BS: Positive Energy Request (Update)

Subject: RE: BS: Positive Energy Request (Update)
From: wysiwyg
Date: 30 Oct 10 - 11:29 AM

That I am. Imagine she is any other musician, such as Jean Ritchie for instance, or any of us who has struggled with brain issues of any kind. Or will yet.

~S~

Subject: RE: BS: Positive Energy Request (Update)
From: Sandra in Sydney
Date: 30 Oct 10 - 10:51 AM

you're fortunate to be able to spend time with Shalisa & be part of her life

sandra

Subject: RE: BS: Positive Energy Request (Update)
From: wysiwyg
Date: 30 Oct 10 - 10:39 AM

I'm very happy to say that I was privileged to spend an afternoon with Ron and Shalisa not long ago, and that she is indeed much the same person she was-- and quite adorable I might add which is one reason I am so grateful Ron keeps her close. He's a great dad. She has "space" but never isolation. That is a really hard balance to keep!!!

She played a bit of music for us, on one of her wooden flutes. The last time I had seen her, years ago, she was in the bloom of health, and unselfconsciously sporting a wonderful bag of flutes that she played gorgeously. A hippie style not put on in imitation of a style, just... Shalisa.

The spark in her flashing eyes is still there. The graceful gentleness displayed on a strong, whippy frame is there. The gorgeousness of the playing is still there. I wished I had brought my own MP3 recorder to capture it (for myself as well as for her use). I won't make THAT mistake again. I'll take my own camera, too, so I can email her and include a picture of our visit to help her re-connect with "Who is writing to me now?"

Spending time with her is very much like the time I was so lucky to spend with Father John in his last year.... just a time to BE with a fabulous person, and enjoy them while also enjoying the COST of being with them-- being on top of one's own game in order to give them your best.

How do I know she is intact in there. Well, she apologized profusely for not knowing my name. Several times. She knew it was "polite" to know a name, she knew she had probably just been told what it was, and she knew it was "supposed" to stick. She was not frustrated (externally at least) that it didn't stick, but so apologetic. I said, "No! I should have brought NAME tag so you wouldn't have to keep asking! It's not just your job to make this work!" I asked for tape so I could make a tag. She grabbed a post-it and wrote my name as I spelled it-- the hostess, writing it FOR me. I stuck it on my forehead. Laff, laff, laffing..... every time she saw that on my head, she remembered why it was there. And here is the twofold kicker-- this is about how she retains stuff, not about what I did. (1) she stopped apologizing because she had retained the idea she did not need to; (2) when we left, my tag was gone, because she had asked me to put it on my pocket and the fabric had worn off the stickiness and she no longer cared if she new my name. We were having a hug goodbye in the driveway (she intuits safety), and she mourned, "I lost your name!" I said, "What do you think it might be?" Flashing eyes on a good joke: "Tell me what letter it starts with?" "S" "SUSAN!" She was hopping-proud. What a great goodbye.

She had made at least that much connection. I don't care (for myself) if she remembers a thing about all that next time I see her-- probably spring. But I know now how to connect, and that she does connect, and that she takes charge for her end of connecting.

WHAT MORE CAN ANYONE ASK?!?!?!?

~Susan

Subject: RE: BS: Positive Energy Request (Update)
From: fat B****rd
Date: 30 Sep 10 - 03:29 PM

KInd thoughts to you and yours from Dunfermline.

Subject: RE: BS: Positive Energy Request (Update)
From: gnu
Date: 30 Sep 10 - 05:23 AM

Same here. T&Ps.

Subject: RE: BS: Positive Energy Request (Update)
From: Morticia
Date: 30 Sep 10 - 03:46 AM

hugs to all of you, thanks for keeping us in the loop

Subject: RE: BS: Positive Energy Request (Update)
From: Sandra in Sydney
Date: 29 Sep 10 - 03:51 AM

thanks for the update.

adding my good wishes to the mix

sandra

Subject: RE: BS: Positive Energy Request (Update)
From: wysiwyg
Date: 28 Sep 10 - 09:48 PM

I also had wondered, and I love that approach that the destination is wherever you are at any moment.

I think of you both, often, and I know that she is essentially fine in there. What you shared about her music retention confirms what I've felt.

She's very lucky that you can see that the essential personality is intact, through all the appearances. For her to know she is "seen" and valued for her own true self is huger than this screen can hold.

Dang, bro, you doin' this part real REAL good. You slewfootin' devil, you.


Love to you both from your Tioga County cousins,

~Susan

Subject: RE: BS: Positive Energy Request (Update)
From: The Fooles Troupe
Date: 28 Sep 10 - 08:13 PM

And there was I feeling miserable about myself!

I now know I am complaining abut not much at all and feel much better, so I am sending some my positive energy!

Best Wishes!

