Monday, August 28, 2006
The jellyfish came aground and was still. One of the lobes had a rock embedded into the flesh. I peeled the rock out. Then I put four stones around the jellyfish and spoke to Yemaya. I left.
The next morning the stones remained but the jellyfish was gone. Whether it was eaten by other sea creatures, buried in the sand, or taken back out to the Gulf I do not know.
The embedded rock is traumatic brain injury. Even after removing the rock, the wound remained.
We are the jellyfish, grounded by our individual circumstances that led us to the beach of healing. Healing surrounds each one of us differently. If the healing does not come in the manner in which we expect it, what will we do? We can waste away or take to the ocean swimming the best way that we now know how.
~sapphoq healing tbi
Saturday, August 19, 2006
It didn't go away. After several false starts, an opthamologist muttered "post-head trauma" to his assistant and stalked out of the room. I had to look up the phrase on the internet. That was how I found out. It was a hell of a way to find out. I called the local RCIL.
After meeting with a disability advocate from the local RCIL and a consultation with a developmental optomotrist familiar with traumatic brain injury vision difficulties, I slowly began to navigate in the new world I found myself in. I had ocularmotor dysfunction and double vision in one eye and true photophobia. I got vision therapy. After nine months of vision therapy, I was able to tolerate the prism lenses that I need for my remaining vision problems. I had pain, severe pain. My twenty-four-hours-a-day-seven-days-a-week headaches eventually required three sets of nerve blocks [read: long needles injected into the back of my skull] to kill them off. A traction table and pool therapy mollified my back and neck pain. My worsening major depression [a common scenerio with tbi survivors with left frontal-temporal lobe injuries] got treated with the wonders of modern pharmacology. I had testing which demonstrated to some of the professionals involved what I already knew to be true, even if I didn't know the words. Any ability to multi-task-- except for driving a car-- was dead and not coming back.
And I fought. I argued with my husband, the doctors, the lawyer, the lawyer's assistant, VESID [OVR in other places], a bill collector [I refused to pay the $50 co-pay for the emergency room whose personnel forgot about my head], my former employers, a cognitive art therapist who allegedly might have gotten her phd from Pacific Western University, and insurance companies.
Early on, I stumbled into a traumatic brain injury survivors' chatroom on the internet. We spent quite a bit of time trying to remember the names of the seven dwarves. Some of my chat buddies told me that I would have to be in charge of my own rehab. That prospect was initially terrifying to me.
As time went on and no cognitive rehabilitation was forthcoming, I slowly took up the responsibility of my own rehabilitation. It was after all still my life. My life had been rudely interrupted; I no longer recognized my self; I'd had some personality changes that rocked my world. Yet it was MY life.
The folks in the chatroom directed me to free cognitive re-training exercises available over the internet, to an e-group of traumatic brain injury survivors where I went from fractured posts with no capitalizations and tbi-typese to caps, grammar, and proper spelling, and to readings about the long-term effects of mTBI. I became willing to explore.
In short order I learned how to WYSIWYG myself some simple websites, create links, cut and paste, download drivers and upload pictures, and fix some of the things my incessant button-pushing had done to the computer. I also started volunteer work at a local museum once a week for three hours, something I still do. I went to a couple of BIANYS conferences, visited some friends, and slowly began to clear up mentally.
After ten months of disagreeable disagreements with the VESID helping professionals, I quit. VESID is an agency whose website acknowledges to its employees that the customers are NOT in charge of their plans. Thus, I heard that my plan to return to school was unrealistic. And I was told that my best bet was to allow the nice job coaches from the agency down the road that also runs the sheltered workshop to "help" me. VESID was also insistent that I apply for Medicaid-- which I am not eligible for because of my husband's income-- so that way Medicaid would pay for cognitive rehabilitation for my tbi. I had needed the cognitive rehab months before but it wasn't forth-coming in spite of my best efforts. At that point, it wasn't needed. I had become fully in charge of my own rehabilitation and VESID was not helping me. VESID was hindering me. I needed that agency to get out of my way and I told them so.
I continued exploring the internet. I discovered blogging. One blog wasn't enough so I got several more. I developed friendships with some of my blogging buddies. I joined e-groups that weren't about traumatic brain injury. I found http://www.download.com and http://www.sourceforge.net . I discovered computer art and that I was good at it. I learned that Micro$oft was not the only option and I learned about open sourceware. I became interested in Linux. I decided that I wanted to work in the field of computer security.
Several times within this blog site and within others, I have told and re-told about my experiences with living with a traumatic brain injury. The telling is part of the healing. Today's message: I am in charge of my own rehabilitation. And so are some of you.
~sapphoq healing tbi
Saturday, August 12, 2006
This list of 50 questions I lifted from The Secret Brain who lifted it from a friend who lifted it from...
