employment, again

You would think the second time I got gas lighted at work, I would have picked up on it. No? 

A brief timeline:

September 2017 - vision loss

October 2017 - diagnosed with ocular migraines

November 2017 - loss of gross motor skills, hospitalization with lumbar puncture

November 2017 - started Avonex for MS

December 2017 - started Prozac for (see above)

January 2018 - back to work

February 2018 - finished physical therapy

February 2018 - promoted at work

That timeline was harder for me to remember that I thought. I don't know that I realized all of that happened that closely together until just now. Jesus Christ. How did I survive that? Because on top of that, the things that aren't listed are: Thanksgiving, Christmas, preschool programs, Isaiah turning 5, regaining the ability to walk, getting an IUD. This was traumatic as fuck.

And all the time, knowing that my supervisor was going to retire in February, and if I could handle the job, it was a huge pay increase. For someone who couldn't work for 6 weeks and who has a considerable amount of student loans, that pay increase was going to save me. And now I know, it didn't. I saved myself.

When I went back to work in January 2018, I was terrified. I didn't know whether to wear makeup to work. I didn't know how to dress anymore. I didn't know how to talk to anyone. Because when I went on medical leave, I was me. But now coming back, I was someone I didn't know. So I kept my head down and did the work. And it was a lot of fucking work. 

If you're reading this and don't know me personally, I work in government finance. At the time, I was working for a local law enforcement department as a civilian. I managed $30 million in budget, $1 million in cash on hand, and 330 employees. Alone.

And I did it scared as fuck. That's a lot of money to deal with, let alone keep straight. And I had four weeks of training before my supervisor retired. There were more things that we didn't discuss than we did. I taught myself that job, by trial and error. And it was so hard. 

In the beginning, I never took days off. Never rested. Because if I rested, I would get behind which would make my anxiety spiral and my pain would hit so hard and so fast that I wouldn't have time to get home or take anything before I knew what was happening.

When I was quitting, a supervisor said to me "You won't find this flexibility anywhere else." And I said "Flexibility? I work 16 hour days. 8 in the office and 8 at home. This isn't flexible."

That was the turning point though. I need to go back.

I was quiet at work, and I've never been quiet before. I had to be though. I was learning. And I learned so much. I learned how to do the job, I learned how to walk, I learned how to be chronically ill, I learned how to be a working mom with a chronic illness (please God, don't let anything else happen to me because the amount of words I have to use to describe myself is exhausting). I used to leave Isaiah in after care until they closed because I would stay at work late to keep learning things. I used to work through lunches. When the pandemic started, I was one of the first people to start working from home, and I think that is where the breakdown happened.

I had an assistant. But looking back, I had the opposite of an assistant. I had someone who was kind to my face, but did not truly want the best for me. And all of the times I was working from home, she was working in the office, and she was working against me. To the point, that on the day my dad had open heart surgery, my boss screamed that I hadn't done anything all year.

Trust me, I'm not giving him a pass in any way. He's a dick. But he had to get that idea from somewhere. He isn't smart enough to come up with it on his own. And he was never in the office enough to observe it for himself. But she was. And little digs about "Angi working from home" must have really struck a nerve. 

Working from home was a bigger nightmare than working from work. Don't get me wrong. I love being at home. I love being able to close my computer and then make dinner. Honestly, I don't know what happens between 4:30 and 5, but that drive home zaps the rest of all of my energy and I would rather die than make a meal that my son decides he hates. So yeah, it absolutely had its perks, but I hated it, because I WAS ALWAYS WORKING. I can remember something popping into my head at 7pm and I opened my computer to fix it. It got to the point that seeing my computer sit on the kitchen table made me feel sick. I just wanted it and all work OUT OF MY HOUSE.

But then, per usual, the thoughts crept in. Am I just sitting on my ass doing nothing? Am I even cut out for this job? Why can I never make everyone happy? I thought I was doing a good job, is my perception off? Is my disability making me bad at this job? Can I not work now that I'm disabled? Do I need to quit? Should someone with more ability do this job?

