Kylie sent us this poem that she wrote about her experience of having ataxia, Wernicke’s Encephalopathy and fatigue. We want to thank her for sharing her thoughts and would encourage 16-30 members to keep sharing their stories and work. 

My legs

I may be in a wheelchair, But it’s not my legs that don’t work.

It’s something rather complex, My legs don’t even hurt.

The real culprit of my ailment, Is hidden deep within.

And all your passing judgment, Makes your assumptions all a sin.

Now my battle isn’t easy, Without your whispers and your stares.

But with these both factored in, I often cannot even dare.

Now as I mentioned complex, It’s easier to be.

Than know this form of ‘brain damage’, Is not at all that obvious to see.

One day I may seem normal, You may see me out my chair.

Standing proud and able, But there is much more for me to share.

When you do simple tasks, Like stand, turn or talk.

The action is something natural, It often doesn’t even need a thought.

But this is where we differ, And my difficulties arise.

Each task for me needs careful planning, Yet sometimes I am surprised.

The stages of each action, Considered with my ‘things’,

Like my balance and my movement, No alikeness in their stings.

My life has no continuity, No task ever the same.

My abilities they always differ, And I am often left ashamed.

Now please compare your judgements, Consider how you stare.

Yes my legs are moving, But there is no standing here.

Now listen to your whispers, Assumptions about myself.

I am nowhere near past it, Or destined for a shelf.

Each day is a constant battle, Against the ground and my head.

I do not need another fight, I have enough to accomplish instead.

So next time that you see me, Wiggling my legs each day.

Smile politely, even laugh along, At my own special little way.

Remember we are all different, The reasons are the same.

Not all that use wheelchairs, Are without legs to move today.


*Wernicke’s Encephalopathy, Ataxia, Anxiety & Fatigue warrior