A time- line, within my journey

[Hope]

Name: Hope
Cause of injury: Jamestown Canyon Viral Encephalitis
Date of Memo: November 1, 2009
Purpose of Memo: Education


Timeline of Hope’s brain injury

· Original symptoms included: fever, headache, photophobia, nausea, vomiting
· 6/2/97 Symptoms increased and the following were added: mild confusion, forgetfulness, arm and leg tremors, back pain
· Progressed to inability to walk, speech became dysarthric (trouble with articulation), difficulty swallowing
· 6/22/97 fever increased
· 7/1/97: non-verbal, spastic, high fever
· 7/5/97: brain biopsy – brain tissue from cerebellum was grossly abnormal (consistent with viral etiology)
· 7/16/97: PEG tube placed for long-term feeding
· Fever didn’t respond to Tylenol or cooling blanket
· 7/23/97 she was diagnosed with Jamestown Canyon Viral Encephalitis
· Continued having seizures which injured her left ear
· 8/4/97 transferred to St. Mary’s Brain Injury Rehab unit
· 11/97 transferred to Arbor Hill Nursing Home
· 2/00 transferred to Northeast Center for Special Care (located in the Catskills)
· Spring of 2001 moved into apartment with 24 hour care (24 hour care is no longer necessary)

Effects of Encephalitis
· Focal damage occurred in cerebellum which plays an important role in the integration of sensory perception, coordination, and motor control. This has effected Hope’s ability to walk independently necessitating her use of a wheel chair.
· Recent research suggests that the cerebellum may play a role in the regulation of emotions. Hope’s emotions often roller coaster. She may appear fine one moment, followed by intense crying the next.
· Research further suggests a connection between a cerebellar peptide called cerebellin and the hypothalamic-pituitary-adrenal axis’ increase in the production of cortisol. Cortisol is a major stress hormone associated with both anxiety and depression. Hope experiences depression and many fears, during which she may become overwhelmed or shut down. Fears include, but are not limited to stairs, bridges, and street grates.
· Hope experiences deficits in Executive Functions which include, decision making, planning, memory, and problem solving
· Hope has difficulty navigating complex systems, such as public transportation
· The effects of her injury increase when Hope is under stress



* The information in this memo was compiled by Danielle R. Brown MA, CAS (Community Integration Counselor and Certified School Psychologist) using information obtained from Hope, medical records, research articles, and counseling interactions

[Daniel]

May I just thank you for being willing to share this information - there are obviously many things above which, to me at least, would be difficult to write down. I'd just like to ask a couple of things about what I read above and I only expect an answer if you feel comfortable doing so, I tend to sometimes overstep the mark, so if I do, my advance apologies.

The progression of being able to walk to not being able happened over a span of about 3 weeks (I gather from above) - to me, in not recalling my own initial infection at all, this is quite surprising as I get the impression that if this condition worsened over a period of weeks, rather than hours or days, am I correct in saying something worsened in that period which exascerbated the illness? - eg you caught a cold, or the hospitalization and treatment was delayed for some reason? I just find this timeframe a little surprisingly prolonged in the presentation of such a serious symptom.

May I ask at what point you knew you could be independent of 24 hour care? That's obviously an humungous step considering the lingering symptoms you must have then had - how did you overcome the, I imagine I'm right in using the following terminology, intimidation of living independently again after the hospitalization and the constant care? What things were especially challenging when this happened? - eg cleaning or shopping - was it as hard as you imagined it to be, or did it go better than expected?

I'm actually quite interested to read of you noting the reported link between emotion and the effects of the virus on the cerebellum - you wrote that it has a degree of control over both sensory perception aswell as emotional staus - in speaking with yourself, I read the notes of your previous perpensity for heightened negative emotion to be quite surprising, as you always come across as admirably in control of such things - have you found your sensory perception to have improved simultaneously with your emotional improvment, or has one improved more than the other?

[Hope]

Daniel,
First of all you are by no means stepping over the mark.

If I'm understanding this question:
this is quite surprising as I get the impression that if this condition worsened over a period of weeks, rather than hours or days, am I correct in saying something worsened in that period which exascerbated the illness? -
I had lingering symptoms although they worsened with time (am I answering the above question, how you atre asking?)

To answer this question:
May I ask at what point you knew you could be independent of 24 hour care?
I knew it was due to alot of my fears, I was allowing fears to get the best of me.
I knew I needed to prove to myself I was able. But, let me say I was SCARED!
They gradually reduced the times. At first, I came up with every EXCUSE, out of fear. But, I am glade they the agencies pressed me at first.

I struggle greatly with my emotions but I feel I have a better handle on them.
I am all about learning to become aware of situations that bring about fear and be able to challenge myself to face those fears.

I am not sure if I answered your questions? I really want to, did I answer them?
Is there any other questions that come to mind, ask me, I love answering questions?

[Daniel]

I think others underestimate the tangeable impact of fear or depression on a recovery such as this - I've had people simply dismiss my uncertainty as 'whimpish' or imply that I'm lacking backbone by not trying to do something they think of as being a good idea. I've always known the ideas of others to be good ones, on the surface, but when you're in the hotseat (like you and I are) and faced with the presentation of symptoms like presyncopal lightheadedness/dizziness, which presents itself (in my understanding) when the heartrate is accelerated and the central nervous system cannot handle the additional stress put upon it by emotion like fear, shock or sadness - to come up with excuses, such as you say of yourself having done, would be hipocritical of me to criticize, as I did the exact same thing - still do sometimes.

