For Huff

When a song triggers both anticipation and reward, it moves us like nothing else.

From My Stroke Of Insight

"Appendix B: Forty Things I needed The Most"

"35. Keep me familiar with my family, friends and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them."

"36. Call In the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me - like visualize me being able to swallow with ease or rocking my body up into a sitting position." 

On the 24th of May my dad went back to the hospital for a day because he was depressed. They had an evaluation and now he's back at his nursing home. Many people have tried to guess why he was depressed. I think it's a combination of things. 

I graduated. People think that him not being able to go to my graduation caused his depression. Others think that it magically lifted his spirits. It's hard to really know how big of an impact this had because he keeps forgetting that it happened. (As you can imagine it is not fun to remind him that he couldn't go because of his physical limitations AND that it already happened). 

His nursing home roommate died. He didn't die IN the room but at one moment there was a person in his room at all times and now there is not. 

He's lonely. People visit but not every day. 

There isn't enough activity in his nursing home. The nursing home  says that he doesn't get up when they ask him to. He says he gets up regularly. Someone is wrong. 

He isn't able to move on his own. He is having a hard time understanding that he can't use crutches. He is still paralyzed. All he talks about is wanted us to bring them. In his head as soon as he get them he will be able to use them. He talks about weight lifting, playing tennis, jogging. 

From his own words: "I stare at the ceiling. I count [the pattern] and I count and I count and I count." He sees the same sterile room every day. When he does get out he sees the same boring hallway. This nursing home has  a few pictures up but not nearly as many as most nursing homes/hospitals. 

While I can't improve on the other things right now, I want to decorate his nursing home room.  For my dad (since he is an artist) visual stimulation is very important. I decorated his room when he was at his first nursing home (this is his second). In the course of the move we lost the photographs that were up on the wall. He had some plants but those have died. He DOES have a tv and a CD player, but we need to give him more music and the tv gets a limited number of channels. Until I heard him talk about his room I didn't fully realize how much he needed a decorated room. When he was at his first nursing home the focus was on basic physical things like swallowing and he was really groggy because of medication. I didn't really know if he liked what I had up. But I I did notice that people who work in the hospital/nursing home treat him better once they see his artwork. They also treat him better when they think that the family has an active role in the patients recovery, which is visible when they see photos on the walls) 

Currently with the help of some awesome people (who know who they are) I've come up with a list of a few things to add to his room. I WOULD LOVE ANY AND ALL IDEAS FOR HIS ROOM. 

More photos! I showed him my first scrapbook and he really responded to seeing the photographs. The nursing home provides one cork board in every patients room. He pointed to different photos in my book and asked me to put them on his board. The cork board is situated on his side so i want to put things in front of him

A lamp (the overheard light can be harsh to a person's eyes

Origami paper cranes hanging by the window. Each room has fits two patients; he is on the side closest to the window

More of his art

Inspirational Quotes (Not sure which ones. It has been suggested to look up quotes from musicians that he likes.)

Plants (which ones I'm not sure. A terrarium was suggested.) 

Create a visual scavenger hunt (Don't know what that means but the name sounds cool. I'm trying to figure out a way to make it so that he doesn't get bored with his surroundings)

A colorful blanket 

More music 

Make a pocket that fits around his bed handle. 

Bring books. (I need to find some that have larger print for his seeing) 

Balloons (Father's day is coming up) 

We would love for people to send "Get well soon"-cards/balloons/plants (HINTY HINT)

In addition to "Operation Decorate Nursing Home Room" I'm looking for ideas on "Operation Fun Activities." He's still paralyzed (on his non dominate side) so it's hard to figure out things for him to do. The current list includes

Have a group of friends get together so we can play cards

Painting wooden frames together and putting pictures in those frames. 

We would love to have people (crosses fingers) perform music for him. (HINT HINT) 

We would love to find something that would fit over his bed so he can draw. 

If anyone has any ideas for things we could do with him or in his room. Please let me know. 

:) 

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

URA Fever by The kills.

"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:

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..

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.

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

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.