Samuel’s experiences of living with epilepsy

On St Andrew’s Day, we would like to share Samuel’s experiences of epilepsy which he has written in Scots.

Imagine bein chased by someone invisible, knowin they could catch up oan ye at any second but yer helpless as to when.

Constantly waitin in a state ae uncertainty fur this tae happen n bein unsure whether any ae the precautions taken tae prevent this ur workin.

Currently, this is whit ma epilepsy feels like. It is terrifyin and ah live in a constant state ae fear, even though oan the outside ahm always cool, collected, and dashingly handsome.

​Ah got diagnosed wi this condition at the beginning ae 2022, just before ah turned 24.

Ah um grateful fur the many years ah hud seizure-free, however, tae get diagnosed wi suhin which would completely upend ma life in ma mid-twenties wis, and still is, absolutely brutal.

Ah hud ma driver’s license revoked, fur obvious reasons, wi the condition that ah go a year seizure free before gettin back behind the wheel.

That ah’ve hud nearly 20 seizures since diagnosis, the maist recent bein the mornin that ah decided tae begin writin this, is tellin that there’s very little chance ae me gettin ma freedom back any time soon.

​In spite ae this, ah huv adjusted to life without a car particularly well. This came in the face ae constant panic attacks when huvin tae walk maist places masel.

These were horrendous at initial diagnosis, however, huv died down noo – despite the fact that they still occasionally happen.

The attacks were mainly caused by the fear ae huvin a seizure outside the house. Ah huv many irrational fears.

Bein suffocated n swallowed whole by an anaconda is at the top ae that list. However, a seizure alone in a public place isnae that. Ah wis stood alone in Glasgow Queen Street station one afternoon waiting fur ma train hame when boom. Lights oot.

This one wis particularly bad as it was the first ah’d ever hud masel, n ah came to oan the floor next tae the ticket machines wi a bunch ae folk ah didnae know aroond me.

All ah could mutter as ah regained consciousness wis, ‘Ahm so sorry, ahm so embarrassed.’

To the kind folk in Queen Street who were there tae comfort and reassure me, if ye happen tae be readin this, ah am truly thankful.

If there’s one hing ah’ve learned fae this entire mess, it’s tae never underestimate the kindness ae strangers. It is extremely humblin.


Impact on family and friends

That the seizures do not just impact myself, but also those ah know n love is another ae ma great concerns when it comes tae this.

To ma friends n family who have hud tae witness me huvin one, ah feel the maist immense guilt.

For ma Mum in particular, who jumps at every sound ah make movin aboot the hoose, ah cin see the impact it hus every day. The knowledge that ah cin do nothin tae stop these fae hapnin is harrowing.

In ma opinion, the impact that an epilepsy diagnosis cin huv oan the life of the individual and those around them is less widely acknowledged than that of say a terminal illness.

Epilepsy is chronic. It can be controlled – after much trial and error, the stage ahm currently in – but it never goes away.

Ma seizures huv got better since initial diagnosis. At first, they were eight minutes long. Ah’d go completely unconscious, piss masel n try n fight the ambulance crew when they showed up.

Noo, ahm conscious for the entirety of them, can stay oan ma feet n they last for aboot 30 seconds.

Tryin tae see the positives, ah cin say that’s better, sure, but no less terrifyin. This mornin, it felt like ah wisnae sure whether it wis a seizure or a stroke.

One side ae ma body wis completely knackered. Ah tried tae reach fur a door handle n the only way ah cin describe how ma arm felt wis like when Gilderoy Lockart tries tae fix Harry Potter’s broken arm in The Chamber ae Secrets n aw the bones disappear. It wis like jelly.

In fear ae soondin like ahm sookin up ma ane arse, ah will say this. Ah do huv a remarkable ability tae boonce back fae these seizures.

At first diagnosis, ah barely left the hoose fur aboot a month, before realisin that this wis nae way tae live ma life.


Mental health

Ma mental health, as discussed, still suffers peaks and troughs on a weekly basis. The gym helps this immensely.

As cliché as it sounds, fur those strugglin wi anyhin, ah cannae preach the benefits ae exercise fur the auld noggin enough.

It’s changed ma life in a number ae ways and to ma personal trainers who huv helped me through this both mentally and physically, ah must say thanks too.

​In terms ae an epilepsy diagnosis, ah am still fairly early on – despite the fact it’s been nearly a year and a half.

Ah often feel longin fur ma days pre-epilepsy, but who wouldnae? It’s an awfy rough hand tae huv been dealt. The No Man’s Land that is ma life is currently lived in uncertain hope.

Hope that ma medication’s workin; hope that ah cin go a whole day, never mind a whole week or month, seizure-free. Hope is whit we aw cling tae, and ah see it as a beacon the noo fur masel n those aroond me.