And the answer is no. The answer is that I wasn't supported in the way I should have been. I was held to a standard that even a fully able bodied person would have a hard time meeting. And I fucking met it. I was great at my job. 

And then I realized my worth. Disabled or not, I'm fucking amazing. 

Then, my best friend, Taylor Swift wrote me a love letter, in the form of the song "It's Time To Go":

Sometimes giving up is the strong thing

Sometimes to run is the brave thing

Sometimes walking out is the one thing

That will find you the right thing

 

Now he sits on his throne in his palace of bones

Praying to his greed

He's got my past frozen behind glass

But I've got me.

You know, when it's time to go. So I did. 

Bye, bitch.

employment

I was just looking back at my calendar from last year to see what date was my last day working at my old job. What I found is that one year ago today, I began seeing my psychiatrist. And the whole idea I had for this post, just left.

I was going to talk about how much my life has changed since I left my job, but honest to God, starting with a psychiatrist and quitting my job are kind of tied for the best things I've ever done for myself.

I didn't want to see a psychiatrist. Why? BECAUSE THERE'S NOTHING WRONG WITH ME. 

Except for, of course, everything that is wrong with me.

I have had anxiety so long, that I worry about what I'll worry about if I don't have anxiety. 

I see anxiety as a weighted blanket on my brain. Yeah, I can function unmedicated, but it's hard. Everything is heavy. I don't have energy for things I enjoy. But it crept in so slowly, just like MS, that I didn't notice it until it was debilitating. 

I reconnected with my childhood best friend in 2020. She and I were inseparable. Like right now, I'm waiting on a text back from her about why she told me I should see a psychiatrist, because I can't recall. But I do know that she was the one who said "I think you should consider talking to a psychiatrist and getting something 'as needed' to help with your anxiety." Now let me tell you, I hadn't talked to this girl in 14 years, and within months she had the balls to tell me that I was not okay.

And she was right. A thousand percent. I was not okay. But I started making the steps to be okay.

I started taking care of myself better. Mainly my mental health became a priority, so I left my job. 

Now let me tell you about that job. I hired in at that Department when I was 23. I was in school for secondary education, ran out of money, and needed a job. So I got one. Then, after Isaiah was born, I went on maternity leave and extended it to two years. I severed my employment, and was a stay at home mom. When Isaiah was one, we fostered Mason. Mason lived with us until December 4, 2014 and when he went, I suffered more grief than even I can imagine. So I panicked and went back to work.

I started with the same Department I was with before, but in an administrative office on January 5, 2015. And things were perfect. For a year.

I worked with a woman who had a sign on her desk that said "No Drama Allowed" and I came to learn that those people are the most drama there is. 

I thought we were friends. We had lunch together often. We could see each other from our workstations and we would talk constantly. Josh and I had Isaiah baptized, and she came to my house and arranged the flowers. But then slowly, we started to drift apart. Until one day, she came in, blew up, and demanded a sit down with me and our two bosses. 

That meeting, in my opinion, added to the decline in my health that I was unaware of. In that meeting, she absolutely railed at me for 30 minutes. She was allowed to say whatever she wanted and I felt completely blindsided. She talked about how I was so mean to her, and she was crying the whole time, so it never once occurred to me that what she was saying wasn't accurate, because she was so upset she was crying about it! It must be true.

After that meeting I went into her office to speak with her privately. It was then that she told me that working with me made her suicidal. She had two small children at the time, and all I could think about was the fact that I made someone not want to live. She had so much to live for, but by me being myself, that was too much.

So guess who felt like an asshole. Me. The one who didn't know anything was wrong. 

We don't speak now, she moved on to a different job, and by no means do I think I'm telling the full story here. I'm certain her version is very different. 

But while all of this was happening, something bigger happened.

I was going to lunch one day with two of my bosses. The person driving our car, wanted to switch lanes and the person behind us wouldn't let them over. The driver of the other car was black, and everyone in my car was white. 

