Normally when I am sitting in a waiting room for a doctors visit, which happens quite a lot since I have young children and also an elderly mother in law, these moments, minutes or as today was an hour are spent either surfing my phone or reading the sensational magazines they have on offer for all the patients and accompanying people. I usually do not indulge in speaking to the others waiting in the same room, mostly because I am assuming no one is there out of choice.
Today however was quite a different story. I spent an entire hour speaking to a mother, a wife, a woman who in my opinion should be given the medal for having the strongest mind, a faith which I could feel in the room and above all love which she displayed towards her entire family, especially her son Pep.
This is the story of Anna who has a 33 year old son who is epileptic since he was 4 years old. Ups and downs would be an understatement if I were to describe the experiences she has lived in the caretake of her son. Pep who is an athletic and extremely sporty young man was diagnosed very early with this disease and started treatment, in order to lead a somewhat normal life. In the early years of his condition, things were pretty stable because as I know too, you can control your young children and give them a life which doesnt require too much self independance from their side. As Pep grew older, now 17 years of age, his medication had stopped working as effectively on him and this was the most testing period for Anna and her family. Pep suffered notoriously between 17 and 26 years of age and this also marked a period when he wanted to be independant and follow the life of a normal young adult, as his fellow peers. In Epilepsy you are required to sleep 8 solid hours between 12am-8am or at least fulfill these 8 hours within the normal realms of night sleep, you cannot drink alcohol, you cannot drive and basically for a young boy such restrictions are like binding iron chains.
Pep has a passion for cars, just like most boys and he had to take his driving test 6 times before passing it. So extraordinary was his dedication that he never gave up. Once he had his license, he wanted to drive a car but his family feared this would not be good for him, so what he did was make copies of all the keys of the cars at home and hid them in his room. Once his parents found these keys, Pep resorted to hiring cars for a few days and would park the vehicle far from his home, so his parents would never know he had a car. All this rebellion is common for any parent who has a healthy teenage child, but Anna feared the life of his son each time a situation of this kind would arise. I have not had sound sleep for years, often waiting for Pep to come home safe or waiting for a seizure to occur which often happened at nights when he was in his sleep - Anna
His epileptic seizures went from laughing episodes in his sleep to extremes like banging his head against the night stand of his bed until bleeding in the face. So intense are these moments lived by all the members of the family that not only does epilepsy leave marks on the patient but also on those surrounding the patient. Anna spoke of her daughter, 10 years younger to Pep. Nuria was 11 when she had to see her brother live these seizures and as a result of this trauma, till date has a hard time making bodily contact with most strangers.
After several failed attempts of trying different types of medication, barbiturates and other AED's, some having disastrous results on him, not to mention the expense, Anna heard of an operation which had been performed in the USA and was advised by her neurologist to enquire further into this as a possible solution to better Pep's quality of life. It seemed this surgery removed the seizures located in the brain, enabling patients to continue living a perfectly normal life with little or no medication. Pep had to qualify for this surgery and this was determined via a 7 day close monitoring period, where his medication was completely removed and he was watched in a hospital whilst he suffered convulsions and a series of seizures. Anna described this to be the worst week of her life, because all these years she had prevented such episodes from occuring and now she was forced to watch how her son had jerking leg and arm movements, threw himself on the ground and even licked the walls of the hospital room! As she described these episodes to me I could see tears swelling her eyes, but she continued to speak and share her story with me.
Once this period of hell was over, Pep had officially been qualified to get the surgery done. It was a moment of progress, euphoria and a ray of light was seen down the corridor. Nevertheless, it was not going to be a simple procedure given that his seizures were located in the front on his head, nearing the centre of the forehead. The doctor had said he would intersect from the ears and work his way in, but a risk was always hovering. Cutting the connectons between the two sides (hemispheres) of the brain stops seizures spreading from one to another, but it doesn't stop the seizures all together and it could give him more seizures than before. Pep however was the one who decided he would take the leap and get the surgery done. He was 26 and had every right to make that decision!
The operation lasted 7 hours and Anna mentioned she was ready for the worst. In her eyes she had seen her child suffer enough and this was a possibility for his life to get better. He has never complained about his condition or the numerous blood tests or pills he has always had to take and therefore I believe he is a good human being, so deserves a break. - Anna
A miracle took place and the surgery was successful, to the extent that he didnt suffer any side effects. A year after the operation, Pep had not had a single seizure and now after 7 years he is leading a normal life, aided by some medication to prevent any possible seizures.
In this whole journey the family has lived together, Anna explained how each member of the family has been affected in a different way, but all that bitterness has been sweetened by a recovered Pep and a young man who lost 9 years of his young adult life, but is now living that void of his 20s in his 30s. It's a small price to pay, but they are all thankful to the medical team at El Clinico de Barcelona, who despite making them wait for 22 months before being listed for the operation, proved to be the guardian angels for Pep.
A story which has touched my heart and made me realise how much mental strength and faith can do for a human being. Pep being an epileptic patient has run the half marathon of Barcelona this year, plays for a local basketball team, drives his own car and even plays 5 a side football with a group of friends.
Anna is a strong woman who despite having lived so much in her life was smiling at every opportunity during the entire conversation. She spoke to me like she had known me for years and her down to earth attitude also made me realsie how experiences in life ground you and make you a better person.
