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I have used a wheelchair for the past two decades; I'm paraplegic as a result of a spinal cord injury sustained as a passenger in a motor vehicle collision.
Within two years after my initial injury, I developed chronic osteomylesis from a hospital-acquired infection. Hospitalized for the better part of the next three years, I underwent dozens of surgeries to remove infected bone and treat multiple softball-sized wounds. Lacking the bone structure to sit symmetrically, my spine degenerated - a condition known as functional scoliosis.
My kidneys have struggled from long-term antibiotic use and multiple drug-resistant infections; these bacteria rapidly produce staghorn struvite stone. Despite on-going surgical intervention, I am almost always carrying a heavy stone burden - resulting in thinning, or atrophy. There are a number of consequences to declining kidney function - in my case, one of the more significant had been bilateral swelling, known as lymphedema but more recently complications with my heart and other organs have emerged.
I'm an extremely low-income, disabled mother of a young child. Without warning, Bill Mountjoy cancelled my health insurance (almost two years ago) and that decision has resulted in a significant increase to my medical complications. Since November of 2020, I have had to take on most of my mother's complex affairs, without access to any of her records, while relying on libraries and other public spaces for access to a computer and the Internet. For over three years now, I have been in entangled in a lawsuit with Bill Mountjoy that currently has me in the midst of being evicted.
My life is incredibly challenging. It’s overwhelming - almost all the time. It’s tough - really tough. It’s often all I can do just to make it through the day. I am struggling to a point that is almost incomprehensible. But – it isn’t all difficult. There's a true freedom in having nothing left to lose. It's something I don't think I could have even completely understood before all this happened. There is so much joy in the absence of Bill Mountjoy from our everyday lives - even in the face of the most formidable challenges.
When Bill Mountjoy cut off my water last winter, we melted snow in buckets by the space heater so we could clean up and occasionally flush a toilet. We have no heat and that totally sucks; yet, my little girl and I hug each other a little tighter under the covers, before we fall asleep, all winter long. We have no air conditioning either and that's not at all fun; In combination with my kidney issues, I have been dealing with heat-related illness non-stop. Nevertheless, the giggling and hysterics of our impromptu multi-generational family water balloon battle was unforgettable. These adventures are our new normal. Being resourceful around-the-clock is draining, but it's also empowering.
My mother genuinely smiles now. When she laughs, her grin is so huge that her eyes disappear. Despite knowing her since the day I was born, I had never seen her real smile until that monster was out of our lives. Now, I even see it when we are waiting for the bus. Sure, we used to smile for the cameras and everyone else, but it was a life of make-believe. Living with narcissistic family abuse is simply an existence - void of any emotional support whatsoever. We existed for the sole purpose of making Bill Mountjoy look good. Anything else was entirely unacceptable.
I want to share the struggles and set the record straight for those who want to know my side - and, I also want to show the little celebrations along the way. We have a blast, without spending a dime. We live for each other and we know what matters the most. Sometimes I find myself wrapped up in this spot that often feels so inescapable; when I do everything I can to make sure we have some distance, our life is amazing.
It's not at all that I wouldn't prefer that things were different. My mother worked extremely hard her entire life. I find it nauseating that Bill Mountjoy has essentially robbed her of her financial security - leaving us to fall on the social safety net that is public assistance. It is frightening to have to juggle simply to have our basic needs met. When my daughter approached her 7th birthday earlier this summer, she asked me why she has only ever had a cake for her birthday while other children get presents. When anyone asks my little girl what she wants to do when she grows up, she says she wants to earn enough money to buy mommy a new phone and wheelchair. It is so touching, yet beyond heartbreaking. That being said, we have incredibly full lives. We go to museums, parks, and libraries whenever we can but we also make pancakes and pillow towers at home. When my mom, Olivia, and I roll into a gas station convenience store, we manage to have so much fun that all the other customers are smiling and laughing along with us; some even remark that running into the three of us was the most uplifting part of their week - or even their year. It doesn't matter that we will probably have dinner out of a vending machine - we have each other and that's all that matters.
Whispers and kisses on mommy's lap: Priceless.
My mom used to stop by 402 Roland Street SW almost every day but she never stayed too long. She did give us some financial support, as well - for example, she had always paid my phone bill. That being said, most of her assistance was directed towards Olivia's needs. It always hurt me that she wouldn't just stop and spend time with us, though. These days, she tells me that it was too difficult for her to block out the reality of what she saw in our home. Knowing that I couldn't even bathe in this house yet she went back to sleep in her luxurious estate made it hard for her to pretend that everything really was okay. It's a little ironic because we were so much better off then but yet I'm glad to know it wasn't me that kept her away.