The driver of my car has very public anger issues, but it really still shocked me when they looked over their shoulder and screamed "YOU FUCKING N*****".

And then worse than that, they only apologized to me. They immediately realized what they did, and turned around and said "Angi, I'm sorry I said that". But I was not the only other person in the car. So I was apologized to because I am the mother of a black child. 

The people closest to me know about this, but I've kept this instance mostly to myself. I've considered talking to HR. I've considered pretending that it didn't happen. I've thought through how it could come back on me professionally. And that bullshit pisses me off to no end. I am not the person who screamed the word, but I am the person who still remembers and still feels guilt for not reporting it. 

This happened in 2015. 

Seeing that kind of hate come from a person who you respected, changes things. Irrevocably and permanently. While I have a lot of problems with my former employer, that is the biggest.

back

 My back is fucking killing me. I don't know what the deal is.

But one thing I'm really confused about is the phrase "I threw my back out". What the hell does that mean? I've been confused about this my entire life. You threw it out? How? What constitutes as thrown? Is it your whole back? Part of your back? Can you throw your back out if a different part is already thrown out?

So I don't really know if I've thrown it, or if I have an incurable illness that attacks my body and also makes everything confusing. Weird.

I am listening to a book about how to write a book. And I can't enjoy it so far because I keep thinking about how this lady is teaching people how to write a book with a book she has written. Like she didn't have to think of an idea or anything. It's interesting. I do like the book (Bird by Bird, Anne Lamott). I listen to books when I walk, so when I was walking she said something about describing the world around you. And I think I can do that. 

She said to just start writing. Go through my childhood and try to detail all of the memories. Which, whew, that's dark. 

So I sat down and all I could think of was my fucking back. 

I can't bend. I feel so stiff that I feel like my spine is fused and all of my muscles and skin are casts on my body. I think this is the MS hug, but maybe I threw my back out. Who knows.

I miss the old me. 

(please do not offer me fixes. I am only accepting sarcastic jokes at this time. Thank you for respecting my wishes)

leg

Possibly the hardest part of getting sick, even harder than losing half my vision, was losing the ability to walk. 

The week that I was diagnosed, I was wobbly. I felt hungover all week, and even a little bit still drunk. When I was at work I felt like I was going to fall out of my chair, and when I tried to explain something, I slurred my words. I was starting to worry that they would think I was drinking at work. Which probably would have been more understandable. 

But the day that I went to the hospital, I woke up, and I couldn't walk without holding the walls. If you've ever been at a children's museum or science center, you've probably seen the rooms that are tilted. You try to walk normal, but you end up falling against the wall. Except it was my house, and my house was not at sea.

At this point, I thought I was having a blood sugar issue. I've never had blood sugar problems before in my life, but I couldn't figure out why I was so lightheaded and confused. I made it to the dining room chairs and I remember looking at my husband and saying "something is wrong". 

Isaiah was in preschool, so my husband took him and my mom picked me up and took me to the hospital. 

After my marathon in the emergency room where they told me I had a stroke, and then didn't, and then they said I might have MS, and did a lumbar puncture, I ended up on the 4th floor in a neurological unit. And I really didn't feel all that bad, and I know this because I was really hungry. I was so restless too. I would ask a nurse to take me for a walk every hour or so because I just wanted to get out of my room. 

And when I was in the hospital, I could walk. I had no problems. Until the third day, when I started to feel like I was veering to one side. I was released and walked out to our car and into a pharmacy after. I went home, took a shower by myself, and I was tired, but okay.

The next couple days is when it got ugly. 

Have you ever gotten so drunk that when you lay in bed, the room spins? It was that. 

24 hours a day.

I ended up spending days throwing up from motion sickness. And all I was doing was laying on the couch watching tv. By the time we went in for my follow up neurology appointment ten days later, my husband was doing the majority of the work when I walked. I couldn't look around when I walked at all. And I would be exhausted from walking from one room to another. 

And then the pain started.

