My Poem

nothing's too much hassle

when you first get MND

don't hesitate to ask for help

from lifts to cups of tea


with life expectancy so short

we'll do everything we can

to make the little time you have

not just go down the pan



excursions out or just drop round

to give you company

not just good intentions said in vain

but actioned faithfully



throughout I've made an effort

at self sufficiency

I hate to be a burden

on friends and family



the DSS do all my care

its a time consuming job

hours and hours are spent each week

to hoist me to the bog



or connect my stomach feeding tube

to tasteless liquid feeds

no gastronomic pleasure

just dietary needs



Schoolboys' bed times, carers changing

inflexible routines

are a selection of the downsides

for choosing this regime



most of what I need to live

is arranged by your's truly

using email, text and skype

it's all arranged by me



But it minimises impact

on those who otherwise

would have to wash and wipe and feed

and not live out their lives



I'm not trying to be a martyr

I like being in control

and not experiencing the guilt

of burdening another soul



but for a while I've noticed

that people have grown bored

I wasn't meant to live this long

I have become a chore



my dependency on others

is greater than before

so my need for help and favours

is only getting more



scintilating conversation

won't happen in the main

you'll have to drive my wheelchair

I know that's quite a pain



Maybe you feel awkward now

seeing me this way

but you know as well as I do

inside, not much changed



Although our lovely garden

is great for sitting in

5 hours a day, most days a week

appeal soon wears thin



I don't want anybody

to feel they're duty bound

to take me out, amuse me

or even come around



but it would be great occasionally

to go where there is life

beyond the pond and guinea pigs

it really would be nice



I realised that I have lived

past my expiry date

its quite an inconvenience

more time you'll have to wait



In the meantime, don't forget

what you said back when

and text or mail or skype me

occasionally now and then



this poem's not for everyone

no names I need to say

there's really no hard feelings

well not yet anyway!