This is what it feels like…

I would like to give you some insight into what it is like to live with someone with epilepsy, as it might not be a familiar experience to everyone. So, we are on holiday, Joshua has woken up happy and we have pottered about the house until late morning, enjoying a leisurely bath and getting re-acquainted with everything. We go out for a beach walk with the three dogs, and Joshua delights in throwing stones into the sea, then walking along the wet sand, helping me to push his wheelchair. We stop for lunch at a restaurant and its sunny enough to sit outside, with the dogs tied up next to us, and Joshua drinks his orange juice and devours his scampi and chips. The day has been perfect so far and we walk back to the house, where my husband lights a fire to keep us cosy, as we snuggle up together on the settee.

Joshua and I are enjoying a siesta together when suddenly, without any warning, I feel his body tense up next to me. I wake up from my doze with a jolt and he is mid-seizure – his face is contorted and his arms and legs are straight. His socks have come off so I can see every toe bend out of shape. I rub his back and try to reassure him, telling him that he is not alone and that it will all be over soon. His poor body relaxes, just for a moment, then another wave comes and he has gone again – his eyes disappearing upwards in their sockets and his mouth gurgling with a terrible sound. For the next five minutes, he goes and out of these seizures and rather than slowing down, they seem to get shorter but more frequent. Joshua’s face flushes as he gets hotter and  he looks exhausted, in between the seizures, worn out by their violent impact on his body.

These seizures are not going to stop on their own, as they are still coming quickly after five minutes and so my husband fetches his changing bag that contains the rescue medication. I wave the syringe in front of Joshua, warning him of what has to happen next unless he can re-gain some control. But several rapidly follow each other and so, I have no choice but to administer Midazolam. It goes into the jaw cavity , where blood circulation is good. Initially, it would take instant effect, but these days it can be up to another ten minutes before the seizures release their hold on our son.  That wait for effect seems forever as, if it does not work, then it is necessary to call for an ambulance as we are not able to give a second dose, due to the risk that Joshua’s breathing may be compromised ,so he needs to be somewhere with oxygen and with monitors.

Thankfully, after an agonising few minutes, the seizures start to slow down, there are longer gaps between them, and eventually they stop all together. Joshua now looks not flushed, but deathly white, but with dark rings under his eyes, and he is exhausted by the whole episode. He stares around, looking dazed and then he curls up on the settee and he goes into a deep sleep for around an hour. Our happy, lively son has been attacked by epilepsy, once again, and leaves him battered and bruised by the battle. We know that this is not a one off, we know that he will have many more battles just like this one and they can strike at any moment, when you least expect them and often at that least convenient. Most cruelly, they can strike when he is excited, as well as when he is unwell or over-tired. They rob Joshua of his sunny personality and they suspend time while they are happening.

Joshua has suffered from seizures all of his life, but has been on anti-epileptics for 14 years now, so you would think that we were all used to them by now, but each episode is still frightening for all three of us. We know the routine, so onlookers will often comment on how calmly we respond, but believe me, that is all an act for Joshua’s benefit. He needs to know that he is in safe hands and I do not want to pass on my fear to him, so I play it cool, even though inside I feel sick. I too am exhausted once Joshua finally gives into sleep, but I am then on guard for a repeat performance, so I cannot simply resume my siesta – that moment has gone.

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