diabola in musica

because perfection isn't easy

Threaded Conversations

HE: Read your blog entry. If I had solutions I would share them. Best wishes to your own sleep schedule, as well as your emotional, hormonal, psychosomatic struggles, or whatever other label you prefer to place on them. But I will say this: we, individually, do learn more from experiencing a thing than from simply theorizing about it.

ME: Thanks! You are super sweet. But qualia are still not real.

The follow-up appointment moved from last week to this. I wasn’t sure what to expect. I could be better, the same, or worse. But the report said that my intellectual functioning was remained stable for the past decade and the doctor said that it will continue to do so. Just as others have already said—just as I have already learned—any further improvement must be made on my own. My performance improved noticeably over the years, because I was given so much support and so many opportunities from family and friends. But all that work? That was mine.

When I stood to leave, I posed my final question: Would it be useful to seek therapy and medication for my inattention? She told me that I was so high-functioning, therapy would not be useful for me.

I left elated. I just had years of my internal experience validated and I also confirmed that I was not getting worse. I am just the same. I am not unravelling at the edges. I have may have a disability but it is concrete and defined and unlikely to change. It may seem strange that I’m happy with no improvement but status quo means stability. It’s grounding. It give me something to hold onto.

More, it means that my disability is real, that my personal experience with disability is real. My performance has been inconsistent, sometimes disappointingly poor and other times amazingly superb. I had improved, in a broad sense, over the years, but it was hard to determine why I was improving. Many times, I questioned whether I still had a disability. I do so well in some things but so terribly with others. I don’t know how to predict my performance. Is this disability real?

Yes, it’s real. It’s real.

We’re told that we don’t need external validation, but I think a better lesson would be not to expect it. We do need validation sometimes, especially when you have an invisible condition that manifests in very specific and subtle ways with much nuance. I don’t expect people to understand or notice, but I need at least one other person to tell me that they can see it’s real.

I see my psychiatrist next week about medication.

And that’s where we are.

My name is Amber and I have brain damage and fuck what you know about neuroplasticity because I just got an evaluation that recognizes my disability and confirms my internal experience and validates the years upon years of work to be as capable as I am.

I have learned to blend in as an overachiever. It’s been easy because that’s who I am but that doesn’t mean that I’m the person I was. Is that what people mean when they say that I am “better”? Because I am functional—and productive and savvy and dedicated—my disability is nonexistent. Because I am able to do what others can do, I must be able-minded. I must have recovered, fully. I must be “better”.

I want people to think about what they mean by “better”. What do you think I was? What are your standards? What are you forcing me to compare myself to?

My name is Amber and I have brain damage and fuck what you know about neuroplasticity because I just got an evaluation that recognizes my disability and confirms my internal experience and validates the years upon years of work to be as capable as I am.

I have learned to blend in as an overachiever. It’s been easy because that’s who I am but that doesn’t mean that I’m the person I was. Is that what people mean when they say that I am “better”? Because I am functional—and productive and savvy and dedicated—my disability is nonexistent. Because I am able to do what others can do, I must be able-minded. I must have recovered, fully. I must be “better”.

I want people to think about what they mean by “better”. What do you think I was? What are your standards? What are you forcing me to compare myself to?

It Gets Complicated

azathfeld replied to your post “Long Live The Queen - Act II”
Just as a counter-point, adult onset ADHD is a thing that happens sometimes without TBI. I mean, it’s a reasonable suspect, of course, just not necessarily the root cause.

As far as I know, there is no evidence for adult-onset ADHD without brain injury or disease. ADHD is a pediatric disorder that can go undiagnosed in childhood and then persist into adulthood. Though people are sometimes first diagnosed as adults, that is not considered adult-onset. However, there may be new literature in the past year I haven’t seen yet.

Still, whatever psychiatric disorder I have will be considered secondary to TBI because there was no diagnosis beforehand. Even bipolar affective, which typically has an age of onset in the early 20s, can’t be considered separately because mood disorders are common with TBI. Brain damage fucks with a lot.

