Have you heard of amyotrophic lateral sclerosis?

No?

How about the ice bucket challenge?

Yeah, I thought that would ring a bell.

The whole ice bucket fascination that swept the web last year was an incredible and completely unexpected explosion of awareness for ALS.  The challenge was a sort of dare and a call to donate to the cause for much needed research in search of a cure for the disease.

If you were nominated for the challenge you were expected to donate $100 to ALS research, or you could do the dare of dumping freezing water on yourself to save 90% and donate $10.

Hold it right there!

Savings of 90% and donate to a worthy cause!?   No wonder it took off like a rocket.

I wonder though how many people actually knew what they were voluntarily dumping a vat of ice water over their heads for.

ALS.  Commonly referred to as Lou Gehrig’s disease.  That used to be about all I knew.  Then came April 2014.  My mom was diagnosed with ALS.  She had been telling me something was really wrong for a while and I readied for some sort of catastrophic news, but nothing could have prepared anyone for this.

The ALS association describes it as a disease that affects the brain and spinal cord where essentially the brain loses the ability to control muscle movement.  It is tough to imagine what that means honestly, but put plainly it swoops it at any time, young or old, and immediately attacks prime capabilities of your body.  There is no rhyme or reason to it.  It may seize your ability to walk, hold things in your hands, hold your head up or even talk.  Literally, this disease atrophies your muscles at an alarming rate and there is no telling where and when the next affect will take place.  Eventually, those with ALS lose all muscle control and will be completely paralyzed.  Perhaps the worst of it is that your conscious brain is unaffected.  So while your body is less and less able to perform any voluntary movements, your thoughts are still there; you become a prisoner in your own body.  No two patients are alike so treatment and predictability of progression of the disease is like trying to predict the future.  And while it is a terminal illness, people can live for decades with the diagnosis though most pass within 3 years.

A year ago my mom was a healthy 49-year-old police officer only a few years from retirement.  Today she is confined to her house and needs help just going to the bathroom.  She used to disassemble weapons and tackle convicts.  Now her motor skills are similar to my 6-month-old.  My heart breaks for her that I cannot do more to help and that there is no help.

More and more it is my dad who is in need.  He is the constant caretaker for my mom and while she may be the diagnosee, he is the affected bystander.  My mom is quite admirable in her adjustment to her disease.  She is not ashamed to ask for help, which she needs more of every day.  She always has something nice to say and encourages us to help my dad because she recognizes his need for it (and stubbornness to ask himself).  The most significant statement my mom has made throughout her ordeal with ALS was just the other day.  It moved me in so many ways it is difficult to describe here without being terribly morbid.  She said that in relation to the burden her inabilities place on everyone, she is glad ALS progresses so swiftly.  In her eyes she finds ALS merciful in the fact that it will end her life sooner rather than later.

That’s my mom.  This wonder woman has given her entire life to ensure joy and prosperity in the life of our family.  Now in her precious little time left she still strives to do the same.  If only we could all be so positive in spite of all adversities.

Perhaps the ice bucket challenge was a practical application demonstrating the sudden paralytic affects this disease has.  I am grateful for the awareness and much needed funds for research this craze brought.

To my mom, I say you rock.

To ALS, I say you suck.

But if I were to learn from my mom’s example, I would say thank you.

Thank you ALS, for not affecting her heart.

 

*There are ways to help ALS.  Donate to the ALS Association to help fund research needed for a world without ALS.  Even more importantly, be open to helping those you know who have this disease, it takes a huge toll on more than just the patient.

See also my other post: Tools to Help ALS Patients

Aware of this, Jesus withdrew from that place.  A large crowd followed him, and he healed all who were ill.  Matthew 12:15