I made an appointment for an MRI for my sister, knowing that AVM's are familial. No genes have been found yet, but the human DNA is filled with the unknown, and it's something that has been established as familial.
So we can either be assured that she doesn't have it, or if she does, we can take precautions, or start some intervention process before she has a bleed or a seizure.
But she refused the MRI, and says she is going to cancel the appointment.
Because she doesn't want to know if she has an AVM, because then she would have live the rest of her life being anxious about it.
I understand that it's her life, and I'm honestly fed up with her statement, so I told my mother that it's fine, and she can cancel it. But I find her statement and actions to be extremely selfish- because if nothing is there, then we can take a breath. If there is something there, then we know, unlike with me, that there are precautions that need to be taken, or surgery that needs to be done.
And because once something happens, it's not her who is going to be taking care of the aftermath- it's us. It's her family that is going to take care of her, like my mother did for me.
She has no idea everything my mother did for me, and how stressful it was for her, to have me going to college, and getting phone calls that I am on the ambulance on my way to this and this hospital because I had a seizure, worrying if I am going to fall into another pipe because I had issues walking properly (I actually did fall into a pipe which was uncovered, which left huge bruises for a few months), and in general, whether I was going to be okay for another week, without my AVMs bleeding, or ending up in the hospital.
And then after the surgery, she was the person that bathed me every day, trying to get all the blood out of my hair and off my head (took a week or so), feed me, get me out of bed in the morning (I couldn't initiate any movement for a while), make me walk around, and make sure I was okay for 5 weeks before I went back to school.
Meanwhile, my sister was at university, and I know she was probably stressed about it too, but she was never involved the way my mother was. And she didn't have to see me suffering through life every day, trying to regain this or that, stepping around in the unknowns.
So she had no idea what impact this malformation has on the family. And her thinking that she doesn't want to know until something actually happens? So we will have to deal with a bigger problem than we would if we dealt with it now (after effects of seizures or bleeds)? Seems extremely selfish to me.
I don't know if she thinks having seizures or bleeds are fine and dandy things to do even if they can be avoided... Or what it is... But I can assure her that it's better not to have them at all.
I didn't really know where to write this, so thanks for letting me get it all out here.