Long Live The Queen - Act II

This Wednesday, I will be getting the first psychological evaluation in ten years. The first was necessary after the TBI. The second was required by BU to receive disability accommodations. I am getting the third because my psychiatrist thinks it be good to have an updated profile (and I am curious to see how far I have come) and I need it to be diagnosed with ADHD.

I’ve strongly suspected the disorder for years, just as I strongly suspected bipolar when I noticed that my mood swings have a recognizable pattern. But before I could tackle any other disordered behavior, I had to manage the moods. I had to not want to die. I had to survive.

Now that I’m emotionally stable, I can explore the other ways the TBI affected me. I do think that the TBI caused attention deficiency, but there is no way to tell. I have no evaluation before the TBI. There is nothing from the past to compare with the present.

To prepare for the appointment, I made copies of my previous evaluation reports. Some lines caught my attention:

  • [Amber] was a straight A student until her TBI. Amber has always tended to become overcommitted with school work and extracurricular activities. She began at BU this Fall and is taking 20+ credits of intensive classes.
  • Overall cognitive functioning [after her TBI] within the very superior range—Currently Amber exhibits very strong intellectual capabilities that are likely commensurate with her premorbid intellectual capabilities. Given that her performance was at the very top end of the measure used at this time, it is difficult to assess if there is any decrement in general intellectual functioning.
  • As Amber is a high achiever, she is likely to want push herself beyond her current limits and beyond what might be healthy.
  • Despite these helpful supports and services [from family and the office for student disabilities at BU], Amber is not doing as well as might be expected given her strong intellectual ability, academic, background, and work ethic [two years after her TBI].

Reading this felt like reading about someone else. Though I recognize who I was before the TBI and that person struggling to understand her life after, these people feel so separate from who I am now. I do worry about my academic work but my performance is no longer tied to my identity. It’s just the career that I aim to have. Now I understand that I am something other than my intellect. I know that I am something more.

Though these people are not me, I recognize my self in them. As Amber is a high achiever, she is likely to want push herself beyond her current limits and beyond what might be healthy. I laugh because I remember dismissing that warning, believing that stubbornness could compensate for disability. I also remember learning that there are some battles you simply can’t win.

Now I know my limits, and more, I am happy to work within them. But that ambition was present before the TBI and it is what drove me to challenge myself after. Now I work at a much slower pace, but I am still that ambitious high achiever. I think that I always will be.

Finally, I know who I really am.

Long Live The Queen

Perhaps I was already primed by that confession by an anonymous neuroscientist about having Parkinson’s disease. His present is my future, except that I don’t have PD but TBI and I am already public about the subsequent mental illness and disability. Sometimes I wonder about what opportunities are open for me and how risky an investment I am seen to be, but most days, I just worry about memorizing the structures in the basal ganglia. The damage, neural and professional, has been done, and I have made peace with my new self.

But that stability crumbled during lecture last week. He was teaching the hippocampus and closed head injuries and memory loss, and I secretly and quietly lost it. I saw across the projector screen how the grey flesh curled like a tiny tail. I heard about lesions and defective declarative memory and contrecoup injury. My life was presented from a textbook, a lecture, a dissected three-pound mass, and I couldn’t look at my self displayed for the class to see. Suddenly I was sixteen again, vulnerable and shaken and seeing and understanding. But at twenty-nine, I know how to let the emotions pass and not overwhelm. Still, I floated, numbly. There was no cold November bite seeping under my scarf. There was no warmth behind the apartment door. There was only the haze and apprehension. Something will go wrong because something is wrong and what is wrong is me.

I am centered again, but like that anonymous scientist I wonder about the self—my self—and what it is like to be shackled by your brain. Though unlike him, I already know. For years, I lived within three-minute periods, learning to shape those disconnected moments into coherence. I saw my ability disappear with my memory. I was someone but who, I was unsure. I knew that I was different, that I could never be her again. Even in that mental miasma, I understood the injury, but in my youth, I couldn’t accept its consequences. So I fought. I have come far. But I learned that there are some truths you can’t fight.

