RE: Fisher

June 24, 2002

Greetings!

I am glad you find my posts inspiring. But don't focus on me. I try to

just be a messenger. It is my way, albeit a small one, to try to live

my faith.

> Are you still working full time?

Yes. If I am lucky if it is 40 hours per week. More often than not, I

work 50 to 60 hours per week. It can be very exhausting. Lots of house

work is not getting done.

Although we could manage with Long Term Disability (70% of current pay -

and that's the highest percentage I could purchase through my company),

with a daughter headed to college, full time work helps our situation.

Work is something I fortunately love to do. But don't get me wrong, if

I go out on LTD, other opportunities to help others would present

themselves. For example, my church wants lots of my time, due to some

study I have on large church management (building small groups,

integrating new members, as well as all that computer work).

Unfortunately, right now, I just don't have the energy at the end of the

day. And I tend to collapse on the weekend.

> Out of your home?

Yes, I do. I can no longer drive, so this is a true blessing. I am a

computer systems consultant. My group helps HP's customers with large,

business critical OpenVMS systems.

These are systems, which if we fail to keep them running, the customer's

company will no longer be able to function. For example, imagine a bank

not able to do funds transfers, a leading silicon chip company not able

to produce chips... You get the idea.

It can be very stressful. Fortunately, I try to be very patient and

calm. In fact, I am often asked by team mates to help when we have a

customer that is so excited we are not able to understand the problem.

I always try to remember the prayer " Lord, make me an instrument of Thy

peace... " Another small way I try to live my own faith.

But remember I have been doing this job for about 25 years now. So, I

am able to do much of this at home that might be a problem for others.

> What kind of arrangement have you made?

As far as being allowed to work at home? Well, the company many moons

ago (10-8 years ago) decided it was not necessary for some field

personnel to be an the office. It is cheaper for the company not to

have the buildings. So, about 9 years ago, I decided to work out of my

home. So, this is not a new thing for me or my company.

As far as how do I work? Well, my company pays for my Cable Modem

service. Through that I " tunnel " into my company. This is an encrypted

exchange of information. So, even though I am working with sensitive

data, it travels at the highest encryption possible. In other words,

you could stick a monitor on the line coming out of my computer and not

be able to make heads or tails of the messages sent.

My company also provides several systems for me to explore problems

using my systems. Better than testing on a customer's system!

HP also provides a phone and fax line. This includes an " office " type

phone. It also provided a portable phone, so I can step outside with my

dog and enjoy the air. I also have several call center quality

headsets.

Since I take calls from customers, our call screeners get the call from

the customer from an 800 number, they then connect the customer to me.

Most of the time, my customers have no idea that I work from home. And

that's the way I want it.

But it is easier to do this when the company embraces the concept of

work from home and has a program set up to manage different aspects of

it. Though many would now do this as a reasonable accommodation, it is

not guaranteed. Since I am a " knowledge worker " it is easier for me to

do this at home.

However, if anyone is considering this, you need to consider being open

with your employer about your condition. One way to do this is to

request a note from your doctor / neurologist explaining the condition.

This is especially true if walking and slurred speech are problems. Be

certain it is very clear this is due to the neurological problem and not

alcohol related.

Then discuss the letter with your manager. Be open, answer questions as

best you can, then continue to try to do the best you can. Remember, a

good clear mind generally comes with this. It might take some time to

prove it does not impact your work. Even if work form home uncertain

under company policy, your manager (if compassionate) might let you

function on the QT without informing his management. If it works, your

manager is more likely to try to fight for this.

But be prepared to provide prove you are working. Not always an easy

thing to do.

If you worry you will be fired as a result of " spilling the beans " , be

certain to at least register the doctors letter with your HR department.

If they are worth their salt, they will be certain you are not fired due

to your disability.

Sorry for the long post. Hope it helps.

Regards,

=jbf=

B. Fisher

October 29, 2002

,

As you face the ever changing world around you, I hope this helps. I

believe that they are called milestones. These are the events in life that

change your world forever. Unlike a baby, whose milestones are teeth,

walking, talking, tying their shoes and starting the separation process

towards independence by going to school; our milestones are the ones that

contradict our innate perception of who we are. We had grown up, become

somebody in this world of ours and still had hopes and dreams of what our

future would be like. In the middle of this dream, the earth opens up and

our lives get complicated.

