Entering a New Phase in Soraya’s Health

I’ve been able to spend more time with Soraya as I’ve been home recovering. Within the first couple of weeks, Soraya shared that her health was getting worse. I resisted this idea – I felt that maybe since I was home she was just sharing her fears more vs it being a true decline? I convinced myself that Soraya was at a plateau in her health...

Then I listened as she shared the loneliness of her days. She shared her desire and need for someone to just sit with her. How it now torments her to see old pictures of herself as that was when her body was able to do more. That she constantly thinks about her death and all that she still wants to do with her time.

We made a list of things that would bring her more joy in her days: self-care (makeup, lotion, perfume), spending as much time with her friends Courtney and Josh, and creating new memories while conserving her energy.

She articulated how she has always been tired but gave me specific examples of how her fatigue has gotten worse. She asked to do only ONE activity per day. She can either go to a doctor’s appointment OR have a wet hair day - it’s too much to do both. If she goes shopping, she can only do that and only go to one store. She requested a wheelchair for her to use on the main level of our house and said it was now too hard to walk between bedrooms upstairs.

Soraya also announced she was done going to virtual school as it was getting too hard for her to even hold her head up to follow along. She would still like to have twice monthly virtual meetings, but she can’t keep up with even listening to school. 

This news hit me hard - she’s changing and I can’t escape anywhere else to look away. What is even worse is that she has full insight into these changes and is so, so worried about her health, her life, her relationships, her... everything.

So while I am in my recovery era, it seems we are in another phase of change for Soraya. While we are looking for new modifications, new ways to support her, new ways to find joy- we are also suffocating in sadness. There’s no escape but to just feel it. And believe me, that we do 💔