Apartment

Yo diary. Journal. Blog. Poop.

So there were people who were interested in the way we were living a long while back, I haven't had the time to properly write a post about it or even really properly tell/show anyone. We've been living here for a little under half a year, me and Nono. Emi moved in a little later, about 3 months ago or so. 

But yeah, there's not much to say about exactly how we live. I mean, Emi is currently looking for a job so she can help out more in the future and we're saving for Nono's surgery, slowly but surely we'll get there. The current apartment is so expensive, however, that I couldn't have foreseen the backlash. It's hard to put any money away for saving when the expenses are crazy like this. All that has gotten better though, but there were a few times where our friends had to pop in and help out with a bit of food, which I'm grateful for.

It was around the time we moved in here that I started saving money by skipping breakfast and lunch, though I'd get some fruits (and FREE CANDY AT THE MOJANG OFFICE WOOO!) to fill my tummy with and only ate a dinner a day. I still do, but not really because I have to currently, because our economy is a lot better now! But because my body has gotten so used to it to the point where I don't feel hungry anymore at breakfast and lunch. Probably not good in the long run, so I'll need to do something about it. Speaking of which, my body seems to have gotten used to staying awake days at a time, sometimes even while exhausted, I can't seem to fall asleep. I think I need to find a doctor to help me with that. 

Anywaaaay, enough about random stuff. I haven't slept and my head's feverish and sluggish, so I'm sorry if I start rambling randomly. Here's how we live!

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This is the living room, where me and Emi are living together! Poor girl has to sleep with me being up all night not able to sleep... Oh and those are my drums and my hidden guitar in it's case behind the sofa!

This is Nono's room! There's only one bedroom in this (expensive) apartment, but we really didn't mind. She's got some really adorable plushies by her bedside to keep her company, but unfortunately could not bring much with her from the USA. Her whole current life could fit in but a bit of luggage when she got here. We're slowly filling that up!

This is my bed, which is actually foam seat cushions when I think about it... but it's surprisingly comfy for being seat cushions, you wouldn't have known til' you tried. Also, that's the kitchen! It's small but really cozy.

That's all for now, I think! Thanks for reading, byeeeeeeee.

Recent changes in life

There are so many things I want to talk about regarding my life, including Nono and Emi's because we live together now. But life in general, my new years resolution was pretty much; Become healthier, do my job better and allow myself more time with people I care about and be there for them.

So far, so good! I used to be stressed over so many things and little by little, my worries have been untangled over winter, Christmas and New Year. There are some issues still, but I won't go into them right at the beginning of this post. I just wanted to say that I know it's hard to understand what's going on in my life right now, I've only entered short messages into twitter up until now and I wasn't always vocal about every detail or event. I had pretty much no one to talk to other than twitter for awhile and in the long run, spamming twitter really isn't the best way to do it.

For one, it's very spontaneous - so short, simple and quick that you don't really have a lot of time to think through what you're saying and how it might be interpreted and perhaps regreted.
Second - even though there are people that care and give you encouraging words and I really appreciate it, there are people who don't want to see negative spam floods and you can't really keep a deep and coherent conversation over twitter.
Third - it feeds my spasmatic way of doing things, because I have a deep-rooted habit of multitasking as a time saver. While multitasking and saving time is great and very useful, there are some moments where it's better to slow down - which is something I have a hard time doing once I build momentum. Writing a journal like this is a lot better for me and the length of what it is I want to say.

The things that weighed me down was basically that I was the root of a lot of responsibilities; keeping people healthy, finding a home so people wouldn't end up on the street, paying for bills, food - everything - while trying to run a campaign to raise money for Nono's surgery, helping out economically and physically in a lot of other directions at the same time with a long list of things, chores that needed to be done everyday (cooking, cleaning, shopping), plans that needed to be planned and remembered, helping Nono build a decent life around her in Sweden which requires a lot of my personal time as well, because we have to do everything together. Assure my overprotective parents that I'm not useless, feeling guilt over leaving a lot of friends behind in cities far away and then being unable to see any of them at all for months at a time. Feeling guilt over inability to help my parents or see them either or anyone I love, really. Missing them all at all times. Trying to keep everyone else happy when I was crying inside. Having no time to take care of myself when I couldn't sleep and had little to no rest inbetween work, chores and responsibilities, while being sick with heart syndromes, allergies and rehumatic issues. Those were but few things I thought about literally every waking hour. I needed to stay strong because a lot of the things depended on my ability to stand up, even when I wanted to break down and cry.

