For Huff

Music Therapy

Fri, 11 Jan 2013 10:55:07 -0500

Updates: Surgery

Fri, 05 Oct 2012 18:10:47 -0400

I forget that people don’t really know the whole story. After my dad had a stroke he had brain surgery. There was swelling in his brain (Feb 9) and they took a piece of his skull and put it in his stomach. They put the skull in his stomach rather than freezing it because of the length of time they expected to have to wait for the swelling to go down. Now he will be having his second surgery on October 11th and this is where they will put the skull back together. He will FINALLY be able to take off that horribly uncomfortable helmet he was been wearing for months. This is where things begin to move toward big progress. He’s eating now by himself except at nights. He’s getting stronger.

Some days you just need to hug your dad and...

Tue, 11 Sep 2012 08:51:39 -0400

have him tell you that you are a “super genius” that you are beautiful and that you can do anything and have the answers on how to deal with everyone and how to start back drawing again and tell you you are an awesome poet and that he’s proud of you…

or even just to tell you that you look a hot mess when you do and that you need to get better organized and that your room looks like a war zone.

Today was one of those days when I needed that..or at least I needed that inflated idea that we hold your dad’s up to.

School is kicking my ass.

I am a very thin layer or confidence. Once person, one mistake, one flaw I see in myself, one mirror located is gonna break that. There are certain days/situations where I realize. Huff would know exactly what to do here. He would know how to handle this. He would know how to smile, what question to ask or what person to ask to solve my whole problem and he’s not here. He’s notgone, but he’s not here.

One of my many issues with what has happened to both of my parents is that I blame myself/beat myself up. I never realized how amazing they were. I feel like I wasted my time with them.

I need to figure out a way to make time to see him. I need seeing him to get easier. (Yeah Yeah I know it won’t..) I need to know what to do or what to say. Communication is very hard. VERY HARD. Also the times I’ve gotten a chance to see him (his birthday) he’s so tired. Then, when I hear about what he’s doing I feel like a working mother in a lifetime movie. The nurses tell me about him and I feel like (and it’s kind of true) I don’t know my father anymore. All the pre-stroke problems in our relationship come up. I don’t know….

So, since this blog is about HIM not ME. This is what I know:

He ate pound cake on his birthday
He threw his helmet across the room and declared that hew as leaving
Part of the therapy was have him stand a few seconds.
He doesn’t know why he isn’t walking
His effected hand moved slightly

"“In your experience of the world, how do people change?” “Well, it has something to do with God, so..."

Sat, 18 Aug 2012 16:28:05 -0400

“

“In your experience of the world, how do people change?”

“Well, it has something to do with God, so it’s not very nice. God splits the skin with a jagged thumbnail from throat to belly, and then plunges a huge filthy hand in, He grabs hold of your bloody tubes and they slip to evade His grasp but He squeezes hard, He insists, He pulls and pulls till all your innards are yanked out, and the pain! We can’t even talk about that. And then He stuffs them back, dirty, tangled and torn. It’s up to you to do the stitching.”

“And then up you get, and walk around.”

“Just mangled guts pretending.”

“That’s how people change.”

”

- Tony Kushner, “Angels in America, Part Two: Perestroika” (via singularnarrative)

URA Fever by The kills. Why is this the perfect birthday song...

Fri, 17 Aug 2012 18:01:55 -0400

URA Fever by The kills.

Why is this the perfect birthday song for Huff? Typical. Man of fever you ain’t born typical. Typical is his word for people who are bland, and boring and you make things unnecessarily difficult. Anyone who can survive what he survive is anything but typical.

Happy Birthday Huff, I love you.

Fri, 17 Aug 2012 17:58:00 -0400

“I never said you mean the world to me / maybe it’s best that you never know.” - The Roots

We are ever brutal to those who serve and love us in silence - the book of tea.

I sprained both of my ankles the day before father’s day. The worst part of that was the relief I felt. Not that I had to see him, but I just couldn’t think of what to do. In the course of rehabbing I talked to him twice over the the phone. They were the worst phone conversations I’ve ever had. I didn’t know what to say.

Me: I love you.

