Entering Widowhood: The In-Betweens

This post originally written and posted at Persephonemagazine

It’s been a couple months since my last post here on my new status as a “widow.” The horrid “W” word that no one in love or marriage actually wants to think about.

In that time I’ve made a few personal steps forward, a few back, one even sideways I would say. I have had friends and mentors die in the last few weeks, friends get married, friends getting pregnant, friends having their children, and friends getting ready to graduate from college and “move on” to the next phase of their own lives.

Through it all, my constant is still defined by my husband’s death. I can see how easy it is when one is steps away from the actual death, is not closely bereaved. Life continues for most. They still have school, or a job. They have children who need them, and a living reason to get up in the morning, to eat, to take care of their own selves. That becomes harder for me.

I am a person of habit. I have lost them all. The schedule I had before my husband became sick is something I will never get back to. The schedule I had with him, is also something I am trying to accept that I will never have back.

I’ve had a good bereavement counselor from Hospice see me, and that, to a degree, has been helping my mental state. It is always nice to hear that the feeling I have, the thoughts, most of the emotions are all in the “normal” range for grief. What we’ve spoken about more of is the really arbitrary number system that American society has on “moving on.” It seems to be around six months if you are a younger widow(er) and/ r have no children and around 12 months for those who were married, say, more than five years and/or had children. While some mourners certainly can fit those numbers, I feel rather constrained to have a faceless nobody tell me to “get over it, already.” (“It” being the death of my husband.)

As a note, for me personally, and I have heard from other widow(ers) that hearing the phrase “moving on” can be disgusting and heart-wrenching for the bereaved. “Moving On” has a lot of implications, and though, for the most part, the people who say that come from a place of good or kind intentions, what is most often heard is “Well, we’ve been able to not think about/speak about [dead person] we have decided it is time for you to stop as well.”

Being a young widow, I often hear that phrase. I have tried nicely to have my family and friends stop using it, but after a few weeks of being nice, I just tell them that I can’t talk to them if they must use that phrase. Being a young widow what I’m hearing more of as time passes on is something akin to, “Well, you’re young. Well, you still have time. Well, there are still options. Well, being young, you still have your whole life ahead of you!”

These phrases are also terribly not helpful.

Being “young” is not a hard and fast rule. By pure age or cycles around the sun, yes, I am in my mid-twenties.

By life experience, I am willing to wager I am far more mature than most people in their early- to mid-twenties.

I have “time.” Time for what, exactly? My husband thought he had time, too. His brain cancer began to grow when he was 24. He was dead one month after his 28th birthday.

Time is not something I take as a given anymore. Time is not my friend, nor my enemy. Time is not to be taken for granted by myself though. Or, perhaps by “time” it is meant that I have “time” to find (another?) love? That is quite a presumptuous thought on my own feelings of love, intimacy, and personal wishes.

I have “options.” Please, dear friend, expound on that. What options specifically? As it is my life, I believe the choices are mine to make. Options for living? Options for moving? Options for a job, a career, another lover? Generic statements that do not really support anything.

“…still have your whole life ahead of you.”

That phrase, however, might be the worst of them all. That is the exact problem. I do have the rest of my life, every second I breathe or have my blood beating, to go. I am all too aware of this. I am aware with every bit of my body that can feel, and every bit of my soul that can feel, time is taking me away from the person I had wanted, expected, and pledged my life to.

I am all too aware of the days, months, years, decades even that lie ahead of me, without the person who swore the deepest oath to be there with me through it.

I have my whole life to live, missing the part of life I wanted to live for. Missing the half of me that wanted to share in living.
That kind of grief and mourning cannot be rushed.

I am thankful for the Hospice services. My local Hospice that served Wash during his illness is a non-profit and I can feel the people who work there really do care, and have a lot of experience in addressing the mourning issues. I can only imagine how much more depressed I would be without them.

For me right now I am trying to work on stopping the comparisons of my life to the friends and social circles around me, and I have to stop comparing how my life is now to what I had in mind it would be.

I had prepared as best as I could, as my husband’s death was inevitable. His was not a cancer that can be “cured.” What is almost harder is knowing I could not prepare for the actual feelings I have had since he has died. Grieving who he was, our love, who he and we were going to be. Grieving the two pregnancies that almost were, and were lost. Grieving the anniversaries that now come, but are not cause for celebration.

