Saturday, August 1, 2015

Living without Disabilities in Second Life

 There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

Albert Einstein


          A recurring theme of mine as I blog has how Second Life (SL) interacts with Real Life (RL) especially the positive effects, Dr. Phil notwithstanding.  (Significant Other nods approvingly.) 

          When good things happen inworld, I believe that they happen for a reason. 

          I don’t believe in coincidence.  (More approving nods from Significant Other.)

          I had one of those moments a while back in SL. 

          A friend, XMarieX (“Marie”) Fairport, whom I’d met through one of Perryn Peterson’s
marvelous hunts replied to my recent story about the lost great castles of SL. 

          Marie is a designer and builder of jewelry, shoes, furniture, and other high end consumer goods inworld.  She also DJs with her SL/RL husband.

While telling me about the castle that had once been on her sim, Marie asked me if I’d ever thought about writing about people with RL disabilities who reside in SL.

          Actually, I had!  (I’m really doing great with Significant Other with this story!)

          Since my first wanderings inworld, I’d heard of residents who came inworld to enjoy and participate in the lives they can no longer have in RL.

          Going back before my time inworld, James Wagner Au’s classic book, The Making of Second Life, discussed how people with RL disabilities used SL to try and get back what they’d lost. 

          (Still haven’t read the book?  You should!  Helps to understand where SL began and how it’s wandered from its original purpose.)

          Many have come from RL with physical and psychological disabilities and have found that they can have their lives back inworld and more importantly they can be in communities as full and equal partners with no one knowing about their RL limitations.

          And, while I’ve blogged about people who had RL disabilities which they escaped from in SL, RL people with disabilities inworld had never been the theme of my writing. 

          Marie offered me that chance and I grabbed it! 

          I met Marie inworld and she told me her story which I share with you now.

          It’s a story of hope and inspiration.

          Before we began, Marie said she was sure a ”LOT” of my readers have disabilities.  I just didn’t realize it.  (More knowing nods from Significant Other, I’m getting the sense that I’m about to learn something.)

Maire continued by saying there are a lot of disabilities that one can't see in RL as well.

Not everyone with a disability is in a wheelchair or holds a white cane, she adds.

          Marie told me her tale.

          Almost four and a half years ago, Marie was "normal.” 

She went tent camping with her husband and her wee ones (as she likes to call her children), swimming at the beach, and ice skating in the winter.  

Before the wee ones came along, she went out dancing at clubs with her husband. 

All this in RL.

          Marie had been an insulin dependent diabetic for years, doing the math in her head, she comes back and says twenty-six years at the time.

One day, she had a really low blood sugar level, went to get something to raise her blood sugar, and ended up falling down an entire flight of stairs.

Marie no memory of that incident.

Her mother told her that Marie had emailed her about it but she has no recollection of doing that. 

Marie does remember sitting in a doctor's office with her husband, and him being told, "If she hits her head like that again, she might not be like the person you married, anymore."

Marie continues saying that she’d had a very serious concussion and totally messed up her lower back.

          The back pain wasn't “that” bad to start with, she says, but every day, it got worse.

Until she finally went in to have it checked out.

They tried physical therapy.

They tried traction.

They tried TENS units (the electric little "Zaps" patches).

They put a rod up her back (while she was awake) to try to zap her from the inside - only to find out her nerve endings are "wired" differently and it was zapping her ribs instead of her back.

Acupuncture was tried too.

As Marie puts it, “Oh golly, I tried everything.”

Only the pain got worse and worse.

          Marie tells me that while sitting here talking to me, she’s standing, sitting, focusing on this, focusing on what is out the window, doing everything she can to focus away from the chronic, never ending pain.

Once in RL, she used to go out ice skating, camping, and dancing.

Now she uses a walker with wheels and is able to walk about a block now before she can't do it anymore.

Marie pushes herself harder than any doctor.

The doctors yell at her for trying to do too much. 

But she doesn't want to live her life on pain meds, they tried that too and she lost two weeks of her life.

Marie was so drugged up, she doesn’t remember any of it.

Smiling, Marie added that she doesn't mean to sound rude, but her husband doesn't make a very good tooth fairy for the wee ones. 

          I’m got the sense as I listened to Marie of a wife and mother more concerned about caring for her family than how she feels herself. 

          Then Marie mentioned SL and her mood changed, fast and for the better. 

