Adventures in Epilepsy Land & Other Shit

Me daily

So in January, I had another seizure and now I’m on two anti seizure medications. The new one Vimpat is classified as a Schedule 5 narcotic so now I’m a dopefiend☠️☠️☠️. I’m exaggerating but I’m so damn tired, even more tired than I was before. My vision is blurry, my balance is off. In layman terms, I’m fucked up but no one gives a fuck. I had plans to attend a concert tonight that I paid for in December but physically, I wasn’t up to it. I have insurance on the ticket so I will get my money back eventually but I’m pissed. At this stage in my life, I thought I would be somewhere with a drink in my hand and my ass tooted up in the air but nah. I’m in the bed on the weekends with a cat. Who had the audacity to beat my ass a few weeks ago because I went out for a few hours.

No one understands the strength it takes me to deal with this medication. The amount of willpower it takes me to get out the bed four to five days a week to go to work. To keep from falling asleep while working. To merely exist in a culture that has a profound contempt for the disabled. Especially if you are a Black fat woman.

Epilepsy is a hidden disability meaning that the average person who sees me will never know that I’m an epileptic. So people don’t take my disability seriously at all. I had to snap out on my supervisor for asking me to do some work that my reasonable accommodation paperwork clearly states that I can’t do. Man I let that bitch have it without saying one cuss word. She hasn’t asked me to do anything else that’s not in my scope but her stanking ass won’t give me the work that I do very well which is responding to customers emails. Out of complete spite and stupidity. I will never understand why some women treat other women like shit but will kiss the crack of the ass of the man who they are currently fucking but treats them like dirt.

I made a reminder for me to blog once a week on Sundays and I’ve only done it a few times. Partly because my energy levels are in the gutter but I’ve also realized that my niche is not particularly popular so I’ve been like “fuck it why bother?” People aren’t that bright and only care about superficial shit like no talent reality television “stars” and relationships. Do I sound bitter? Yep and so what? I have the right to be upset about being a great writer who can’t get on in a culture that rewards mediocrity. Hell yeah.

So for those who happen to read this, I just wanted to ramble for a little bit. I might blog Sunday but more than likely, I will be in the bed with my cat. Such is the life of a middle aged epileptic.

2022

This year was filled with some highs but mostly lows. The highs were the birth of my second grandson and attending a Duran Duran concert. And getting one of those “good” government jobs that Black folks aspired to for decades. But it was a rough year for me again because I lost more people I loved and other folks I know lost people that they loved too. Grief is a motherfucker.

Since October, I’ve lost a cousin and five friends. My social media friends have lost family and friends. It’s been a season of tears for so many of us and it seems like we are drowning in sorrow.

This aspect of aging is something I wasn’t ready for. As a child, you worry about losing your parents but you never think about losing your siblings, cousins, and friends. Childishly, you think that you and your crew are going to grow up and old together but that’s not true and it’s a bitter pill to swallow.

I’ve cried so many tears in the past three years and just when I think my tear tank has officially dried up, I lose someone else and the tears start flowing again. I’m so tired of losing people I love.

Grief Once Again

It’s Sunday afternoon and I’m sitting here watching a marathon of the television show “Snapped” and crying. As usual because I’m thinking about my lost ones and is filled with sadness, anxiety, and anger.

Earlier this year I read an article about Caroline Kennedy and it was written right after her brother John died in that plane crash along with his wife and sister in law. The topic was about being the sole survivor of your immediate family and what a terrible burden that had to be. As everyone knows, her father was murdered in 1963, her mother died of cancer in 1994 and then her little brother died in 1999.

I broke down after reading the article because it explained what I couldn’t articulate what I was feeling and is still feeling at the time of my brother’s death two years ago. American culture doesn’t like to ponder on painful thoughts so it really hasn’t been any research done on this topic. The impact of being the sole survivor of your family is overwhelming. At times, I thought I would end up in the psych ward but I’m still here, holding on to my sanity by sheer grace and will power.

I find myself clinging to my memories tighter and tighter as the days go pass. I listen to the music of my youth and young adulthood because my family were still alive when that music was created. I take a longer route to go home from work because I like to ride through the Bronzeville neighborhood I lived in from 1988 to 1992 because my mother and brothers were alive then and we all lived together.