We are bound, by biology, by the natural laws of this world. Whatever the nature of the relationship between our brains and minds, they are intrinsically linked, and no metaphysical speculation should deny that the atrophy of the brain is the atrophy of the self.

I should know. This is my life.

Study Strategies

safno replied to your photo “Confession: I call the peduncles “pedunkadunks” in my head. …”

This looks like so much fun. Excellent investment.

The coloring book is fun, but it is also extra unassigned work for class. I couldn’t mentally model the structures until I started using this book. Reviewing scans just doesn’t work for me. I need physicality to remember.

Also, one page takes about an hour to complete. In that time, I can finish a chapter from one of my textbooks, but at fifty pages a chapter, I can’t absorb that amount of information well. I have always read quickly but now with a damaged memory, it is more difficult for me to process information as I’m reading. Then when I slow down, I forget how the sentence began. (I am so not shitting you about this.) So over the years, I developed different strategies to study. Making and reviewing flashcards work very well and study software is a lifesaver. Now spending that hour coloring instead of reading is the way I am going to ace this class.

Eulogy

I tell people that I am twenty-nine but I think myself thirteen. No, I am no adolescent but this second life feels so separate from the first, I can’t add the years together. She in those previous years is another person, with thoughts and motivations I recognize but are not mine. I am another, with different perspective. I no longer think that I am reclaiming the past. Instead, I am becoming someone, manifesting a person. These passions I may have shared with her, but their roots are different. They are mine, not hers. These accomplishments are mine. This growth is mine.

Maybe I finally have enough history to feel secure, centered. I have a narrative that explains who I am. No longer do I have to refer to another life to understand and explain the present one.

I don’t have to remember her anymore. Finally, I can let her die. Finally, she can rest in peace.

I, Reflected

If you have ever studied memory, then you would know about H.M., a man with profound anterograde amnesia. H.M., or Henry Molaison, obtained his condition after an unfortunate experimental operation to alleviate his severe epileptic seizures. In her book, Permanent Present Tense, Suzanne Corkin describes what she has learned about memory from working with Henry and his life:

Memory is an essential component of everything we do, but we are not consciously aware of its scope and importance. We take memory for granted. As we walk, talk, and eat, we are not aware that our behavior stems from information and skills that we previously learned and remembered. We rely constantly on our memory to get us through each moment and each day. We need memory to survive—without it, we would not know how to clothe ourselves, navigate our neighborhoods, or communicate with others. Memory enables us to revisit our experiences, to learn from the past, and even to plan what to do in the future. It provides continuity from moment to moment, morning to morning, day to day, and year to year.

[…]

Henry helped us understand what happens when the ability to store information is missing. He retained much of the knowledge he had acquired before his operation, but in his daily life afterward, he depended heavily on the memories of those around him. His family members, and later the staff at his nursing home, remembered what Henry had eaten that day, what medications he needed to take, and whether he needed a shower. His test results, and medical reports, and the transcripts of his interviews, helped preserve information about his life that he could not retain. Of course, none of these resources could substitue for the capabilities Henry had lost. For memory does more than just help us survive—it influences our quality of life and helps shape identity.

Our identity is composed of narratives we construct based on our personal history. What happens if we can no longer hold our experiences in our brain long enough to string them together? The link between memory and identity lies at the heart of our apprehensions about aging and cognitive decline. Losing our memory to dementia seems an unimaginable misfortune, yet this is all of adult life was like for Henry. As his present moved forward, it left no trail of memory behind it, like a hiker who leaves no footprints. How could such a person ever have a clear sense of who he was?

It is startling to read my thoughts and experience penned by a different hand. My condition is nowhere near as severe, but often I have wrote about how I didn’t appreciate my memory until I lost it, how my life became dependent on outside aids, how I feel different post-injury, how I didn’t have a sense of self for years. This is my life. And I’m finally seeing it elsewhere.