On the Aspie Side

Strokes & My Disappearing Act


On May 14th and again on June 3rd of this year, my mother had strokes. She’s alive, thank the gods, but she has very poor memory and possibly (probably?) dementia. It has been an awful time. I’ve been helping out as much as I can given that I am also disabled physically. But, it’s taken this long for me to talk about it. This has be an awful year. It’s been a horrible couple of years, but this was the topper.

On February 3rd of this year, I cut my flexor tendon on my pinky trying to cut a dog treat. Yah, I know. If I try to describe exactly how it happened, I may need a trigger warning even for NT’s. Everyone shudders. I had surgery to reconnect it on February 9th. I ended up out on leave after trying to go back to work. Then the leave extended as I was slated for back surgery in April. It was pushed back as I got other opinions and tried ablation.

What wouldn’t you do for this face?

At the end of February while my finger was still very much not healed, I received a renewal for my rental agreement in which my rent was raised $100, compared to the $27 dollar raise everyone else was receiving. This apartment had already sucked my finances dry. I had nothing more to give. I made the choice to move back in with my family. No surprises: my father was against it. My mother came to help me pack. 

On the night before the move, she stayed too late, and got home in the dark. She tripped over a bag she left on the ground and toppled onto the cement so hard she bounced onto the grass. Her femur cracked. Off to the hospital she went. The obvious choice was to blame me, but is it really anyone’s fault?

My fault for not being able to sustain an extremely exhausting, painful, and truly damaging job that I never should have been in in the first place? My fault for choosing the wrong apartment? My fault for needing help from my elderly parents? My fault for being born different and unable to find a career path that doesn’t kill me? My fault for not being diagnosed before I was? I didn’t set the bag down on the ground that she tripped over. I wasn’t even there. She chose to try to bring everything in that evening. She didn’t need to. I still blame myself anyway. It was my situation that had her out at night. 

The first stroke came a few weeks after she got home. She was in a panic to get to physical therapy. The therapist had my elderly mother doing exercises on the floor! I can’t! Was he aware of the meds she was on for her heart?! I don’t even know. I know she was a bit unhinged that day. Apparently, while on the floor she stopped making sense. The PT called 911. My father called me, and off I went to the hospital in my own panic. 

It’s honestly terrifying to see someone you love go through aphasia. Aphasia  is the inability to find the word to match the concept they want to express. It can be everything from incoherent babble to searching for words that are similar because the word has escaped you. She couldn’t think of my name. Heartbroken. I was just daughter. But, at least she knew who I am relationally.

I blame the alcohol, the warfarin, the poorly managed anxiety, and the mismanaged family money. The alcohol my mother used to calm her anxiety caused her atrial fibrillation mixed with panic over the house foreclosing for nonpayment for nearly a year and half and the crap drug warfarin she was stuck taking because Big Pharma is evil caused this bleed on the right side of her brain. But, as terrifying as it looked, she made a very fast recovery. In 2 weeks she was up and about. We thought she was coming home. But, by the 3rd week we got a call.

While they were waiting to put her back on blood thinners, a blood clot formed in her heart and travelled up a major artery to her brain. They were able to remove it, but the damage to this region of the brain was much worse. This second stroke was what really took her.  It destroyed her ability to form new memories (mostly) and to access what she has already there. She’s lost decades of memories. She lives in what appears to be a series of waking dreams in different ages. Occasionally, she’s lucid, and her bad days aren’t quite as bad as they used to be. But being here means watching my mother fight with dementia and with us for alcohol that would only hasten it. It’s torture.

I’ve been back and forth to hospitals, rehabilitation centers, and nursing homes for more months than I care to remember. I’ve been pushing my body to help and ending up on my back for days. I’ve been fighting through burnout while trying to deal with grief and literal pain. Strike that. I’ve been fighting to figure out my life while dealing with burnout, pain, and grief without the one person I need to listen. She may never have really understood or had the right thing to say, but she never walked away. I cannot say that about anyone else in my life.

My TDI ran out in August. I have car payments I haven’t made. Stress is mounting on where I will be if the house does indeed foreclose. I, also, won’t be able to pay my phone next month, and my bank account is now in the red. More stress. The only thing I do have is food stamps, and my car till I have to cancel my car insurance before I go further in the red. Who exactly can I talk to about any of this? My father? Oh hell no. My mother? Nope. My brother? Never. Friend? What’s that? My therapist? He went MIA on me right as I needed him most. He’s finally completed this “Telehealth” course so we can talk via webcam, but we’re waiting on his insurance… of course.