Towards February and March I had played around a little with taking my wedding band and engagement ring off. Sometimes just for an hour at home. Sometimes for a whole night while I slept. Once or twice I even went outside on a walk without them. Then came the first wedding I went to since my Wash had passed. It was lovely, and my happiness for the couple is genuine. However, this was a wedding that Wash knew was coming. These were his friends, his brothers. This was a uniting of love that he should have been alive for. He should have been there to make a toast, to wish them well.

I stopped taking off my rings after that. I’m not ready to stop wearing the reminder of his promise to me. I’m not ready to take off my engagement ring that was the other half to his matching engagement ring. I have decided to forego any wedding invitations for the next while. Perhaps through this year, perhaps through next spring. I don’t want to limit myself to a specific number.

It’s not just the odd isolation that comes with being a young widow. I am stuck in many “in-betweens.” I am not in school finishing any degree. I love school, and I do have a desire to return someday. The timing is not right now. I do not yet have a job that provides me income, let alone a career. I’m not yet homeless, but I have no real way of moving anywhere new, despite my desire to leave this home I once shared with my love at some point likely this year. I have days now where I rarely cry, where I am starting to have longer hours together functioning. I am thrust as well into the space behind that where I still have moments breaking down and sobbing for hours until my eyes swell shut.
I am trying to stay friendly and in contact with the many many many more female friends I have who are pregnant or had/have kids.

It is hard for me to see something I wanted, something I had (if only for a few weeks), something I lost, something I will never have again. It is hard to have and own my own emotions and history and still be happy for those I love and care about. To visit and meet the child of a close friend who was born right before my Wash passed; I’m still working on how to cope with my own pain and express joy for the happiness in the lives of the people around me I love and care for. To hold hope for the friends and family I love that they will never have to face the pain I am living.

I will direct you up a few paragraphs and please ask you don’t placate me by saying I’m still young enough to have children, or to get married again, or to adopt (as a single??) or that “things will happen in their own time.”

So, how is this 26 year old widow doing?

There is no simple answer.

There is no set time on grief, or progress, or regression.

I simply am, now in place of “we simply are.”

For now, I am in-between. I still wear my rings, but I said my “goodbye” and listed my status on Facebook as “Widowed” instead of married. I have begun to really sort through his belongings, but have not yet fully parted with everything. Though I physically feel split in twain without him, I’m able to now stand on my one leg, even if I cannot move in any direction yet.

My journey continues.

Find You

I have been trying to hold on to the good hours, moments, or even a day at a time now. I'm getting better at it, to a degree.

I made it through Hannukah, and had a really nice Shabbos this past week with my cousin cooking and singing.

As it gets closer to Christmas though, I keep thinking about the few we had together. All the ones we had imagined we would have in the future.
How much I suspected but dreaded that last year might have been his last Christmas and winter holidays with me; and how true it was.

I keep trying to remember the happy moments. How the awesome folks at ThinkGeek were to send him/us those gifts; they gave us his last Christmas.
I've been thinking about them lately, how kind they were to him, and us. My grief takes my words now sometimes, so I cannot figure out how to describe how thankful I am to them. Still.
His last one was a happy one.

I take comfort in that, though it still brings me to tears.

The house seems so much more lonely. I have been keeping the television on downstairs because just hearing a bit of extra noise makes me feel a bit better right now.

I took down the inflatable (twin) guest bed, and Leto is not happy about that. Somehow in the last few months he has outgrown the catbed I bought a bit ago for him. It is comically small compared to him even when he sleeps in the smallest ball he can. He's been sleeping on the guest bed at times over the last few weeks and I believe seems to have thought that was his new bed.
He lies down in the same spot in the room and will squeak at me.
He has been giving me a lot of comfort these past days/weeks.
He feels like a part of Wash that is still living.

The house gets emptier. Boxes to go out to be mailed to friends, or donated. Still so much more to go through. I manage so far to get through it in spurts.

It's putting me back in that state of shock I felt shortly after his passing; these holidays.
My mind hurts and numbs at the thought of waking up Christmas Eve and Christmas Day without him next to me.
No making coffee or special breakfasts. My family is suddenly so much smaller, that my mind just denies the idea of a "family" gathering without him. I keep trying, but the very act of just trying to imagine what that day will hold, what I would say, do, feel; becomes so overwhelming my brain just tells me it is not true.
I fear being around people who are happy at this time. I fear being the one to "bring them down". To be the reminder now of mortality. To have any of my true emotions come through, to still grieve, while others might be trying to celebrate. So many fears.
My brain says "Would it not be better for everyone else to just stay at home, out of sight and mind so others can have their normality?"
I do not know the answer.