These milestones are unfair, and yet we are given no choice but to hold

our heads high and trudge on with the strength and character that we hope

one day, we will actually achieve. How does one master loss? How does one

handle having the perception of “me” diminish one piece at a time? I guess

the answer to this is that we do it the best we can and we don’t condemn

ourselves when one milestone devastates us more than another one. The

impact on each of us is directly related to the importance we placed on that

particular thing.

We all remember the day, not so very long ago, when our bodies did as we

willed. We reveled in our accomplishments and thought nothing of going some

place or participating in the common pleasures of life. That is part of

what makes our milestones cut so deeply.

, though I am not in your shoes, I can relate to what you are saying

about going out in public. The energy it takes, the preparation that has to

be made, both emotionally and physically, is almost incomprehensible to

those in the healthy world around us. Not to mention the taxation it yields

on the body in so many forms. We think about things that would be

considered phobic or obsessive to many people. The crowds, what if someone

should bump into me and I should fall? The noise, what was once part of the

pleasure of the event now becomes a torture. It seems to envelope you. You

have to focus so hard at everything that you are doing. Walking, smiling,

talking, and trying your best to fake normal.

Then the thoughts hit you…. This cannot be who I am. I am independent,

successful, and able to take on the challenges of the world. I can do

anything that I set my mind to. Then your mind wanders back again…. This is

my new reality, this is the disease. This is quite probably as good as it

is going to get. I have to deal with it, I have to accommodate it. I have

to make the necessary changes to adapt to it and to make it a part of my

life. I don’t become the disease but it has become a part of me. Because

of these thoughts, one feels sadness, frustration, anger, determination and

finally accommodation and acceptance. These are our milestones.

Though my diagnosis has changed over the past four years and I have been

given back the hopes of once again having a future, I too had to go through

these milestones. The first and hardest was having to give up my 2 youngest

children because I was no longer able to care for them as they should be

cared for. I did what was best for the children regardless of the fact that

my heart has never recovered. I had to admit that I could no longer work

and had to leave my job, one that I thought at the time, made me who I was.

I perceived that job to show that I had succeeded in life and had overcome

the mistakes of the past. Because of the disease, it too became one of my

milestones. I cried.

Then came the loss of driving. It is hard for someone who hasn’t had to

let this go to imagine how horrible this loss is. It brings not only a

feeling of being dependent on those around us for just about everything, but

the reality that our bodies have really gotten to that dreaded point where

we might endanger others if we continue. Our nature, due to the suffering

we go through ends up winning because we could not deliberately cause anyone

else to suffer the way we do, especially if it could possibly be caused by

us.

Then there are the milestones when one comes to the reality that a cane is

needed for walking (1999), then a walker (2000) and finally a wheelchair

(2002). I have gone through all of these. The hardest milestone though, is

when you can no longer feed yourself, control your own bodily functions and

feel, though it rarely is the case, that you have become a burden on all

around you. I prayed for death with every breath, to be set free from this

world that offered no solstice, no moment away from the energy that it took

just to be conscious. I felt as if I could not go on if I were never again

to have any relief from all of the pain and suffering. I realized that the

only milestone left was the dignity that I could try to exude in my own

death.

I remember the words that I used and told to others when reaching yet

another milestone; “It’s not that I can’t do anymore, it’s just that I can

do differently.” I also used to say; “You will have to forgive me, I’m just

going through the stage of observant denial.” There were others but by now,

I know you understand.

What I want to say is that you are not alone. There are many miracles

that happen in this world of ours and some of the greatest gifts that we can

receive come from this journey we are on. No matter how prolific it sounds,

it still rings true, we are the sum of all of the events in our lives, good

and bad, and because of those events, we have the wisdom to reach out a hand

to others as they reach their milestones.

, if you can find something to avoid the confusion of the world, by

all means grab it. It is not so terrible to be in a wheelchair in a crowd.

If you get an electric one, not only can you run over the toes of those who

are rude, but if you are in a mall and see someone stumbling around slowly

with their cane, you can put the thing into high gear and swoop them up in

your lap and give them a lift to where ever they are going.

Share your feelings and frustrations with your family. See what their

perception of the issue is and what they would suggest. Get a third opinion

from someone who is unbiased and then, sit down with everything, and do what

will give you the best quality of life, right now.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

Personal website & photo's

http://www.pdhangout.com

http://community.webshots.com/user/tenacitywins

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October 29, 2002