1. My roommate and I once: went to a local WalMart's to look for a pocketbook for his cross-dressing alter ego. We sashayed through the aisles at length openly comparing possibilites. As I remember, he settled on a tasteful faded blue-jean colored zippered shoulder strap model. One middle-aged woman fled from us in terror.
2. Never in my life have I: done crack or shot heroin and I hope I never do.
3. The one person who can drive me nuts, but then can always manage to make me smile is: my husband.
4. High School was: torture.
5. When I'm nervous: coffee calms me down.
6. The last time I cried was: I don't remember but it was sometime this year I think.
7. If I were to get married right now, my bridesmaids/groomsmen would be: -- one would have to assume that my present husband suddenly died and that I out-lived him.
8. Would you rather run naked through a crowded place or have someone e-mail your deepest secret to all your friends? Running naked sounds like more fun!
9. My hair: is naturally limp.
10. When I was five: I was cute and thin and blonde.
11. Last Christmas: we opened our presents and ate sticky buns in bed.
12. When I turn my head left: why is this question in here?
13. I should be: on the beach.
14. When I look down I see: the old wood floor.
15. The craziest recent event was: watching our oldest cat teach the kitten what to do with a mouse. She snagged a dead mouse from somewhere or other and shoved it over at him. When he went to shove it back or make motions to play with her, she growled. When he sniffed the mouse or jumped at it or threw it in the air, she made signs of approval.
16. If I were a character on "Friends," I'd be: --clueless as I hardly ever watched the show.
17. By this time next year: I should be on the beach.
18. My favorite aunt is: getting older by the minute.
19. I have a hard time understanding: why I should not curse as much as I want to as often as I want to.
20. One time at a family gathering: a cousin killed Peter Rabbit, put him in Shake'N'Bake, and then barbequed him. Very yummy!
21. You know I like you if: I drink coffee with you.
22. If I won an award the first person/people I'd thank: dad, gram, and Blondie the dog.
23. Take my advice: Have the courage to dream new dreams.
24. My ideal breakfast is: a vanilla yogurt coated PowerBar and some coffee.
25. If you visit my hometown: you would never know the glorydays I remember growing up there. The place where I live now-- you'd get bored quick.
26. Sometime soon I plan to visit: my friend Ellie in Vermont and my friend Philly Dave.
27. If you spend the night at my house: some animal would insist upon sleeping with you. And you would get to meet my frogs!
28. I'd stop my wedding if: one of us had a heart attack or something.
29. The world could do without: WAR and HUNGER and maybe RELIGION.
30. I'd rather lick the belly of a cockroach than: re-live my childhood.
31. The most recent thing I've bought myself is: one-half of an old computer [husband bought the other half] so I can revamp it and do stuff with it. And the idea of checking to see what stuff the old owner might have left on it is also appealing.
32. The most recent thing someone else bought for me is: dinner-- thanks Crow!
33. My favorite blond is: my dog Blondie.
34. My favorite brunette is: me.
35. My car must have a sign on it that reads: Go ahead, do something idiotic and piss me off!
36. The last time I was drunk: was on two beers and going into a blackout. Something I don't miss.
37. The animals I would like to see flying besides birds: humans. I would love to spread out my arms and zoom around the atmosphere. Now that would solve the gauging gasoline prices problem!
38. I shouldn't have been: so full of inertia during some times in my life.
39. Have you ever shaved your pubic hairs? Ain't telling. Though I have shaved my head into a butched-up version of a military brush cut for several years. Those were the days...
40. Last night I: did computer stuff.
41: There's this woman I know who: is dead cuz she killed herself in Boston.
42. I don't know: why I am doing this.
43. A better name for me would be: there is no better!
44. If I ever go back to school: I'll take up puters.
45. How many days til my birthday? Every day is my birthday. That means I ain't tellin' yas.
46. One dead celebrity I wish I'd met is: Audre Lourde. But alive thank-you. Not in a seance.
47. I've lived at my current address since: our marriage.
48. I've been told I look like: one of the women on "Cagney and Lacey."
49. If I could have any car, it would be: a working Chitty-Chitty-Bang-Bang. Or maybe a new Mercedes. One that gets super excellent gas mileage.
50. If I got a new cat tomorrow, I would name it: Sammy.
English is my native language and I have been exposed to bits of Italian and Polish through relatives. I studied French and Spanish in school. I also know enough Ameslan to get by in a room of non-hearing people playing 30-up. But Arabic-- very different for me. Because it is so different, I am forced to pay attention. The engagement of my SN/VTA stimulates me to explore. Exploration can indeed be its own reward.
excerpt below taken from: http://www.news-medical.net/?id=19196
Novel environment sparks exploration and learning
Medical Research News
Published: Wednesday, 2-Aug-2006
Neurobiologists have known that a novel environment sparks exploration and learning, but very little is known about whether the brain really prefers novelty as such.