I quote,

“SL...  Oh my goodness!!!!!!!!

“I can DANCE for HOURS!!!!!!


“I go to the beach and SWIM!!!  I walk through forests!!!!

          “AND I focus on teeny tiny prims, most of the time, and it's like having blinders on a horse...   I don't see the pain, I don't FEEL the pain for 15 minutes at a time!!!!  I'm focused on teeny tiny prims, making jewelry, making something pretty... and the pain isn't there.” 

          (Emphasis is Marie’s.)

          Obviously, Marie feels pretty strongly about SL!

I ask if there is a big social dimension here for her and she replies that there is a huge social aspect.

          Marie explained that when she had been awarded disability status in RL by a judge, she had felt like someone had stamped “Disabled” on her forehead. 

          There was nothing there but she felt it anyway. 

          Inworld, Marie has none of these feelings.

          She feels like she did once before in RL.

          Marie does not act like she’s disabled inworld. 

          She knows there are wheelchairs, canes, and the like inworld but has no use for them. 

          Marie knows of no one with RL disabilities who acts disabled inworld. 

          (In fact, the idea for this story came from Marie when we talked about this aspect of being inworld.)

This is about Marie’s journey, her leveraging SL to fill in those parts of her life that are difficult IRL and SL is your support network!  Whether SL knows it or not!

Marie replies that she hadn't thought of it that way, but says that it’s totally.

She explains further that not only with those she talks to and listens to but what she does inworld too.

Anything to get away from the pain, if only for fifteen minutes is a great and wonderful thing for Marie.  Yes, she does have a bottle of heavy duty pain meds but her doctors are impressed that she doesn't dive into that bottle every four hours and she doesn’t because of SL.

          Marie has found both relief and distraction from her RL disability and pain in SL.

          Coming away from my interview with Marie, I realized that this is story is about her journey, her leveraging SL to fill in those parts of her life that are difficult for her in RL.

          I think about Marie’s final words to me before we made our goodbyes. 

          She asked to me tell my readers not to treat her any differently should they meet her.

Please don't ask if she’s in pain. 

Please don't "be careful" around her. 

If things get to be too much, she knows how to log off. 

Yes, this is a very tough woman who is soldiering on with her life in both SL and RL! 

Once again, we can point to another example of how SL is making a difference for the better in RL for someone!

I’d be remiss if I end this story without mentioning two things.

First, Marie always speaks in loving terms of her husband in both SL and RL, Kiva Fairport. 

Kiva has been there for her through all this and has helped her to find music inworld and to forget her pain.

Next, I want to mention what brought Marie out of what she calls the “Disabled Closet.” 

In RL, Marie is attempting to raise funds for a service animal which is very expensive. 

Shortly, I’ll be blogging about this fundraiser and how you can help Marie if you’d like to. 

So, please watch this space for more details! 

          Finally, I’d like to thank Marie for taking the time to meet with me, answer my questions, and for her amazing candor. 

          I wish her well in her journey!      

          As always, I’m grateful to all inworld for their kindness and time in stopping to talk with a stranger who was passing through their lives

My Twitter handle is @webspelunker.  Please feel free to follow me and I’d be happy to follow you.

I can be found on Google+ as webspelunker Ghostraven.

My flickr Photostream is located here.

On Skype I’m webspelunker Ghostraven.

I welcome feedback from readers, please either comment on my blog or e-mail me at . 

          If you would like to read about my other adventures in Second Life
please click here.

          Open roads and kind fires!


Anonymous said...

I have never been able to be very active in RL, I can't dance anymore because I broke my ankle in 4 places and had to have pins, which put an end to my ballet days. I have issues with walking, and sitting up, because I fell at my last job and broke both my neck and my lower back. I too try to struggle on without the pain pills and it's not easy. I am getting ready to go have the nerves in my back burned so even though they hurt, I don't feel them anymore, and I have never been thin, except when I was dancing. So when I sign onto my SL creation, and see her in pretty clothes I could never wear, and able to walk and skate and dance, I feel relaxed and taken away from the daily struggle of just getting out of bed to go to the bathroom. And I don't have *friends* on sl, I have FAMILY!

Anonymous said...

I have some serious physical limitations in RL, due to spine disease, diabetes complications, and am mostly home-bound and socially isolated. SL liberates me from those limitations and allows me to be my TRUE inner self. SL gives people like me WINGS! ~Starla Farella