I know there is something to make me smile that day; a nice surprise sent by friends. I will find out in two days.

It is a small thing, but I have a bit of Hope that after the New Year I will have the intense bereavement tide down, with less reminders of the big life events not to happen.

How has a year passed already?

How is it that it will be four months in a few weeks since he passed?

Time seems to be more bendy for me lately.

It passes fast, it creeps by, it stalls.

I've gone from living the last three years of my life in the moment, day to day; never knowing when might be his last with me. Never really being able to have any sort of long term plan; at all.
Now, I have to go back, so far back, and start again.



I am so tired.
So uncertain and scared.

I barely recall what it is like to wake up alone these days, end of December.
Mostly cold.
Full of longing.

I dislike night-time of late.

Soaring

More to come.

Once More (again) with Feeling

Things will never be back to "normal".

I won't go "back to [my] life".

I'm changed. Forever.

If not purely by my marriage and almost 4 years of living with another person.

I'm not "The Queen of Death". I'm not "Bones". [and ye gods I have hated those nicknames]

I'm me.

I'm Tashi.

I'm watching my husband die, more and more everyday.

I'm Tashi.

I'm not a wife anymore, though I've kept all my vows.

I'm a nurse, a help, a guide.

What becomes of me when he goes? I've done the statistical odds of dying at the same time as him, it's not a number in my favour.

I left college.

I left my work, my job, my contacts.

I never was smart enough to find a cure, to save him.

We never got a house, only our little rented "home" that I'm going to have to tear apart even before he dies.

I'm going to have to pack away my books, my closest companions and friends.

I'm going to have to put away things which we both love, but cause danger.

There is so much change.

I cannot see myself on the other side. I cannot see how *I* will remain with that much change.

I'm already so different. Who am I now, who will I be then? Will I have any part of my own true self left?

I've given so much away already.

Given so much of my life to him, to keep him going, breathing, smiling, loving.

Must be a bad day. My movie lineup is "Once More with Feeling", "Harold and Maude", "The Royal Tenenbaums", and if those don't work- JT's "Titus".

I'm lost.

I'm leading someone, but I'm lost. He's mostly leading me now, leading to the end. Saying goodbyes.

Soon, he'll go.

I'll be lost again.

And then, alone.

How can that ever lead to "normal".

How could I go back to what I was?

I have a few hours alone. I've cried, sobbed, and had two asthma attacks.

I'm going to go sit in the shower and probably cry more.

I try to think about the details of the next couple weeks and my brain just locks; there's so much pain it won't let me think about it. I just get headaches.

I want to clear my head and bowl.

Gentleman Caller

Wash is settled in at the Hospice Home for the next little bit. He got a nap in and told me his first meal there was a burrito and rice. He seems upbeat. I feel a lot better, but still miss him in a way that calls me back to his first few days in the hospital and when I was dragged back home to rest.

So it's just me home now, with the kitties and a 5 gallon bottle of water mis-delivered to me today.

I lived alone from 17-22. Never had a roommate as an adult. Wash was the first person I lived with outside my family. It feels odd, and I can remember so many details from that time, when it was just me (and then Aelphie).

I'm also just having it sink in that it can be about ME for right now. There are others to worry and care for Wash. To help him. To calm him. To make him happy, right now. The now can be about me, for the first time in far far too long as a human.

I'm going to pick some clothes tomorrow, new clothes and not from a donation store.

I have no obligations for Sunday, for the first time in as long as I can recall. Years.

I will wake for me; not for or because of someone else. (Unless the kitties get REAL hungry and loud!)

I can have silence if I want.

My fridge has no meat in it for the first time in a long long long time. I'm beyond happy.

There's a part of me that misses him and thinks of him every second, what he might be doing, thinking, needing- if he is missing me too?

I know rationally he will be fine, and he can contact me if something is amiss.

With time and distractions I think that part will quiet down on it's own, not with my work.

I will have time for me, where it is ok and safe to be "selfish". At least until Monday.

It's been 7 hours since I've seen or touched him. I need to sleep, to relax, to calm down, to emote.