When you speak of excuses, I wonder about your life today - how did you deal with the way you saw attending classes each day, knowing what you do about your health and vulnerability to adverse emotions - I dislike how I realize that must have felt for you : I imagine that you were bent on successfully getting into the study and undertaking a huge turnaround in your life and recovery - am I correct in saying that, as the first day drew closer, more and more things seemed apparent as worrying which hadn't been before? How did you get past feeling uncomfortable when entering the classroom full of people you didn't know and taking your lingering symptoms into account? I mean, you must have felt singled out and uncomfortable - also taking into account having been away from large crowds of strangers for a significant time must have played on your mind - how have you learned to overcome that? Do you still feel that way today?

May I also ask how others on campus have treated you? Like anyone else, or have you sometimes felt a little singled out?

[faith]

Hi Hope,
thankyou for this post. your journey is so inspiring. the meaning of true courage is to do something despite the fear. you are truly courageous, and i continue to draw strength from your story.

[Hope]

Daniel<<br />
Wow, you touched on some very thought seeking, soul-searching questions, I love those kinda questions.
I fight inter demons very often, I have to remind myself that I deserve to be able to have a fufilling life.


You ask?
"How did you get past feeling uncomfortable when entering the classroom full of people you didn't know and taking your lingering symptoms into account?"

This has been challenging for me but, I know that I need to remind myself that I'm a person to.
That I may look different and act different; but the underlying perpose of being there is to learn.
In all this, and seeing me, others may open their eyes to disabilities.

You ask:
"May I also ask how others on campus have treated you?"
It's been very skidish but, I'm also at fault because I have been very affraid of breaking down my "walls"
(I need to work on this).

You ask:
"Like anyone else, or have you sometimes felt a little singled out?"

Yes, as I had mentioned above I enclose myself out of fear of what I was told for so long that I was.

[Hope]

Faith,

Thank you, That means alot. You are an amazing person. I always love to hear from you.


faith said:

Hi Hope,
thankyou for this post. your journey is so inspiring. the meaning of true courage is to do something despite the fear. you are truly courageous, and i continue to draw strength from your story.

[Daniel]

It just seems to me that, while others on campus around have their various personal battles they deal with day to day - eg :

'How will I pass the exam coming up?'
'How will I get the courage to ask that pretty girl/cute guy out on a date this weekend?'
'Oh my gosh, does my hair look bad today?'

you have so many more potential concerns you, I'm guessing, running through your mind all day simply because you've had as long as you have in recovery to acquire them from being in public places, hearing your own voice as you speak or even just seeing old photos and realizing there's a different Hope smiling back at you.

I won't add to that list and apologize if it brings you down, but I think the point I'm making is that you've actually contradicted all that simply by becoming who you have these past few years : if only those people you see around you knew what you've been through or had experienced it for themselves, then they'd likely hold a guard of honor for you as you enter the classroom each day (or, they should do).

How much of this do you find is in your mind each day? I mean, when someone is insensitive or prejudicial towards you based on your disability, do you find yourself wishing in that moment that they had a taste - a minute or two - of feeling all you've endured since falling ill, if only to make their smartass expression or condescending tone, perpensity to have forgotten all about you when they never used to, all vanish in favour of at least some semblance of acceptance and seeing you as the equal you are?

Let me ask you a different question to see if you're, conversely, more like I feel : I often see the sideways looks I used to absolutely receive, if only now feel, and it *chewed* me up inside - I hated that and felt utterly pissed about people judging me with *that* look that labels one a horribly cliched term like, 'retard' or, 'freak' or something. Initially, it almost felt like those expressions were self medicating as they saw someone before them, I thought, as someone less than how they saw themselves and so they felt better.
I saw these sideways looks and grew into a very paranoid individual because I realized that these looks were motivation - if I was still receiving them then I should be doing something to change the way people saw me, and so my rehab began on that point.

You say you feel 'skiddish' on campus and perhaps also a little evasive or untrusting of others. When someone makes you uncomfortable because of your disability, do you find it still bugs you like it once did, or do you also see it as fuel to make you strive for more?
I may sound angry, hateful or bitter in my tone, but I think there's another way to see things. I'm not a hateful person, and wouldn't hurt a fly (except if it was toxic or super poisonous or something crazy like that), but I can't help but feel those years of ill emotion from others grow less as I improve more and know that those very people who were prejudicial or hurtful have actually facilitated a large amount of the success I thank god for - the way they've made me feel has been most emotive.

Do you find your doubters also inspire you to improve further? Is there any one person you'd label as being most motivational to you in this regard? (answer not expected to this question)

I recall once telling you of a friend who ripped my self confidence apart by ridiculing me after I left hospital one weekend in front of the others. We haven't spoken since, except for a half assed email apology he wrote when I told him to beat it instantly.

I will never forget that moment where he made me feel tiny in front of the others and effectively ended all my friendships as the others suddenly seemed embarrassed to know me after that. This memory has pushed me in recovery - not to hunt him down later in life, but surpass him and be the best I can be and honor those who I do owe everything to.

It's the damndest thing feeling assisted by a complete git like that, but if it works, right?