Tuesday, April 1, 2008

Paula Ann Jenkins 61
Diagnosed with ALS 4/07 Passed away 2/08

Left behind 3 adult children 39, 38, and 28 years old. 3 grandsons, one granddaughter (2 months old), 1 mother, many friends, and 2 cats

To Whom It May Concern:

Obviously…letter writing campaign going on-wanted to give my 2 cents worth!

I keep re-edting this letter and am having a really hard time getting it out because I keep trying to find the words to sum up the craziest thing that ever happened to me. I'll never be left without a story to tell that is for sure. You want a funny story, sad, pathetic, inspirational? Well it all happened and it all happened in one year.

A year ago today my mother was alive and in the midst of tests and «I don't know what's wrong with yous». At this time last year we had no idea that the rest of our lives were going to be spent without her. And I had no idea that my sister would not be talking to me! Life changes on a dime.

My mother passed away 10 months after she was diagnosed. Some people like to call what we've been through a journey and that is not being trite or overdramatic -I feel like I've been through a war I've done things I thought I would never have to do, made decisions that I never dreamed would have to be made.

When my mom was finally diagnosed I expected my mother to have the opportunity to fight this disease with every resource available.

I did not expect:

• That my mother’s life would be shortened because we didn’t have a wheelchair accessible van to get to the better doctor.

• That a terminally ill person would have to wait 4 months to see a doctor! THAT is disgusting! I had to beg and plead for my mother to get medical attention from day one to day last. She was given the worst care and bad advice from people with degrees every step of the way!

• I did not expect that my mom would have to sit in her own feces for hours because her morning health aide overslept, and her afternoon aide just decided not to show up for work that day!

Lest you think I’m a whiner I’ll give you the up sides.

• My mom had a rough time in her life -like everybody else some was her own doing some just bad luck. She lived with a lot of fear and frustration. All of that went away when she got this. I am proud of my mother she died with dignity, strength and courage.

• MANY MANY people went way above and beyond for my mother. These stories are the ones that made it so hard to keep this letter to just one page. I want to give everybody their due and tell about each person and their kindness, generosity, and compassion.

• My mom and I laughed our asses off on many occasions. I hold the record -6 minutes! to whip a wheelchair out of the trunk – lift my mom INTO the wheelchair and onto the toilet at the 7 Eleven!

AND I never realized until now:

That if I live to be 78 years old I will have lived more than half of my life without my mother in it!! And that is what this is about. Some attention needs to be paid to ALS, to find a cure, a treatment, a test. Please read all of the e-mails believe me you will be blown away by the stories I know I have.

Thank you
Stacey Lisk

1 comment:

juri said...

Hi Stacey,

I know how hard it must be to have been a care giver for your own mother. My boys are still young and innocent. They kind of see things as it is. My husband goes to the support groups with me, and he is now learning that we have a tough road ahead. I am lucky that my progression up to this point has been slower.

Thank you very much for staying on with LWALS group. All of us are true champions!