There's No Nail Biting In Vlogging

As promised, July 28 at 12 o'clock noon EDT, The Chronicles of Nani debuts in video!

It's not perfect (yet) but it's not bad. I'm excited to keep going with this project and it's a lot easier on my hands! I welcome everybody to check it out and please leave comments, including that I appreciate constructive criticism. That's how I get better.

If you can join me right at noon for the premiere party I'll be there and we can all chat as we watch. But it's going to be up forever after that with the next vlog planned for next week.

An Exciting Week Ahead

If you're one of the regulars at my “coffee shop in cyberspace” I have no doubt noticed some changes. The Chronicles of Nani is going video!

First off, I've mentioned it before, thanks to MS and what it's done to my body, not my brain, but definitely my body, I not only don't walk, but I don't write and I really can't even type. Last year in September my dad and I went to Cleveland Clinic to talk to a physical therapist about whether or not I had the ability to work at all and if I was qualified for any sort of disability income. After much testing and talking to the therapist he determined that I am really not able to do any kind of work for an income. What's even worse is I haven't been able to work in enough years that I am not qualified for any kind of disability. (I am going to talk to a disability attorney to see if there's any way that I can qualify. I waited until I had spent all of my investments and even cashed in my annuity for retirement and spent it all before I became desperate for something, anything.)

Matt, the therapist I saw, walked out to the door with my dad and me. He shook both of our hands and when he shook mine he said, in a truly less than happy tone, that he was sorry there was nothing he could do for me. My dad was quiet as we got back into the van and he climbed my wheelchair down to the floor before he got into the driver seat. He was truly surprised at the big smile on my face. While Matt was finalizing the paperwork I was becoming inspired. 

One of the many MS symptoms is insomnia. That's an interesting twist because severe fatigue and oversleeping is also an MS symptom. I'm a natural nocturne, since high school, so I'm up late anyway and on insomnia nights I'm sometimes still awake when the alarm for my 7 AM pills goes off. After I scrapbooked a lot during the day and even wrote in my personal journal and the journaling for the scrapbook pages (Keep in mind that when I say "write" I mean speech to text but then I have to go in and fix all the mistakes that the text part picked up wrong from my speech.) My hands and forearms are usually painfully numb. I am the watching a lot of late night TV. There's some decent comedy and a lot of interviews that are pretty interesting. One of the things I've noted in the shows that I've been watching is it there are a lot of people making decent money doing video blogs or as they're better known vlogs.

What inspired me was that, while I'm no longer able to pack up paperwork, snacks, etc., to continue as a self-help group leader for the MS Society, I still talk to a lot of people about MS. There are many different kinds of MS and even more symptoms of MS. I freely answer what it's like living with it. I am an optimist and I try to make the best of every new challenge the progressive disease gives me. But I still have plenty of bad days and I have to deal with those too. People make an actual living doing videos talking about hair and just their lives going to restaurants and out clubbing at night. I actually have important things I can talk about that can help people and there are plenty of medical suppliers and even drug companies that, if I have enough viewers, might be interested in advertising on my blog or YouTube page.

It's a small amount that you have to earn per year to count as income to be considered for disability. Once I have small earnings for a couple of years then suddenly everything that I had paid in since I was 16 becomes valid for my possibly being able to get a monthly disability check. It may not be a lot but it would help. I have insurance and a husband who handles the out-of-pocket expenses, but last year it still cost $800 for an MRI alone and that wasn't the only thing insurance covered but still had a big portion out of pocket left over. (And an MRI is an annual necessity with MS.)

I missed my first planned launch date because I wasn't quite ready on January 1. It wasn't long after that that through reading and a family member in Europe who had COVID-19, the coronavirus and the birth of a pandemic made me start to rethink my idea for a Vlog. People are getting sick and dying all over the world, is talking about how I'm dealing with MS a little less important? My doctor has had me in quarantine at home since the end of February. I've only been out of the house a few times and when I do go outside I'm not supposed to leave my driveway. And she still has me staying at home now.

The coronavirus and things we do and don't and didn't know, and things we were and weren't told in a timely manner that could've given us more of a chance to keep it from spreading so much in our country has just been insane. The discovery that wearing masks can protect other people so if everyone wears a mask and practices social distancing we protect each other is helpful but there are actually people who believe that wearing mask is against their first amendment rights and even some that don't believe there is a coronavirus/COVID-19. (It's a PANDEMIC, people have gotten the disease and died all over the world and all over our country. I kind of think it's real.) You don't even have to get off the couch and the Internet is huge. Read some reputable medical sources and not just memes on Facebook.