Rather, the major 'novelty center' of the brain - called the substantia nigra/ventral tegmental area (SN/VTA) - might be activated by the unexpectedness of a stimulus, the emotional arousal it causes, or the need to respond behaviorally.
The SN/VTA exerts a major influence on learning because it is functionally linked to both the hippocampus, which is the brain's learning center, and the amygdala, the center for processing emotional information.
Now, researchers Nico Bunzeck and Emrah Dzel report studies with humans showing that the SN/VTA does respond to novelty as such and this novelty motivates the brain to explore, seeking a reward. The researchers of University College London and Otto von Guericke University reported their findings in the August 3, 2006, issue of Neuron, published by Cell Press.
goto http://www.news-medical.net/?id=19196 for the full article.
Wednesday, August 09, 2006
COSTA MESA, Calif.--(BUSINESS WIRE)--Aug 9, 2006 -
Synthetic Blood International, Inc. (OTCBB:SYBD) today announced treatment of the seventh and eighth patients in its Phase IIa proof-of-concept Oxycyte(TM) study in traumatic brain injury. Consistent with the results in previous patients treated in this trial, Oxycyte administration in the two most recently treated patients significantly increased brain oxygen tension over baseline...
..."Currently, there is no direct therapy for the 1.4 million Americans each year who sustain traumatic brain injury," said Robert Nicora, Synthetic Blood President and CEO. "The results of this trial are exciting because previous studies have shown that increasing brain oxygen levels in patients with severe brain injury is associated with a better clinical outcome relative to cognitive and motor function. We believe the positive study data to date provides a significant basis for initiating a Phase IIb Oxycyte trial in a larger traumatic brain injury patient population."...
...Oxycyte is administered to patients with severe traumatic brain injury and a Glasgow Coma Scale score of 3-9. The primary purpose of this study is to demonstrate Oxycyte's ability to increase brain oxygen tension and favorably affect other brain chemistries that impact clinical outcome in patients suffering severe head injury. Additionally, the study will further assess the safety of Oxycyte when given by intravenous infusion...
[The complete article is available at:]
sapphoq applauds research in the field of brain injury which may result in demonstrable and measurable improved outcomes for future patients with brain injury. To be afraid of carefully designed technological clinical trials is to deny many human beings hope. Medical progress depends upon data which has an ability to be tested and reproduced. Although it may be popular among pagans and cowan both to deny careful evidence that some of our pet treatments and ideas about the way things work do not hold up under rigorous investigation, it remains vitally important that researchers continue to conduct such investigations. Fundamentalism of any kind along with its' twin sentamentality are the natural enemies of logical thought.
Tuesday, August 08, 2006
Skin in the Game: Beyond Yellow Ribbons
by Dr. Hilary Stallings
Since my brother Chris was deployed last semester, I’ve learned much about being part of a military family. Most significantly, I’ve grown to understand that the war is always with you; you’re always aware, as the military says, that you have skin in the game.Simply put: it’s consuming. I find myself watching the news with such urgency or repeatedly looking over Chris’s consistently benign e-mails. There’s just this hope that by being diligent, you’ll hit upon some small reassurance that he’ll be OK and come home whole. But, sadly, this search only yields an overwhelming sense of helplessness, a loss of agency that I suspect many of us share. Regardless of political ideologies, feelings about the war or direct links to deployed military members, it seems people would like, in a real, tangible way, to “support the troops.” The problem is how?
For me, this answer came in an unexpected fashion. I kept hearing about fatal or life-altering head wounds: something like 59 percent of troops who survive an improvised explosive device, or IED, attack suffer traumatic brain injury, most commonly from the enormous concussive effects of the blast. Fortunately, before Chris left, I also heard Capt. Bob Meaders, M.D. (U.S. Navy, Ret.), speak about a retrofit for helmets that can drastically, drastically reduce these numbers.
This is a battle of bombs, not bullets; so, for me, there was no way my brother was deploying without one. Immediately, I e-mailed Dr. Meaders, and a helmet insert was shipped that day. Chris confirmed he received it, thanked me (commenting on the increased comfort level of the helmet), and that was it.
I didn’t think much about it until a few months later when talking with my father; he asked me in an unusually quiet, still voice whether I thought Chris was using the insert. His angst in anticipating my answer had actually robbed him of normal inflection. Certainly, this $70 helmet retrofit was helping more than Chris get through the deployment.
