like every time we manage to find something with Hope, some little thing to keep us both going, both wanting to live, Life or Cancer finds a way to rip it from us.

Having terminal cancer in your mid twenties changes everything. It's been two years. Two years of living, and not. Two years of heart beats, tears, medication, poison, laughs, hugs. And two years of a "not life". Two years with no paying work, with no schooling, with no real hope for any real tangible future.

What kind of a life is it that I seem to be fucking up so badly?

I miss having feelings. More than just "what else?". More than just a resigned acceptance that my heart beats regardless of my desires.

Two years standing still watching the world, my friends, my future pass by.

It's all just going through the motions. Playing a part.

It feels like a long night swim where the land moves away, the light fades until there are just stars. Just the water and stars. And while the stars dazzle, the water just pulls, and pulls, and pulls, before long the stars are not twinkling so bright, and the water begins to take away the air, just wet, and enveloping, and cold- never noticed before how cold it gets, and then the stars blink out. There is just a feeling of coldness and the urge to fight, where it should be- all used up. The water welcomes and hugs and draws down, and the stars blink out to black.

The honest truth is, some days I see myself sadly and lifelessly going on after Wash dies. And other times I hope with every last part of my being I'll go an hour after he does.

I've had two years of playing "Groundhog Day" with my husband. For that I am beyond a way to describe my thanks. That's two years more than any of us thought when he was in the hospital with a tumor the side of a newborn's head crushing his brain. Two more years of hugs, and kisses, and "I love you", and every little wonderful moment we were allowed to have, than others with his cancer. I know that, and I am thankful. It could be worse, sometimes I am not sure how, but I know it can be.

I just wonder, does it ever get better? Does the pain ever really let up, or is it just the mental scar tissue caused by years of time and distance?

I feel like a fool for trying. I feel like a fool for believing that things could change. I need Hope to keep going, to keep myself living, and I feel like a gorram fool every time for having Hope.

Baking chocolate

I'm doing better today. Every day is a bit of a struggle in some way- but I suppose that is true for anyone.

I have not been able to get any reading done for myself. Nor have we watched the most recent Dr Who episode. The part of me that enjoys those things, reading and sci-fi- all the things as it were- feels numb still.

I feel overall like living one day at a time is easier, but trying to really feel my old personality is hard. To face what I have to I have to dissociate. It drains away the parts of me that are- me. My 'colour'. My happiness.

I can be rational this way. I can be productive and functional. But I feel like a machine wearing skin, so much less than human.

Right about now we could use a good fundraiser. It's absolutely horrid and inhumane, but I often helplessly find myself wondering how much longer I can afford to care for Wash. When he's at his last month/weeks Hospice will kick in and insurance covers that. As long as he is "stable" it is all out of pocket for me, and that's not cheap. Well, his medication runs about $1000/month now as opposed to when he was on chemo and his meds were $11,000.00-23,000.00/ month.

Wash gets $740.00 a month from social security and then we subtract out $115.25/month for his insurance premiums which are deducted automatically. We also get $280.00/ food stamp (no cash benefits) for each month. This is not a "supplement" for us, this is my food budget. It is up to me to fill the gap each month for rent, electricity, gas, car insurance, pet food/supplies, entertainment, co-pays, clothes, sundries- Wash has special needs now after brain surgeries and a year of chemotherapy. It's a frakking big gap and it exists each month. Neither of us have credit cards.

Sigh.

So, it's the rational practical part of me that each day, sometime each week wonders how much longer I can really do this. Emotionally I am honestly not sure which is more detrimental to me; taking care of Wash or worrying how I will be able to afford to take care of Wash.

I am happier though, that as opposed to a year ago I'd like to think that I have grown enough now to be able to ask for help with more ease.

Any of our readers want to help raise some funds?

I had a chance last night to watch "The Blind Side". I can see why it won so many awards. Wash took the time while I watched my "Sandy chick-flick" to catch up with some friends in town. He got some good conversation in and socialization both of which he needs. Then we watched "Trekkies 2" together and laughed our butts off. After attending two cons with Wash this year I can say I have a much greater appreciation for the documentary now. I will say- I was a bit sad they did not follow up on the family that dresses in Trek uniform/works as a dental group. They were so interesting on the first "Trekkies" movie and I would have loved to see how the family has grown/changed in the decade since the first film. Aside from that, it was quite enjoyable and I know that Wash appreciated watching it with me- he is certainly the bigger Trek fan among us.

I have had to stay away from the news lately. Watching so many people -many of whom have so much money and power that 'worry' is a foreign language to them- speak of people like my husband as disposable, as trash, as human beings who should just die and unburden society from the expense of their birth and circumstances.... it makes me sick and mad. Mostly, it makes me angry, which is really more akin to dangerous. I tend to be able to remember a grudge for life, and I have made a few since Wash got ill.

My reaction tends to be to want to retaliate in the smartest way possible. Sometimes that means waiting. Sometimes that means making myself better, smarter, stronger to challenge what threatens me.

I turn 25 this year. In my state that is the minimum age to run for city counsel or Governor. Right now my focus is Wash and will be until he dies, hopefully the way he wants, when he wants.

But the talk of turning human beings into numbers... the stripping of rights from women and the LGBTQ community... the unions collapsing... social security- literally the namesake of our social responsibility for care of the elder, ill, infirm, widowed- being robbed ... and a war longer than almost any other in our 200+ year history taking money, time, and the lives of our citizens and those of civilians overseas...

Frak.

I want my country and my state to stop tearing every person and thing DOWN and work on building UP for ALL.

That got offsides, didn't it?

I guess being this poor, this sick, this desperate has given me an insight at a young age that some politicians 60 years my elder could not empathize with.

I want to hope that things will improve, will get better.

For all.