I have my family, friends, and kitties to help.

"Everything will work out in the end; if it has not worked out, it's not the End." - Best Marigold Hotel

So close

Here's to hoping it's not broken!

Wash tripped/ lost his balance and knocked his foot against one of our floor fans.

He did not think it was hurt too bad when he went to bed last night, but this morning it is purple and very very swollen and so far even with meds, still painful.

I called Hospice and am following their nurses' advice for him, but depending on the next few hours, he might have to go down to the ER for an X-Ray to confirm if it is or is not broken.

God-damned Cancer.

It would be a very small thing to a healthy person, but ultimately, Wash is not "healthy". So, we will wait, be in contact with Hospice, and just hope very hard he sprained it not broke bones.

Mini-reflections

We had a super long day yesterday; about 4 different people (Hospice) came by during the day! But, Wash and I both had a good chance to talk about some issues, and get some tools to really help his life (and mine by extension).

So though he did sleep in until almost 10am today (stress, physical movement, and emotional processing all drain Wash) and was a bit physically slow to start, Wash seems mentally and emotionally "better" today than he was in the past couple days.

He's doing some thinking and my hope is he is realizing that he has a LOT of help right now, and he does not have to feel so "alone".

I had a couple good moments as well.

My Social Worker, Dave*, shared a little of his background with me over the past few days and it is - it feels like I have a solid foundation now, I have more confidence in certain parts of my life and needs, and I feel stronger to even ASK for help now. We spent a little while talking and reminiscing and I had such a nice moment when we both realized that individually people from our lives had asked us the exact same questions and we gave almost verbatim answers.

Mark over at Trouble Blogging; http://troubleblogging.blogspot.com/ I think would appreciate it as well. Certain things married/partners understand. Certain things you can't even imagine until you become a Caregiver to the person you love and were intending to spend a long life with. [This blog is GLBT*Q friendly. I wish every consenting adult who wanted to pledge their life to another consenting adult could, legally. I don't care if the term is "partner" or "husband" or "wife" or "lover". They are the person you love, care for and about, and want to spend your life with. That is enough for me. A Government refusing to recognize your status as the partner does not negate the loss any. /Soapbox]

I also wanted to take a moment to remind myself to thank and remember how awesome our friend Andy** has been through this.

He has his own shit in life to deal with, and his own grief.

But, he has been such a steadfast and loyal friend and I could not do it without him. In the past few months, half year or so he has been trying very hard to make sure he comes over at least once a week (and in the past month or so he tries to come over several times) to spend time with Wash. Sometimes he takes him out to do "guy stuff", sometimes he just "sits" for Wash so I can get away for an hour, and a lot of time he does what almost no one else does; he acts like a frakking normal friend to us both. He doesn't care how sick Wash is when he is over, he simply understands. He talks to Wash, plays with him, laughs, and makes stupid jokes. He helps Wash to forget he is a "dying" guy and instead, he's just "Wash", Dave's friend.

I want to write down how much it means to me to see Wash still have that last little bit of "normal". To have a friend who wants to see him to hang out, not just "check in".

I know not every one of his local friends can do this. The great friends we have close by we tend to see weekly, and even that cheers up Wash.

But, Andy? He's special. I will be forever grateful for just how well he has treated my husband. For how GOOD of a friend he has been, and I hope he will be.

For every asshole I meet who says something about Wash "deserving" this cancer, or that it is "Gods' Will" for him to be this sick and dying, I have awesome friends like Andy and others who prove that there ARE good, kind, and caring human friends out there.

No drama today, just a day to rest and smile.

*Dave is not his real name

**Andy is not his real name

School-Daze

To me, if a person reads a truth, a verifiable truth, and takes personal umbridge; that person either has a valid reason for being angry; or they feel guilty for empathizing with the painful portion of the truth.

But, I'm weird.

I'm writing this post as a letter; I won't use names to avoid further mmmm, pain, but I will share the story.

Dear MFW,

I think I would be crazy and unable to care for Wash if it was not for the humanity of Hospice Care. 1 & 2 are driving him sad and crazy all at the same time. I am seeing my husband in so much pain, and it hurts me as his caregiver and his wife to see that. I don't want to see someone I love in pain. Emotional or physical.

Rationally I can understand that shit happens. Things fall apart. Shit happens at a really super bad time, and then like dominoes, the rest fall too. I get that, I do. Truly.