The lesion that disrupts my walking is on the left side of my brain in the back, on the cerebellum. This was my second lesion. The first took my vision, and the second took my balance and muscle coordination in my right leg. 

When your nerves are damaged, they work just like a frayed electrical cord. It might work. It might spark. It might melt or burn slow. It might catch fire.

And I didn't know it, but I was about to catch fire.

And it has been one mindfuck after the other since then.

I want to end this fun and positive, but I've honestly ran out of energy and I don't feel like being positive about this. It fucking sucks. 

vision

Since I lost part of my vision, things have been interesting.

I can still drive, I can still read, I can still do everything I did before, but it's weird now.

Your eyes work like this: you have the two (unless you're enlightened, then you have three) and the eyes have all kinds of things in them. Rods, cones, retina, all those things. When you have poor vision and need glasses, it is because of your eye health. 

But, those things have to be connected to your brain and central nervous system to take in and interpret the data and this connection enables you to see.

You can have two perfectly healthy eye balls, and still vision loss because the signal between your brain and your eyes is disrupted.

I have a lesion (think scar) on my optic nerve. This is often an early sign of MS. And stroke. Before I lost my vision, my ultimate fear was not death, but it was going blind. 

I started noticing that when I would drive to work in the morning, I could blink my eyes and I would have the after-images of all the lights in my head. Like I could close my eyes and still see lights where they were when my eyes were opened. Not like a super power or anything, but I really confusing burst of light that I couldn't blink away.

I can remember a different time, when I was sitting at my desk and I saw bursts of light around my head and I thought that I wasn't taking care of myself and I was experiencing it because I had high blood pressure. (I do not have high blood pressure and have never).

But I think it started when I was a teenager. I went to an ophthalmologist when I was 12 or 13 because I was seeing colors, and they weren't transparent. At the time, I was diagnosed with ocular migraines.

Weeks before my onset and loss of vision, I was reading a book series. I can't even remember now what it was, and I don't think it was very good, but I became obsessed. I read non-stop. And my eyes started to hurt. They felt like they were swollen and crampy. I remember telling my boss at the time that I felt like I had a headache in my eyes.

Most likely, it was my first lesion developing. 

And now, it's four years later, and it's still not back. People have stopped asking me how my vision is, because I think we've all accepted that it's not coming back.  

But what I find most interesting is that I appreciate what I do see. I love walking outside and seeing things in the different light that seasons bring. I love watching birds. And I don't think I realized those things before I lost my vision. I knew I loved to read and I used my eyes a lot, but I didn't really use them to look around. I appreciate everything I see now. I appreciate every detail that catches my eye. 

I can't think of a way to end this. So bye.

write

 I've had so many in person conversations lately about my writing. Everyone seems excited that I'm writing again, and so am I. It feels good to get everything out of my head and on paper. I'm finally putting words on my feelings again, and I love it.

I've also decided that I want to write a book. 

This is the part where you get really excited because you think "A booK! About her life! A LONG BLOG!?" Just kidding, I know you don't think any of that, but you should. Actually, you shouldn't. Because the book I'm going to write isn't anything that I've ever written before. And I can say that with confidence (which is something I typically can't with my blurry brain) because it's going to be fiction.

In my house, she's called Memphis Nikki (which I just realized is hilarious because she doesn't even live in TN). On Instagram she's called @nikkihodum. She's the most amazing, supportive, and encouraging friend one can have. And, she's an author. 

I'm in a Two Person Book Club with her. That she created. I promise, I love it.

There is no way to start this next sentence without sounding like Dr. MLK, Jr., but it's based on a dream I had. I'm writing this post because I want to look back at it when I'm done writing the book and say "Look, you wrote this without knowing one bit of what the story was about." Because I don't. I have a simple setting, and I'm going to go from there. One word at a time. 

I'm also terrified that I won't do it. I mean, it's pretty official putting it on the website that I own, for the world to see, but I think I can handle that pressure. 

And if you want to know how this story goes, you're going to have to read the book.

Hahahahahahahahahahahaha.

mom

I had a conversation with my mom last night, and I told her I was writing again.