From the moment she moved in, my mom has commented on how fun it is here. Over the past four years, Olivia has taught my mom all about library cards and bus schedules. My mom had never ridden a roller coaster with me; Olivia tells me she holds on super-tight and screams so loud! The two of them race down all the big slides when we can get to a water park too. It doesn't matter that we're wearing second-hand clothes or sleeping in the car because we ventured out on the open road but only had enough money for gas. When I was a kid, I could not have told you what karaoke meant, but my mom and I sure could sing pretty much every Cyndi Lauper song at the top of our lungs while she drove around with me in her silver 560 SL Mercedes-Benz. Five or ten years ago, I would have told you those days had long past but it turns out they were just lost - and we found them.
Yes, there are many days where we find ourselves in tears over legal challenges. Sometimes every hint of joy stops for weeks or even a month or two while I wish I was not even alive but find myself so consumed with trying to secure another loan to do anything about it. I find myself falling down dark never-ending hole. Sometimes I manage to convince myself that I will be able to come up for air soon, but - no, that was just the delusion of cast by a small break or minor victory scattered through the chaos. Without fail, agony is lingering around the corner waiting to slap me back in the face even harder.
And, we absolutely have had more medical setbacks than anyone would wish on their worst enemy. My mom's digestive complications alone can grind her to a halt. It's difficult to plan too far in advance when an outing can pivot into 72 trips to the restroom and her inability to absorb enough nutrients is slowing her down considerably. I have, also, never been in worse health and had such limited access to medical care that it's almost like living in another country entirely. Simply having multiple people in a household with high medical needs and complex disabilities often means someone doesn't get what they need and, almost always, that someone is me. I am so exhausted and worn out. I feel like I have aged at least a decade with each passing year and, now, I constantly think about the trauma my daughter with endure if I can't figure out how to survive through her childhood and she is left to care for my mother when someone still needs to be watching out for her. When Olivia was born, I thought I could give her a better life than I had but it's clear now that will not be possible. Olivia is loved beyond measure but she has also cried because she is hungry and cold and that is an entirely unacceptable position for any child to be in. (One positive aspect of my own childhood is that my physical needs were always, unquestionably met in abundance.)
However, my mom went from being in prison (albeit a fancy one where the uniform consisted of high-end fashion and the compound was a multi-million dollar designer home on the Potomac) to getting out of jail free in the torn and stained rags that others are throwing out. We will never stop laughing about the time my mom was mistaken for being homeless and given cash by a kind stranger! Or the time Olivia and my mom tried to learn all the lyrics to Dolly Parton's "9-to-5" in under an hour so that they could put on a concert in a Krispy Kreme store for a few free donuts. My mom and I drove all around the Midwest and East Coast last summer - sleeping in the car and cleaning up at rest stops; next time, we're taking Olivia too. We already venture into DC whenever we can; we all love the District and dream about, one day, being able to live in the city ourselves. Olivia has perfected the ability to cross busy streets during peak traffic - even if her shoes fall off in the process. We've raced through downtown DC like we were qualifying for the Olympics in order to take a family selfie in front a chicken's rear end because it seemed like a great idea at the time. We turn even the most simple things into grand adventures - like sneaking in Costco without membership cards because a $10 pizza is the least expensive way to go our to eat on a special occasion. You can't do things like that if you are consumed with fitting in amongst your shallow, misogynistic neighbors. Bill Mountjoy used to do things like that too - certainly there were some interesting times with him, yet his motivation was the satisfaction he derived from saving a dollar. I'm constantly working to be more imaginative and redefine our lives around each other because we have no other choice but to move forward.
My relationship with my mom was been damaged so much by her involvement with Bill Mountjoy. I'm not sure that will ever be repaired. Sometimes I still find myself holding back tears from the past because I let myself reflect on the ways Bill's selfish needs were prioritized over my well-being. Also, the situation with Bill led my mother to detonate an atomic bomb over Olivia's father and flee the scene - leaving me to decontaminate the radioactive fallout. Although I do now understand why she felt she had no choice, I don't even know how to begin to forgive something so intentionally devastating.
I find that I both hate that she left me to clean up a mess she should have resolved herself -- yet I simultaneously hate that she was even in that nightmare in the first place. My daughter, Olivia, doesn't have memories of Bill Mountjoy casting a dark shadow on her life and, as a result, even though Olivia has suffered considerably from the court battles and housing insecurity, she is a lot closer to the "two peas in a pod" bond with her &ma that I used to have with my mom. And, that is why I keep going even when it takes everything I can not to just let go.
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