When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Sunday, August 7, 2011

Fear of the dementia label

Yesterday I wrote about the fact that most of my social life occurs on Second Life.   This is because since I am primarily homebound, 98% of the time my only in person contact with other humans is with my roommate/caretaker and since she is having a rough time with a variety of diagnosis herself including fibromyalgia and migraines, there are days when I have little to no contact at all with her as she is very sensitive to light and to sounds including the human voice and the sound of my typing.   Thus she often escapes to her quiet, darkened room for large periods of time to seek relief from the pain that sound and light exacerbate for her.

Thankfully, I have always easily made friends and have developed a wide social network on Second Life since 2005.   Now comes the hard part.     Only a fraction of those who know me on Second Life are aware of my dementia diagnosis as online it is much easier to disguise.    It is not that I want to deceive people but that I am all too aware of how people react to the word "dementia."   I want them to get to know me first before I have that label attached to me.

The hard part?   I am reaching the point where it is becoming harder to "appear normal" even online.     When I write a blog post, I have time to proofread it and catch at least most of my errors.   When you are in an ongoing conversation on Second Life things are moving much faster (especially when in a chat with multiple others) and there is far less time for proofreading and editing what you type.   Some errrors can be written off as normal typos that everyone makes but things like using the wrong word for something are more noticeable indicators that something is not as it should be.

Additionally, as my math abilities continue to deteriorate, I have had more often to reach out to others for assistance with basic things (such as yesterday having to ask someone to help me convert the time difference between Hawaii and Florida so that I could understand when an event in Hawaii would occur in my local time).     "Normal" people don't need to ask for that type of assistance.    "Normal" people also can do things like understand how to solve the puzzles in some of the Second Life games such as Tiny Empires.    When others realize that I cannot do so and try to explain to me how the puzzle works, they hit up against my inability to comprehend what they are saying and realize that no matter how functional I may seem to be otherwise, I am not "normal."

So I have reached the point of deciding it is time for me to come fully "out of the closet" with my dementia diagnosis.   Instead of continuing to try to appear "normal," which is becoming more and more of a struggle for me now, I am blogging freely about my diagnosis and sharing my blog with many who have known me online for years without knowing I am a dementia patient.    I am hoping that who I am, who they have known for years, will count for more than the dementia label and friendships will continue as they were for as long as I am able to remain online.

4 comments:

Karen said...

I certainly hope so that people will respond as you hope. I think most will, and if some of them go silent, reach out to them. They need to understand that you're still you, that you've had the diagnosis for a long time, and although you might be very aware of the things that slip day by day, they really won't notice until the changes are more obvious. Remember, nobody's looking at you, they're all thinking about what YOU think of THEM. And if someone can't deal with it, screw 'em.

Stumblinn said...

*chuckles at your philosophy but agrees with much of what you said other than the very last line*

For those who cannot handle the changes in me, I need to release them from my life with love and without resentment, reminding myself that they are just not in a place in their life where they can accept this at this time. It may be because they fear such changes in their own life and thus cannot deal with it in another or because they are having or have had someone close to them go through it and they cannot handle going through the pain again.

Whatever their reason though, the most important thing (for their sake and my sake) is that I not allow myself to react with negativity (anger, resentment, etc.) as doing so is harmful to myself and to those around me, and I believe, also to the Universe in general - there is enough energy from toxic emotions floating around out there, without me adding more.

sleepytime_gal said...

labels can work in other ways too. I have had to step out from behind my label as "trusted professional" where I was used to being given the benefit of the doubt when in uniform, to just me, an overweight aging female, subject to judgements and prejudices. I have found that if I can step up to the task and reach out to people anyway, most will respond in a positive manner. but it is HARD to adjust your approach to people after all these years hiding behind a label.

Stumblinn said...

The important thing is your awareness of this. One of the biggest obstacle to moving forward can be not understanding ourselves well enough to know what is holding us back. Once we know that, we have the option of working on making the necessary changes in ourselves.

"A journey of a thousand miles begins with a single step." Lao-tzu (in the Tao Te Ching)