Learn More About Me

Tuesday, May 17, 2022

self

 Most days, I forget that I have MS. 

You know, like how someone forgets that their hair is brown or their eyes are blue. Not truly forgotten, but not something you always think about. Just a truth about who you are as a person.

Today is not one of those days. Today, I'm mourning my body. I miss walking without pain. I miss walking freely, with no restrictions. I miss being carefree. I miss being able to walk outside and be.

My feet, my legs, my hips, my brain. None of it belongs to me anymore. It has all jumped ship and are in the control of MS now. They're traitors that I still have to rely on for everything. 

I can buy the right shoes, but if my feet don't like them, they're out. 

I can take the right medicines, but if my legs don't feel like walking today, they're not walking.

I literally, cannot fake it 'til I make it anymore. And that's really hard, because that's pretty much my entire personality. 

My body is no longer mine. 

I have no autonomy. Only MS.

Sunday, May 8, 2022

mother's day blues

This is to all non-moms. All people who desperately want to be moms, but aren't. Either not yet, not ever, or not currently. 

I always felt really down on Mother's Day before becoming a mom, for obvious reasons. Everyone is happy. Everyone is posting how wonderful their moms are and how wonderful it is to be a mom. So. Many. Bump. Photos.

And yeah, they all have the right to be happy, but when you're not happy, it's just kind of fucking sucks. 

I am sorry that you are feeling the feelings of the place where you are. I felt those feelings for so long, and honestly, they've still never gone away. They've lessened in severity, but I can still celebrate Mother's Day while sitting with my grief. And so can you. Be extra kind to yourself today. 

Monday, April 4, 2022

feelings

Last night we watched Atlanta. The first episode of season 3 is about white moms with black kids.

I know the situation they showed isn't even close to us, but it really fucked me up.

Ever since Isaiah was born, the greatest guilt and biggest question that plays over and over in my head is: "Why ONLY Isaiah?" Why didn't we help them all? Why didn't we take them all in? Why didn't we save the world?

And I know that is unrealistic. I can't be a good mom to ten thousand children, but I can be to one. And that's what matters, but I realize all of the harm that well-intentioned white people bring. 

It has been eating at me. At my heart. 

When Isaiah was a baby, he was absolutely beautiful. You know, he still is, but the big teeth and all...

But I cannot tell you how many people said "you've got to get him into modeling" or "enter this cutest baby contest!" And the thing is, he could have won. We have the family situation that white people LOVE. White people love to see other white people being "not-racist". Like we're putting in a good word for white people everywhere. We're doing the work so they don't have to.

Can I count how many people have told me I'm a saint? No.

Am I a saint? No.

I'm a mom. And I won't lie to you, I had to unlearn so much of white culture in being a mom. Because white culture, is racist.

And I won't exploit that. Not for you, not for anyone. No, I will not enter my child in the cute baby contest. I don't need you to tell me that he's cuter than all the other kids. I already know.

Don't tell me how lucky/blessed my son is that we adopted him. On his first day of life, we took him from the only mother he knew for nine months. We took him home, and made our family. Because we are privileged to do so. 


Wednesday, March 30, 2022

body

Yesterday was rough. No easy way around it. Not because of anything that happened, but because of my MS symptoms. I felt awful, but I had an obligation that I had to be present for, so I pushed myself. 

My mom was always big on pushing me to do things. She is the reason I was a cheerleader for 11 years. She is the reason I played violin for six years. My mom is Tina Fey in Mean Girls. She's a pusher.

And while I don't always love that quality, I used it yesterday to push myself.

There have been a few times where I've learned that pushing myself isn't the best idea. My son still believes that I am allergic to bananas because I was eating one once and passed out in the kitchen. (I have told him several times that I am not allergic to bananas, and that I have MS and he will not accept it.) 

I was in the kitchen in the first place because I thought I could push through my fatigue. Mind over matter, you know? That was the first time that my body took the wheel and said "no bitch, we laying down". 

So my question that I'm pondering is, when do you push and when do you pull? How do you know when it's time to do which, when your body is constantly lying to you? It's the body that cried wolf. 

I saw a meme yesterday that said "disabled women are sexy, powerful, attractive, and worthy of love", and I'm still thinking about it, because I don't see myself in that way. I feel worthy of love, because I believe everyone is worthy of love, but the other things? How can I possibly believe them in a body that won't even cooperate with me for the smallest thing? 

That's what I don't know how to get back. 

Tuesday, March 29, 2022

life

 As often happens, I get caught up in the fine details of life, and I fail to share the full picture.

I've always wondered why I do this. For instance, I'll remember to tell someone that I cannot stand how the seam in my shirt is rubbing on my right arm, while forgetting to share the big news.

So I'm going to share all of the little things first, and then I'll share the big things.

I cannot handle eyes and I burst a blood vessel in mine throwing up on Sunday and now I want to die every time I look at it. I've had the same cold/flu for four weeks and I'm officially ready to go back into quarantine. Isaiah is only four inches shorter than me right now. Plant life is doing great around me. I am getting ready to fully immerse myself in all things Venus Fly Trap. I've even made a friend on Instagram that is around the world, and is an expert in such plants. Oh, I switched eye liner and mascara for the first time in 15ish years. That's going well. I also bought lip gloss. I'm currently loving Chobani Greek Yogurt, mixed berry flavor. I'm considering making some bread because we're going through it really fast at home. 