I’m still coming to terms with the realization that the people with whom I had formed my earliest memories with are all gone and it’s nothing I can do about it. I’m not a religious person but I’m hoping that it’s a place where our souls go when we die and I will see my people again. Everyone will be restored to their full glory and they will greet me with love and joy.

Grief

Next month will be the anniversaries of my brothers deaths. Both of my brothers died in the month of February three days apart, one on the 7th which is ironically his birthday and the other one on the 10th. How morbid is that? Quite actually so I’m not in a good space right now but somehow, someway I manage to persevere. Despite of the pain, the sorrow, the never ending grief.

Some days are better than most. When I FaceTime my grandson and see his happy, smiling face alight with the joy of seeing his granny.

When I’m curled up in the bed with my cat and I can feel him purring loudly in contentment on my lap while I read one of my many books.

When I’m on the phone cackling with my best friend and we reminisce of days past, when we were young and carefree running wild.

When I’m talking to my children and listening to their hopes, dreams, and aspirations for the future, feeling blessed that they feel comfortable enough to confine in me.

But even with being surrounded by so much love, I feel so lost. It’s not an easy burden being the last one alive from your original family. At times, it feels like a horrible dream that I’m eventually going to wake up from and then it hits me that this is my new reality. And I have to deal with it whether I like it or not. So I wake up every morning grateful to see another day and at the same time filled with sadness. As time goes on, I know that it’s going to get easier but right now, it’s rough.

Death – The Final Frontier

Ever since I was a child, I’ve been both terrified and fascinated by the specter of death. I became obsessed with death after spending the summer with my grandmother in 1980. She had moved to Wichita, Kansas to reside with her daughter, Aunt Annabel, and we spent hot summer days together with her telling me tales from her youth.

She was a Southern Baptist and believed that the coming of the Lord Jesus Christ was going to happen in the year 2000. So I analyzed the situation, well as much as a nine year old girl can analyze and decided that it would be cool for everyone to die together at one time. Although I would only be 30 at the time, at least I would die in the company of my family and friends. The thoughts that children have.

In the years that have passed, I’ve learned a lot about death unfortunately. I’ve lost so many friends and family in the past five years that it’s surreal. Especially the deaths of my original family, the family I was born into. My brother Randy died in 1994, my mother Gertrude in 2006, and Larry in 2020. My father wasn’t a part of my life so it was just myself, my brothers, and my mother. Now it’s just me and it’s been one of the most difficult journeys I’ve taken. Although I have children, a grandson and a new grandchild due in the spring, and a ton of cousins and friends who love me, I still feel so alone at times. I’ve come to the realization that this feeling of loneliness and despair will never go away but it will always be a lingering bitterness.

Now I’m obsessed with dying these days. Worried about leaving my children motherless. Worried about what would happen to them if I should die. Wondering who’s going to love my babies like I do. My mother had three children and I’m the only one who is left. What kind of shit is that? Why am I still here? And how does it feel to be dead. Is there really an afterlife and a place where souls go when their journey on Earth is over? Will I see my dead loved ones again? Totally morbid as fuck and unhealthy but it is what it is.

Getting Diagnosed With Epilepsy When You Are Old as Dirt

Me in the hospital back in 2019

December 16, 2019 was a perfectly ordinary day for me. I got up, washed my ass, painted my face and went to work. When I got off, I went to Target to pick up the set of Lincoln Logs I had ordered for my grandson for Christmas and purchased some other stuff because women are gatherers by nature and I couldn’t resist. Then I went home, cooked chicken tacos, talked shit with my children, and went to bed. But little did I know that in less than 30 minutes, my life as I knew it would change forever.

I had a seizure during those 30 minutes and when I came to after the seizure, my house was in chaos. My babies were crying, ambulance attendants everywhere, & Diddy (my cat) was hiding under the bed. I barely knew my name and didn’t have a clue about anything. I was rushed immediately to the hospital where I spent two days receiving a battery of tests on my brain. All the CT and MRI scans came back normal so I was released and told to rest. I went back to work after a few days and continued to live my perfectly ordinary existence.

