Stroke Survivor's Bill of Rights

[myh...@mts.net]

What I Needed Most from My Family, Friends and Myself

1. I needed you to treat me like I was going to recover completely. It might
take two years or five years or a lifetime, but I needed to be treated like I
was going to recover completely.

2. I needed you to honor the healing power of sleep. The brain is a brilliant
machine that processes trillions of bits of data every moment. The brain uses
sleep to shut down incoming stimulation and create order out of the day's
events. In the beginning, my brain wanted to sleep a lot. I believe that it was
partially because we honored the healing power of sleep that my brain recovered
so well.

3. I needed to challenge my brain systems immediately. I understood that
connections in my brain had been broken, and it was critically important that I
challenged the system before more cells had a chance to die. When awake, I was
always given choices - did I want this or that to eat, did I want to do this or
that. I was forced to answer questions that made me think, instead of yes/no
questions that required nothing from me.

4. I needed you to love me - not for the person I was before, but for who I
might become. The woman I had been died that morning. With my left hemisphere
no longer functioning, I needed people to love me for who I had become. I might
have looked the same and sounded the same, but I was different - and that had
to be OK.

5. I needed to define my priorities for what I wanted to get back the most. I
lost my ability to speak and understand language, to walk and drive, as well as
all my science and math abilities. Because I had very limited energy, I had to
focus my time. I realized that I night never be a scientist again, but I had a
message to communicate about the beauty and resiliency of the brain. I chose to
focus my energy on public speaking. Because speaking on the telephone was an
obvious energy drain for me, my family protected me by not letting me speak on
the phone. That was a lot of help.

6. I needed you to focus on my ability, not my disability. I needed to
celebrate everything. If all I was doing was breathing, then we could celebrate
that I was alive - and breathe deeper together. If I stumbled, then we could
celebrate when I was upright! If I was drooling, we could celebrate my
swallowing! It was way too easy to focus on my disabilities because they were
vast, I needed you to celebrate my triumphs every day! My successes, no matter
how small, inspired me.

7. I needed to allow myself to receive support, love, help. It would be at
least two years before we really knew how extensive my recovery would be. I
needed to get out of my own way. I needed to stop beating on myself for being
less. I needed time to let my brain heal. I needed you to cut me some slack and
not be so heavy all the time! I was not less, I was different, and it's OK to
be different.

8. I needed to divide every task into smaller and simpler stages or steps of
action. Instead of rolling over, I might rock. Instead of standing up, I might
sit and rock. Just because you could not see that I was trying, it did not mean
that I was not trying. Sometimes when I was tired, I just needed to sleep, and
I needed you to just accept that.

9. I needed you to assume that I knew nothing, I had, after all, lost my mind.
Pieces of information did not fit together anymore in my brain; for instance, I
might not know what a fork was. I might not know what a shoe was -much less
that my socks went on first and why. As my caregiver, you were my teacher. It
helped when you talked to me, repeated yourself and didn't act like I was
stupid if I didn't get it the first 20 times! Raising your voice did not help
you communicate with me. I was not deaf, I was wounded.

10. I needed you to come close and not be afraid of me. I needed you to touch
me, stroke my arm, my hair, and wipe my face if I was drooling - to be kind to
me. What you said was not as important as how you said it. What you did was not
as important as how you did it. It helped when you came close and enunciated
clearly. If you brought your best self forward, my spirit would greet you -
only when I trusted you as a caring giver would we heal my brain together.