Time flies and I keep myself busy. Today’s discussion around the dinner table were about my oldest daughter feeling discriminated because of her gender at school by the boys. They are calling here “just a girl” so she can not be as successful as they will be be. This reminds me of my own battle to get into medical studies and my speech in St Gallen.
It’s not that I’m sad about my disease it’s the frustration how people (read: doctors and nurses) treat me like I don’t understand what they are saying, because I am sick, or the opposite that I have a lot of time on my hand. This might be the way they treat the older persons how are sick in Alzheimer’s but this doesn’t work for me. I want to be able to control all parts of my future. That is why I am so grateful to be a part of the Woman´s brain project. These ladies and gentlemen gets me and treat me as a equal. The official launch in St Gallen 7th of April was so nervous for me. I had practiced my speech on my work colleagues and family members. The one who heard it the most times must be my dog Sam and he gave me his approval. But no matter how many times I read it out loud it still brought tears to my eyes. So for all of you who didn’t attended and for you who did but like me are a bit forgetful…..
I´m Sofia and I am a 41 years old woman from Sweden. (pause) I am here today to tell you about my life. My life has been shaped by many different factors. I’m a wife to my wonderful husband Anders how I have been together with for 18 years. I’m also a daughter a friend, work colleague, dog owner and a mother to two beautiful girls that are turning 17 and 14 this year. The latest and least joyful factor that has shaped me, came into my life about a little more than a year ago. I’m incurable in Alzheimer’s disease.
To be sick in Alzheimer’s manifest to me in different things:
First of all it’s a relief that I finally know what was wrong with me. Because it took so much energy for me to convince different doctors to keep looking and testing me for Alzheimer’s at the same time being terrified to get the results. It also manifests in the knowledge that when I’m far in my disease I would not know that I´m sick. And that I a big relief to know. But on the other hand I will not remember the ones I love.
And they will always remember me in away I don’t want to be remembered in. I know this because I have lived that life myself as a teenager. So what does my life look like? Right now I find myself buying silk flowers because I know that if I get real ones I will forget to water them.I have a lot on my plate.I´m a full time worker at an office so to remember everything outside my work schedule I plan my days on my phone, setting alarms for everything.
There is alarms for the kids after school activities so i remember where and when to pick them up. My doctors appointments, I have two separate doctors in two different cities so of course that it’s a alarm thing as well. I also set alarms for when I meet my friends for a coffee or when I have promised my mom to come and visit. My husband’s schedule is also a must because he works away from home a couple of days every week and some days he works from home.
And at the same time it´s important for me to stay in the moment and not to stress because that makes my symptoms worse. Just listening to myself I get tired. It’s not easy being a woman, mother, wife, daughter, friend and work college. In fact the easiest thing in my life is to bee incurable in AZ. I can always say sorry kids I have forgotten. Sounds horrible….. But it’s still my reality.
I know first hand what I will put my kids and husband through. Because I have been there myself. In fact my relationship with AD started when I was born. My grandmother then lived at a mental institute. During my first year she died and my father pushed so they did an autopsy on her and it showed AZ. This was in 1977. When I was 13 years old me and my family were in a minor car accident in San Francisco. Dad was the one driving the car,on the morning after mum wanted to talk about the accident and dad could not remember it. Then my mum knowed. He died in Alzheimer’s 1999 and his seven years younger brother died seven years after in the same disease.
So I know that I have to beat this by putting my life before my kids. I want to be in every medical study there is so my kids never have to be affected by this. But I can´t…. I have during my first year as affected by AZ written a lot of emails to professors around the world to get into medical studies so I in the future can save my kids.
But I can’t get in. Way ? Because I’m a woman under the age of 50. This is the answer I get. The next comment the professors give me is that they have NO say in the rules of the studies it’s the medical companies who makes the rules.
So now I have to send emails to all the medical companies, And it’s kind of ironic because we are all trying to beat the same horrible disease. And we have to! Because I want to be that, mother, wife, friend and daughter that makes a difference so my kids never have to say the words: Sorry I have forgotten to their children.