Just two major things. 

First, my book. I've been working through the "world building" of my story, and I have not had fun like this in so long! I had no idea that exploring my own thoughts and imagination could be so fun. I love that every time I get stuck or hung up on something, I remind myself that it's my story and I move on. It's very fulfilling. I love when I get an idea and I think "is it okay to say that?" and then I realize "yes, it's okay. This is yours. It doesn't matter if no one sees it. You are doing this." 

Second, a couple years ago I did a commercial for Avonex, the medication I take for MS. They have reached back out and asked me to do quite a bit more work for them. So you'll be seeing me on an insta ad in a feed near you soon.

And that's my update. MS is still a bitch, but I don't really feel like talking about her right now.

Thursday, March 17, 2022

shit

I had the flu for the last ten days or whatever and it felt like several years. I believe this is the first time I've had the flu or anything since I was diagnosed with MS and it was a real learning experience. First, I took twice as long to recover than my family did. And then my MS symptoms started acting up. (Mom, don't read this next part). And then yesterday, I shit my pants.

I have missed a lot of work lately, due to illness and also having scheduled days off for doing things. Yesterday I didn't feel great, but I thought it was just my MS acting up (I'm nauseated every day when I wake up. Every single day.) So I pushed through it. And in a way, I was right. I pulled into the parking garage, parked my car, turned it off, stood up, and the MS hit. (Mega Shit? Multiple Sclerosis? Same, same.)

But the real impressive part here is that I just got into my car, sent my husband a text, emailed my boss (I'll be in by nine k thx bye) and drove home. Took a shower, put on my second outfit of the day and then went back to it.

Bladder and bowel issues are common with MS, and unfortunately it's something I deal with also. I used to be mortified. Now, it's just life. It just happens. Shit happens, you know?

With that being said, I will not be taking any shit from anyone for the foreseeable. I have enough of my own, thank you. (And yes, all day I was like "oh girl, you can have that! You shit yourself today. Treat yo self.")

I am an adult. And sometimes, adults have shitty days.

Okay, I'm out of fun word play. Shit.


Thursday, March 3, 2022

hospital

Yesterday, I took a loved one to the hospital. Everything is fine all around, but it was an experience.

I have been diagnosed with medical PTSD, and I have a difficult time going to the hospital campus where I was diagnosed. 

But my family needed me, so I pushed it down, and we went. 

I went to park the car and met them inside, and then was told which room they were in, and my heart dropped.

This is a big hospital, like I think the biggest in the region (I don't even know what a region consists of, but it's big) and the room my person was in, is the same exact room where I was diagnosed with a stroke, undiagnosed with a stroke, and then given a lumbar puncture. I vomited my guts out in that room after my spinal tap. My doctor came in and told me that I was likely developing a disease I had never heard of before, and I thought I was going to die. All in that room. I arranged for my son to be picked up from preschool and had a needle inserted into my spine. 

When I realized what room I was headed to, I couldn't breathe. I stood outside the door for a moment to gather myself, and then I realized that there was no gathering anything and I went in.

I couldn't let my person know I was scared. But I was terrified. We both were.

I text my mom a picture of the stupid horse picture on the wall that we fought about that entire day. 

My mom is the kind of person who can look at a cloud and say "Oh, I see a house with a three car garage and a Volvo out front". I am not that kind of person. She was convinced that she could see a face in the pattern on one of the horses. 

And her response to the picture made me cry. 

"Angi, that day changed your life and was so scary, celebrate the new you, you have grown so much and a lot of the things you were scared about that day you have learned about and tackled. Look in the mirror, baby, you have come so far!"

Today is still hard, but I finally got to laugh in a place where I cried so much.  

Tuesday, February 22, 2022

book

 It's official. I bought a computer. I'm writing a book.

And oh my GOD IT'S OVERWHELMING.

I am working with a book coach, and she has given me a guide to work from. The first question was: Why do you have to tell this story. And my answer is different than I thought it would be.

WHY do I have to write this?

Because J.K. Rowling is a transphobic menstruator

I have not always been a good example of someone who supports trans people. I have done a lot of work on it, because I feel absolutely terrible about it.

I have a trans family member, and I was not a good person about it for a very long time. I love this person with every bit of my heart, but I haven't gotten my shit together to be supportive until recently.

When I got married, I issued an ultimatum. "You wear a dress or you're not in our wedding". And to this date, I am horrified at myself. 

I've made peace with this person and we are now close, but I will never be able to go back and change the way I acted then. Out of completely ignorance and hate. I hate sharing this with you, because I want to be a well-adjusted fighter-for-rights. I want to be like "yeah, I was about this before it was cool", but honestly, I was not.

So back to my WHY.

Harry Potter was my absolute favorite series. I read it several times per year. SEVERAL TIMES PER YEAR. We watched the movies all the time. I listened to all of the audiobooks. I used the audiobooks to control my anxiety and calm me down. They were soothing. They were magic.

