This is the sixth story I’ve received. Thank you to the person who shared this.
I know some of you would like to tell your story and you don’t because you don’t have a website or a blog to put it on. NOW you do! I’m hosting stories (anonymous and public) on my blog. I can truly say from my own experience that the world will listen and be kind ❤️ Message me or tag someone who has a story the world needs to hear. (Ps. a list will do... no need for essays or eloquent prose) There's no deadline. Just know this offer is always there.
“I have no words.
I have always had words, I’ve always turned to them for comfort, but right now they are harder to find. I’ve started to write this so many times but have never been able to finish – perhaps because if it’s written down it becomes real.
When my dad had a stroke I wanted to write. I wrote a blog. I wanted to write a book. I wanted to tell people what had happened, to explain what having a stroke might mean. I wrote every week, sometimes I wrote every day. I wrote to tell the story. I wrote to show what living with a stroke might look like. I wanted people to know everything – to know that sometimes you get sick and you don’t get better. I didn’t know that sometimes not only do you not get better, but you get worse.
I never thought my dad would have a stroke but I knew it was his biggest fear as he had told us one Sunday, while we ate bagels for lunch. In the days and weeks and months after the stroke that conversation often popped into my head.
I never thought my dad would get dementia. Perhaps that was one of my biggest fears. Dementia happens to other people’s parents – not one of mine. It doesn’t happen to healthy 83 year olds. It doesn’t happen where there is no history of it in the family at all.
When my dad started to get more forgetful and confused, I didn’t want to write. I didn’t want to tell anyone what was happening. Perhaps I didn’t want to believe it. Perhaps I couldn’t bear to see the look in people’s eyes when I told them. Perhaps I just felt like there was nothing anyone could do. Perhaps I also feel like there is still a stigma, a shame of sorts, associated with it.
The doctors say we need to manage with the situation as it is. It is what it is. And of course, that’s true but with more people being touched by dementia as our population ages surely we must be able to find better ways to make living with it easier, gentler, supported and fulfilled. We surely need to make this feel normal – even though it’s a normal nobody ever wants to live with. Dad lives a happy life – he always tells me that he’s lucky to be alive, lucky to be with us. But sometimes I can see that life is a challenge for him, it’s frustrating for someone who was a consultant in a hospital not to be able to express himself. Hard to have no words.
I worry. I worry more than I have worried in the past, and for someone with worry in their DNA that’s a lot of anxiety to hold on to. I am amazed how worry can manifest itself as physical pain. How sadness really can hurt. I try to stop my head taking me to the worst possible outcome in every situation– but when the worst has happened it’s sometimes hard not to go there. I sometimes write in a gratitude journal because I can, and because it helps.
I miss my dad. I feel guilty for missing the person who isn’t there whilst still able to hug someone who is. I feel guilty for feeling this loss when there is still someone to hold on to. I miss finding it easy to find the words. I’m grateful I’ve found some. I hope that there are more to come.”
You can read the other stories here;