Him: (with all the strength he has in this voice.) Thank you

Me: I hopefully if I heal will be photographing a wedding.Um, my feet still hurt. I heard you are standing thought that is great. I miss you.

The most awkward painful silence anyone has ever experienced.

In other words have so much to make up for ..now.

What’s happening…

Getting photos printed to update what he has in his room.

Maybe get him art related thing

Video something (maaaybe)

Printing out birthday wishes from friends.

Tyshia (close friend/like family): Getting him flowers, cards, decorations

His mother: cake (we will let him have a few tiny tiny pieces with our supervision. )

What we have now:

Gotta run do all of that! Pictures later!

TRIGGER WARNING: UM WTF SO the last time I saw my father I saw...

Sun, 12 Aug 2012 22:05:00 -0400

TRIGGER WARNING: UM WTF

SO the last time I saw my father I saw this:

According to Tyshia, her and my brother had been going regularly while I recovered from my ankles. They went one day everything was fine and then the next they saw this. When she asked Huff he said “Accident”

Note: This was the hand that he can’t feel because of this stroke..still, though..

-_____-

Photo

Sun, 05 Aug 2012 22:36:18 -0400

Tyshia: How are you?

Sat, 16 Jun 2012 14:19:05 -0400

Tyshia: How are you?
Huff: That's a good question.

Looks May Be Decieving

Sun, 03 Jun 2012 01:21:00 -0400

So this is another post about the random things in my head. You aren’t obligated to read these. I will understand. Truly.

1. There needs to be an It Get’s Better-Type things for Stroke Survivors. Like a collection of stories. If you look things up you find many blogs that are someone sharing their own story. They can be very helpful it’s just I really wish I could find something that included MANY people. BUT also included some honesty. People who have a stroke or who understand strokes seem to get that it’s a growing everyday thing. People on the outside seem to think that once you don’t LOOK like you had a stroke you survived. That assumption is annoying me. It annoys me because every new ability that a person gains in their struggle is constantly undercut by this false idea of “normal-ness.” IE if my father does “everything else” but speak (note: I mean he can’t speak loudly or like he used. As of right now he is speaking a little) , he fails in many people eyes. If he does “everything else” but his face sinks and he is in a wheel chair he ‘fails.” If he needs help constantly but “looks” okay then people will let him fend for himself because he MUST be fine. Man give people some props for just being alive. Heartbeat props.

I thought of this when a friend of my father came by and wanted to see how he was doing. He had had a stroke and is just now driving. When I began to think of him as having “survivED.” He made sure to correct me.

2. Man FUCK sevens.

I tend to assume that I am constantly irrational. People like to tell me I’m not. OR they like to tell me that the assumption that I am ALWAYS wrong and irrational is in itself irrational So I thought I would rant about the number seven.

Man FUCK sevens.

Seven holds so big numerology for me. I was born 10/7 and mother was born 7th in her family. There are seven people following this blog (okay so one if them is me and one of them is my brother bear with me) But now that my dad had his stroke on the seventh I just can’t stand that number sometimes. Every month from now on I will think about the stroke. 7 is haunting me

[My mother’s birthday is 4/28 OMG 4 x 7, man. xD - Now I’m just messin’]

3. My SO-O not related Nervous Breakdown

Dictionary.com:

nervous breakdown n.
A severe or incapacitating emotional disorder, especially when occurring suddenly and marked by depression.

Yeah one of those.

It was pretty wild. A LO-O-ONG time ago my counselor told me that I need to have a nervous breakdown “like, in public, in the street” since I look like I’m doing so well to people who are around me.

I’m not. The nervous breakdown wasn’t REALLY about my father outside of the fact it was about the things I have thinking about an feeling guilty about thinking about from my previous post.

I mention it, one because now it is in public, two while it wasn’t specifically about my father people should be aware of the fact that I’m not doing wonderful on that front either.

Father’s Day is coming up and I want to punch any advertisement of a father with his kids in the face. (I will be making huff something awesome once I think of it.) Mentioning strokes, and dads, and sevens the wrong day will drive me up a wall. Assuming I’m doing fine or that anyone is without asking (or trying to even figure it out) will drive me up a wall.

You’ve been warned.

I have a blog and I know how to use it.

