let me be explicitly clear about what i was trying to say in this post, since people in the notes are being so weird about it.
I have memory issues. I’m barely 25. I have similar-age friends and loved ones with memory issues. This makes it surreal to see others talking about memory loss as ~a scary thing which only happens to old people with Alzheimer’s and dementia~. Just because you have not personally heard/seen this being said does not mean that I and others have not. Hearing “you’re too young for memory issues” is a familiar sentiment for many of us.
It is surreal because memory loss is already many of our day-to-day realities. At no point in my original post did I say that it is not a scary experience, nor do I say that Alzheimer’s and dementia are not confusing, frustrating, and frightening for the person experiencing it, and their loved ones. Just that it is strange to me when folks my age act like memory loss is something none of their peers already experience.
There are many causes of memory loss, many of which can be experienced at any age. Others I did not mention include: any illness which causes inflammation of the brain, seizures and epilepsy, stroke, drugs and alcohol, ADHD, tumors, lack of oxygen to the brain for any reason, Lyme disease, syphilis, AIDS/HIV, negative reaction to medications, sedatives especially, even nutrient deficiencies. The list goes on.
And thus, the many negative side effects of memory loss can be experienced alongside most any cause of memory loss, not only Alzheimer’s / dementia, as many people in the notes have for some reason implied. These side effects can include frustration, confusion, anger and rage, emotional numbness, hopelessness, the falling apart of relationships, higher risk of addiction, sleep issues, difficulty communicating, difficultly navigating daily life, difficulty concentrating, mood swings, social withdrawal, loss of independence, etc. etc. etc.
Memory loss is a disability. Disabled people are all around you. Disabled people are your age. You could become disabled today. Every person on this planet will either die first, or become disabled in some way.
Like, don’t get me wrong. Memory loss is scary. I am scared. (Confession, yes, most of my disabilities scare the shit out of me! Surprise!) And, y’know what? If you know me, you know I love the horror genre, so of course I have to work that in here somehow. Because we’re talking about fear, and I do actually love when memory loss is explored as a fear-causing experience in horror media. Because it is scary! It is strange, and isolating, and terrible, and upsetting! But, y’all. Please. Fear is not all that we are. And you are not helping us when you view our experiences only through a lens of fear. Because, in real life, outside the lens of horror movies?
We are your friends. We are your your family. We are your peers.
Please stop using this post to tell me how difficult your loved one’s memory disorder has been for you and your family. Please stop telling me you would kill yourself if you are one day diagnosed with Alzheimer’s or dementia.
I am so sorry so many of you view your loved one’s and/or medical patient’s memory loss as an experience you are also a victim of. I am sorry it has been difficult for you. But have you considered how those people would feel, hearing you talk about them like this? How much it hurts to be discussed only in the context of pain, horror, and grief?
As I have made it very clear, you all are speaking to someone who is already living daily with memory loss and the side effects. Most of the notes on this post are from others with similar, and many even more difficult, experiences than mine.
Do you not understand why it is fucked up for us to hear constantly about how much of a burden our experiences are? How hopeless our situations are? Memory loss is not the end of our lives. And you are not helping when you remind us how scary it is! We fucking know! But this is, in fact, is our day-to-day experience! And your fear of our reality does nothing to help us move forward.
Even if we cannot remember the names or faces of those offering their care— even if we can no longer fulfill the role we once played in your life, let alone our own...
We are still deserving of our futures, whatever they may hold.
Futures in which we may not be able to remember yesterday, but can at least look forward to tomorrow.
