Maria: Hi Ruth. Thank you for taking part in this ‘phone chat project’. I know that you will be speaking about your son’s epilepsy journey to date. It has been quite a journey and I know that there have been quite a few knock-backs from when I first met Oscar in 2016.
Ruth: Oscar has always tried to be positive about this epilepsy, but he has felt the judgement and ignorance of others on many occasions over the years, including family members whom he has chosen to distance himself from as a result. The first seizure which we experienced was in Los Angeles Airport in 1997 when we were traveling to the UK. He stopped breathing and I had to start CPR. While the ambulance officers were attending to him a woman came to me and said, “It’s just a seizure, my uncle has epilepsy”. The word ‘just’ minimised what was happening to my son and this was unhelpful and hurtful at this time of unknown. Fortunately, we had health insurance because Oscar was admitted into a US hospital at a cost of $23,000 for a 26 hour stay.
Maria: Yes! Hospital stays overseas are certainly expensive if you don’t have medical insurance. Did you manage to get to the UK?
Ruth: We did, and we felt well supported by family and friends. I must add though that we are equally well supported here in our New Zealand community and my good friends have given Oscar, his brother (who also has epilepsy), and me the love and the manaaki to help keep us going in some tough times. The supporters have been affectionately named “Oscar’s Army”.
Unfortunately, the medical professionals have not always been supportive, or even understood Oscar’s condition. There is so much more than the actual seizures themselves. I was yelled at by a hospital GP and nurse when I had taken Oscar to the local hospital due to my concerns.
They stated that I was creating Oscar’s seizures by saying out loud another one was imminent. While ambulance officers are always caring and concerned, I stopped calling them as if they could not see a seizure happening, there was nothing they could do even if Oscar was presenting virtually unresponsive. It is a difficult condition for these types of professionals to attempt to assist with due to their lack of knowledge beyond the seizure itself.
In 2019 after an admission to hospital following a prolonged unresponsive period even the neurologists couldn’t agree on what they were seeing, two of which ventured to state, “he is acting” and “it is all in his head”. We, as a family, knew full well this was not the case. We were given no follow-up appointment to discuss our concerns and so we went back to our little community and essentially hid away in spite of the challenges progressing.
Oscar’s life became smaller and smaller due to the increasing and daily epileptic activity he was experiencing between seizures, and the increase in multiple seizures in one given day, this affecting his interactions with the rest of the world. He could have massive falls and his breathing could be compromised needing resuscitating at times. Oscar was regularly picking himself off the floor alone, having smashed his head and teeth, amongst other serious injuries. He was often left confused and he was starting to behave in quite a strange way. The risk of death is real.
Maria: I am so sorry to hear that news. Epilepsy is a complex condition, and it is really important that medical professionals take the time to listen.
Ruth: Helping Oscar through this progression, and his determination I still work and ‘play’, was becoming unsustainable, unsafe and very high risk. In 2020 during a five-day period of being mostly unresponsive we already had a scheduled appointment with his neurologist via video call. His brother and I attended this and felt his neurologist really listened. He had a lightbulb moment stating he believed Oscar to be experiencing progressing epileptic encephalopathy. Thankfully, we have been heard for the first time in years by a neurologist. Honestly, you don’t expect any level of ignorance or judgement from professionals but when an ego is involved it gets in the way of listening and empathy.
These last two attributes (listening and empathy) are essential in my view to the patient AND the family who have to navigate these things with the inevitable stages of grief that occur. We have not felt heard or supported for years. I thank the neurologist for his insight, attention and understanding; this is a refreshing novelty, it has so much value in this journey and has alleviated the subconscious burden of feeling alone. We are in good stead emotionally: being peaceful, patient and living each day with some humour helps to live alongside this condition.
Maria: I understand that there is funding for Oscar to attend a wonderful residential home where there will be staff 24/7. What do you think about this new development?
Ruth: We are all delighted. I can’t believe that Oscar is still here after all that he has endured. As a family we have gone through extraordinary lengths to be heard. Oscar will live with three other young people in a safe environment and there will be trained staff who can help him make the most of the good days and support him through all the others.
Maria: I believe that there are big gaps in epilepsy awareness generally, and society as a whole can have little understanding of what epilepsy is and especially how people are affected by it. I thank you, and Oscar, for telling this story – it is much appreciated.