And then I told her everything I've written, and over-explained how much I love her and my dad, but these are my feelings.

And then she told me about a time that broke her heart, and I remember it.

I was six years old. My mom is excellent at playing with children. I hate playing. Sitting on the floor to do anything sounds like an awful nightmare, but my mom is really good at it. I know that's something Isaiah loves about her. So, when I was six, we were sitting and playing. 

I don't know if you family does this or not, but every person in my family does. They say to kids "Who is the prettiest girl in the whole world?" and they say it to the person who is supposed to say "Me!". 

I can remember my great grandma saying "What are we going to do with him?" talking about my dad and I would always say "We'll keep him, and love him." 

I've said this before, but I was five when my sister was born, and still five when she died. I turned six a few weeks after she died. 

So that day that my mom recalled, we were playing at the counter in our kitchen and she said "Who is the prettiest girl in the whole wide world?" and I got a very confused look on my face, and I said "Alex?". 

I remember this, and the feeling I had. When my sister died, I didn't understand what it meant, but I knew I was supposed to be sad because everyone around me was sad, and everyone told me that it was okay to be sad. So I tried really hard to be sad, but I don't think I had developed the understanding yet. I remember being at her funeral and having fun with my cousins in the lounge, and suddenly remembering that I wasn't supposed to be having fun, I was supposed to be sad. 

The 30th anniversary of her death is this month, and my mom and I still cried last night. 

There is no end to grief. There is no limit. Your feelings are valid no matter when they happen. 

fracture

"My dad is...my person."

I tearfully choked that out to a supervisor at my old job, when I was quitting. Last Christmas, my dad had a heart attack, and on New Years Eve, he had a triple bypass. And on New Years Eve, my boss got mad, screamed and yelled, and stomped his feet because I put in for 16 hours of overtime. 

Without going into the boring details of government finance, the end of the year is the highest volume of work we have all year. Every person gets raises, and in my old position I had an unbelievable amount of work to do. 

And when I made it back into the office after the first of the year, I went into my supervisor's office and said "I'm done. I'm not doing this anymore. I applied for a different position." 

And he said "What if you don't get that job. Are you prepared to just quit?" 

"I am."

When I was young, my mom worked weekends, so a lot of the time, it was just me and my dad. He took me to all of the state parks in the area. He was at every single event I had, whether I was involved or not. He showed me the best places to ride my bike. He taught me how to read a map and navigate. He taught me how to use tools. He loves me with a fierceness that I hope Isaiah feels from me.

So when someone is screaming about 16 hours of overtime, when one of the people who mean the most in the world to me is in a hospital operating room, having a machine keep him alive, yes, I have absolutely had enough. On New Years Eve, I said to my husband "I'm getting a new job. I can't do this anymore".

We weren't able to visit my dad, because of Covid, so we had a family zoom meeting the night before he had surgery. And I finally understood why my mom was so upset when I was sick. It is miserable to see someone that means so much to you, be sick and look vulnerable. He's our strong, silent pillar. 

And he made it through surgery, and is back to living his normal life. 

When I went in to work on January 1, 2021 (which was a holiday, but I had work to do) I applied for my current job. And it's the best thing I've ever done for myself. I gave so much of my life to that place, and I don't think it was recognized because I handled it well. I know my shit, and the best part is, I know my worth. And I finally know how to leave when I'm not appreciated. 

But that brought me a whole new world of questions. Do I tell my interviewers that I have MS? 

I haven't interviewed for a job since I was 23. I was a smartass then, but it has gotten so much worse. I'm a government employee.

But that wasn't the hardest part of my interview, the hardest part was politely telling the Judge that I wanted to work for that I wanted to leave my job for a position with less money. Because if there is one thing you don't do, it's voluntarily take a pay cut. 

One of the first questions they asked me was "Why do you want to work here?" and it just all came out. 

