8 Months After The Ice Bucket Challenge: ALS Still Needs Support

Last summer, everywhere you looked, people were dumping buckets of ice water over their heads. They said it was all in the name of ALS: the Ice Bucket Challenge.

I, like many others, was very confused when I first saw it. For me, my initial thought was this has to be for something else.

This can’t be for the ALS I know because ALS, like many other horrible diseases and illnesses, doesn’t get the attention and monetary donations it should.

But, it was. The challenge took off at record speed, turning into a social media frenzy practically overnight. As a result, $220 million was donated to ALS charities, and $115 million was contributed to the ALS Association.

By now, the Ice Bucket Challenge has died down, but the message and the awareness is still left standing. We have now reached May, the official ALS Awareness month, a time very special to me and my family.

I was barely 18 years old when my mom was officially diagnosed with ALS in the spring of 2008.

For those who aren’t familiar, ALS (also known as Lou Gehrig’s disease) stands for Amyotrophic Lateral Sclerosis.

It’s a neurodegenerative disease that affects the nerve cells in your brain and spinal cord. Your motor neurons die off, resulting in the atrophy of your muscles.

Patients eventually lose their ability to walk, speak, swallow and breathe. The average life span from diagnosis is two to five years, and currently, there is still no known cure.

My parents sat me down in our kitchen and told me what she had. They explained it was a fatal disease, but that it progressed slowly.

I honestly couldn’t comprehend it. I had no idea what ALS was, and in my mind, I thought she would be sick but still get to live for another 20 to 30 years.

To this day, I’m unsure if my parents were trying to protect me from the reality of what was about to happen or if they truly had no idea what was to come.

My mom started out with a cane, and then she moved to a walker. By October (2008) of my freshman year of college, she was almost completely paralyzed from the waist down.

She would never walk again, so she was confined to a motorized scooter and eventually, a heavy duty wheelchair.

With this, a lot of changes needed to be made at home. Ramps were brought in, and wheelchair accessible showers were installed.

As the disease progressed, she was given special utensils with grips that were very large in diameter, because it was too hard to close her hand around the skinny stems of the forks and spoons we had.

She could only drink from paper cups with straws because glasses were too heavy, and her arms were too weak to hold them.

She needed care around the clock and help doing everyday things like showering and going to the bathroom.

It felt like I was watching her regress back into childhood, unable to do anything for herself anymore.

During this time, I was at college an hour and a half away, and my anxiety was sky high.

Every time I got a phone call from someone from home, I was afraid this was the call. The call that told me I needed to come home and say goodbye.

I was on edge 24 hours a day, seven days a week. My nights were filled with restlessness because I was sick with worry.

By my second semester, things with my mother were progressing at an alarming rate, so I came home almost every weekend to see her.

ALS dragged my family’s emotions through the dirt and then continued to stomp all over us. Of course, my mom had it worse.

There were nights she would wake up screaming because she forgot she was paralyzed. And because her muscles were failing, she had muscle twitches that made it feel like her skin was literally crawling.

At times, she wished she could just jump out of her own skin. She began to experience difficulty breathing, so she was given a BiPAP machine by the ALS Association.

At first, she only needed to use it sparingly, but as the disease progressed, she found she needed to rely on it more frequently.

The issue with the BiPAP was that it had three settings to help with her breathing.

Once she got to the third, there was nothing else they could do for her because she had refused a tracheotomy from the beginning and had signed a do not resuscitate.

Aug. 11, 2009 was a warm and sunny Tuesday morning. I remember this morning so vividly because it was the worst day of my life, the day ALS took my mom’s life.

And as silly as it sounds, even the weather made me angry. I didn’t understand how it could be so sunny and cheerful outside, while the inside of my house was filled with the people I loved most grieving. I wanted the Earth to mourn with us.

We all know real life is not like it is in the movies. When we take off those rose colored glasses, we are plunged into what life really is.

Yes, our family was all crowded around her wheelchair in my parents’ bedroom, but there were no final heartfelt words, followed by the peaceful closing of the person’s eyes.

Each breath she tried to take was harder than the last. Having to sit next to someone you love who’s dying and not being able to do anything about it is one of the most helpless feelings a human can feel.

Each day, my heart grieves for her a little more. But what gives me strength was seeing her strength.

She was ultimately handed a death sentence when she received her diagnosis, but she never lost faith nor had a negative attitude.

I think you can truly see someone’s character when his or her life is being tested. How that person chooses to hold on says a lot about him or her.

Before her passing, she had written us letters. Something she wrote that has always stuck with me is to not let our grief and anger consume us because she had seen it rob people of life.

All life’s experiences change us, and she wanted to be the reason we make ourselves even better.

I think this is advice my family has tried to take to heart. So, to help ease our pain and help others who have been diagnosed, we immerse ourselves in charity and hold fundraising events.

We have a memorial fund set up in her name, and the money goes to different patient services to help people living with ALS. Equipment for ALS patients is extremely expensive; the wheelchairs they are confined in cost thousands of dollars.

According to the ALS Association, there is no known cure at this time. It can cost $2 billion and take approximately 15 years to bring just one new treatment into the market.

With the money from the Ice bucket challenge, they have created four collaborative research initiatives to combat ALS.

May is a favorite month of mine. Not only is it when my mom was born, it’s also the month of ALS Awareness.

Each year, we honor my mom and others living with ALS by participating in ALS walks and by running a fundraiser ourselves.

May is the month I cherish the most. It’s the month to spread awareness and educate people about those who are suffering with this horrible disease.

I would never wish ALS on anyone or for anyone’s family to go through it. My only hope is that one day they find a cure.