Linda Doughty, a member of the HealthUnlocked forum, shares her poem with the ataxia community, to express how she feels about what she has been through the past few years.
“I was diagnosed with cerebellar ataxia in 2015 and since then it has progressed significantly. I now rely on using a walker indoors and will be moving from the south to the north to be close to my family.
I met my husband on holiday when we were just 15 years old. We wrote letters to each other because we lived over 200 miles apart (there were no mobiles then!), but we lost touch until 2003.
After rekindling, eventually, I moved down south to be with him and we married in 2006. We had nine blissful years together until ataxia struck me.
Last year, my husband was struck himself with prostate cancer. He is an only-child, so one of my family members had to drive 225 miles to look after me. Due to my ataxia I cannot make or carry tea, therefore we will be moving to be closer to my family.
It must be said that ataxia has changed my life completely but I am so grateful for Ataxia UK.
Here is a poem I wrote about my condition.
I slur my words; I cannot write,
not even sign my name.
I drop my food; need help to bathe,
To others I look lame.
I’ve fallen down and elbow broke,
so I try not to fall,
for example, when I dress,
I lean against the wall
I’ve cramps a lot, get out of bed
to make them go away.
I bang myself, I spill my drink,
I choke most every day.
I used to spend most of my time
working in the garden,
Now walking’s hard and I am tired
Of hearing that word “pardon?”
I see my pots I used to fill
looking so neglected
and pretend that I’m okay –
to be as expected.
My sense of humour – it is still there
But I must concentrate
Sorry I can’t turn round
Or I’ll end up prostrate!
I used to cook delightful meals,
Now I can’t cook at all,
or cut up food, or use a knife
and cupboards are too tall.
I shake sometimes or spill my drink;
shopping I can’t do.
I cannot drive, I cannot bend,
I’m no use to you
Internet shopping has changed a lot
From looking at nice gear
to researching a good walker
and aids that are not dear.
Some days are good, some days are bad,
but wobbly they all are,
I liked to drive but had to sell
my freedom with my car.
My husband and our grandson
found cancer at their door –
I may wobble and slowly move
but I do not ask for more.
To see them brave yet positive
just made me braver too
and feel less sorry for myself –
I’ve seen what smiles can do.
My husband he does everything
he knows I cannot do
without a moan (he sings all day);
he really pulls me through.
So each morning that I awake
I’m grateful for the day.
Although I’m not as I was,
I have no pain to take away.
Just been unlucky so the doctor says
to get such a disease,
so I’ll wobble and I will smile
but hope for a cure – please!
I’m grateful for this forum
where you can have your say
and grateful for the help received
from Ataxia UK.”