My legs don't work; my ears are fine (and other annoyances)

"You're such an inspiration!" 

Life in a wheelchair is life... but just in a wheelchair. Of course lots of things are more difficult. If the person who achieves mobility through the wheelchair used to be able-bodied, they obviously had some huge challenges to overcome. But the bottom line is - this is their life. That sounds simple, however it seems to be overlooked by many people.

When my friend with Spina Bifida is spoken to loudly and slowly, she looks up at the speaker and says "My legs don't work, but my ears are just fine."

My friend who is living with a Spinal Cord Injury says that many of the women with whom she works, who are also "in a chair", absolutely hate being told that they are an inspiration - especially by strangers. Imagine, being a wife and mother, shopping for groceries, in your wheelchair, and having a total stranger tell you that you are SUCH an inspiration... They call it the "I" word, as if it's almost a curse word. Think about it from her perspective. What exactly has she inspired you to do? Don't ignore her, but don't say something so empty of meaning. If you're looking for something to say, maybe you can say "Is there anything I can help you with?" She may need something on the top grocery shelf, and your offer would be gratefully received.

More on this tomorrow. Until then, may your eyes be open to the person, and not the chair.

Listen to me, please

As a caregiver, or "personal assistant" as I like to refer to myself, it is very difficult not to be deeply saddened by the hardships suffered by those for whom I care. At this time, my assignment takes me into the long, sad goodbye of ALS.

As the ability to speak becomes impaired, or begins to go away completely, a huge chunk of life's joy is stolen. Consider what it would be like to have a great thought, a funny joke, an observation, to add to the family's conversation at the dinner table - but nobody hears you. Your lips move, and you try to summon the air and the strength to be heard above the clamor, but nobody is watching. Nobody is listening. So you lift your eyebrows and shake your head slightly, two of the movements still allowed by your failing body, and you open your mouth to allow your caregiver to continue to feed you. The thought will pass.

ALS is a deliberate and focused thief. It takes every part of human independence, one function at a time. It does not, however, touch the personality, brain function, or physical sensation.

If you have a family member or friend with ALS, and they are having difficulty communicating, please know how frustrating and degrading this can be. Please, please listen. If they could, without losing that last shred of dignity, they'd plead with you "Listen to me. Please." All too soon they will be silent. The disease is relentless, and like a flood, it seeks out places to destroy. It will destroy the ability to speak. It's just a matter of time.

Hush, now, don't cry

How does the Care Giver stay compassionate and gentle, understanding and sympathetic, but not crumble and fall apart?

This is not an easy thing, and I don't really have an answer for you, but I want to tell you my story.

I am caring for a man far too young to be experiencing the revolt of his body called ALS, or Lou Gehrig's Disease. It's inching forward and stealing his life, one muscle, and one function, at a time. Two of the things this disease has not, and seemingly cannot steal, are his intelligence and his sense of humor.

That video shows the stark reality of what this disease does to the person who has to endure it. I want to do a series of articles on this condition, to help friends of those who have ALS understand a little bit more about what they can do to help them. The person is not the disease. The person is living with it. If you love them, please take the time to learn how you can love them well.