So, with all this going on my brain and my body have been in no mood to participate in anything beyond the needful. I’m in shutdown. I can’t cry. I wish I could. I spend many hours laying on my side staring at Netflix because I can’t move or think. I did spend some time, and money, on trying to start a podcast, but it just didn’t go anywhere. I couldn’t get the sound right without investing a lot of money and moving away from an airport. I learned that you really need to love it. I don’t. 

It wouldn’t change the money stress that I’m under anytime soon anyway. I’m mid-SSDI determination at the moment. It would really help to have a part time job to help right the financial ship, reduce the family obligations, and get myself out of my own head. It’s doing something very tangible to help myself through this quagmire.

ASD & Violation of Basic Human Rights

I have been reading quite a bit on human rights and disability both in the media and in philosophy, and I am appalled at the power the label “disability” has alleviated human beings of their agency and their rights.

brain-marionette

Human rights are defined universally by the UN with specific charters for women and the disabled. I urge everyone to actually look it up themselves. And, please note as well the countries that didn’t sign, didn’t ratify, and/or put tons of caveats.

The basic point is that each human is just by virtue of being human is entitled to universal rights.

The principles of the present [disability rights] Convention shall be:

  1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
  2. Non-discrimination;
  3. Full and effective participation and inclusion in society;
  4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
  5. Equality of opportunity;
  6. Accessibility;
  7. Equality between men and women;
  8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Here are some of the ways in which Autistics have faced human rights abuses at the hands of their caregivers and the public:

  1. Obsession with Cures/Pre-Natal Testing/Anti-vaxx: Hate of difference. This kind of crap LGBTQI also went through. Can we cure it? Fix it? Prevent it? They even get angry at Autistics for speaking out against this hate because we “clearly can’t understand” what the parents and their kid are going through, mostly the parents. They want to wipe us out of the gene pool by any means necessary, including refusing their NT child the life-saving properties of vaccines that have literally no connection to Autism whatsoever. Why? The medical profession has made billions on the idea that Autism is a disease that they could cure, but even they are now saying they cannot reduce Autism to a single cause or magic bullet product. The move inevitably will be toward acceptance, and hopefully a treatment for the worst co-morbids.
  2. Freedom to Have Independence Often Barred: Our ability to make choices and have independence is often tied to our diagnosis. We’re either denied rights because we haven’t been diagnosed, unemployed, and are stuck under the control of family or diagnosed and on disability, or can’t seem to get out of the cycle of bad employment followed by no employment. All of the above infringes upon our ability to lead productive lives. Granted the other end of the spectrum is a bit less and less able to make free decisions, but it should be fostered to the best of their ability.
  3. Reproductive Rights Taken Away: This was mentioned in a repugnant book by a Judith Newman (I refuse to plug her here), but I have seen numerous blog posts as well, mostly written by mothers who think their children will never be capable of raising a child. They may not entirely be wrong in all cases, but they should be given ample time to determine it. Yet, I keep seeing this discussion of wanting the right to force vasectomies and hysterectomies on Autistic children. The youngest I’ve seen was eight. They don’t even know what he or she will be like at 18 or 26 or 32 and yet they are ready to make life-changing procreation choices for them? Is this out of concern for care or is this out of fear of more Autistic people in the world?
  4. Growth into Adulthood Denied: In the same vein, removing the sexual organs before puberty would keep the child from growing further. At least one mother argued that keeping her child small will make them easier to care for as she grew old. Humans aren’t dollies to carry around. Disability doesn’t grant you the ability to alter someone in this way. What does this also say the mother? Our healthcare system?
  5. Children Taken: I know of one woman whose children were taken from her once she was diagnosed, although I admittedly don’t know the whole story.
  6. Disability Discrimination: “But, you don’t look Autistic.” “Autistics can’t [insert random life action here]. My friend’s cousin is Autistic, so I know.” “You can’t be Autistic; your eye contact is too good.” “You’re not Autistic, you’re just lazy.” “Retard!” “Weirdo! Freak!” We are constantly insulted or back-handed completed for masking well. We are called names for not fitting in. We can’t get the help we need without an embarrassingly patronizing display from healthcare professionals, and so on.
  7. Work Discrimination: The right to better ourselves is often denied us by hostile work environments that becoming more and more homogenized. Accommodations are woefully lacking and often insufficient. People gossip, manipulate, and back-stab normally, but they were worse towards those with invisible disabilities that they can make use or fun of. It’s exhausting. Trying to “pass” as normal doubles the damage, and further leaves us with severe self-esteem issues.
  8. Diagnosis Male-Oriented and therefore Male-Biased: Female diagnostic criteria for ASD is still not in the DSM. Still.

I’m not seeing any of these values in the treatment of those of us with hidden disabilities, with extra emphasis on ASD because of our social deficits. This is rather eye opening.