Subject: RE: BS: Positive Energy Request (Update)
From: olddude
Date: 28 Sep 10 - 04:55 PM

In my thoughts and in my prayers
for her and your family

Dan

Subject: RE: BS: Positive Energy Request (Update)
From: katlaughing
Date: 28 Sep 10 - 04:49 PM

Ron, I've been wondering. Thanks so much for the update. I'd say Shalisa and you who love her are all remarkable people. May you continue to see improvement to an even better "new" normal. Isn't the power of music wonderful!

With all good wishes,

kat

Subject: RE: BS: Positive Energy Request (Update)
From: ranger1
Date: 28 Sep 10 - 04:19 PM

Thanks for the update, Ron. Hoping that things continue to improve for Shalisa.

Still sending positive energy from Maine.
Tami and J-boy

Subject: BS: Positive Energy Request (Update)
From: Dharmabum
Date: 28 Sep 10 - 04:08 PM

I started this thread last February with this post;


Feb,23,2010,
This past Sept,my 30 year old daughter,Shalisa, was admitted to the Thomas Jefferson hospital in Philadelphia, with double vision,slurred speech,headaches,short term memory loss & dementia.
After a 10 day stay,which included numerous tests,scans and a biopsy of her brain,we were handed the diagnoses of terminal cancer.
Numbness,best describes the emotions we initially had to deal with.
Followed closely by devastation.
Ironically,my daughter was probably in the best emotional state at the time,as she had no memory of the diagnoses that the doc's had given her.
The next six hours was most likely the hardest I'd ever spent as a father.
Then,we got the call from the hospital.
They were uncertain of the cancer diagnoses,could we please bring her back to the hospital.

After an additional 5 day hospital stay & another battery of tests, we were given the diagnoses of something very rare & barely pronounceable,called,Metachromatic Leukodystrophy.

Not great,& no known cure,but not cancer.
And a slightly better prognoses in adults than in children.

At our last meeting with the neurology team at Thomas Jefferson ,we were told that they were again not 100% certain with the diagnoses,but her insurance would not cover further testing.
The best diagnoses they would commit to was a form of Leukodystrophy that had caused a demylinization (exposed nerves) in a large part of her brain.
This was late Oct.

We've since started seeing the neurology staff at the University Hospital in Philadelphia,& new testing has begun. (Hopefully,insurance will cover what needs to be done)

Shalisa is doing relatively well at this time.
Physically,she's dealing with a fair amount of fatigue & a bit of unsteadiness.
The headaches,double/blurred vision have almost completely subsided,& her speech is once again normal.
The most prominent & lingering symptom is her short term memory loss.
On a good day,Shalisa cannot retain any information for more than 5 minutes.

My daughter & I have played music together for many years.
She,as a young girl,showed a natural ability for guitar,pennywhistle,flute,keyboards.
I'm happy to say that she's retained most of her personality & quite a bit of her musical ability throughout this ordeal.
Though,some days it may be only be a 5 minute session,we're still playing together,and I have confidence we'll continue doing so for many years to come.

I've been told that recovering from brain injury is not so much about getting back to "normal",as much as it's about achieving a "new" normal.
Whatever that new state may be,I'm sure that our music,combined with all the other forms of rehabilitation we've undertaken,will be a very signifigant part in achieving that goal.
We're all very hopeful and positive about Shalis's recovery.

Please excuse the long winded post.
I've been hauling this around in my head for the past couple of months,& just needed to shake it outta there.

    Ron.


UPDATE,9,28,2010

Well,It's been a year now,since"All hell broke loose" in my family.
And,although I can't report that Shalisa's condition has improved by leaps & bounds,it doesn't appear that her condition has worsened much.

On a daily basis,Shalisa's still dealing with a lot of fatigue,frustration & forgetting.
She still hasn't regained her sense of smell or taste.
She's managed to gain a few pounds since this whole ordeal started.
Because,as she says"I can't taste anything,so now I can eat everything".
Frequently,Shalisa's brain sends a signal to her body that she's cold,& breaks out in chills,which only last a minute or so.
I like to believe that it's just a sign that her brain signals are trying out some new routes.
We keep working with her.Keeping her as busy as is tolerable for her .
A cane is being used to help her with stability.
Tho,I try to stress to her not to rely on it more than she has to.


Still playing music, despite some hand trembling,mostly pennywhistle right now,but some piano & guitar.
Shalisa is able to accompany most songs that we've played & still remembers songs from before her illness.
However,still cannot retain new pieces.
I dare say though, throughout all of this her improvisational skills may have improved.

Shalisa's managed to remain somewhat socially active,but cannot be left alone at this time.
At times,this can be a bit like caring for a child,but different.
Not unlike caring for someone with alzheimers I suppose,but most of Shalisa's personality has remained intact.

Although some days can seem pretty rough,we're all reminded that if the doc's first diagnoses had been correct,she,in all likelyhood, would've been gone by now.

Although,this road to recovery may seem endless at times,
Our destination is whatever step we're taking at the moment.

Thanks to all at the cat who've offered your support.

Ron.