The one thing good about quarantine is that it's letting people realize prejudiced injustice is still real and we have murderers who are supposed to protect us. There is peaceful and safe with the virus that still surrounds us, protesting. One of the bad things is that there are those things to realize and it took a world pandemic for us to pay attention to them.

But stress and depression and even a major creative block from all the terrible things going on in the world that I'm not necessarily in, but still a part of, made me realize that I'm able to talk about my living with MS, but also living with MS and still being part of the world. I'm actually feeling even more inspired than I was almost a year ago. Now my new goal for getting my Vlog on the Internet is "before I turn 54.” I made that declaration at the beginning of last week but as I'm looking at it right now it means the first video will be up on YouTube by Tuesday because I'm only gonna be 53 until 7:45 AM on Wednesday.

Wish me luck.  I hope everyone who watches my videos will find some reason to smile and some tidbit to make them a little more understanding of people like me and people like everybody else.

Hands

I wrote this back in June. I'd been having a massive creative block and couldn't figure out why. With everything that was going on in the world, I couldn't write or even scrap about it. I even tried doing a scrapbook page about having a creative block and all it did was make me realize my block was probably because I was just overwhelmed.

Back in 2001, I did a PowerPoint photo video after 911. I wasn't really involved in any sort of social media, in fact in 2001 AOL and email WAS social media. I emailed that video to everyone on my email list and encouraged them to share it if they felt moved to do so. I actually received a reply email from my friend who told me that he loved the video. He told me the creative people create in their own ways after major disasters to allow people who are not naturally creative to reconcile their feelings with works that express the words they need but can't find. That's not verbatim, but it's essentially what he told me.

It made me feel like I had an obligation to create, not just for my own outlet, but that it was necessary to share my work. But as the first half of this year was a couple months from ending, there had been so many awful things going on that I just short circuited.

I turned to my personal journal, my trusty journal that I've always been able to just write until my problems come out of me and are solved.

Honestly, I sat down to write about COVID-19 and it turned into stories from my past and of rant about the current protests. SO many things that are just wrong right now.

After the photo are the actual words to Hands. I was watching late night TV and a musical performance by a band with a very dark skinned singer and I noticed the inside of his hands as he held the microphone. I started thinking about all the people I know and realized how similar the color of the inside of all of our hands are. When I said to the TV, and it's a line that you'll read in Hands, that those similar hands that we all have are the same hands we put together to pray, I started weeping and I cried until the end of this song. I had to go back and download the song so I could hear it because at some point what I was seeing struck me so strongly that I was crying too hard to listen to the music. And that was the beginning of my creative block ending.

Hands

Who are you?

Who is your neighbor?

Who is your coworker?

Who is that stranger?

How do we define ourselves?

How do we define friends and family?

How do we define everyone?

How do we define anyone?

Look at the back of your hands

Are they light, bronzed, olive, dark?

Is that you, your color, your race?

What makes that shade you?

Now flip your hands over.

That color is incredibly close to the same color 

as the inside of every other hand

What do you do with that part of your hand?

You put together 

The insides of your hands

To pray or meditate,

When you think or plan

You hold the inside of your child’s hand

With the inside of your hand

You shake the inside of someone’s hand

With the inside of yours

A musician uses the inside of their hand

To strike keys on a piano, 

touch the frets on a guitar, bass, violin, banjo

To hold a drumstick or a microphone

The earliest painting we do is with the inside of the hand 

Talented older painters hold the brush inside their hands

Ceramics and pottery is shaped with the inside of hands

Crafters at home hold their supplies inside their hands

An athlete throws a ball, catches a ball, dribbles a ball

Holds a bat, a racket, a golf club, a hockey stick

Proudly clutches a trophy or medal 

with the inside of their hands

A cook, chef, baker, uses the inside of their hands

To hold the spoon that stirs food in a restaurant

To knead dough, and put cookies or a pizza in the oven

At work, or anyone at home

An architect draws with the inside of their hands

A builder plans and schedules with the inside of their hands

A carpenter, electrician, construction worker 

uses the inside of their hands to build

One last push and a doctor brings a baby into the world 

A mother holds the newborn against her for the first time

A father caresses them both

All with the inside of their hands

On the inside our blood is the same color

But on the outside what parts of our bodies define us?

Parts where we look more different

Or the parts where we are more the same?