Journal: 6/3/2012 Update

Sun, 03 Jun 2012 00:38:43 -0400

How’s Huff?

I saw my dad on May 31st.

Twas exciting. I didn’t expect to see him. I had been working for an internship all day and I thought it would be too late for me to go. It was a pleasant surprise

It was an eventful visit.

- I saw my father tired in a new way. He wasn’t groggy tired he was physically tired. He has been up all day and I could feel it in his hands. When I held his hands it was really really shaky and weak. Slowly it got stronger.

- While we show up at about 8 or 9, the nurse Ann (who is awesome and hilarious) mentioned some of the things they got him to do

- They got him out of the bed for a shower (he’s been in the bed for a while)

- The took off his (bed sore) wound vacuum. This is why he’s been in the bed for a while so he should be getting outside more

- He had some range of motion therapy

- He got a new bed. He said it was more comfortable. This means that they moved him around

- He was able to move his head more. He has a terrible helmet and has been put in a strange positions with many pillows so he is forced into many awkward head positions often.

- He does a tiny bit with his left hand (I’ll talk about that more later)

- Someone gave him chocolate. I have absolutely no idea who. I do know that I am not sure how i feel about that. I mean, he can’t swallow (so it must have been tiny bites). Well he’s still here so If he liked it yay.

- He couldn’t quite get it out but he told the nurse about a friend of his Tahnya who came by.

LONG DAY

Pheeewww.

Project Life, American Dad, Random Art & other Post-Semester...

Fri, 01 Jun 2012 22:13:00 -0400

Cultivate a Good Life and Record It

Pictures I found of my parents

Project Life, American Dad, Random Art & other Post-Semester Shenanigans

Project Life

I posted some of the pictures here on my facebook page. I’m sharing them for two reasons. (1) May was national scrapbooking month so it’s festive (2) It’s a way I have been able to deal with my father’s stroke. Project Life, pictured above, is a scrapbook project where you document every thing you do (theoretically) everyday. It’s intense. My friend said it looked more like a journal.

I love it. It helps me remember the great times in my life. In fact, the day I found out my father survived brain surgery I remember taking a picture of the room I was in (and the people I was with) because I wanted to remember how I felt in that moment. It wasn’t until I had continued to do that, that I learned about project life and went “YES THIS!” It also helps me evaluate how I feel. These pages are broken up into little squares so they are easy to place and you buy the pages or the scrapbook cards from beckyhiggins.com (there are other places but this one is my favorite) The squares make it easier to place things but it’s still a challenge. I end up looking a pictures hundreds of times just because I want to place them the right way. Which means I end up reflecting on them more. My dad’s stroke was such a shock to me, that there are a few things I am just NOW reflecting on.

America Dad

I have taken to watching American Dad while I scrapbook. (I like watching whole series of television shows on Netflix. I’ve already done Arrested Development) And I’m realizing that that is quite honestly the saddest thing ever. Every single episode is about the same thing. Stan (The Dad) learns to make more time for his family and to appreciate the things and people around him for what and who they are. The people around Stan miss him constantly, worship the ground he walks on, and want badly for him to be proud of them. It’s not really light fun at that point. It’s sad.

Random Art projects

This brings me to my next point. Art. I do many art projects and since my dad has had his stroke I have been on over drive. I really honestly do it because I really want to make him proud. It’s not just because I love it or just because it makes me feel better. Worst than that I’ve had extended family and close friends who have been trying to make sure I am okay so I have been trying really hard to RISE UP from the struggles and that has caused me harm in many ways. Trying to make many people proud of you, and constantly feeling like a failure is not a good thing. It isn’t.

Anyway. Once again, this is what has been in my head for a while. I saw my dad yesterday. I’ll write about it soon.

THIS IS ME ALL DAY. I PROMISE I start out with something...

Thu, 31 May 2012 07:07:44 -0400

THIS IS ME ALL DAY. I PROMISE I start out with something worthwhile to say I really do.

“Your pain is the breaking of the shell that encloses...