I thought everything was fine until October 17, 2020. Once again it was a perfectly ordinary day. It was a Saturday and I decided to make some beef stew for dinner. I was missing several key ingredients so I went to the Walmart down the street from my house. I purchased my items and remember standing outside waiting for an Uber and then nothing until waking up in an ambulance on my way to the University of Chicago Hospital. I had another seizure and if it wasn’t for the kindness of strangers, lord knows what would have happened to me. I still had my purse, wallet and cell phone although I believe if it happened now, I would have woken up with nothing because people are extra grimy these days but I’m digressing so let me chill.

When I awakened from this seizure, I was scared as hell and started wilding out, trying to fight the ambulance attendants and one of these dudes referred to me as “combative.” Wouldn’t you be combative if you woke up clueless and didn’t even know what year it was because you had a grand mal seizure? Sorry motherfucker.

But when I got to the hospital, everyone else were empathetic. I was eventually admitted and diagnosed with epilepsy a month before my 50th birthday. I’m a special individual: first seizure a month after my 49th birthday and then diagnosed with epilepsy a month before the big 50☠️.

Since then, I have had two seizures, the next one on November 14, 2020 and the last one March 1, 2021. I’m currently taking 3000mg of levetiracetam which is the highest dosage recommended for this medication and it’s working because I haven’t had a seizure in almost a year but the side effects are something else.

Constantly tired, broken down and worn out. If I go to the grocery store, I feel like I’ve worked a full day of work. I’ve left two jobs this year because of the side effects of this necessary evil I need for my body and is currently trying to wrap my mind around the possibility that working a regular, on-site job might not be an option for me anymore. But I refuse to believe that. I’m only 51 years old and I know some younger folks believe that I have one foot in the graveyard but 51 isn’t old by a long shot.

I still have plenty of time left on this planet. I’m going to work on getting this fat off my ass, become more mobile and live my life. Epilepsy is not going to ruin my possibilities of which there are many. I’m going to keep striving and living because I have so much to live for. My children. My grandson and my new grand baby who’s due in the spring. My friends and other family members. My funky ass cat who works my nerves but I love to pieces. And myself because I want to be an old lady with snow white locs with a hand carved cane in the shape of a cat at the top. Telling people to get the fuck off lawn and still giggling madly at silly shit. The last two years of my life have been filled with so much turmoil, grief and anxiety but I’m still here to tell my story. And I’m grateful.

Depression, Depression, Depression….

Depression is a terrible thing because it creeps up when you least expect it. You could be having a perfectly good day and memories from the past will swarm your brain and you will feel like crawling up in a corner and hiding. Hiding from the pain, the confusion, the chaos of your feelings.

My feelings are in turmoil these days because I have lost so many people in the last few years to death. My brother, the last of my original family. My boos Trena, Genial, and Mikki, my around the way girls from around the way. So many people I loved and cherished that I loved with all my fiery soul and now they are gone and its nothing I can do about it. Because you can fight many things in life, certain illnesses, job losses, relationships that should ended eons ago but death? You can’t fight that bitch. You just learn to cope and move on with your life the best you can but depression will always plague you.

And even if death hasn’t plagued your life, depression can slap you in the face and fuck up your life. American culture is a perfect example of the ills of depression.

I know that we live in America, the place of Horatio Alger tales where people come from humble backgrounds and somehow, someway through hard work and perseverance, manage to ride off into the sunset and that’s a beautiful tale. Unfortunately, for most people, their lives will be filled with obstacles on the path to greatness, and for some that greatness will never come. So they find themselves falling into the depths of hell which is called depression.

Americans are supposed to constantly happy and blowing sunshine out of their asses or they aren’t considered real “patriots.” So they walk around with fake smiles and harass complete strangers at grocery stores, parks, gas stations and various other public places. Looking like complete maniacs but hey its America though.

Photo by Renda Eko Riyadi on Pexels.com

Please don’t think I am making fun of people suffering from depression because I am not but I am tired of people taking out their issues on complete strangers. I have been through the bowels of hell in the past few years of my life but it never occurred to me to go outside of my home and show my entire ass to the world. I just coped and got some therapy.

Did it help? Yes it did. Did the depression go away? Not yet but I am hopeful because walking up sad and mad daily is not a good thing. And all I want is to be happy at least 98% of the time and that is I want for other folks. Just be happy, eat good every day and live their lives. Life is too short and precious to dwell in misery. Be happy my people.