Article: Those with ALS redefine what it means to be alive

Tuesday, July 23, 2013
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I come across this story on CNN today. And it just reminds me of my dad during his last week.

"-- With the tap of a toe or the blink of an eye, those with ALS are redefining what it means to be alive.
Just a year and a half ago, my mother, Myrna Malveaux, 69, was healthy. Our family's matriarch, she was the one who was the life of the party, the trusted confidante but town crier of all family secrets, the glue that held my father, me, and my three siblings together.

When I was told she had ALS I honestly didn't know what it was. But then my sister described it to me over the phone and I had to pull over the car. It's a fatal, fast-moving neuromuscular disease that would paralyze my mother limb by limb. First robbing her of her ability to swallow, then speak, move and breathe.
When that reality set in, I spent many nights in my home, crying on the floor. What enabled me to get up was that my mother accepted her fate with a strength and grace I'd never seen before. In anyone.
When she began choking on her food, losing her ability to swallow, she got a feeding tube.
When she lost her ability to walk, she got a motorized wheelchair.
When she could no longer speak, she picked up a word board and started spelling out her conversations, still telling my father what to do.
And finally when she lost her ability to breathe, she got a tracheotomy and ventilator to stay alive.
...
My mother smiles when she sees her grandchildren, her eyes light up when you walk in the door, she relaxes when the sun shines on her face. These days our family is just about hanging out."

Source: CNN

A Tragic Day

Sunday, June 30, 2013
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I woke up this morning and was hoping that what I heard yesterday was just a dream.

A friend of ours took his own life.

Even though I barely slept, I am still hoping it was really just a dream while I am writing this. I even wanted to drive to my friend's house just to verify that this is not a joke. I have been checking local news, reports, work email since last night. Anything official that will tell me this is not a rumor.

But I know people who informed me this news wouldn't make a joke like this. Ever.

I am writing this with anger because with many choices my friend could choose to solve the problem he chose to end his life.

I am writing this feeling so upset because my friend chose not to be with his caring family and friends when he felt so down.

I am writing this with sadness because one life is gone. A young life with the brightest future.

Why did he let himself hurt so badly that he couldn't cope with?

With a lot of experience dealing with so many difficult people in his career why could he not be able to deal with a rejection in his personal life?

I would never know the answer to those.

If you recall, I create this blog because I lost both of my parents to cancer. I witnessed their premature death. I learnt the value of life and living in one of the hardest ways, losing the loved ones. And I always hope that what I post here will inspire you to live in your very own best way.

When you feel you hit the bottom, you could only go up from here. You have to believe that there is a better place. You might have to go through a lengthy period of tough, awkward, embarrassing and humiliating time. But you have to stay focused on how to get there, a better place, and be there. You channel to the positives. There will always be tomorrow. There will always be new light showing a new path to walk on, a new day to start from, or even new rain washing the old dirt away. There will be a new person, new people in your life if you open up. There will be people that you will care, help, love and you will get those in return. Soon you will prove that you could be strong and stronger. And before you know it will turn into months and years from today. Then you will look back and you will find that that very pain doesn't matter much anymore.

To you all, I insist that for you to be happy it's all about how you look at things around you. It's all about how you make a choice and there are many choices. You are in charge of your own life. You choose where you want to be and how you want it to be. You don't put your life or your happiness in other people hands. You are responsible for yours.

My deepest condolences to my friend's family.

Shot in the dark: Blinded soldier aims for Paralympic Games in London

Wednesday, June 13, 2012
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Excerpt from the news


-- Blinded last September by a dirt-cloaked bomb in an Afghan ditch, Snyder, 28, slowly is creating a fresh vision for a life once blazed at high speeds and even higher tension. The former bomb defuser is, for now, interning at a Baltimore software company, staying at a corporate apartment and navigating with a cane. He also is logging 4,000 yards per day at a local pool and — this week — dreaming of London."


“Part of getting an injury like this is the idea that you’ve lost a part of you, and now you are — for lack of a better word — weird. I can’t do things the way I used to do,” Snyder said. “It’s a hard hit to your confidence, a hard hit to who you are. So being able to excel at something, to do it very well, is huge in gaining your confidence back, and gaining back that piece of you that you lost.”


“I knew the risks I was assuming. I knew I was very fortunate to be in that hospital bed and not in a coffin in the ground.  And I knew I could not control the past,” Snyder said.

“At that point, I made a decision: OK, so now we move forward. How do I start to gain my independence back? How do I get to the bathroom? How do I feed myself? Where is the fork and spoon? I had to figure out how to eat spaghetti out of cup. That was the only way I knew how to eat it. But I was adamant: I want to do this myself.”
By late October, Snyder needed a refuge of sorts from the walls he repeatedly smacked with his body and face while learning to walk with a cane. He stepped back into a pool and swam, pounding out a few hundred meters. --



Resource: MSNBC By Bill Briggs