In retrospect, that discovery seems so odd. Of course I realized my parents appreciated and were thankful for the upgrade. I knew that. But I had not internalized the depth of their feelings, nor did I understand that in their minds, knowing Chris had this piece of equipment somehow tipped the scale in favor of his safe return—that now, along with his good judgment and strong training, he had one more thing going for him. At that point, I decided to find a way to help give this same much-needed hope to the parents of Chris’s 35 men. Their children, too, needed this safeguard.
So the fund-raising began, starting with a series of mass e-mails that explained how
Capt. Meaders is working to provide ALL military deployed (Iraq and Afghanistan) the inserts for free, but that takes fund-raising, and consequently there’s a backlog (more requests than money)…. The inserts cost $70, not an insurmountable sum…. What I’m asking you to do is visit http://www.operationhelmet.org . Capt. Meaders has material about the actual product, the military’s approved use, tax information, etc. You will find him compelling.
I solicited everyone I knew, everyone my parents knew, even my friends’ parents and their friends, moving then to letters to editors and calls to representatives. Casual remarks of interest were always followed with a presumptive, “Make the check out to Operation Helmet” or “I’ll be glad to come back after payday.” And it worked. People were generous, both in their personal contributions and in passing along the word. When we got close to the target amount, Dr. Meaders mailed Chris 35 inserts, which were delivered to him far away, in the desert.
Later, sitting in an Internet café in a land where the native Texan has said that the 90-degree nightlows now make him cold, Chris wrote the following, which unintentionally inspired a campaign to retrofit the entire company.
We just got the inserts late last night in the mail….but when i got my platoon together and i explained the whole thing to them from dr. meador (that was his name right) being a passionate advocate of these things, and then how you heard about them and wanted to make sure every marine in my platoon had them and then all the benefits they provide (from concussions to stopping bullets from bouncing around inside the helmet) the marines were in a kind of shock that someone they didn’t know would go so far out of their way to provide something for them.
They knew they weren’t cheap and they started doing the math in their heads and figuring the numbers out. they were totally amazed. they were so thankful. marines are wonderful, in that they will always do what they are told, and they will do it, tired, hungry, sleepy, moody, wet, miserable, in pain, and everything else. and they will usually get it done with far less than any other military branch out there. marines are born to fight and get the mission done with less and do whatever it takes to make sure it happens with the proper outcome. so when they found out you were out there running around raising money for them to get inserts they could have gone without, but having just helps them and provides them with that much more comfort, ree, you should have seen how thankful they were. it was truly awesome, and in a way that cookies and magazines and candy (though appreciated) will never be because those things will not actually go out and help them accomplish their mission. and you and your efforts made it that much easier for 35 marines….
ree, you are truly awesome, and should be proud of this. you made 35 (36 including me) grunt marines extremely happy and we each owe it to you and those who helped you and those who do similar kind things to keep going…
As you can see, with the help of many giving friends and strangers, this is how I have been spending my summer: raising funds and awareness— basically, trying to put the war at the forefront in our minds again. This is a difficult challenge as the time frame seems to stretch. But the people over there, on the ground, in the heat, away from their loved ones, are all our brothers, sisters and children. We all have skin in the game.
If you too would like to order a helmet retrofit for a family member or friend, visit Meaders’s Web site, www.operationhelmet.org. Donations to the troops in general are welcome, and remember your gift doesn’t have to be grand. Every single dollar helps. At the site, you can view Meaders’s recent interview on “Lou Dobbs Tonight,” which provides a succinct description of the program.
You can also talk to me. I know this may seem a bit strange, privately having to equip the military, but that’s the reality of this war. Again, I am asking that we put politics aside in this case and simply support the troops.
Dr. Hilary Stallings is assistant to the dean of the College of Liberal Arts. Her brother, 2nd Lt. Chris Frey, is serving with the U.S. Marines in the Middle East.
How you can help:
Operation Helmet is a nonpartisan, charitable grass-roots effort that provides helmet upgrade kits free of charge to U.S. troops in Iraq and Afghanistan. These helmet upgrade kits consist of shock-absorbing pads and a new strap system.
Operation Helmet depends on tax-deductible donations. For $75 to $100, depending on the manufacturer, added safety and comfort can be provided for a soldier, but donations of any amount are welcome. The donation can be designated for a specific branch of the military, a particular unit or an individual trooper.
Dr. Bob Meaders, a Vietnam veteran, began the Houston, Texas-based Operation Helmet in 2003 when his Marine Corps grandson requested upgrade kits to make his unit’s helmets safer in combat. To date, Operation Helmet has sent upgrade kits to more than 19,885 troops.
One hundred percent of all donations go toward helmet kits. There are no administrative costs deducted. For more information, visit www.operationhelmet.org.
Note: Story originally published in the July 3, 2006 issue of The Record, Middle Tennessee State University.