Learning to walk again

Learning to Walk Again

After enduring years of severe epilepsy, Jenny McEntegart underwent brain surgery in search of  a cure. It worked but meant that she had to learn to walk again. Here she describes the camaraderie of life at the National Rehabilitation Hospital in Dún Laoghaire, Dublin.

Sitting in a wheelchair for the first time in my life at the age of 32, I felt more independent than I had in over a decade. It was summer 2018 and I had just had brain surgery, which left me with compromised mobility in my left leg. And I was happy.

After enduring countless seizures, the wretched side effects of anti-epileptic drugs as well as the trial and error process of exploring numerous medications, the team treating me at Beaumont Hospital decided to investigate whether brain surgery would provide a cure. After conducting many scans and dissecting every conceivable possibility in granular detail, it was decided to go ahead. I was scared but not reluctant.

The surgery was a fantastic success. I went from having 25 seizures a day to being seizure free. It was hard to believe. I had been warned that I would have compromised mobility in my leg afterwards. I was assured it would be a surgical injury that could be treated with physiotherapy. Given that, previously, I never knew when I would have a seizure and wake up in hospital, physiotherapy was a small price to pay for the freedom I had been gifted.

  For physio, I was referred to the National Rehabilitation Hospital (NRH), in Dún Laoghaire, Dublin. I had expected a warm welcome at a bright inviting reception desk. I had expected to be greeted by an engaging character somewhat reminiscent of Mrs Potts from the kid’s movie Beauty and the Beast. Instead, just as I stepped inside, I was confronted by a religious statue.  My heart sank. I felt as if I had walked into an old convent. Instead of lifting my spirits and inspiring me with hope, the dull and dreary building filled me with dread. I listlessly entered the elevator. Even that was slow to ascend! 

Upon reflection, the unprepossessing appearance of the building served only to highlight even more the beauty of the magnetic personalities that awaited me inside.   

If you find yourself a patient in the NRH you have been vehemently assaulted by some horrible health issue. I found the company of fellow patients I befriended to be an invaluable support. It far surpassed any counselling that I could have had. Having people by your side daily that had been through an equally metamorphic experience was a hand hold like no other. We each faced a different route. But as we trudged our way along the road to recovery, we found comfort in each other. 

Nobody understands the plight of navigating through such unfamiliar territory like fellow patients. The absence of motivational quotes, offered far too frequently by friends and family, made room for relaxation. An acknowledgment of how exhausting the situation was did not always require a reply and there was solace in the fact that it did not receive one. We were each patchwork quilts, stitching each other back together before braving the outside world.

The fine weather during the months I stayed in the NRH almost seemed to represent what the surgery had afforded me. I spent my free time with my new friends, basking in the sunshine and my newfound freedom. I no longer needed to fear seizures interrupting my conversations. It was a bright new beginning. As we sat in the sun, sometimes feeling lost and vulnerable, the banter could be harsh and unforgiving, but the morale was always high. At times, the laughter was louder than any heard in a beer garden. 

Remarkably, the lack of condolence was what was most appealing. Among ourselves we didn’t have to deal with the well-meaning but wearying pity each of us was receiving from friends and family Our disabilities were irrelevant. I presented in a wheelchair but so did others. I was not special and therefore, fair game for the banter. Nobody held back, and it was welcomed by all. I played piano in the communal room and was teased that I sounded “like a pet shop on fire” but in the same breath encouraged to play more. A charming gentleman who had lost his speech while battling cancer was not let off the hook either. As he regaled the group with a colourful account of an uncomfortable situation, he had difficulty pronouncing the work “awkward”. Like a car revving up to go he struggled “Aw”- “Aw”- “Aw”- “Awkward”. He received a cheer; he had coined a catchphrase. Everyone would now enunciate the word just as he had.  

A group conversation always featured a cheeky comment in reference to the jovial rivalry that existed between the ‘acquired brain injury’ patients and the ‘spoilt spinals’ – those who had suffered a spinal injury. There were more activities available to the spinal injury patients because funding was provided by a charity. As they arrived back to base boasting of their boat trip, with photos of them assuming the pose of Jack and Rose from the movie Titanic, they were met with hard hitting banter, all in a good spirit. 

There seemed to be a striking number of men who shared the name Anthony, which was abbreviated to Anto and jokingly assigned to every man at mealtime. When I joined the boys at a table in the back one day, they welcomed me by labelling me Antoinette.  

Nobody indulged in self-pity. It would not have been tolerated. Daily you see the harsh reality of teenagers who suffered spinal strokes or people in their 20s who had fallen in a snow fight now rendered paralysed from their chest down. It does not take long to realise you are not as badly off as you might have thought. That bleak hospital full of heart-breaking stories had a palpable air of empathy and kindness like I have never encountered before or after.  

Simple pleasures came from activities such as quiz night, a choir gathering or art classes. All of these I would have instantly shut down if suggested under normal circumstances. I participated nonetheless and, dare I say, began to enjoy them. As our friendships blossomed, it became customary to host a farewell party before the departure of a fellow patient and friend. The bird flying the nest would receive a card and a small gift the evening before they left for home, almost akin to a graduation certificate - REHABILITATED! As time passed, the parties assumed an undertone of melancholy. Having formed such close bonds. They were now bittersweet.

I was saddened most by the leaving party of a lovely lady, Mary O’Shea. I had grown particularly close with Mary. A charismatic, vivacious lady with unmatchable wit. We clicked immediately sharing a love of music and sarcasm. Everyone celebrated Marys 64th birthday by dusting off a karaoke machine and giving The Beatles When I’m 64 our best shot. For the occasion, I baked a chocolate biscuit cake. Possibly the most repulsively presented cake ever. And, as it was devoured, I was told that same, repeatedly! 

I entered the NRH a scared girl in a wheelchair. I left a confident lady walking independently.