Wash doesn't. He sees hurt and he cannot see the reason behind it. He cannot cognate like that anymore.

I know you are right when you say that they are making his death about them. It sucks and it is painful to say but it seems to be the truth. Denial is painful for those around.

Hospice has been so helpful though. As hard as it was to make the decision to call them in, I think it was one of the best things I could do for Wash. He is able to speak to others to gain emotional and physical support. And relief. He can talk about 1 &2 without feeling guilty about even admitting he has problems with them. He can speak about the pain they cause, and hear from a professional that perhaps 1 &2 cause him pain because they cannot face the pain the truth would bring to them. As hard as it is to understand, it is easier to hurt Wash than it is to face the painful truth themselves.

We are taking your advice and trying to enjoy this week instead. We are trying to focus on his happy and high level of Quality of Life and giving him the best life possible while he can still enjoy it. While he still knows who he is and who others are that love him.

I do not know how long it will take him to get passed this. I hope soon. It's hard to move past something you don't understand, and with brain cancer the real truth is he just does not understand everything anymore. Sometimes I fear we are too far passed when his "best" time would have been. The longer the wait the worse he does get and the more he does not understand change.

I feel more hopeful not that I can change this, or cause someone else to move past denial, but I feel hope that I have support; Hospice and a few friends have stepped up, some family too, to really make me feel like even on days I "can't" do this, I can. And I will. I feel more hopeful for myself as an individual and human coming out alive after this, after he goes.

I love you, and I could not do this much without you. Without knowing someone is hearing our story, our pain, our small triumphs.

Things will change, he will degrade, but I feel- today at least- that maybe I don't have to die with him. Maybe it will be ok for me to say "Good-bye" and not "Wait up".

I guess I have to fight to live to see.

Pinata

Well, we have internet and cable back on at home now, hurrah! Wash has entertainment again- honestly I don't understand it but he says he's tired of watching "Hot Fuzz" and "The Big Lebowski" with me this week. I put on a new commentary each time! (Thank you for the movies on Blu-Ray, for both of us they are a nice transportation away from real life)

Wash has had about 4 new meds added this week; I've been spending a lot more time watching him and dealing with the short term side effects. I've wanted to write and it's frustrating that my own personal time has shrunk back to none this week. Wash just needs so much care and attention right now, and we (us and our SW) still have not heard back from the insurance about Wash's ALTECS care. (Who pay/cover respite care and such so I can do the things that need to be done outside of the house etc) It's frustrating.

The good (ish) news is that being treated like this, ignored on a human level, it fills me. It stokes a fiery place in my heart that fills for Justice and Righteousness. It makes me feel like there might be a purpose for me in the world after all; I don't think I am ever going to go back to finish my degree in Forensic Anthropology; Oesteology. Every skull is my husbands'. Every face I have to glue back together is his. It's fucked with me too much.

I don't think medicine is my thing. Taking care of my husband is different; it's necessary. I have never wanted to work with/on living patients, I still don't. I admire like hell the people who do- so far all but one person on my husband's team in the last two plus years has been a godssend. They have been kind, concerned, caring, and dedicated. His nurses, his technicians, his pharmacy group, his doctors- from his Primary to his Oncologist. They show over and over how he is a person, not a disease. If you are involved in the medical field, we might not always say it, but for everything you do for us patients, Thank You.

For me, I feel like I am becoming more of an - activist. Someone who speaks for those who cannot. Someone who works to change public opinion and policy. Someone who can work inside and with the law to change it if needed.

I can try to be a Poverty Interrupter.

A Healthcare Activist.

A spokeswoman for Human Rights.

I'm feeling more Hope for myself when his end comes. I'm starting to be able to be in a place mentally to allow myself to think about the real future; the one without him, where I am still alive. The one where I'm a widow, but I'm living. It's hard and so gorram painful to think, but for the first time since we were told in 2009 he was dying, I can think about what might happen to me after he does.

I want to be the change. I want to help make sure no one else so young like us has to face this. I want to move the country away from having to have thoughts like, "Pay for Food or Medicine?"

My garden continues to come along well. The flowers have all settled in since transplant and the bulbs have almost all come up too. The scent is so lovely. The peas and beans continue to grow by inches every day and I'm harvesting a cherry tomato or three about twice a week. The garlic grows, the rosemary thrives, and the carrots are coming in too.

