Every appointment is made with good intentions; I don’t miss them on purpose.
Please don’t assume when I don’t show up for an arranged meeting, or message you back immediately (or within a couple of days even) that I am intentionally standing you up or ignoring you. Sometimes I just don’t have the energy to formulate the words for a response, or I legitimately forgot about our arrangement.
Some weeks I seem to have everything all together and I manage to message everyone back, attend all appointments and answer all my emails. Other weeks, the mere thought of opening my email inbox drains the little amount of energy I have remaining.
Epilepsy is not just about seizures. The memory loss and lack of energy, accompanied with constant bouts of headaches and migraines, affect a lot of Epileptics on a daily basis and when you accompany that with depression and anxiety, it is often crippling and seemingly impossible to overcome.
There have been many times when I have forgotten something important, for example a few years back I called my mum one morning to have a yarn and a catch up and part way through the conversation she asked me why I was not at work. I had no idea what she was even on about and had no memory of ever even having a job, let alone what my job description and hours were. While my mum was telling me the name of the company I worked for and what my boss’ name was, my phone started beeping, indicating I had another call.
I put mum on hold and answered the other line. It was my boss, a man I had no memory ever speaking to. He seemed like a nice man, was considerate and understanding of me ‘skipping’ work, but he explained to me that as it was the fourth time it had happened in so many weeks, he was unable to take the time to retrain me for my position yet again and he had no choice but to let me go.
Once back on the call to my mother, I burst into tears as I explained to her that I had just been fired from a job I didn’t even know I had, by a man I have no memory of ever meeting. I worried about how I was going to pay my bills and put food on the table now that I was unemployed and my mind was drowning in an ocean of concerns that had not even entered my thought patterns only moments before, when I had picked up the phone to talk to my mother.
My mum did her best to calm me down, offering countless solutions to my problems, none of which seemed viable to me in my state of mind. I could go to Centrelink and apply for a pension, but that would take time. I could move back home, but that proved I couldn’t do it on my own. Mum could help me out for a while and there were services that could assist me until I got the pension, but I didn’t want ‘charity’. I wanted to do it on my own, with no help.
I worked myself into such a state, I hung up the phone and only made it part way down the hallway before my mind gave in and I had yet another seizure. That was the beginning of a very long stint of constant seizures.
Today I still miss appointments and often get calls asking why I didn’t show up. I plug all my appointments into my phone to give me reminders, but like most people I often tell myself I’ll be okay to put the appointment into my phone later and then forget about it and wander around knowing I had something o do, but not able to remember what it was.
Then, of course there are the appointments I do remember to attend, but have to leave part way through because Cruizer has given me a warning that I am not 100%. This does not always mean I am going to have a seizure or that my life is at risk, it could be that I forgot to take my medication, or that I was panicking about something and needed to remove myself from the situation.
I am okay with being unreliable. I have lived my entire life missing appointments and having to walk away from conversations part way through. I am okay with re-booking or missing out on certain events, life is full of wonderful and amazing experiences and I know I won’t miss out on all of them.
The question is, can YOU handle it? Are you okay with me not turning up sometimes? Are you okay with me having to leave part way through our morning tea? Are you okay with me not calling you, responding to your messages, or keeping up to date with you on a regular basis? Because if you’re not okay with that, then may I suggest we shake hands now and part ways.
Because this is who I am and I have learnt to embrace it.