Part II of Another Stroke-a-versary

So for the very first time today is six years since my "other" stroke. You know... the one they didn't tell me about?

I don't know that I've fully processed it yet, I found out about it when I was 6 weeks' pregnant and my renal specialist was reading my hospital file. Not the greatest day, and not the greatest way to find out. He advised me to request a copy of my medical records and to get it investigated. While I did get my records, and I did look at them briefly before bursting into tears, I haven't gone the next step to have it investigated. I do want to, I just don't have the emotional energy to process it all right now. Maybe when things settle down I will do it, I know I need some closure and I need to understand why the information was withheld. Why people made this decision about me.

I do know there is a lot of grief associated with these anniversaries for me this year. Just when I thought I was coming to a good place with everything, the wounds are ripped open again and I'm back where I was all those years ago. The rational part of me knows that anger and sadness are just steps on the journey to acceptance. But another part of me is sitting, huddled in a corner, shaking and sobbing and trying desperately to make sense of things. The flashbacks, the memory that I now have to make new sense of. I remember thinking at the time, and have thought this many times since, how grateful I was that the stroke happened while I was asleep so I don't remember having it. Now that I know my "panic attack" was another stroke, I find it really challenging to think about. Was it kind that the doctors didn't tell me? Why didn't they keep me in longer after the second stroke? I lost more the second time than the first. I remember being able to say one word: yes. I had no other words at all. I developed a severe stutter afterwards. I stopped sleeping at night. I couldn't walk or move initially. None of this was addressed at the time, and it took a lot of hard work on the part of my Mum to get me some of the help I needed.

This is one reason why we really need a new approach to young stroke. No more of this "you're young, you'll be right" attitude. I'm tired of living with this invisible disability and having people brush over the impact that it has on us.

I feel powerless.

They say "knowledge is power". But knowledge after the fact doesn't always allow you to take control of a situation. There is no accountability, no one to answer the questions I and my family now have. Some people are okay with that, reasoning it that it won't change anything. But if no one takes a stand, no says "it's not okay", nothing will change for people in the future. There have been giant steps forward in raising the profile of young stroke, however we have taken but the first step in the marathon to change things.