Some things that are worth mentioning that has changed;

- Emi cooks for us every now and then, so that's not just my chore anymore.
- Nono cleans the kitchen every now and then, so it's not just me anymore.
- Cleaning in general is everyones responsibility, even if it doesn't always work out.
- Emi and the twins helped out with food money when we were in dire need of it, and then more people tumbled in and helped out. I still pay for all the bills, travel expenses and food too, however, until she can get a job or some economical income.
- I had a hard time managing my own medical bills at some points last year.
- Nono's campaign money is now in my bank, before christmas we hadn't touched it at all, but there was a medical bill (Nono's x-ray) that needed to be paid for so I finally transfered them to my account. They're safely tucked away in a savings account and is only touched in emergencies.
- I got a bit of an economical push and we're no longer in an unmanageable situation.
- My contract with Mojang got updated- meaning I will receive help with finding a more permanent residence for the three of us, removing the constant worry of having to find a place to live in a city like Stockholm that has pretty much no vacancies unless you can push out shitload of cash on your own.
- The vacation gave me time to breathe out, I spent it with people I had wanted to see for a long long time. Not all of them, but the most important was that I got to go see the people that needed me the most. I care for them all.
- I got to see Mom who is always working so hard she's breaking her own body... being sick at all times with a little of everything, her health is poor but she keeps up a strong appearance, which makes it unable for her to receive any aid from the government. Because she's stubborn.
- My grandfather, who, if you've read my previous posts is terribly sick. My heart is broken but I'm doing my best to reach out to him before his days end.
- With a little less stress, my heart problems stopped re-appearing as frequently.

The result from these changes being;

I can relax a little bit more, even if I'm never relaxed entirely, I'm rather more used to being busy at all times. However, from this, I've learned to manage time very efficiently. Even if I'm at work for 9 hours or more everyday, spending half an hour every morning preparing for work and another half hour to get to work, then travelling home - I could still get everything done but at the expense of having no time for myself and poor health. That's changed slightly now, as I said, which is a progress in my new years resolution!

I found more moments to breathe out but since I'm not used to it, my body cries for stimulation. I channel that into creativity, my heart also missed the reward of creating things so I picked up a few hobbies I had no time for before. I feel like things are going to become even better with time, I was seriously in hell for awhile. All my waking hours - and the hours I was supposed to sleep during - I spent worrying and working and doing everything but anything for myself.

Nono's campaign is still up and running, but has been a bit neglected because I had a lot of other things to take care of. I don't say "us" or "we" because no matter how you look at it, trying to find yourself in an alien society while being sick is really hard for Nono, so I had to do what I could to be supportive in all ways possible. She's improved a lot though, her energy level is a lot higher, better nutrition here than she's had for a long long time, her mental health also a lot better, everythings improving for her and that relieves stress on her sickness as well. Hasn't had as much problem in awhile, still in a risk zone however and in need of surgery so we're slowly working our way there.

I'l ltalk about this more in another journal, for now, I need to go home. :>

Bye bye~

I wanna draw you grandpa

I'm really sorry grandpa, I can´t draw you properly yet...

I remember your old face a lot better, your new face is still you though and I wanna make it justice. I love your old face though, and I wanna paint you a portrait.

I looked at your hands and arms a lot this time, they were so thin...

I redrew you over and over and just failed.

No sleep.

Got no sleep tonight, but not feeling very sleepy.
Going to work in a moment.

Most people say: "Take care of yourself before you take care of others."
And with this I agree completely. I tell people that a lot too, but I do mean it and I truly believe that you need to be at peace with yourself for that. There´s no way you can carry the burden of other people if you can´t carry your own. But what if your burden is the burden of other people? What if your personal burden is actually the sorrow of people around you that you love and people you meet and learn to care about? What if you´re so much at peace with yourself and who you are but you´re wishing you could help improve the lives of the people around you instead? I´ve come to accept that I can´t really let things go so easily and that I´m stubborn, or at least my brain is obsessive over these things. Sometimes to the point where it bothers other people. Especially when I rant about my problems, which is actually the fact that people I care about and love have problems. I mean, in the end... Really, there´s no one that can actually help me there even though it seems like I´m asking for help. The only reason I ever used twitter as my ventilation system is because I brimmed over from the feelings of helplessness, wanting to help other people that I asked for help to help them. Seriously, completely a mess. 

