Check out Tom’s channel on My ASD Journey.
As part of Thomas’ journey of self-discovery since his ASD diagnosis – “Discovering Autism” became a way to share the experiences of individuals with autism and those who’s lives have been touched by autism, to promote a better understanding of autism by all. You can see other interviews and more about his experiences at “My ASD Journey” on YouTube. You can also see how he expressed different thoughts about becoming autistic in his “posters” on FaceBook called “Signs of Autism”.
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.
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.