Suddenly Disabled: Extended Version

PLEASE SHARE this story. I find myself in the heat of a battle that is every person‘s worst nightmare. My message is an emergency SOS not only for my home, my kids, and my own wellbeing but for every FAMILY IN NEED. Outside of Chicago, in the rest of the state of ILLINOIS, the majority of residents are experiencing economic crisis and job shortages. Little to none of the tax dollars we pay are being used to help our own citizens, not-Chicago residents, or fund repairs and community development to support our townships. NO STATE, COUNTY, PRIVATE, or PUBLIC SECTOR has emergency funds to HELP those who are truly, desperately in need of it. For the elderly and disabled, LIHEAP applications won’t open until October 2, 2023. I just received a letter from AMEREN ILLINOIS, a SHUT OFF NOTICE for September 8th. I have a few days to find assistance that simply isn’t available in a broken system that was not built to accommodate the disadvantaged.

I must put my pride and dignity on the back burner to let you in on the very personal, very sad, embarrassing, defeating details of the circumstances I’ve been living with for most of my life. I’m a semi-nude, alternative, expressionist model. The extracurricular doesn’t pay well. Then, why am I putting myself out there in such a vulnerable fashion? Aside from the potential for future fruitful business, it’s my truth. The truth that I control. The expression of my soul that is unadulterated, untainted by society, unaffected by others’ opinions, uninfluenced by outlying circumstances, unspoiled by the past, and ultimately and sincerely present.

What I’m about to tell you is the naked truth that no one should have to reveal. Truth that I should be able to work for, earn wages for, find my own solutions, and struggle for in discretion without needing to ask for handouts. I am in a position where I don’t have a choice. Now, I am completely exposed here before you, because my choice was taken away.

Where to begin? I was widowed the weekend before I moved into what was supposed to be our first family home. In one afternoon, my greatest achievement, the most exciting day of my life, the ultimate success for my family…to own a house and land to raise our children, a dream now a living nightmare.

Three years later, I’ve managed to sustain and maintain a sense of security. Somehow, I keep on breathing. Not without the ultimate sacrifice in every area of my life. The only thing that matters is I’m still here, still trudging through the mud, still providing, still keeping my head above water, and I won’t give up. My children have a roof over their head. They have HOME, exactly what I need and what I desire to provide for them.

Last week, I received a shut off notice in the mail from AMEREN for September 8th. TWO DAYS from now. Back in April, our electric and gas was disconnected when I was having car trouble for the umpteenth time. Due to my 10-year-old daughter’s medical problems we were able to restore the utilities and defer the payment. She has severe asthma. We don’t have anywhere else to go. No one to help us. No one should have to help us. It’s my responsibility to my family to keep the electricity on, to keep the roof over their heads, to make sure they have clean clothes and warm beds to sleep in. I am a working poor girl raised with working poor values. You rise with the sun, grab your axe, you stack your cords, go on to school, bring home all As, then back to work. Thats the natural order of humanity. You do your part, starting at home.

I was in the hospital when the medical payment arrangement to Ameren came due. Much of that week is a blur. I had a seizure, my first unprovoked seizure. No warning, no symptoms, no medical or environmental reason why. I have a severe head injury from the fall. I can’t remember anything. I’m lucky. I could’ve easily died. I lost so much blood the Edwardsville Fire Department had to come and spray off the parking lot where I fell. I remember hearing someone call my name. I remember seeing the cars next to me with blood splattered hubcaps and doors. I remember being told to keep putting pressure on my head. I also remember not quite understanding what was being said, but I heard it. My eyes were open, but I have only a few visual memories.

I remember the pain of being forced to lay in a hospital bed for four days, not allowed to move or use the restroom without someone assisting me. I remember the IV in my skimpy veins burning, the tape becoming soggy and failing to anchor the IV properly in place. I remember the unbearable pain in the top and front of my head, the tenderness from laying on my right side because the left side of my head had been stapled. Railroad tracks of oozing scabs ran through my scalp. My hair curled up tight and hard like rock candy, stiff and painful to move. It looked like I stood under a shower head and let blood rain down on me. I recall screaming for Tylenol the nurse could only give every 6 hours that relieved nothing but contributed greatly to the frustration welling up inside of me. Every day, someone new would come to my room after mealtime to draw more blood from already tapped out, blown out veins, bruised arms, and black hands.

