Category Archives: online

creativity, online, recover, Second Life, stroke, virtual

From unexpected places

~SL10B
Me with an exhibit I built inworld

As you may know, I have been somewhat active in an online, virtual world where I have friends from around the world and where I can exercise my creativity and socialize with adults in a way that doesn’t exceed my capacity. It’s been a very very helpful place.

What works about this for me is my ability to control it all. Given that I can have a seizure if I am overstimulated or tired, this virtual world allows me to manage what I see onscreen to reduce visual stimulation; turn off sounds to reduce auditory stimulation; and, when I need a break, I log off! It’s that easy.

The people aren’t as easy to leave, but that’s another story.

As with any collection of people there are all kinds of different types… some you wish you’d never bumped into and others who change your life in a positive way. Over the years of being there, I have now learned to be more wise about the people I keep company with online.

Anyway, after much time, I am now coming into my own. My avatar is 3.5 years old now so I guess, in that world, I am maturing beyond my rebellious teenage time online. [My avatar was always an adult, but maybe the avatar operator -me- was a bit immature.]

So now I go to live music events, poetry readings, classes, lots of things that are the “real Jen.” Sometimes I even go dancing or play cards with friends.

One thing I never expected was the spiritual side of this online universe. At first, when I logged in, I could leave behind my real life obligations and escape… but it wasn’t long before I learned that that was a false front and it was doing a disservice to myself. It also made me start to feel a bit frustrated. I couldn’t put my finger on it at the time but I was losing touch with myself in the sense that parts of me were feeling silenced and pushed off to the side.

Sadly, even my faith seemed to be left behind when I logged on. I wasn’t faithless. I just got swept away by the virtual world and the freedom of trying on new lives. It’s complicated and likely non-sensical to those of you who have never spent time in a virtual environment, but it’s a very interesting social … experiment (for lack of a better world).

For now, let me just say that my most recent joy was finding some kindred spirits from around the world who are also trying to actively exercise their faith and spirituality in this surreal environment. I stumbled across the place quite by accident but I have been going there on and off for more than a year now, I guess.

Viriditas
A photo I took inworld where we meditate

Monday to Friday there is a morning, 30-minute, silent meditation at noon (my time – which is 9AM inworld). There is another at midnight (9PM inworld). And on Sundays there is an 11pm session.

I have recently offered to help with the mornning sessions since I am available and can help without a commute! What a treat.

But the thing that is so meaningful is the people I meet and “work” with. All magnificent people who are very inclusive and quite inspirational in their own ways.

Maybe someday I will get brave enough to tell you more about it. But for now, I offer this virtual peek into a place that lets all the abled and disabled participate on equal footing.

Be well.

creativity, hope, online, recovery, strength, stroke

A New Year and a return to the keyboard

4 Comments

First of all Happy New Year to you all… and it was so nice to begin this project but as you can see, the holiday season and the pressures of recovery took me away from writing to you.

Know that I am still taking it one step at a time.  🙂

For today’s posting I am going to share the contents of an e-mail I sent to the Acquired Brain Injury clinic where I will soon be going for assistance with rehabilitation…

They asked for input into my areas of challenge. Here is my response:

“My problem areas are very clear to me:
  • I cannot manage telephone calls (too difficult to word find in addition to listening to a phone conversation – seems easier when I am face-to-face with someone). If on the phone I require to take notes or I will not be able to recollect the conversation. I also have to cover my eyes and plug the free ear so that all my focus can be with the phone.
  • I cannot manage distractions at all. I have had to ask the boys to line up to speak to me and if the dog barks or phone rings or I am trying to type something there is no room for anything else at all. When there is alot of stimulation I feel panicky and lost. It also makes me irrationally angry.
  • I cannot watch TV due to jumpy edits and rapid or frenetic content and I need silence to concentrate on anything (on a good day music can be tolerated). I have seen a movie with my Dad and enjoyed it very much so that was nice.
  • I cannot read due to distraction and even in silence I have to reread paragraphs many times to ensure that i can remember it for a little while. Similarly to the telephone call, shielding my eyes and blocking my ears helps to some degree.
  • I have a great deal of memory problems (short term and long term). My husband will have to tell me occasionally that we have already discussed something recently.
  • my visual memory is much better than recall for oral or e-mail conversations so i may not think i have been somewhere but when i see it I can recall it
  • I have many word finding challenges and work hard at it with strangers etc but am at ease with my family so I just say stupid things to them like asking them to clear the table put their doors (not dishes) in the dishwasher. We all laugh but it happens alot as the day moves along.”
So… what else is new?
In the interim including Christmas and New Years, I had an MRI, weekly blood work and other health care appointments. For those of you who understand INR (my weekly blood work) I am not yet stabilized. Last week I was down to 1.4 whereas a few weeks ago I hit 3.9 (the “safe range” goal is between 2 – 3). The number refers to the number of seconds my blood takes to clot. Too short is a risk for blood clots and too long is a risk for internal bleeding.
At my MRI, I was told that we all have two major drainage veins from our brain, my hemorrhage was caused by a blockage on the left drain… the blockage is still there. I will have another MRI to see if it has cleared within six months, if not, I am advised that it will be unlikely to clear. I am not too worried about that as there is nothing anyone can do and I am still alive!!!  Anyway, there is still damage to the left side of my brain and my right side drainage vein is doing the work for both sides… (I will try to have the image scanned so you can see). The left side is entirely dark where the right side’s drainage is a lovely glowing white.   🙂
In addition to the medical side, we have had to cope with mortgage issues, banking challenges (by the way, our BMO advisor was an angel and has been helping us and advising us very well), employer paperwork, insurance updates, etc etc etc. None of this can be helped but it is a very draining process.
(I would also like to take this moment to thank my colleagues at Infrastructure Canada who sent me a most lovely gift basket with thoughtful treats. I miss you guys too!) 
*** there is a PS note below to others who will receive private notes ***
My incision from brain surgery has not yet entirely healed but my hair is growing in around the surgery area… in contrast, my anti-seizure medication is causing me to lose my hair so i have been lucky that it started off very thick. Time will tell… hope you would all still love me bald (although I am exaggerating and don’t think it will get to that point).
OK that’s all I can manage for today but I will do my best to get in here to see you all as often as possible.
Many hugs and kisses !!!
Silly time at my computer yields silly results

Jen

P.S. To the friends and loved ones who sent notes or cards or gifts, I will do my best to get back to you each individually in a private way… but for now, please know that it brings me to tears when I feel your love and support through this trying time. God Bless you all!