Vanities: function

Moving on to the next kind of vanity (part two of four)…

Vanity about function: My body doesn’t do what it used to do.  One year ago, I jogged three miles with my sister and probably went for a walk later on in the day, too.  Back then I was doing interval training most days as well as walking two miles and often jogging a mile or so.  I felt great.  But it’s been a tough year, this Year Two of stage IV cancer.  I am lucky to get a Year Two, I know, but it has been hard on me for sure.

I used to have good balance; now because of my numb left foot and my leg weakness, I am unsteady.  When I stand still, I wobble.  When I do qi gong, I lose my balance and have to grab for a chair or wall.  When I start to move, sometimes I kind of lurch on my left foot.  When I am walking, I feel better if I have three points of contact instead of just two.  That means I run my hand along railings or just touch a wall, or hold Eric’s hand or arm.  If my hands are full and I’m going upstairs, I run my elbow against the wall.  I don’t need to hold on, but I need to have something to lean against if I lurch or lose my balance.  And of course coming downstairs, I think about falling; I watch my step carefully and I hold on to the railing and I can’t have both hands full.

The numb foot also means I’m at risk of falling down: if that foot encounters something unexpected, like a tilt in the pavement or an apple in the dark on the farm road, it twists outward and doesn’t alert me soon enough for me to correct the imbalance.  And my legs are sometimes too weak to catch myself, too.  So I fall over to the left.  Only about once every week or two! Sustaining no damage–it’s an easy fall.

I noticed this in July in France: I used to be the person who got out of the way by stepping off the curb, nimbly, when I and an oncoming walker had to negotiate a narrow sidewalk.  Now I’m the person who sticks to the sidewalk and I make the other person give way, because I need to keep up my steady path on even footing.

Right now I can’t go for a real walk.  For a long time my legs have felt weak, like I just finished a 10-mile hike, but I could ignore that–they didn’t feel worse with exercise–until recently, when I think they really did get weaker due to inactivity during the pneumonia.  Right now a “short walk” means walking to the mailboxes and back.  A long walk is if I get out on the road, which I only have managed once in the last week or two.  My knee keeps me not walking, too, but I’ve been able to ignore that in the past.  So it feels like it’s the lungs and legs that are keeping me from walking, or, in my case, strolling.

It’s a bit of effort now to stand up, or lean over and straighten up again, and I use my arms to help get out of chairs.  Sometimes I think I shouldn’t do that, because it will just allow my legs to stay weak.  But sometimes I’m just too tired to challenge myself.  Every time I stand up I give myself a couple of seconds to get grounded and make sure I’m not dizzy.  Also I plot my progress through the hazards of living room furniture or the mess on Jesse’s floor, because I might trip or bang into something.

The star marks our house. Our cars are usually parked at right, by the road.
The star marks our house. Our cars are usually parked at right, by the road. (Click for bigger version of photo)

Since my hospital stay, we have been driving up the farm road to the house about half the time–the half when I feel more tired and will wear myself out walking from the parking area by the road.  This is so ironic because I have been the person most defensive of the no-cars-on-the-farm-road practice the community agreed to.  I was the one who was so happy when we agreed to put a sawhorse at the start of the farm road to cue people that they should park, not drive right up to the house (including driving on the lawn because what, no driveway?).  And now who’s moving that sawhorse to the side on a regular basis? Why, us.  It’s like a little ironic knife-twist in my side every time we do it.

It is hard to accept that right now I am so wobbly and weak and out of breath, and harder to contemplate that this might not be so temporary–that “recovery” in this context might restore some of my function but won’t bring me back to a year ago.

All of this means I now can’t hide in the world of the well.  Even in that world, I show up as a sick person, whether I want to or not.  And of course I don’t want to!  The other day, a week after I got home from the hospital, I walked into a local farm & produce store.  The walk from the car to inside the store was about 20 feet.  I went in the double doors and paused on the floor mat, to plan my next direction so as not to wander and waste my energy.  The woman behind the counter saw this and asked me if I was okay.  I said I was.  Then she offered to get me a chair to sit on.  I explained I’d had pneumonia and I was just taking it slow.  She went and got me a chair anyway, and showed it to me later when I passed by the counter.  So, you know, my cover was blown the moment I walked in and paused! I bet I looked pale and wobbly too.

Fatigue means I ask for people to do stuff for me a lot–as much as my ego can handle–like go upstairs for something, or get me something to drink, or carry my backpack for me on the way to the car.  Eric and I have a well-balanced dance of asking/not asking/assuming/not assuming that most often works really well–he doesn’t assume I need help with everything, and when he offers help he’s very matter-of-fact rather than anxious or over-solicitous.  Sometimes I ask him to start something (like a dish for dinner) but I want to finish it because I want to have done something, and that’s okay too.

But really, it’s shocking to me how different my capabilities are from a year ago.  How diminished.  Am I this person? I did not sign up for this.

5 thoughts on “Vanities: function

  1. Debra Hunter

    I like that aerial picture! Is it from a drone?

    You talk about diminished…and yes, I suppose that’s true physically. But it is wonderful to spend time with you, at least in part because you are SO not diminished in other ways. I love that you laugh, have such a creative mind, and that you are so very present. There’s a kind of distillation that I think cancer brings. And I love the distilled Ellen.

    I think one of the hardest things –for everyone– is to ask people to do things for you. For an independent strong soul, it’s so hard to admit that you need that help, and then extra-hard to ask others who have their own busy-ness. But that’s what community is ultimately about…giving and receiving from others. And you…more than almost anyone else I know…have done such a great job of building community.

    Lots of love to you. xoxoxox

    • ekeyh

      Thank you, Deb. (The picture is grabbed from Google Earth.)

  2. Debra Hunter

    and yes, I too am celebrating the ellipsis!

  3. Shelly

    Sometimes asking people to help you is a gift to THEM, because doing something for you allows them to feel just a teensy bit less helpless in the face of your illness. And you have many people who would duel that cancer for you if they could but have to settle for helping in smaller ways…

  4. Gina Qualliotine

    These posts touch me very much. I don’t have words for what I feel or think, or maybe I have too many. They would fill up a comments box to bursting. What a process you are in and what a process to witness you in. My main responses summed up could be – the howl and – the bow. I howl that you are going through it all, wishing it were not so. I bow at the way who you are meets each step and challenge and I bow to the core of you which is beyond what you or me can ever think it is.

    I hear a determination in what you write, to mine the losses and to share the gold and as Debra has said, to build community and connection even in how you live this process by sharing it. Out of the individualistic model we have inherited, which fosters fear and pride, (vanity, if you like) as a matter of course, you live into a new way which fosters connection. It is to me a core of what your incredible self has been up to all along. I benefit so much from it, from you, from the us – that you make matter.

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