"I enjoy the work I do, but in 2017 I was diagnosed with Multiple Sclerosis. It is well controlled and I haven't used an extended leave since I was diagnosed. And the environment that I'm in, is making me worse."

Because it absolutely was. My body was shutting down. I can take all the miracle drugs in the world, but I can't expect them to work if I don't do my part. 

So I left. I became part of the Millennial Exodus. The Great Resignation. And not one bit of me regrets it.

fuck

I used to not swear. Like at all. 

I can remember being on the elementary school playground and trying out bad words with my bestie, but when I entered my early twenties, I became evangelized. 

We got engaged when we were 21 (children). We got married when we were 23 (seriously, children. I never grew up in a church, and my husband didn't either, although he had more experience than I did. So for our wedding, we picked a pretty church and then followed the rules to get married there. Which included me getting baptized and us becoming members.

I have a very odd relationship with baptism. Like I just said, I was an adult and I had to get myself baptized. 

However, I have to give you more background info before I can go on.

When I was five, my parents had a baby. When she was four months old, she died. It wasn't quietly in her sleep either. My parents had her at the hospital and every single effort was made to save her. In her final moments, after the doctors told my parents there was nothing they could do, my parents had her baptized.

I have never questioned my parents love for me. But why wasn't I baptized? And why would that be the final act of her life? She couldn't possibly need baptized so she would go to heaven. She was a baby. She hadn't done anything bad, let alone anything at all. 

When I got baptized, it was in the Spring of 2008. And we became "perfect" people. We got rid of all of our DVDs and CDs that were explicit. We stopped swearing, because if we were to have a conversation with Jesus, would we say bad words?

I read bible studies by Beth Moore. I attached myself to people who I thought would help me be better. But I never felt better. And then all of the people who I thought were better, started to fail. Marriages that were supposed to last forever, didn't. Friends who were supposed to always be pure, weren't. I felt like everyone had this secret personality that I wasn't aware of, until they fucked up. 

And now, I'm not sure where I am. Because the people who have perpetuated this pandemic and hundreds of years of racism, are Christians. And those two things are really hitting home for me. I promised my son that if he got the vaccine, this would all end. We could see friends again, and not wear masks, but here we are. Variant #4. There are easier ways to learn the Greek Alphabet, for fucks sake.

But I started this post to talk about words. Specifically "bad" ones. When I was in college, I had a professor who would always say "History is how you interpret it." Vague as shit, right?

I don't think I fully even understood it until recently. Because what happened really does come down to how it's interpreted and told. Have you ever looked back at a story about the Civil Rights movement? What perspective was it told from?

Words. Jesus. Stay on track.

Wouldn't words only have the importance we give them? Is a word "bad" or do we call it "bad"? 

I'm supposed to tell my child that he can't say "shit", but I should also say that he can't learn black history in school? I'm going to be very clear, and I'm not sure if I have before, if you are against Critical Race Theory, you are a racist. That is the kindest way for me to say it. And since I swear again, I can get real creative.

how i feel

Feelings are a strange thing to me. I don't know that I've always felt them the correct way. Many times, I have had someone upset with me and I had absolutely no idea why. I'm not excusing myself in any way, I said that to say that I don't think I interpret things the same way other people do.

My husband and I get along well, but on the times we do argue, I feel bad about my own emotional intelligence, because I feel like mine is broken.

Like "read the room" isn't something I do well. And I don't know if this is my personality or MS. Sometimes I wonder if they can even be separated. 

My previous employer wasn't great for this either. Until last February, I worked in a high stress and highly confrontational environment. With a very high volume of work. And when I find out, even now, that people didn't like me or I upset someone while I was there, I'm still surprised. 

And right now, you're probably thinking that I'm just really oblivious or obtuse, but really, I have a former aunt who said that I was a disgrace to my family for adopting a black child. 

Where I get lost is in the middle. 

Like I always knew she was kind of a bitch, but I didn't realize she was a full on racist bitch. I didn't see that coming.

I also didn't see a former coworker of mine coming when she said that working with me made her feel suicidal. 

What is this called? What am I missing?