I feel like this also messes up my relationship with a lot of people and also with my professionalism. I´m unable to carry out a professional face outwards or to keep work strictly professional because these troubles never leave my mind. They keep circling around. in my head, everyday, 24/7. I´m quite good at channeling my feelings and most of the time I´m rather content. It´s just when I lack sleep (aka get 0-3 hours every night for days.) or when I´m physically in pain (rheumatic problems, heart syndromes, allergies.) or a mixture of both that I brim over and get emotional. Lately, it´s been a little bit too often. I need to get to work now, so I´m cutting this short but I think I may talk a little more about my grandpa or mother or the living situation with me, Nono and Emi a little bit more in another blog post.

My grandpa and ALS

Hey blog.

I don´t really mind if no one reads this, but I feel like I need to keep some kind of journal to get my thoughts sorted. Especially the thoughts that circle around in my head, driving me nuts. I used to treat Twitter like some kind of ventilation system when I was on the brim of breaking down. To be honest, twitter is the best place to nurture misunderstandings, not having enough space to write and explain what you mean exactly. So after having been thinking about the blog for a long long time, I figured I´ve waited long enough.

In this blog post, I just wanted to talk about my grandpa on my dads side who first found out he was sick about 6 years ago and is now more rapidly progressing for the worse. A sickness that could have been slowed down with the help of specialists that he never got and something that would´ve been more bearable with an early diagnosis, to learn how to handle the later stages of the sickness with a support team.

Doctors first misdiagnosed him with Parkinson's disease so they treated him for that without any effect, afterwards they gave up on him when they couldn´t figure out the real reason. I used to be naïve and took their word for it, that it was a mystery (how it was explained to me, anyway.  Then after my last visit, it took me little to no detective work to put two and two together as I looked at his past and his current symptoms and condition to find out what he actually has and that there was actually help to be had in the earlier stages of the sickness, even though it´s currently not fully curable.

The disease is called "Amyotrophic lateral sclerosis" and ALS for short. While he is old (80+) his mind is still completely healthy (apart from depression, I figure...), his intelligence and personality is still 100% intact and his memories, all his memories are still very clear as with all his senses. But it doesn´t matter, when you´re a prisoner in your own body, unable to make yourself seen or heard.

This is the cruellest sickness I have ever known, completely unforgiving and an extremely lonely, slow death if nothing is done about it. I would have rather he could forget for awhile that he is sick than to be knowing about it everyday. I´m tearing up just writing this and I want to throw something or scream and yell for him, for his sake - just looking at his one good eye, I could see him screaming...

This sickness causes all your motor neurons to wilt away, both senders and receptors and the muscles that ´don´t get any signals for awhile will slowly degenerate in atrophy, rendering you unable to use your muscles in the long run, slowly expanding into a complete paralysis. As the sickness progresses, you lose your inability to hold your voice and to speak as well... Your body slowly becomes but a shell you´re unable to control, no longer an extension of your beautiful, precious mind but a prison instead.

Think of it like a dark cell with a view into the real world, unable to reach out to the people you love around you even though they´re right there- you´re slowly becoming alienated because they ca no longer understand you without your speech or gesticulation, slowly becoming lonelier and lonelier. And as time moves on, your children and grandchildren no longer have the ability to visit you often anymore as their lives progress as well and you can´t even pick up the phone to call them or a pen to write them. Put yourself in a situation where you are just observing the world, being kept barely alive while your mind wants to scream out and make someone notice you, to hear you, your thoughts. To discuss with you again, to have a conversation with you. To believe in you again, to believe that you are intelligent and that you´re full of feelings like any other human being and to respect you again and not look at you with sadness in their eyes as if they´ve already given up when you haven´t. When you´re in pain, doing everything in your power to stay alive and to try and communicate again.

My last visit completely tore me up and I wanted so badly to put whatever life I had on hold just to stay by his side, I hated leaving him and to go back to daily life, I hated that I had the choice to stick around if I wanted - but I knew I´d be leaving other people behind if I did. I know that he wouldn´t have wanted that for me though, but I could clearly tell that he needed someone who loves him with him.

I never knew him so well when I grew up, because I lived in another city, but I care for him all the same. He is my grandpa and I visited my grandparents every now and then still. He was always very kind to me. He loves his grandchildren and he was surrounded by them for awhile before they had to move to a less expensive apartment. If I wasn´t around, he had other grandchildren that visited him. He´d play with us and he seemed to be genuinely happy when we were there.

