My Constant Pleas
My name is Darcy Mohamed. I am like many other Americans. I love my neurodivergence. I am both autistic and ADHD. I love how I see patterns, logic and order in things. I love my quiet and not so quiet perseverance and patience. I love being able to visualize things in my mind and had to learn how to show my work. I even love the hyper bounce and toe walking. I had to learn how to not hate anything. I dislike fat and grease. I dislike chaos and disorder yet my bedroom has always been a bit like Einstein’s hair.
I have an Adrian Monk like list of fears. I do things in spite of them though. Being highly intelligent has helped. I try to concentrate on the science of airplanes and have faith in the pilot and mechanics when I must fly. It’s a struggle. A chipper, well rested pilot helps. I’m just saying.
I also have a predisposition for many other things. I’m queer which I love about myself. I don’t discriminate. I just have highly opinionated and vocal preferences. I also have ME/CFS, which is nicknamed the Living Death. I acquired it as a young child. I don’t remember a day without it. It permanently disabled me at 33 in 2008.
When I was taken on September 13, 2022, I was in the most severe category. I tried to see the beauty in my existence. I tried to have pride in my courage to persevere through what is objectively a horrific existence. I struggle even today but I am grateful to have found that cannabis products are allowing me to get better and better every day by leaps and bounds.
I was bedridden. I had to remain mostly in a quiet, darkened room with no movement. I was doubly incontinent. Anything with dyes, chemicals or perfumes would irritate me, causing me to be sick. I had to be careful about what I ate not only for the allergic like reactions they could cause but because I had gastroparesis. My stomach was slowing down and couldn’t process certain foods. I was trying to avoid the inevitable feeding tube.
The slightest bit of life would cause me excruciating pain. After a few seconds of standing upright unassisted, I would scream a primordial scream of pain and drop to the floor. I would have a violent reaction that I call, the purge. I would have to sit on the toilet while vomiting, urinating and defecating violently, sometimes for hours. I was always dehydrated.
Most people who have seen the parts of my disease that I try to hide are horrified by it. Hospice nurses who have assisted AIDS patients in their final days and also worked with patients like me, have equated the severity of my illness to the final weeks of an AIDS patients life but we can remain in that state for decades. I know what dying feels like. It’s not fun.
I am grateful that I have cannabis products which have greatly improved my life. I have worked hard at getting healthier under the worst possible circumstances and conditions. I am now able to cook, clean and take care of myself.
I do need assistance on occasion like everyone else. I’m not exactly comfortable with trying to drive again just yet. I still have bed days where I grouch about being stuck in bed when there are things to do but they are becoming fewer, Hamdulillah wa Mashallah. Thank God and God preserve it.
While I have overcome great odds to even be alive today, I cannot and will not forget those who did everything possible to not make this true. I deserve answers and justice for what happened to my mom and myself, not just for me but the countless others who are disabled and/or enslaved in Nebraska and throughout America.
The disabled are some of the most incredible people. We are given the worst of everything and make do with nothing. We can be incredibly clever, resilient, kind, generous and helpful because we understand the struggles of life more than most. We are also frequently bullied, abused and exploited. That is why DHHS is vital to people like me. We are the most vulnerable group. We are the ones who suffer and die because of budget cuts, red tape, greed, corruption and buffoonery. We are the ones who suffer and die as politicians debate whether or not we are even worthy of receiving medical care, food or shelter.
Just look to your own families’ vulnerable for the answers. Nebraskans can’t afford to work and take care of their vulnerable without any assistance, support and protection. It’s impossible. It leads to horrific decisions being made and incredible suffering for everyone.
My mother and I were denied protection and rescue from our traffickers by DHHS and law enforcement. My mother paid the ultimate price. I am beyond blessed and fortunate to even be alive. It’s a miracle.
I have been repeatedly gaslit, lied to and then my protests were met with stoney silence. I have been told repeatedly that I am not and was not a vulnerable adult because I am intelligent. The fact that I was bedridden and incapable of defending myself against our traffickers and caretakers is inconsequential in their eyes. The absurdity would be laughable if it wasn’t my life and my mother’s death in slavery. I presume that they expect the same as I miraculously did of all bedridden people.
We must remove our disability; become able to care for ourselves; convince our traffickers or abusers to leave; fight for our very existence alone; pay for the privilege; pay the consequences of their actions; lose absolutely everything, for me, personally over $500,000 in assets, my mother’s life and so much more; and still have absolutely no justice nor protection from abusers.
I have known able bodied people who couldn’t accomplish what I had to do. I had to do it while horrifically disabled and tortured. It’s a miracle that I am alive to say the least. I don’t remember this as being the goal of DHHS; law enforcement; Nebraska nor America.
I simply ask the same as I have for years. Please give me answers and justice. Please assure us, the vulnerable; those who love us and care for us; and all Americans who could become disabled and/or enslaved at any time that we will be protected from abuse and exploitation; that we will receive justice when and if it happens; and that we will receive the necessary assistance to actually live the Good Life in Nebraska or anywhere else in our beloved country.
I thank everyone who listens to my pleas and acts accordingly with the same respect, kindness, compassion and understanding we all deserve. I have faith in you, my fellow Americans and humans to do what is right because I have faith in God.
God resides in the heart of every creature, great and small, Mashallah. Allahu Akbar, God is greater though. We have God’s grace, mercy and justice within us all. We all have a bit of shaytani, my demon child within us too but our better nature, our more God like qualities usually prevail, Mashallah. It is why I love, respect and pray for all using the opening verse of Al-Quran.
Ihdinas-siraatal mustaqeem, Siraatal-lazeena an'amta 'alaihim ghayril-maghduubi 'alaihim wa lad-daalleen. Amin.
Guide us to the straight path: The path of those upon whom You have bestowed Your favor, not of those who have evoked Your anger or of those who have gone astray. Amen.
Sincerely,
Darcy Mohamed