I was trapped in my own hell and I didn’t know why. Trapped under crushing guilt that my mother and my family had to witness such a grotesque scene, one that I couldn’t stomach if it were my own kids. Guilt crushed me for putting my mother and my family through another big something after a lifetime of struggle. Always having barely enough to survive, but never having enough of anything to just live and enjoy living. Now, look what I’m putting my family through.

I still don’t know why, neither do the doctors and the neurologist. All my tests have been negative so far. I should be happy about that. Sh*t happens for a reason, I used to believe.

Now, I can’t remember big chunks of my life and my short-term memory is suffering.

Yesterday, I received a shutoff notice from AMEREN. We have 2 days to find $1800, or at least $400 for a down payment, to prevent shut off.

Illinois Referral Line, warm neighbors, cool friends, Urban League, Catholic charities, riverbend ministries… calling and talking to every “supervisor” at Ameren for several hours for them to tell me I’m screwed. EVERY CALL I MAKE results in another referral to the same numbers, the same people that pass me around in circles to tell me the same tale, “YOU DONT MEET OUR GUIDELINES. THERE IS NO HOPE FOR YOU OR YOUR CHILDREN.” I hope to God there’s a class action lawsuit on the horizon.

None of our government programs have anything available for people who suddenly become disabled, unable to labor, lift, walk up a staircase, or shower by themselves, who can’t drive, but are required to fill out paperwork applications. People with children, who also have health issues DO NOT HAVE OPTIONS.

IF I made a moderate income, $4100 monthly, I would qualify for help today through local community development programs. IF I WAS A PREGNANT TEEN, I’d qualify for assistance. IF I WAS AN ILLEGAL immigrant, I would qualify for assistance.

If only they could defer the payment, prevent shut off for 1 MONTH, I would be fine…but they can’t do THAT?! A utility service that should be free, a NATURAL RESOURCE that should be free for everyone in the first place!

I’m unable to drive to fill out applications. There is no backup plan or emergency funding. I’ve called every number in Madison County and Illinois. My doctor and my daughter’s doctor have sent faxes, made phone calls, but they’re disregarded. Their opinion doesn’t matter, I’m told. There’s no help for single parents, for disabled, not NOW when we most need it.

Funny, ironic even, if I made at least $4100 a month I would qualify for assistance. I’m a veteran, an indigenous artist, and proud stagehand after a dedicated lifetime career in the music business. I’m a widowed mother of two. One of my kids has disabilities, severe asthma, who can’t go without power.

I can’t get in my car and drive off, not only because some entitled pig stalker tampered with my car and I have no working vehicle, but that I would be putting lives of other families at risk by illegally, immorally getting behind the wheel and driving to fill out these applications for assistance that wouldn’t prevent the shut off.

If it meant saving my own family, helping my own kids, I would get behind that f***ing wheel.

So, I need a jump…or a good faith SHARE. PLEASE. Thank you for reading. Blessings to you and yours. I pray no other family has to endure injustice like this, tho, I know many are. I’m praying for you, too.

Last month I suffered a random, unprovoked seizure and sustained a head injury. Suddenly without warning, with no medical explanation, I am disabled. I have no memory of the event. From the moment I pushed on the heavy wooden door to the leave the Edwardsville Children’s Museum until moments before paramedics arrived was a dream filled with dark nothing. A silent, unseen predator stalked me undetectably, struck when I was most vulnerable and unsuspecting, unleashed havoc on my body, and unraveled my life in a single moment. I don’t remember anything. As if I dozed off into a peaceful deep sleep, I heard my name being called from the dark from a distance. Not once did I feel pain, or panic, not until hours later. One futile second, one uncontrolled moment of weakness, then I woke from a dreamy sleep to find myself surrounded and covered in a deep, dark pool of my own blood. I awoke to find myself in a foreign, self-destructing body with memories that were not my own. My lips struggled to form simple words that my head already worked out clearly and coherently, but some phantom disconnect prevented my mouth from anything more than muttering vowels.