That was another era in his life, It´s completely different now. Even though he´s taken care of at a home for the elderly, he has no children around him, laughing and playing, just the caretakers (who I respect so deeply that every muscle in my body hurts.) and other elderly and sometimes sick people. He probably has people that do care but no one to share deep bonds with or has any truly deep affection for him.

Think of the pain when his family no longer visit him very often, grandma being too old to go there often because she needs to take a lot of buses as the home is located in the outskirts of the city... and it might be unfair and judgemental of me to say or come to this conclusion - but he seems lonelier than ever, at what may be close to the end of his days.

The only thing I can do when I´m there with him is try and talk about myself and do physical activities simple enough for his participation.

My last visit, as I said earlier tore me to pieces.

I was going to write about my negative feelings and sadness but prior to the past few sentences I managed take a break in writing this blog post as I became distracted and couldn´t think clearly. I´m happy I took the break because I´ve arrived at a more peaceful state of mind after bouncing some feelings with my friend Nono. I will still write about what happened there but with a clearer heart now.

Since my grandpa is without means of expression and I really wanted to reach out to him, I gave him my snowy bunny-plushie that I really do care for - without actually realizing the potential of what I did - creating an opening subject to communicate with my grandpa. It really was just spontaneous and I wasn´t thinking further ahead than wanting to cheer him up at the time. So when I gave To-To (the name of the bunny, not the dog.) to him and told him how much I loved the bunny and wanted him to have it and that it was a memory of me (his granddaughter Poi Poi) with his mind and feelings still complete like any person - he managed to show joy in his own way.

This is To-To.

Unable to speak his joy properly but for grunts, unable to gesticulate but touch the bunny and feel the - with his thin, shaky and oh so weary fingers - soft material of the bunny. Being able to communicate with me by gently squeezing and touching the different parts of the bunny and having me next to him just reflecting what he was showing me in my words...

The ears, the legs, the materials each parts were made of, how soft it was, the eyes, the nose how much I loved it, how it was something I wanted him to have to keep him company because I really wished him happiness and to the things I said, he would answer with grunts that I had a hard time figuring out. I selfishly wanted to think of it a little bit like we were talking...

He started crying, well, his one good eye had been misty for awhile already. I would hug him. And then I would show him how I used to thread my wooden-pearl bracelet above To-Tos head because I thought it was cute for the bunny to have a necklace. I wasn´t sure it was a good idea cause my dad was with me at the time and told me that it looked weird. I took the bracelet back at first, because I felt like I might have done something bad, but no, actually I hadn´t...

Later on, I´d ask grandpa again if he wanted the bracelet, a little bit carefully, because I was still unsure. He reached after it as I presented it to him. He slowly started threading it over the bunnys head; reflecting what I had done earlier. At first with a lot of difficulties because of his degraded motor functions in his arms and hands and I watched like as in slow motion...

He seemed (as I selfishly wanted to interpret it) so excited and joyous over his own ability to make these - to us with normal motor functions, such simple - hand movements, controlling the way he used his hands a little differently for the first time in forever, a less mundane and new way of using his hands after so much time.

As he´d work so hard and almost completely threaded the bracelet over the bunnys head, he started making choking noises and I was afraid I had hurt him somehow, loud choking noises and grunts. I was afraid, but I saw that he was crying and breathing heavily and that he was doing his best to show me that he could do this and that it was out of excitement and perhaps maybe he felt moved...

I started crying too, but I tried to be silent about it. I didn´t want to distract him from making this progress so I just hugged him from behind, sobbing as quiet as I could. He started obsessing over the bracelet now and I watched as he did it over and over again, each time better, more precise and controlled. At this point in time, his tears streamed down his one good eye as he had stopped the choking noises and was making soft grunting noises instead, as if trying to talk to me.

I´d ask him, a bit sheepishly; "Grandpa, are you trying to talk to me? I know you really want to tell me things." and like a chant to sooth him and myself, I would repeat this over and over and he´d grunt and I´d sob into his neck.

I pulled down the bracelet to the stomach of the bunny and said to him that I thought it looked pretty cute. Kinda unsure what I was going to compare it to, but I just told him what I thought. The bracelet got stuck there and grandpa couldn´t get it off again and seemed a little upset over it. So then my dad, I think in his own way, wanting to protect his dad and me - asked if it wasn´t best to just give it back to me. I´d tell dad in response to that, that it was a gift from me and I think Grandpa wants it. Dad was still a little unsure, so he slowly reached for the bracelet and oooooh, grandpa made the angriest grunting noise you´d have ever heard from any man.

