Neuropsychologist Diagnoses
During one of my recentish stays at Baylor Hospital a social worker came to my room. This isn’t unusual. What was unusual was that she came to me to tell me that I qualify for mental disability. The social worker told me I qualify for disability because it can help me access basic health care. It can also help me pay for medical care to deal with my increasingly problematic pancreas. She has already set up an appointment for me at the psychiatry clinic in Parkland.
I qualify for mental disability because I have documented medical records that show I have severe atrophy. Brain damage. People with cerebral atrophy, lose brain cells (neurons), which causes connections between their brain cells. Brain volume decreases. This loss of brain volume can lead to problems with thinking, memory, functioning, and —
The greater the loss, the more brain is fucked. This is a phrase that plays on an infinite loop inside my skull. Every time I look for some item I put somewhere I put myself down for being such an idiot. Then I remember that my brain is fucked. But. Life will go on. And I'll forget that.
Anyway. Back to Saint Mary’s. Anesthetics activate memory-loss receptors in the brain, ensuring that folks don’t remember what happens during surgery. The activity of memory loss receptors remains high long after the drugs have left the patient’s system, sometimes for days, sometimes longer. We all be unique. Oh! More fun. I almost forgot — get it?? I almost forgot??? Awhile ago I was hospitalized for hepatic encephalopathy, which is a brain disorder that happens when the liver is fucked.
Loss of brain ability occurs when the liver can't remove toxins from the blood. This is called hepatic encephalopathy (HE). This problem occurs suddenly or it develop slowly over time.
The cause for my high ammonia levels in my body was from iron buildup in my liver. (Also, I have hep C and hemochromatosis.)
Hemochromatosis is a disease that’s easy to keep tolerable. The main treatment is phlebotomy to remove iron, through blood. But, this easily accessible treatment is only easily accessible to people with health coverage. I am not one of those people. Ergo, my body is failing from iron overload and is trying to poison me in myriad ways.
The hepatic encephalopathy incident was so scary I remember a lot of it. Like being literally chained to a hospital bed so I get ammonia drained, and…meds pumped in. I was so fucking fucked in the motherfucking head at this point—I refused to stay in bed. So the big guns—aka needles—were brought to fight the battle to fight the battle with ammonia brain. Anyhow. I’m mental. Je suis officiellement fou. And I was scared.
So I’m going to knit. A lot. And think about being officially mental. Mentally disabled. But hey. Balls to the walls, ammiright?
Knitting, Purling & Amnesia
I am my world. My spinning world of love and grief and memories. The world of my words. The world of my worlds.
At first, it’s a party. People come over. They bring food and flowers and booze. They clean. They cook. "Hey there, how's everything going with you?" They ask because they truthfully want to know. They carry books and ask you to go on walks. They plan the memorial. They stay by your side on that day of celebration. Like a birthday party, a memorial celebrates a life.
The memorial is the last phase of people gifting you their time. They must get back to their lives. They must get back to the people in their lives. Friends visit only on weekends. The phone rings less. The walks get shorter and scarcer. The carefully wrapped casseroles stop appearing in the kitchen. The flowers start to wilt, dripping their leaves on the tabletop.
How are you doing? The soft voices that ask the caring questions start to evolve in tone, speed, intonation. Topics. Conversations evolve into the talk of life. The lives of the living.
But I can't, I do not return to my life because my life isn't there anymore. And never will be again. My lives. My worlds.
My friends go out for dinners. They take day trips to lakes. My friends eat at home or the home of friends. They return to their worlds. Silence now permeates what used to be our home. My house is now empty of noise because it is now missing my favorite sound. Now nothing seems right.
Now. For whom do I cook? Who do I cook with? How do I comfort others? How do I adjust to a new life without that person's existence? In the beginning—disbelief, shock. A phone that becomes a brick being held in my hand. A brick no longer brings me silly messages from the now-dead person. I start feeling more feelings. These are feelings that slowly start to whisper away. They fade as I acclimate to what's missing from my life. Missing from my life.
Then—then things start seeming kinda normal. I notice that the world is continuing. I cry less. I lol. I listen to a podcast. I eat breakfast. Then—when I'm kinda functioning without that constant feeling of emptiness, loss, grief—that is when the death hits me. I've returned to the normal headspace.
Life goes on. So do I.
I no longer have shock or disbelief to numb me. I no longer have the fresh, bloody cuts to bandage. All I have are what's under the now scarred skin: severed arteries and punctured organs and smokey images. Those things haven't started healing yet—and I know that the deepest cuts never will.
I knit. A scarf for Darlene. A warm beanie for Marc.
I stare at the fuzzy ball of yarn, next to me, on the sofa in my Studio. The soft, warm wool I'm gripping is the only reality I can touch. I’m navigating the unfamiliar terrain of amnesia. I am knitting together a semblance of connection, one stitch at a time.
AMNESIA AND REAL LIFE
I am my own world. My spinning world of love and grief and memories. My world of my words. My world of my worlds. My ether, with floating, evolving, melting snowflakes.
At first, it’s a party. People come over. They bring food and flowers and booze. They clean. They cook. How are you? They ask, because they truthfully want to know. They bring books and ask you to go on walks. They plan the memorial. They stay by your side on that day of celebration. Like a birthday party, a memorial celebrates a life.
The memorial is the last phase of people gifting you their time. They must get back to their lives. They must get back to the people in their lives. Friends visit only on weekends. The phone rings less. The walks get shorter and scarcer. The carefully wrapped casseroles stop appearing in the kitchen. The flowers start to wilt, dripping their leaves on the tabletop. Like snowflakes and people—flowers melt.
How are you doing? The soft voices that asked the caring questions begin to evolve in tone, speed, intonation. And topics. Conversations evolve into the talk of life. The lives of the living.
But I cannot, I do not, return to my life because my life isn't there anymore. And never will be again. My life—my world— has been demolished.
My friends go out for dinners and take day trips to lakes and my friends eat at home, or the home of friends. They return to their worlds. Silence now permeates what used to be our home. My house is now empty of noise because it is now missing my favorite sound. Now nothing seems right.
Now. For whom do I cook? Who do I cook with? How do I comfort others? How do I adjust to a new life without that person's existence? In the beginning—disbelief, shock, a phone that becomes a cold thing that no longer brings me silly messages from the now dead person. I start feeling more feelings, and they are feelings that slowly start to fade as I acclimate to what's missing from my life every fucking day.
Then—then things start seeming kinda normal. I notice that the world is continuing. I cry less. I lol. I listen to a podcast. I eat breakfast. Then—when I'm kinda functioning without that constant feeling of emptiness, loss, grief—that is when the death hits me. I've returned to the normal headspace.
Life goes on and so do I.
I no longer have shock or disbelief to numb me. I no longer have the fresh, bloody cuts to bandage. All I have are what's under the now scarred skin: severed arteries and punctured organs and smokey images. Those things haven't started healing yet—and I know that the deepest cuts never will.
In the passenger seat, I see the stars come out of the sky, yeah, they're bright in a hollow sky you know it looks so good tonight.
My sky is exploding. My stars are combusting. I am a passenger. Newly healed and freshly sore. Waiting for my stars to come out of my sky.
And I knit and I knit. A scarf for Darlene. Darlene will smile. I'll feel her smile in the yarn coming alive in my hands.
I can not, I do not, return to my life because my life isn't there anymore. And never will be. My life—my world— is lost and I’m still trying to find it.
My friends go out for dinners and take day trips to lakes and my friends eat at home, or the homes of their friends. Somehow, they're still living lives. I envy that.