An Altered Life

All you touch and all you see, is all your life will ever be
---Pink Floyd “Breathe”


*your health
*your family
*your job
*your dreams

If you have your health, good health, low maintenance health, it is easy to be caviler about a cold, flu, a sprain, a twinge. Age related? Or is it something more?

New limits on energy, concentration and productivity.

When it isn’t enough to be awake and lucid enough to answer a telephone

Health is messing with work skills and you look fine but your brain processes are not normal.

Mostly a brain functions like a CD player. A button is pushed, the disk is loaded, some tweaking and the expected result = music.

With an altered brain the button is pushed and there is a skittering where the disk (brain) is spinning but not lined up so the laser can’t track = ERROR

Trying to unlock the office door with the car remote

Unsuccessful logging into the office workstation, having to call the head shed to get a “password”

Punching in the wrong PIN number and the ATM machine eats your debit card.

“Oh, I do that all the time!” a friend is trying to console you.

You normally function at high speed and suddenly you strip your gears. You lose part of yourself.

Yes, part of yourself. How do you handle the altered brain?



Pick yourself up; dust yourself off, start all over again
-- Swing Time 1931

Medication for staying awake, pills for nerve pain, hand tremors, dragging leg.

Little things are coming back to you, the stress is easing up and you are more in control.

Stress Kills.

With an altered brain you constantly second guess what you just did. And you get lost, driving to the library when you should be at the vets’ office.

Then you double check everything, and overlook the electric bill.

Like rebooting your computer, close all open windows, save any work you are into, and push the button.

When it comes back it will be fine. Not. You have bad connections in your brain.

You have to change medications again, signs show potential “problems” because that disease modifying drug isn’t working, lets do MORE tests, let’s change drugs.

AND more tests to see if you have lost any cognition.

Can you still understand spoken directions and repeat back 10 words the technician said 10 minutes ago, before you started matching card shapes and put the round peg in the round hole thing. You need to recall the 10 random words she told you.

Exhausting day of tests and the results are NORMAL.


Don’t go changing, to try and please me you never let me down before
--- Billy Joel “Just the Way You Are”

When a person is told a battery of tests show you are NORMAL the first reaction would be YEA! Happy dance, whatever.

But when is normal not good enough?

If you are lucky you can adjust to your NEW NORMAL.

Don’t worry about mistakes with the taxes, the check book errors, and the PIN number for the debit card. The passwords to credit card web sites, passwords at work.

If you have never asked for help in any aspect of your life, how do you manage your new normal?



If you are lucky a loved one will see your terror and step in and gently take your hand.


Or not.


Get it together kiddo—why is the cell phone is in the refrigerator, the loaf of bread is moldy sitting in the back of the cupboard, and there is no cereal. Because you forgot.

Your spouse is upset and says: If I only knew what was going on I could handle it and take up the slack. If I Only Knew you were NOT going to do it I would do it myself.

I don’t know how I forgot something so important. My list was in my purse BUT I COULDN’T FIND IT.

This is your new normal.

You yell at the dog: I HATE YOU! You tripped over her for the 3rd time making dinner. Did you trip or was it your disease?

Good day sunshine
---The Beatles

Months later you don’t remember how distraught you were and you sing in the morning and dance around the kitchen.

You are in remission and you are starting to feel more like you did “before”.

Maybe the meds are working? Family isn’t walking around upset because something didn’t get in the wash basket; toilet paper is in place, all is right with the world.

Except at work everyone knows you are not there today because you are getting an MRI.

Clients ask how you are doing. It is not a casual question, how did they hear about it?

Folks remark that they are used to dealing with you for the last 10 years and what days do you work NOW? Kind of scary when you are worried you can’t perform to your normal standards, and the pressure of dealing with the head shed to meet or exceed goals set by management and it trickles down to: how are you doing?

Your work hours are reduced to give you a day of rest in the middle of the week.

A support person that was hired during your vacation stays for the whole summer.
That is not HELP that is pressure, because the TEMP may be after your job.

Your immune system is so stressed you get pneumonia and end up in ICU for a week.


The boss is asking if you are coming back to work. Clients will tell you he was worried you were not going to make it.

You find out later you “almost died” and you can’t stop crying.

A family crisis and you start having flash backs about a death in the family.

Sobbing the entire time you are making dinner and wondering when this is going to change, it is messing with your brain and messing with your life.

You doubt that you can really come back from this relapse, really come back.

It IS all about me! My Altered Life

Embrace it, and be the very best patient my doctor has ever treated.

Follow all the rules and regulations take my drugs as ordered. Be compliant with the protocol and I will be just fine. Right.

I became a follower of internet forums and found out what my doctor didn’t tell me.

And internet forums set me free.

I found the best friends I had never met.

People who are expert patients, who use all their time reading the medical journals ON LINE, and interacting with others like themselves.

Suddenly I had people who GET IT.

Some were on disability, moving from the fast track to a power chair and some were working full time stressful jobs.

I now know a rocket scientist who routinely travels on business with a wheelchair packed like luggage in the belly of the airplane.

Two research scientists, a couple of college professors, artists and farmers wives and nurses and corporate financial wizards. Dancers, small business owners, mechanics, carpenters, factory workers and housewives.

Women who work for big name companies and teachers who work with “hard to manage” students. A Neo Natal specialist, a Chemist, and a belly dancer.

My life had changed, my brain was altered, my life was altered, and my outlook went from tunnel vision and misery to excitement about learning from these wonderful people.

Art from my heart

Then I was pointed in a direction I had not considered.

My muse was shaken up, dragged out of hibernation and put to work.

My interaction with the arts my entire life was going to take a different direction.

Creativity was sparked by need.

I suddenly found my place in the big picture.

I had HOPE.