I decided to treat myself and instead of putting a few dollars away for something I need (I do that all the time. Too much really, but I always put Wash ahead now) that I would grab what I spotted on clearance at Target and got some solar powered string lights for the backyard. We have 12 solar stake lights around the back and garden currently, but nothing to give depth to the fence/border of the back. I'm honestly quite excited and happy with it- the design is pretty and I like making the back into a real happy and comfortable space for us to spend time in. The weather will not hold out more than maybe 2, 3 more months so I have to make the most.

I will lastly just relate our story of being good humans and neighbours; we wanted to go for a walk to the post office yesterday and discovered left on the sidewalk by our yard/Church parking lot was a baggie left with pills. Also a few half drunk Bud Light bottles. We called the local police - it was next to a Church and across from a house with a lot of small children living there- the pills needed to be taken or disposed properly. It only took about 15 mins to have an officer come out and he did a field test on the pills (3 different kinds, about 6 pills and one crushed one) and to everyone's shock- they were all blood pressure control pills! 3 different scripts, but all for blood pressure. How odd! Wash says he wants to write a short story about the pills or something, as it is just so... odd. I guess in this instance someone did really lose their pills!

The officer took them to be destroyed back at the station and we went on with our walk, less fearful for the safety of the local kids now.

Never really a "boring" day here, something always happens.

As someone directly effected by cancer of course I have thoughts on the whole Susan G Komen shitpuddle. But, my friend Lara who lost her mother to breast cancer, and has been fighting it herself has much more weight and connection to this than I. I will ask that if you want another voice on the direct negative impact SGK has caused this week by denouncing Planned Parenthood and ending funding, please hear her voice.

http://getupswinging.blogspot.com/2012/02/race-for-agenda.html

The good, bad, and great

This will be a short update as it is late, has been a LONG day and I just can't type that much, my wrist has been hurt a bit. More details and photos to come for everything.

The good; Wash's parents and brother came in for Christmas and it was a really pleasant trip. He only had one night of sleepwalking since they have been here and has managed to stay on top of his naps and meds, despite the distractions. He got to spend some good time alone with them, and we all spent some nice time as an extended family doing Christmas and Hanukkah stuff. We did some small gift exchanges and spent time catching up and even getting my backyard and garden sorted out. It was an encouraging trip and I know Wash really enjoyed the time. I know he has been missing his parents and also been really wanting to see his brother, so it was so good for everyone.

The bad; I made a mistake past Friday and went driving without proper ID. We were stopped and I was handcuffed and detained by the police for about an hour. I was only cited for one thing but they towed my car since I did not have proper documents to drive. So my car is in impound. I'll go into details later; I was sober, it was 3 blocks from home, no one was hurt, I was not arrested. I made the mistake to drive the few streets without my purse that night, though I do have very strong negative feelings about being handcuffed as I was not posing any threat or hiding my identification at all, I just did not have the "proper/acceptable" form. I'm going to court tomorrow and with luck will have my car back. This will cost me.

Speaking of cost, also part of the bad got the/Wash's MediCare statement for Sept-Nov. We owe about $550 in costs for doctor visits for him. That's the uninsured part. It's still shocking to me that these are the costs when he is not even on active chemo. These are his mostly "healthy" costs. I've been talking with my mum, I think when he goes on full time Hospice help I'll have no other choice but bankruptcy. Adult pants.

The great; So my In-Laws helped to spend a couple hours in the backyard cleaning and clearing away the crap and making it tidy again. They helped to transport some new plants I bought with my birthday money (Home Depot gift cards, my friends know me) and then I spent more than 3 hours working and planting and transplanting and moving the garden around. There are a bunch of flowers now- I even spotted a hummingbird today! I put in a few more vegetables and seeds, and bulbs, as well as bought a large mature tomato to replace my 3 year old one (destroyed). I also invested again in jasmine and gardenia bushes. The small porch has been cleared and soon we will have our little chairs out to sit and enjoy. I also put in the solar lights I got for my birthday from my mum around, and it looks amazing at night. I cannot wait until the spring.

The other good part, to which I also have photos is that we got some WONDERFUL holiday cheer from www.thinkgeek.com today. Apparently some of the "worker monkeys" read my blog here and know how HUGE geeks Wash and I are (as if his name did not give it away). (Hi friends! You guys rock!) and wanted to do something for us- they did "something" alright.

