Boyz in the Hood and ALS

Have you seen the movie Boyz in the Hood?  That was a popular urban movie that came out in 1991.  It took place in South Central LA and showed the dynamics of living in an environment that was sometimes out of your control.  There was a scene at the end between the actors Tre played by Cuba Gooden and Doughboy played by Ice Cube after Ice Cube’s brother Ricky, played by Morris Chestnut, got murdered.  Doughboy was reflecting because his brother was a good dude with a bright future but there was no urgency from society to understand their life so while sitting on the front stoop while drinking a 40 oz. Doughboy said:

“They either don’t know, don’t show, or don’t care about what’s going on in the hood.”

That scene popped in my mind today as I reflected on the typical response from people when I share my mother’s ALS journey.  I typically don’t go into grave details but I provide enough information to where if I were the one being told something like that, I would have a ton of questions.  99% of the time people have no questions for clarification.

Sometimes, people will come back to me and say that they know someone who knows someone that is caring for someone living with ALS and they will request my information and say they want to connect them to me.  I follow up because for some reason they never have the ALS families information and 99% of the time they don’t connect us.  But each time or every so often when I see them they will say “oh yea, I’m going to connect you with that family or daughter.”  Nothing.

It is important as you live with ALS (patient/caregiver) to connect yourself with someone who understands.  People who are “far removed” don’t understand how important that is and how critical it is to connect the people right away.  The changes that occur with ALS can, at times be slow moving, but too often they are fast moving and the sooner you can understand how to pivot along the way to adapt the better.

I can’t stress this enough, you may be like me where you didn’t personally know anyone who was living with ALS, either way I highly recommend that you reach out to your local ALS Association.  Attend support group meetings and take your loved one.  Don’t wait for assistance or get discouraged when people don’t come around or get around to sharing information with you.  Because truly this is a dis-ease that is misunderstood and will have you feeling like:

“They either don’t know, don’t show, or don’t care about what’s going on in the hood.” –Doughboy, Boyz in the Hood ‘91

ALS Caregiver – They Forget…

I believe that forgetting is hardest for the caregiver.  I believe that because of those moments spent caring for your loved ones when there is no one else around to witness the pain that  you are trying to control with Morphine, the slips you take when there is no help around and you have to maneuver your loved one alone, or during those moments when words aren’t spoken but you both know….

I don’t know what I want from others…I guess more time?  More understanding?  More patience?  More compassion?

People all around me have moved on so effortlessly as if what my mother lived through didn’t happen.  Maybe because it really didn’t happen for them.  My feelings and memories are valid and are real for me.  So however I have to process it is true.  Family members have actually became angry with me because they say I talk about it too much.  Can you believe that?  WOW!  I feel like I don’t talk about it enough….

I will never forget my experience in caring for my mother as she lived with ALS because I completely stopped my world to do it.  I learned more about myself during that time than I had before or since.  That experience confirmed that I am capable of doing just about anything that I want to.  That experience confirmed that patience is a virtue.  That experience confirmed that loving care is necessary for all.

I’m venting right now.  I felt the need to share these feeling right here and right now.  They may quickly forget, but I will never forget.

She Died From ALS and He Cried For Two Years

When I think about it I feel all cried out.  I had to be strong for so long.  I have not seen tears in a while.  Recently my first cousin went to visit my mother’s gravesite.  Even though it has been five year…can you believe it has been five years?  Even though it has been five years, that was his first time visiting.  He lives seven hours away and due to circumstances beyond his control he did not have the means to get to her funeral and this was his first opportunity to visit her site.  I had no idea….

He said that when he went to her site he brought a rose.  When he got there there was a special looking rock and rose petal laying on her grave.  He looked around and there was no sign of any flowers and he felt like those were a gift from her.  He scooped them up and vows to keep them forever.

He shared with me the how upset he was that he couldn’t attend her funeral and how he cried for two years straight!  He said that my mother really helped him with his self-esteem when he was younger and that she always made him feel like nothing was wrong with him.  Even though I hadn’t cried in a long time, hearing him tell me about my mother and how I remembered her to be made me cry a river!  The emotions came so fast and so hard.  It broke my heart!

Oh what I would give to have my mother here to experience my kids as they grow into themselves as teens.  She would enjoy them so much.  She loved being around them and doing things that only a Nana can do.  My daughters are me times two and that fact would tickle her I know.

My saddest thought is, even though my mother was very spiritual and God fearing, I will never forget that moment a few months before the end when she cried out because she wanted to live….

2013 in review

I started this blog as a form of therapy, a way to get my emotions and thoughts out about the ALS journey that we were not prepared to take.  Seeing the 2013 stats for this blog has encouraged me to continue writing and sharing information because of all the people that it has touched.  I’m rooting for a cure for ALS in 2014 so that others will not have to take this same journey.  God bless everyone living with ALS!

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,900 times in 2013. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

ALS Caregiver’s Blog: Your Life Has Value Until the Very End

When a special loved one has a birthday you tend to automatically remember it.  You may not always remember the exact date but around their birthday you perk up and ask “is today your birthday” or you remember and the first thing you say when you see them is “happy birthday!”

