Raised Chair, Lowered Expectations

Revised February 6, 2025

Now that I have progressed to what I hope will be my worst physical condition, I find I need to adjust the ways that I see and deal with life. I have been using my power wheelchair since the end of 2018. This is a good rule of thumb: the worse your disability, the better the chair you qualify for. I have a kick-ass chair, so I know no matter how well I want to think I'm doing, I am very disabled.

I have a slick chair that does everything for me. That means I can't do any of the things the chair does. If you are disabled with a regular wheelchair, I know you may be tired of having to work to move and do every little thing, but trust me when I say, not being able to do anything is worse. At first, it may be nice to rest but having the choice to rest is better than having it be your only option. If you can do something, do it! Use it or lose it is not just a catchy phrase. It's a rule to live by. You may lose it eventually anyway, but wouldn't it be nice to have an extra six months or a year with that limb? Yes! Yes it would.

The seat on the power chair sits much higher than a manual chair as there is a lot of machinery needed to move it. My mother is continually asking me if the chair can lower and I have to grit my teeth and answer for the thousandth time, ‘No, this is as low as it gets.’ So I get to have the distinction of sitting higher than everyone else at the table and standing lower than everyone. Yippee.

The other thing that has happened is I have had to lower my expectations for how I appear. I can't brush my hair myself anymore or put on makeup or even wear earrings. Those are all the small niceties that do not happen when your CNA has six to eleven other people to take care of. I have gotten used to the way I look with my greatly receding hairline. People are glad I am still alive, I guess, to notice that.

I am also a brutally honest person and that extends to myself as well. I don't let me BS anybody about anything. It's only in your mind that what you’re being honest about is difficult to say. It may be hard for you to admit, but it looks brave to anyone else. If I get points for showing pictures of me not at my finest, it's just me and my WTF attitude. I can't give a crap anymore.

And many people will say, ‘But Ellen, you look great!’ Thank you, I say, but I am musing to myself, ‘I'm glad you think so because I think I look horrendous.’ My yardstick is how I looked when I was still living at home on Maui, before I moved into the care facilities. Before, I had to stop taking the supplements that kept me as healthy as possible.

I began taking supplements after my brain surgery in 1996. I went to a nutritionist/naturopath my friend recommended and I really liked the way she worked. I ended up taking them on and off, but mostly on, until 2021, when I entered the care facility on Maui. When I settled in Honolulu, I started taking them again but only half as much because my family thought they were too expensive and didn't show any positive results. Or none that they expected to see.

My naturopath uses techniques that she learned from people based on quantum mechanics. I just found a lecture series on YouTube of an MIT professor explaining quantum mechanics to college students. I was able to get through the first lecture okay and it turns out that the world of very, very small things, that are the building blocks of everything, do not act in predictable ways. Fundamentally, Shakespeare was right when he said, ’there are more things in the world than are dreamt of in your philosophy.’

I absolutely love living in a world of possibility and that is what quantum theory does—makes things that seem impossible possible. Or at least leaves open the possibility of the impossible. I have let go of expecting things to go a certain way. When it comes to my family, the people I know best, that is not at all true, but in terms of money, I do not worry about that.

How I wish I could transfer that certainty to other people! I could relieve them of the anxiety around money I would like to use to help me move and use my body to its fullest potential. They would know that I would adjust my spending as my bank account dwindled. My goal is to leave this world with a bank account as close to zero as possible.

Not knowing when that exit will happen and what will happen between now and then creates the uncertainty that makes people want to save as much as possible. ’Expect the best, but prepare for the worst’ is the wrong mindset in my book. Instead of denying that the worst could happen, live so engulfed in the best that nothing else has room to take root. When I can let go of all of my expectations, good or bad, I can look in the mirror and enjoy what I see, no matter how much hair I have.