I could tell that it simply meant; "No. It´s for me. Don´t you dare touch it."

That made me overjoyed and I just cried like a stupid baby even more, hugging him again every now and then as he made progress. His movements albeit slow - were more controlled and he managed to solve problems removing and putting it back on, pulling it down to the bunnys stomach and removing it again and again, like before, again obsessing over this new stimulation.

My dad was happy about it too, in his own way... he´d laugh and make jokes and he hasn´t laughed genuinly in the company of his dad and me for a long time. Although I was still sad and I could tell dad was too... his desperate attempts to speak to me, unable to completely make himself heard to me, me crying because I was so desperate to understand him... When it came to the point where we had to leave, my heart was broken. Prior to leaving though, I´d tell grandpa about a shirt I was knitting for the bunny and that I promised to finish it until next time when I came back to visit him.

I´m not that great of a knitter, but here´s some progress...

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Today, me and the girls living in the apartment (Nono and Emi) had made plans to try and get some fresh air and some planned shopping done so I left this blog post unfinished, but I´m glad I did.

When we got back home, I started working on the knitting again, I started sobbing but I didn´t want to be a bother about it so I just did my best to hide it or be quiet about it as I was knitting. It was a slow progression because my hands were shaking as I thought of ways I could try and communicate with him.

Crying on your own and not talking about your feelings is stupid. You don´t really make much of a progress being stuck in your own head with sad thoughts that circle around in an endless loop. Nono - having already noticed - would come up to me after awhile to reach out to me in her own way, asking me if I wanted tea and was being gentle about it. I would decline, because all I could think about (as I continued crying like a stupid baby) finishing the shirt with the intention to show it to him next time I go visit him. To give it to him so he could practice his motor functions by putting it on the bunny. And she´d give it a few more goes, at the end when I was being stupid and stubborn, she just sat down with me and started talking to me and I slowly opened up. I did tear up a few times, but the conversation was the best thing that had happened to me in a long long time.

It gave me hope as Nono helped guide me towards new ideas as how to communicate with my grandpa. She´d come with ideas herself, don´t think she thought herself very great - but to me, these ideas were the most brilliant ideas on the entire living planet as they lead me to figure out something that I´m hoping might help. She asked me if my grandpa likes mathematical problems and if he did, I could buy him a calculator and give him math problems to solve. I was thinking; That´s one rather amazing way to interact with him...

And then, after a brilliant tear up and snotty sob-fest and even a toilet break - an idea popped into my mind.

I´ve decided to make a code-language out of of Kanji/Pin-yin symbols and paint them on a poster - each symbol representing a useful word that can be used to form simple sentences - each word represented by a number that he could write down with the calculator, having someone there with him to transfer it to paper and then decoding it or just leave me to decode it.

I´d calmed down by the time I came up with this idea and then undoing my newly found calm, I thought of it more and more and started bawling like a frikken baby, again, jeez, I cry like some kind of lunatic. Not because of pure sadness this time around but also because I was overjoyed and sorta relieved, sorta hopefuly. Also angry that I couldn´t have come up with this before... when he could´ve needed it a long long time ago. But mostly hopeful in being able to maybe communicate with him again. Giving him a way to talk again, even if it´s in code, even if he needs someone there with him to write it down. If it works it would mean he could write letters again. The nurses there could sit by his side and write down the numbers and I could decode it. He could even send letters to his grandchildren and I´d give instructions to send with them.

The only thing I would be sad about is if he had something he wanted to write when no one was around, that it wouldn´t be transferred to paper... IF there is something that can memorize the numbers without having to be a full fledged computer, I want to find it. Something extremely easy to handle, not pen and paper - although I will ask him if he wants to try. Is it possible to maybe make a simple program that could memorize what he types and create a save file...? I think I am just rambling now, just writing my thoughts down. I haven´t thought of this clearly. All I know is that I´m making this my full-time personal project (at home!) until next time I see him and I know that I wanna write him letters.

My next knitting project that I´ve decided to make is a scarf for him. I´m going to send good quality samples of yarn in different colors and have him answer which colors he prefers the most so I can start making him his scarf. I thinik this blog post is getting more and more disjointed as my ideas flow, if it´s hard to follow, I´m sorry! This may be a good time to end the post so I can sleep and get up for work tomorrow.

Thank you blog! for being there to listen to my heart.

Also anyone who reads this...

Sources about the sickness:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
http://www.alsa.org/research/about-als-research/environmental-factors.html