Surgery gave me back my life. Rehab gave me confidence to live it

In the last 10 months hospitals across the globe have seen the greatest footfall in living memory. It has been a year that each of us have recognised the many things we take for granted. Lockdown has provided perspective. Hearing of new cases each day and seeing the reality of a Covid patient’s stay in hospital has made me feel even more grateful for my own experience.

In 2018 I spent three weeks in Beaumont Hospital after neurosurgery and a further three months in the National Rehabilitation Hospital (NRH) in Dún Laoghaire. It took me all that time to learn to walk again, after the operation on my brain to cure my epilepsy. Three months was a small price to pay for the new lease of life that surgery has afforded me.

Let me take you back to my life before the procedure: I had been experiencing, on average, 25 seizures a day. This manifested in daily falls, numerous injuries, never knowing when my arm would begin to violently shake or for how long. Since my diagnosis with epilepsy at the age of 14, the condition had been well controlled by medication. But in my early 20s it had become totally debilitating.

Having endured such an existence for 10 years, never knowing when I would be ambushed by my body, it was not new to me to not be able to walk around. But post-surgery it was no longer a gamble. I had one leg I could not depend on, whereas I had spent a decade with two functioning legs, yet unable to depend on either.

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While I had been informed that mobility impairment was a risk due to the area of the brain affected, it was worth it. Sitting in a wheelchair I was more independent than I had been in years.

At least I could now have a meal without an incident. I could have a conversation with a stranger without having to warn them of a likely blackout at any stage. And I could hold my newborn niece.

Improving mobility

The surgeon had assured me permanent paralysis was not a concern. While initially I could not move my leg at all, it slowly began to improve with physiotherapy. The first challenge was standing for the first time, using my arms to grip a walking frame, hoisting myself up with my strong leg.

That gradually progressed to walking with a frame. With all my strength and concentration, I could manage three steps before having to concede to fatigue and sit down again. And, of course, Beaumont was invaluable, discharging me only when I had been linked with a community physiotherapist and placed on a waiting list for the NRH.

Physiotherapy was my primary focus with the diagnosis being what is termed foot drop, where the toes hit the ground before the heel. I still struggle to move my toes and lift the front of my foot. Each day I would attend sessions where I would be guided through strenuous exercises to rebuild strength and regain movement: cycling, knee-strengthening exercises and hip alignment. A month into my stay I was not strong enough to walk independently, so I was fitted with an ankle-foot orthosis or AFO – a device of knee height that slid into my shoe and held my foot in the correct position, preventing me from falling.

For me, physiotherapy had two strands. The fact I had lost control of my leg was only one factor, but, critically, I was inhibited by fear. Not only were they asking me to trust my leg, over which I had little control, they were asking me to walk alone. I had spent years only walking with someone holding on to me. I was petrified. However, with the help of both a physiotherapist and a psychologist, sometimes quite literally at either side of me, I was eventually mentally strong enough to tackle it alone. Granted, I was still nervous, but the strengthening of my leg and the belief that seizures really were a thing of my past gave me confidence.

Confident

I entered the NRH a scared girl in a wheelchair with little movement in my leg. I left a confident lady walking unaccompanied. My leg was stronger and I had regained most movement. While I had the aid of an AFO, I was upright and mobile. I had not been so independent in years. Bambi had found her feet.

Surgery gave me back my life and the NRH gave me the confidence and ability to live it. However, during my time there, and just as importantly as my physical recovery, I formed friendships that I truly cherish.

To be a patient in the NRH is to have had a life-changing health issue. All patients of the NRH have had their lives changed forever in some way. While we were all feeling insecure, having found ourselves in unchartered waters, there was also a determination to fight our way back to some semblance of what life had been like before. We were all in the same boat, though at times it may have felt like a sinking ship. Perhaps our great camaraderie grew out of that. And, as a result, the friendships I formed with the people I met there are cut from a different cloth to my other relationships.

The NRH was not an inviting building at that time. Grey and dreary, resembling an old convent, it had not been what I expected. I had envisioned a bright, pretty building that, on appearance alone, would stir up feelings of hope and determination. That charmless building in retrospect now adds to the beauty of my experience. The silver lining of the cloud shines a little brighter against its backdrop.

It was the venue that hosted the formation of those friendships I will forever treasure. Two years on and I still speak with many of my hospital friends regularly. There is a certain comfort knowing that the person sitting beside you is feeling just as vulnerable as you are.

I was quite fortunate that the weather during the time I spent there was glorious. During our free time from therapy sessions my new friends and I would congregate in the garden. As we sat together, each feeling a shadow of our former selves, the banter was harsh and unforgiving, but the morale was high. There was not a word of self-pity. You would have been embarrassed to do so. It was a sobering place where it quickly became clear that you were not as worse off as you might have thought. Although tragedy lurked on every corner of the halls, there was also a palpable air of compassion, empathy and kindness.

Refreshing

Strikingly, it was the lack of sympathy vocalised among us that was so refreshing. To our friends and family, we were different. However, in the bubble of my new surroundings, we were normal. I felt like a misfit in the outside world but in the company of other patients I fit in perfectly. Of course, there were down days. Plenty of tears were shed. But among the varying and extreme emotions, there was always someone there to pick you up. We may not have shared the same disability but the depressing, exhausted and deflated feeling was one we could each relate to.

It is surprising how easily pleased you become when you find yourself in such a situation. Each week there were activities organised to provide entertainment. A quiz, a choir gathering, art classes. None of which would appeal to me under normal circumstances. I found myself participating nonetheless and even enjoying them. Once we discovered there was a certain budget allocated to a patients’ entertainment fund, there were weekly parties – loosely speaking. A karaoke machine was dusted down. It kept spirits up. After only a few weeks of knowing each other it became customary to receive a gift, almost akin to a graduation present, when one of us would leave for home.

The year of 2020 has highlighted to me just how lucky I am to have crossed paths with such wonderful people. I dread to think what that time would have been like without them. They made my journey so much easier. I like to think the thousands of people who have had the misfortune of falling victim to Covid-19 will have found such compassion and companionship in hospitals.

It is when you are at your lowest that your faith in humanity can be restored. The kindness of strangers was humbling. I cried myself to sleep on my first night in the NRH thinking about how much I would miss my friends. I also spent my last night thinking how much I would miss my new ones.