Birth is something new and it brings joy and hope.  Birth is anticipated and because of it, you know that the legacy will live on.  Birth represents new beginnings.  A chance to do it right again.  People celebrate birth from the moment you know it will be.  You are congratulated, showers are given, and everyone asks how you are doing with huge smiles.  When you give birth, the date is recorded and it automatically becomes a day that you will never forget.

Death is something new and it brings sorrow and sadness.  ALS bought death that was anticipated because there is no cure the loved ones living are the legacy.  ALS represented new beginnings in my family.  We learned to celebrate each day that my mother woke up on this side of the earth.  When she died it felt like a birth.  It was a day that lives on in my memory forever.  No matter how busy I am or what I am doing, when August 25th (the first of her last six days) comes around, I recall it with clarity.

This year marks three years.  It feels like three days.  The only reason why I know it hasn’t been just three days is because so much life has been lived since then.  I’ve learned to not plan.  There is an old wise saying When man plans, God laughs.  I believe that we all need an outline of our intentions with clear but not unmovable goals.  There’s so much that I want to write but to sum it up I will say, walk by faith and not by sight.  God’s intentions are greater for you than you will ever know.  The lessons that I learned from my mother in her last six days of life were more powerful than any other lessons I learned.  Life has value until the very end.  Sometimes it may feel like you are moving in quick sand or not moving at all, but continue to develop your mind, body and soul.  Don’t let the end be the end, let it be the beginning.

Thank you for reading my blog!

This blog is written in loving memory of Mrs. Jessie L. Barnes

ALS Caregiver’s Blog: Resource for Veterans and Caregivers Living with ALS

ALS Caregiver’s Blog: Resource for Veterans and Caregivers Living with ALS

ALS Caregiver’s Blog: Travel Tips for Those Diagnosed with ALS

Thanks to the ALS Association for sharing this webinar!  They are a wonderful resource.

Upcoming Webinars

Travel Tips for Those Diagnosed with ALS May 20, 2013 at 2 p.m. ET Session number: 673 759 411 Session password: Attopiccallmay1 Click here to register for the call and get call details.

ALS Caregiver’s Blog: ALS Awareness Month May 2013

May 2013 is ALS Awareness Month.

I got to know ALS like family,  October 2008,  through my mother.  ALS was family because like family you can’t pick or choose it is just whatever hand you are dealt.

I find myself, as I am getting older, as I am approaching the age when my mother started having her first symptoms (but not knowing it was ALS), listening to my body more.  Wondering if my stiffness is really something else, if the crack of my voice from being over tired or something else….I remain prayerful and faithful.

ALS is the visitor that you don’t expect, don’t welcome with open arms, and know that once it leaves it will take a loved one.

2008 My entire family was different.  Our dynamics was different.  Our outlook was different.  ALS changed us for the better but it unfortunately took our best.

Be mindful of this dis-ease.  Try and understand it.  Support the efforts that are taking place financially, politically and emotionally.  Reach out to a ALS family in your community and see what you can do to serve.

The thought of  my mother and how she would look at me at times and look to me to understand what she was saying non-verbally enters my mind daily.  Even with her strength, remembering how she cried out one time “why me?” still breaks my heart.

Let this be a month of awareness but also a month that is moving that much closer to a cure.  Please continue to support the ALS Association in your community as they are the front line in this war.  Oh what a world this would be without ALS.

Thank you for reading my blog!

In loving memory of Jessie L. Barnes

 

ALS Caregiver’s Blog: Tuesdays With Morrie

Tuesdays With Morrie.   My son who is the 9th grade came home from school today and told me that his homework was to read the first fifty pages of Tuesdays With Morrie.  My son likes to read and reads quickly so I asked him what page was he one and he told me “20 something.”  I asked home what was the book about so far and if he liked it.  He said that the book is pretty good but new as expecting one of the character to be diagnosed with ALS.  It threw me off when he said that.   I vaguely remember hearing about that book.  Have you read it?  He said it was written in 1997, he looked at the copy Write because it seemed like it was written a long time ago.  Let me know if you are familiar with this book and your thoughts on it.

Thank you for reading my blog it is always written with my mother, Mrs. Jessie Barnes at the top of my mind.

ALS Caregiver’s Blog: D’Jango Unchained

Traditionally for the past 16 years my mom and I would go to the movies on Christmas night as our “girls night out”.  We would see the latest and greatest movie of the season.   It’s funny, I don’t remember the last movie that we went to see but I do remember the circumstances around it.  We went to the movies at a large mall near my home it was December 2007.  This was pre-ALS diagnosis.  She was walking with a cane and walking very slowly.  She had knee replacement surgery the spring of 2008.  She had been falling but didn’t know why and they told her it was her knee.

Fast forward to this Christmas and that new movie D’Jango Unchained with Jaime Foxx, Samuel Jackson and Leonardo DiCaprio directed by Quentin Taratino would probably be one of her favorite “girls night out” movies because she loved historical movies and especially westerns and this movie looks like it will live up to both.  I am looking forward to seeing it on Christmas night.  I will save a seat next to me for my mom, we never talked through the movies so I’m hoping it will feel like we are having our “girls night out again.”

Check out the trailer for the movie D’Jango Unchained and if you go see it let me know what you think.

Django Unchained Trailer

Thank you for reading my blog!  In memory of Mrs. Jessie L. Barnes and all the memories that she created with me.