“I I I’m mmm sorry. Wh whhh what ha-pp-pp-ened?” What purgatory am I trapped in? I am a writer, a linguist. I captivate people with my speeches. I was assistant to the Dean of the School of Music. For whatever reason, however it happened, I couldn’t speak. For God’s sake. I just want to know if the kids saw me go down. Are they out of sight?

“Keep the towel pressed against your head.” My brother’s mother-in-law, Beth, saw everything. Lucky for me, she is an experienced ER nurse. She and her husband saw me walk to the very back end of the Edwardsville Children’s Museum parking lot to the only open parking space between two cars before stepping up onto the parking block and trust fall, backwards swan dive, head first into the blacktop. I don’t remember any of it. My loved ones, my mother, my family, and friends had to witness such a grotesque scene while I was off in a dream, comfortable and warm without a care. They look at me differently now. As if I cause them pain. Maybe I do. I wouldn’t be able to stomach witnessing such a scene if it were my own children. Mom has been through so much already. She tries so hard to be strong in front of me but I know the look of heartbreak in her eyes all too well. Suffering so deep it took a lifetime of observing her to identify it. Despair. Intense emotional pain. The added agony of trying to appear well for your child. It’s my fault. I haven’t seen her look at me that way since dad died five years ago. I can only imagine, I cannot fathom what she must feel. The minor accidents, nose bleeds, rough scrapes, and booboos I’ve patched up for my own kids left me feeling deeply sick. It’s an inexplicable, primitive pain you feel when you see your kids hurt or wounded. Now she’s seen almost the worst of it. Pieces of skull exposed inside dangling chunks of hair and flesh.

The blood spread so far it looked (and felt) like I dumped a vat of pancake syrup on my head. The smell of copper and wine? Sickeningly sweet, familiar, and smelled so loudly I felt embarrassed that the EMTs would also notice the scent when they lifted me into the ambulance. I kept repeating,

“I’m sorry, mom. I’m so sorry.” It’s the truth. I feel crushing guilt that my mother had to endure or witness any part of my accident, for lack of a better word, that she had to miss my niece’s birthday party to ride along in a bloody stinking ambulance with me. Especially, that I know the thought of losing me, an injury that easily could’ve cracked my skull and killed me, or even the possibility of irreversible brain damage. The same few thousand possibilities and worst case scenarios that would have passed through my own conscious mind if we had switched places. As parents, we are cursed to imagine all the probabilities, even the smallest and least likely possibilities play in an infinite loop, an efficient torture, when our children become injured or have close calls. It’s beyond our control. Some sort of sick adaptation to ensure our babies survival by subconsciously scarring us, taunting us with the most horrific and unpleasant “what if” scenes over and over again.

Although unreasonable, likely a self-fulfilling prophecy or a projection of my frustration, I feel myself becoming disabled. They said I can’t lift, or exert myself, or climb, or swim. I can’t do anything that would put me and others in a hazardous position if I were to have another seizure. Each day goes by I am less able to lift, to exert myself, feeling myself wither away to nothing. A waste of flesh.

On the charming, sunny, happy Saturday afternoon of August 12th, around 2:30 PM, as I made one last trip to the car to grab my purse before my youngest niece’s birthday party began, I suddenly and unexpectedly became disabled. Without warning or medical explanation, I suffered a random, unprovoked seizure and sustained moderate head injuries when I swan dived head first into the asphalt parking lot of the Edwardsville Children’s Museum. I never had the chance to wish my niece a happy birthday. For the next 6 months, at least, I am medically banned from operating a vehicle. The neurologist at Anderson Hospital in Maryville has ordered me to avoid engaging in any activities that could potentially be life threatening in the event I have another seizure or lose consciousness, which are a common symptom during recovery from moderate to severe head injuries. 40 to 50 per

Just a few days before my first unprovoked tonic-clonic seizure, I was an independent, self-reliant, self-made woman, and strong mother archetype. Now, I rely on the charitable company of others to safely do simple task: shower, climb steps, or even go for a walk alone. By doctors’ orders, I cannot operate power tools, drive any motor vehicle, be present in hazardous work areas, or overexert myself for six months, and only if I’ve not had another tonic-clonic seizure. I have several focal seizures through the month. With medication, the focal seizures, or sleep paralysis episodes, have declined from three to five seizures a week to four or five episodes a month, which is a huge improvement.