Thu, 31 May 2012 07:03:32 -0400

“Your pain is the breaking of the shell that encloses your understanding it is the bitter potion by which the physician within you heals your sick self. Therefore, trust the physician, and drink his remedy in silence and tranquility”

Journal: 5/30 Update - Too Sweet Don't Cry Readers

Thu, 31 May 2012 00:37:15 -0400

Writing here makes me feel better, and think more clearly, so I think I’ll be doing this more often. In fact I’m going to have another post tonight after this.

I saw my dad on the 26th . [And my brother is just now coming back from seeing him tonight] It was an extremely interesting experience. I went with my brother, my dad’s friend Tyshia and her son. Most of the time when I go see him there are either good moments or bad moments. There is either a focus on him physically or emotionally/mentally. It was a lot of everything.

Good Moments

When I walked in the room my dad the word “beautiful.” I didn’t believe it at first for many reason. One it was loud enough for me to see from the door clearly, two the syllables and three my dad is always the one who calls me out on my hair/clothing issues. (Note: I was wearing a shirt he bought me) After checking three times I was confirmed.

Thank you and yes are the phrases he uses the most often. He can’t quite get to saying “no” BUT when he doesn’t want something he makes some kind of facial expression, grabs hold of you (if it’s a physical problem) or says nothing for long enough for you to know he doesn’t want it and for it to get kind of awkward.

He didn’t do that so I realized he said that.

The other cool thing was that he seems to like the stuff I have put up in his room.

Him: Thank you (randomly)

Me: For what?

Him: (points)

Me: The stuff on the wall?

Him: (nods)

Me: You like the stuff on the wall?

Him: Yes

Me: I’m glad I’m going to be adding some more things in.

Other than that, one interesting thing happened with my Tyshia’s son and my father. He’s 5 and it’s strange (and I’ve said that) when he’s in there, because I KNOW I’m BARELY capable of handling it. I am the queen of holding in horrible moments and swallowing the pain long enough to survive them. I don’t know him well enough, but I do know that Huff likes him and that her son has a relationship with my father too.

Tyshia: Why don’t you say hi? Go over there and hold his hand.

Son: (holds hand for a second)

Me: Hey you remember Tyshia’s son. (My dad’s eyes were closed)

Son: Hi Huff! It’s me! Your best friend. Get better.

AND!

I’m pretty sure. Not definite. I’m pretty sure he moved his thumb on his RIGHT hand. His paralized hand. I saw it 3 times. The first time I wasn’t sure if it was his chest moving under the hand that made me think so, but I’m sure. At the same time I’m worried about his thumb because it is discolored (it looks like purple, black under the lights at night) . So I’m wondering what that means.

The bad stuff

They had to turn him twice. I can’t adequately describe it. But I can say this. He’s terrified, mostly naked and surrounded by two to four people.

It’s gotten easier.

But…it’s not gonna get easier than this. I’m in the room and I try to focus on how he’s doing. I look in his eyes. Tell him he’s doing okay. Meanwhile however I want to pass out.

People seem to think that saying “Well it has to happen.” Is helpful at all. They really don’t get it. Just think about it. You can’t feel half of your body and they half to turn you on both sides. So you feel like your falling or like your crushed. Everyone is staring at you. Your embarrassed. Your in pain because of bed sores. My issue with it has very little to do with my ability to handle it. People can’t hear him

The last thought I have about those moments is basically,

FUCK HE’S STRONG.

That’s everyday.

Photo

Wed, 30 May 2012 12:55:21 -0400

At the nursing home you have to write your name on your items. Q...

Sat, 26 May 2012 15:26:30 -0400

At the nursing home you have to write your name on your items. Q thought of a cooler way to distinguish.

When all you want is your daughter but unfortunately your daughter is me.

Sat, 26 May 2012 15:21:24 -0400

Ugly Truth Time.

I don’t think about my father as often as i would like to. I don’t visit (or want to visit) as often as I should.

When I mention this to my friends ,along with the things I am thinking about, these are the responses that I get:

It’s OKAY (healthy) for you to need some time to focus on you (your work your interests) that is completely fine
It’s alright if you need some attention yourself
Being in the room can be difficult however you handle it is okay [I tend to do okay with being in the room. It’s not until I reflect on it that I get chocked up]
I understand.

I get a few others. I’m blanking on them right now.