We got so many wonderful geeky things! New shirts! Chromosome towels! Adipose toys! Mad Scientist building blocks! Toys for my nephew! (he is going to LOVE his food-heavy machines and the jet plane bib, his dad is a pilot) We're going to give the Neuron Plushie to Wash's neurologist when we see her in about 2 weeks. (I bet she will laugh, she has such a sense of humor) I am keeping the Ebola plushie, I frakking admire filovirii, plus it's cute. They also gave us the Blue Sun 'travel' poster SET, which I cannot gorram wait to frame and put up. Nathan Fillion's giant head in our Serenity poster should be jealous. They also sent a treat for the furry legged ones in this house; a 'Cats Attack! Cityscape scratching post. I will have to get a video of Leto attacking it.

We love www.thinkgeek.com and have for years. I've been treating myself and my (step)dad to their toys for years. It's a great company and now I am even more so convinced. Geeks are a special breed and I truly love and admire how they (we) come together as a community. Our season would have been a lot less jolly without their intervention. I cannot even fully articulate yet just how thankful I am to them for this - the gifts and the moments it gave us. These are two happy and so thankful Browncoats.

So, more details and photos to come, but there's the last few days for us. I hope all my Dear Readers have had a safe holiday season, regardless of family, distance, or geekery.

Debate answers

We were up until 3am last night. I cried myself to sleep for the first time in a long time.

The past 24 hours have been, in a simple word, hard.

Wash took some time to really reflect on his life lately and what truly has happened in the last two years.

He has been living in a play world I have helped to create. It's partly my fault for just trying to give him the "best" and "easiest" life; though perhaps not the most honest.

We have issues, and for the most part, I just eat the pain and leave it; he's the one dying, right?

It's not fair. It's not fair to his end of life or my own. Neither one of us is happy.

We talked. For hours. Had a real nice "come to jeebus" type of conversation. Wash was able to really express himself and his fears to me for the first real time in two years. He's scared. He's scared of the pain and dying and scared about a tumor that could leave him paralyzed. He's scared about how much of his life he has already lost and what he cannot even remember of the last two years.

He tends to deflect ; that is not the tumor, just his personality. I hope he did hear me when I had the chance to explain to him just how painful his deflections onto me are.

A big part of the stress comes from his just lack of respect.

He had a chance to really reflect and this is what he came up with;

*He does not remember how sick he was

*He does not remember each day how sick he might be

*He recalls he has memory issues, but not how bad

*He did not want to believe in his brain cancer. He did not like thinking it was true he has a terminal cancer

*If he hold onto those thoughts then he does not have to confront his own mortality

*If he does not have to confront his mortality, then he's not really dying/sick

*If he's not really sick, he does not have to listen to Tashi or his doctors

*If he doesn't have to listen to Tashi or his doctors, he does not have to respect them either

*If he doesn't respect Tashi then he must be ok and not really sick or dying

(His logic progression)

We had a good chance to really explore these thoughts and how harmful to him and me they really were. I did contact Hospice yesterday for some help, along with his social worker.

It's so hard. It's hard to love someone you have to watch die. It's hard to fight for what you know and believe to be their best interest when they (sometimes) cannot even see how much they need. I want our life to be happier, even if on a smaller scale, before he dies. I want a chance to enjoy my husband, not my charge. I want to be a wife, not a caregiver.

I had at most 6 weeks when we got married before the tumor got to him. Not 6 years, or 60. I had 6 weeks. 6 weeks of love then my world turned to a hell for months before his tumor caused a visible and almost deadly grand mal.

Respect is so important to really any relationship, but for our marriage it is essential. I know what brain tumors can do, I know how they can change personalities and bring forth anger. I know that and I understand. However, Wash still insists and I do believe that he has to a degree, control. He makes choices on his own. He decides some days to be mean and disrespectful because he can, because he has no other way to act out, and he feels - or felt, that he HAD to act out. I get upset and hurt emotionally when he does those things out of purposeful disrespect to me. Some times he fucks up. Some times I do. I don't get mad or upset at that, life and crap happens.

There have been a few occasions though over the last few years where he has been fully aware of his decisions and the effects they would have on me and us, and he chose to do the thing that hurt me over being honest.