And then I found out, the person who created all of this magic, this entire magical universe, was so closed minded that she would make statements against trans people. People who have found solace in her work. People who have felt accepted by the words she wrote, found out that the creator, doesn't value their life the same as other people.

That is why. I'm writing a book, specifically with the purpose of trans people knowing that the author loves them. No matter what. I'm a person, you're a person, we're all doing our best.

Wednesday, February 16, 2022

permanent

This one is a little difficult for me to write. I've had a lot of people tell me that the things I write here must be really hard to write. But really, it isn't. By the time my words hit this blog, I've pretty much worked through my feelings on the subject. 

I've had all of this for a long time. I've been to therapy, I've been to doctors, I've done the work. 

But the eye doctor was the last big boss I had to beat before I achieved Total Self Wellness.

But it was really hard for me to do. And it took me four years. 

I think that my struggle might be overshadowed some by my successes, but trust me, none of this came easy or without work. Yes, I was working on my anxiety and adjusting to my diagnosis the whole time, but I was so terrified of the eye doctor that I pretended it didn't exist. It wasn't a problem I needed to address.

Let this be a testament to how strong your brain is. I lost half of my vision and convinced myself that I didn't need to see an eye doctor. FOR. FOUR. YEARS.

So I went last week.

And after a lot of tests, a small panic in the middle of the appointment, and a very thorough exam, the doctor told me that she saw the damage in my eyes caused by optic neuritis and MS. She saw the "permanent" damage.

Now, here's where I get caught up. I've been diagnosed with MS. I know that I have a lifelong chronic and incurable illness, but hearing that my eye damage is permanent was new and upsetting. Why?

She didn't tell me anything I didn't know. She said that I should have been seeing an eye doctor the entire time (I know). She said that the eye damage is permanent (I know). She said that I need to make regular eye appointments and see a doctor annually (I know).

When I first lost my vision, people who knew would ask me daily if it was better. After a while, they asked less. And now they really don't ask at all. Because the answer is always the same. "No changes". I think part of all of us was hoping that I'd be the miracle. I never really held out the hope that I would get pregnant and have the miracle baby, but for some reason I bought into the idea that I would someday get my vision back.

But now I know. I won't. So I'll add this to my list of grief to deal with, and that's that. Life is life. 


Wednesday, February 9, 2022

gratitude

A couple weeks ago, I wrote a letter to the doctor who saw me for the emergency appointment the day I lost my vision.

I realized, I never saw him again. He played this HUGE part in my life, but I only knew him for about twenty minutes.

I watched a show once about "that guy". The one who you're always like "that guy! You know, the one from the thing!". Go figure, I don't remember the title, but in it, a bunch of "those guys" are talking about what it's like to be "that guy". But they usually deliver some sort of one line, bad news type thing. "You have a couple weeks left", "They didn't make it through surgery", or "I'm afraid there has been an accident."

(I had to look it up. It's called "That Guy....Who Was In That Thing". It's about 16 different actors who are all "that guy". It follows them through their careers in trying to forge a name for themselves so that when you see them, you say "oh! It's Tom Hanks!" And not "oh! It's that guy from Sleepless in Seattle.")

Whoa. That was a tangent. I think the point I was making is that the doctor I saw, was the "that guy". I went to his office, he said "I think you're having a stroke" and then we flew off to the hospital and the whirlwind takes us to today. 

But he made a huge impact, and I never got to thank him or see him again. 

So I wrote him a letter. And because I'm a terrible paraphraser, here it is:

We’ve met before, and this is long overdue, but I wanted to reach out and thank you for the impact you’ve had on my life.

The day we met, I woke up and could only see half of everything I should have. I panicked and called the eye doctor that my mother took me to as a child. I wasn’t even a patient any longer. I called the emergency number, left a message, and got you.

When you called, we discussed what was happening, and you said I should come to your office for an exam as soon as possible. This was the Sunday before Labor Day 2017.

My husband and I came to your office, I sat in your exam chair, and you said to me “I’ve met a lot of people who say that they’re seeing something, and they aren’t, but I can tell that you are. I think you might be having a stroke.” Or something to that effect, sorry if my memory is off, a lot has happened since then.

When my husband was driving to the hospital, I was trying to come up with different ways to remember your name. I can’t quite remember what I came up with to remember it, but it stuck. And I’ve thought about that day almost every day since.

I was eventually diagnosed with Multiple Sclerosis.

It has been over four years since we met, and I think a normal person would just move on and have forgotten about it, but I can’t.

You made a tremendous impact on my life that day. The kindness that you showed me, and the urgency that you took from my phone call, is something that I will never forget. 

Angela Terry

Wednesday, January 26, 2022

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.




Friday, January 21, 2022

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.

Tuesday, January 18, 2022

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)

Thursday, January 13, 2022

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. 


Wednesday, January 12, 2022

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.

Tuesday, January 11, 2022

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.


Friday, January 7, 2022

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. 


Thursday, January 6, 2022

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.

Wednesday, January 5, 2022

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.



Tuesday, January 4, 2022

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? 

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