Their are a few problems with these responses:

I used to be thinking about him often
The things I am thinking about are not as important as him and my brother.
I remember what I was like when this all started. Even when I wasn’t in the room I was thinking about him. That’s the part that gets to me. The last post was really my way of making myself reflect.
I see my brother working himself to death and doing all of these things and stressing and being frustrated….
IF YOU WERE HIM would you really give a damn? I think if I were him I would want the company. I would feel lonely and tired and depressed and in pain and annoyed and with no way of getting my thoughts out and bored and too cool or too hot because people don’t understand what I’m saying.

I’m hoping that now that school is over and now that the summer is coming up that I can get back to that place where I’m focusing on what is important.

Til then, not blaming myself for not being at the place.

Peace

It was the best of times It was the worst of times. No. It just sucked consistently

Sat, 26 May 2012 01:36:52 -0400

A couple things I’ve been thinking about. (I apologize in advance. It’s early but I needed to get that out. Bear with me, as you guys always do, when I make no sense.)

1. No one has any clue what a stroke looks like. People don’t seem to get it. AND It’s completely impossible to describe what THIS stroke looks like. When I say things like “He’s doing better now. We’re very grateful” I wonder exactly what better means to them. To me, better means still alive and with no new neurological problems. To them, better may mean getting to a place of full communication, walking, eating etc. In other words, things it would appear, we are no where near.

2. How do you love the good moments when the good moments suck? My father tells me he’s excited about the things that I’m doing by saying “That’s great.” It means the world to me because he used he would say that all the time. It would go something like: “WHAT?! JAZZ. THAT”S GREAT.” Even though it hurts him now, even though he’s tired he responds when I mention different things I’m doing. He kisses my hand every time I get a chance to go to the nursing home. He wrote his name a few months ago. He used to, before the newer medications, snap his fingers.

These are all great wonderful moments. They are all moments that make me so excited. However when I mention them, it’s awkward. I get a poor baby look. I get a look that says “Aww that’s really great. I think.” or “Wow that sucks, but I’m going to keep smiling because you are smiling.”

I hope I make some kind of since. I don’t know exactly the reaction that I want. I just know that while these reactions are completely justified it’s startling to me. It’s got me thinking. How do you enjoy the moments when the moments should be making you cry? I think I understand (to the best extent anyone could) that this is the life from now on, I forget that for other people it isn’t and I forget how bad it is. So moments that require I reflect on how bad it is, get to me. It takes away the happiness I should be feeling. Is there some kind of balance? Can you enjoy life AND think about how much it sucks? Is it all about snatching moments where they are and not caring?

3. The smallest thing that breaks my heart. For different people who know him I think there is a specific thing about him that makes this situation hard to deal with. My dad did a lot of stuff so every single person who knows him has a different relationship with him. Right now my dad is extremely groggy and tired. They haven’t gotten him out of bed in weeks because they are waiting for a bed sore he has to heal. He also has had a few test recently (an EKG was the last one). His extreme fatigue makes it so that as of right now he can barely wipe his face. His hand shakes. That always gets to me. Before all of this, my dad probably could have been the 60 year old on the cover of magazines about aging. (He has his own business, he’s a devoted father, and he plays tennis. )

4. FUCK PAST TENSE. My dad isn’t dead. So fuck you past tense. You creep up at the most in opportune times. STOP IT. Yeah, I think since I’ve come this far in this post and I’m sure that it sounds completely random and ranty I should top it all of by yelling at past tense. It’s annoying. He was this.. He used to do that…

5. I promise, one last thing…There is a BIG difference between getting it and getting it. I find my self thinking about to something told me. She said it would help with me keeping perspective. “He’s a story teller who can’t speak and he’s an artist who can’t draw” I get it, but at random moments I find myself attacked with a pang of empathy. What is he going through? How annoying is it when I decide to try to ask him questions? How annoying is it when we talk about our lives when he just wants to go to sleep? Does he dream about things differently? Has his subconscious acknowledge it? What would do if I could do something artsy for months? More importantly, how do you let it sink in that after all the work you’ve done and all of the struggling you’ve been though, and all of the things you have done to taken to make it, nothing is going to end like you thought it would.

Photo

Sat, 26 May 2012 00:52:45 -0400