This blog has been in my head since late last week but I have been unable to put it to paper until know. I am always happy when I am able to accomplish something, earlier today I wanted to write my Christmas letter, normally I add a Christmas Border to the letter, today I could not navigate how to do any of it so it was left undone. Hours later, here I am writing a blog that I couldn’t manage for days.
This is my brain, its actions and inactions, and this blog is about how late last week after a particularly difficult week, a call from a friend in Ontario, her name is Janet, we became friends through my blog, then further developed our friendship through DAI.
We don’t and can’t always talk as often as we would like and although we have never met in person a great friendship, kinship, for each other has developed and is something we both treasure. She also has Dementia, so we talk candidly about the ups and downs the good and bad, and often our journeys cross and parallel each others, similar things, medically, emotionally, maybe not at the same time and maybe not exactly the same but enough to have a clear understanding of what the other is saying when talking about what is happening to them.
Late last week a lot of our discussion is how difficult it is to be in pain all the time, to have your brain misfiring to sometimes multiple parts of your body at the same time. There is so much that people don’t see, thats the hard part, thats where people question whether you are actually just depressed or perhaps it’s something else but it’s not what they think dementia should look like.
The fact of the matter is most people somehow don’t understand that the brain is the control centre for all things within your body, and when the control centre is faulty all kinds of things happen. Many people say “well ya I get that but”, therein lies the problem, there is not but, because we can’t just do this or that. It’s like when you go to the breaker box to flip the switch because a breaker blew, but when you flip it back on it blows again, theres something faulty thats causing the breaker to blow.
For those of us with Dementia, the breakers go on and off at random, it creates such vast and ever changing array of symptoms and complications, but all of that faulty wiring known as my brain and all the complications it is causing is invisible to you, thus we get the, “you don’t look like you have Dementia” so often, at times I wish our bodies where clear so people could see the inner workings and the chaos going on because my wiring is faulty.
I am in crisis mode, my doctors are working like crazy to try to help navigate and manage it all at best I hope for a reprieve, like the switch gets turned back on and everything can run in some sort of regular or semi regular fashion for a bit again. Its why every dementia is so unique unto the person, because each person brain is going to run differently, sometimes the faulty wiring sends people galloping through to the ends stage, others especially more and more as people are diagnosed earlier and are more likely to seek out ways to help themselves, it may go in steps, you may feel stable in all of it for a while, then feel like you fell off the cliff. It’s all difficult to explain to people and its exhausting to try to live in it.
At best we can give thanks to those who do stick by us, regardless of how much of it they can understand, most of us are grateful for the good days we have and excepting of the not so good and terrible. Most of us are also quite willing to except the end, somedays, often many days, death seems like a more peaceful option than the continued battle we do with our own bodies. We cannot and do not have control over our control centre ( our brain), we can try to stay positive in our thoughts, in our actions, however at times we just have to give into it all. At times although often people say well you look good, when what we really would rather hear is, looks like you’ve hit a rough patch. We are not stupid, our wiring is just faulty, we know when we don’t look good, we often are our own worst enemies for we try so hard to put on a brave face and front to make it easier for those around us. That is not always fair to others because then when we can’t or don’t have the ability to put on the brave face, people have trouble understanding why not. Its not an easy path, on one hand you have to pull up your socks to get through another day, and its important we do that, but it is equally important to acknowledge that we are not made of steel, we will crumble at times and we need to, for we are continuously navigating all the detours our faulty wiring puts in our path, whether, its with our vision, our hearts, our nervous system, our vascular system, the control centre will flip whichever switch whenever it wants.
I cannot win in this race with this disease, I do, as do so many others try each day to forge forward, it takes mountainous effort. I don’t need to win, I just need to hopefully be able to manage for a while longer. I have had more engagement with Doctors and having tests done, over the last week than I care to think about. Sometimes you question whether it’s worth fighting for more time if its all spent living going from appointment and test to appointment and test. But as long as I still have enough of a spark to fight to finish off my bucket list I will, I will decide when its time.
I like my friend Janet, understand all of that as others living with dementia likely will as well. It is why our friendships with others with dementia is vital, we can talk about all those aspects, without feeling like someone will question it, think we are in need of anti depressants, or any of the other varied things we hear about. We fully understand the realities and holding each other up along the way is by far what helps us fight for another day.