We're being sued now, and honestly it is both our faults. I did not do my diligence and check to see just what he had done when his tumor was crazy. I accepted his word on some things, accepted that he said "I can and will and have taken care of the issue."

He did not.

And I did not check up on his work.

And now I have a suit in court to deal with.

Wash does not want to go into a Hospice home. He does not want to move out of state and he does not want his parents or a stranger caring/nursing for him. He wants to stay married to me and die in this house that we have made into our home.

I am still willing to fight to make this happen for him.

Death is fucking scary. Dying at 27 years old, even more so. I cannot put myself in that place, much as I try. I cannot take his cancer away, or put it upon myself.

The most right now I can do is not be silent. Is not hide his end of life behind a window of "He's fine". It is to be respectful of his wishes, while making sure to have respect for myself. It is not to lie to him, even if it saves the pain. If we're lucky to even get one more whole year while fighting this cancer, I don't want more time between us wasted on lies.

I can be honest about what it is like to face death. What is is like to watch the brain turn on itself, the painful parts, the wonderful moments worth holding onto, and the nobility of fighting when there is no real chance to survive.

I don't want my love to die. I don't want him to have cancer, or to suffer. It's not about what I want, though, and life will sometimes make you watch the thing you want so very much to avoid.

Right now though, it's not about me. It's about being honest enough to help my husband want to live - as long as he can have.

That's where we ended up at today. The house is still needing cleaning. I have errands to run. I have papers left to write and file for insurance. Sometimes mental issues have to take precedence.

Some days are burdens, some days are gifts. Such is life for everyone. Knowing death is so close though, daily it changes my perspectives.

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.

Back to basics

Wash's med adjustment has left him more tired lately- common side effect. I've been feeling more tired lately, feeling like I have to do a lot more, worry more.

I spent a good chunk of time cleaning fish tanks this weekend. Scrubbing algae and cleaning water, protein skimming... Wash spent 6 days putting off cleaning the cat boxes and then almost 2 hours bitching before he cleaned them. The meds seem to make him a lot more whiny in the mornings. I've been switching to having him do his (like, 3) chores in the evenings.

I've also been trying hard to make sure he/we are getting out every day for some kind of a walk. I feel so lax on my exercise lately, and Wash won't get out of bed unprompted, so it all falls on me to be my own motivator and his. Hard stuff some days.

I've been trying to drive a little more lately to make sure I get over my fears/trauma of the tire blow out. I've noticed that I've become a lot more sensitive about night driving as well, which I haven't been since about '05 when we had the Baseline Rapist/Killer (s) out. I partly also wonder if my vision is getting worse and perhaps that is contributing towards my hesitation to drive. The weather is calming down some but not enough yet for Wash to really get to spend a lot of time outside.

We started to watch 'The Sopranos' this week; we're about halfway through the first season (neither of us has seen it before) and so far I find it hilarious. I imagine it might have some darker plot lines coming, but to me watching it now, there's just a level of humor at the writing I can't deny.

So far I've managed to go halfway through October without a major pinkwashing/cancer mental break. I'm happy and proud for that. I've separated off contact with a few people who I know would say some stupid shit this month and I have a core of good friends around who 'get' how the Pinkwashing makes me feel. All cancers suck, true... however it is brain cancer that is going to take my husband and I wish it would get even half the attention/awareness.

October also marks my birthday- coming up at the end of the month.

I always seem to get (extra) depressed around then. I don't think it is seasonal as I love fall and winter and spend time outside. It is just clockwork since I was about 6 or so that the 2 weeks or so before my birthday I just feel more depressed, less social, more anxious...

I just want it to be over. I am always expecting something horrid to happen, and honestly almost losing Wash on my 23rd was beyond no fun. Breaking my arm for my 8th. Having a family member forget my 16th. Being vomited on by someone on my 10th.

I don't have a real good feeling relationship with my own birthday.

I'll be 25 this year. Young, it was how old Wash was when he was diagnosed and given less than 2 years to live. At the same time, I've lived lifetimes in as long as I have been alive, I feel this absolute divide with my youth now. Somehow it is all done and wrapped up, no more 'kid fun'. I feel robbed to a degree. This unfairness of life, which cast me so mature so very very very young has yet again found a way to toss me to the side of what society tells us is 'success'.

Some things in life change, mature, grow. Some things stay static. Both can be good or bad or even both.

I just don't know where I am anymore.

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.

Emotions

I did a video update/blog for today.