These last days have been a roller coaster. Friday and Saturday, bluntly, I really thought we were down to a few hours left. Sunday morning, however, started amazingly strong. She even wanted to get up and take a shower. The shower, however, proved a little too much and following it, she crashed. Monday, Tuesday and yesterday have been tough but not quite as bad. Today, your guess is as good as mine.
Yesterday we went to the acupuncturist again. It was an ordeal. Maggie has a great deal of difficulty walking because her legs are very, very weak. The work that standing and walking requires winds her which creates strong anxiety which exacerbates the breathing issues. But, we managed to pull it off with various oxygen tanks, rest breaks and lots of patience and determination.
I asked her yesterday at the acupuncturist if she thought it was worth coming back again (she has another appointment today) and she was unambiguous with her resolve to continue. She says that, if nothing else, the appointment gets her out of the house and out of bed. And that she feels that she needs to be pushing herself more.
So, in the spirit of fighting, she told me last night that she’s going to make her multiple nightly visits to the restroom herself. Quick background: the last number of days, because she’s gotten so weak, I’ve had to assist her to and from. She’s pretty unstable. Well, last night she fell. It wasn’t bad but she’s got a nice cherry on her shoulder and a bruise four times the size. She’s ok but just a little shaken up and frustrated. Me, well, I was scared as hell and then mad. It was tough to get back to sleep after that. But, throughout the night, she made at least two trips by herself without incident. I think the fall just reset her need to be more careful and not push her boundaries too much, too fast.
She’s really struggling with the lack of air now. Sitting up is a struggle and she’ll come up with all types of ways to avoid getting out of bed. Who can blame her?
Yesterday we got a TV put into the bedroom so Maggie could catch up on her shows. Flo and Sami have let us borrow theirs indefinitely (I went to rent one and it was going to cost $275 per month!) Last night, after everyone left we watched one of our shows, held hands and just sat. She said multiple times that it was nice to watch TV again because it felt like it had been forever. She was really happy and, gosh, it made my stomach warm seeing her smile. We even had a little back-and-forth about the characters, their situation, and what we’d do – a standard practice for us. It was nice. Really, really nice.
Watching all this transpire is just enormously difficult. Seeing Maggie waste away is incredibly painful. Watching her fight is crushing my heart. The overwhelming feeling of helplessness is like pouring vinegar straight into my heart’s open wounds. I’ve seen things a man in love should never see. I fear for what’s coming.
I hate to write posts like these for fear that someone who might just be starting on this journey might read them. I’m torn and my heart hurts for those come after us. I wish I had some words that might help. Right now, I got nothing. I’m too overcome with helping her while keeping my own head screwed on straight.