I’m in a mood

I’ve been in a mood the last few days. It’s been hard to not be in a choir and singing. It’s what I know, how I worship, how I’m in community, and I miss it so much, especially during Holy Week. The Episcopal Church is in the liturgical tradition and we have services all week. I’m used to singing all of them, from the celebration and drama of Palm Sunday to foot washing and celebrating the Eucharist on Maundy Thursday, ending with the stripping of the altar. Then the quiet agony of Good Friday, often ending with a requiem in the evening after services from 12-3. Saturday’s Great Vigil was always my favorite Easter service, recounting in chant and ritual the history of the Jewish people up to the death of Christ, then bursting out with bells and lights and alleluias of Easter. Easter Sunday is a work day for choir people, often with 2-3 services to sing, and the Vigil gave us a chance to be in the moment and worship ourselves.

This year, though I have a church and followed online services, I’ve not been physically present – and not singing. Most of my neighbors are Baptists who of course celebrate Easter, but do so very differently than the tradition I’m used to. The day is the same, the resurrection is the same, but the way we do it is different, and the music is very different. I miss my friends from choirs past and found myself watching YouTube videos of choirs singing favorites such as Beethoven’s “Hallelujah!” from Christ on the Mount of Olives, Matthias’ “Let the People Praise Thee, O Lord“, which I learned in Virginia, and “We Shall Behold Him” which is newer to me but oh so powerful. And then there are the hymns. It’s not Easter without the eleventy million verses of “Hail Thee, Festival Day” which I think only Episcopalians sing.

On top of that, it’s been a week with lots of people in it, making me realize how much I’m more isolated now than ever before. Having people come over is great and wonderful but really tired me out. But if I don’t ask for help, ask for visitors, I don’t have them. I guess I still expect that other people will reach out to me but they really don’t. It’s out of sight, out of mind – and I can’t complain about it because I recognize that I often behaved that way myself. If someone I knew moved, there was a hole but it quickly filled up with people who were still there and life activities that kept going. I wasn’t good at keeping up with them when they were gone, so why would I think people would keep up with me after I moved? The difference this time for me is that I only moved 12 miles away instead of 1600 miles. I guess I thought it was close enough to stay in touch but it really hasn’t been. But phones work both ways and if I want to talk to/hear from people, I have the responsibility of reaching out myself. Being in a wheelchair doesn’t abrogate that.

So it’s a conflict. I’ve been alone for so much of the last eight months. Sometimes I’ve been achingly lonely, missing people like my right arm and needing their help. Most of the time I’m fine, just adjusting to being alone – tho months and months of Covid isolation actually prepared me for that. I’m figuring out how to do more for myself, partly to prove that I can and partly because there’s no one else to do things. Today I figured out how to reorganize near my bed so I can put my decorative shams back on the bed and have a place to put them when I sleep. I know, that sounds small, but it really isn’t. My bed looks more finished and I’m therefore happier.

Also making me happier is FINALLY having my porch screened in. The cats have hardly been inside since Wednesday, preferring to hang out on their chair cushions supervising the lawn and watching birds and squirrels. I haven’t figured out how to get out on the porch without using the walker and I’m not supposed to be doing that by myself. The chair won’t go through the door so it has to be the walker. I need to ask therapy this week about that.

Physically I’m in discomfort from problems with my shoulders, mostly on the right but some on the left as well. You can’t roll yourself in the chair without reaching backwards in a motion I don’t use for anything else, but the muscles are also essential every time I try to stand up or walk with the walker. This pain is muscular, not nerve (for a change) in the front of the upper arm/pec/inside the armpit. How on earth do you put anything on THAT to help? It hurts and it’s annoying.

Milestone after 7 Months

My spine surgery was 7 months ago today. And yesterday, for the first time in all those months, I put my AFO’s on by myself. It took about 25 minutes and a moderate amount of swearing. I was able to do it again this morning, though it took longer and was more frustrating. However, being able to do this MYSELF has eluded me from the beginning, and it’s a huge milestone.

Occupational Therapy has been here a few times to work with me on it and we decided that the only way I can put these things on is to shove the AFO’s into the shoes before I try to put the foot into the AFO. I have to use the compression socks to pick up the leg and manouver the foot into position, since the right foot in particular is not cooperative. I can’t bend the ankle or raise my toes as the foot goes into the shoe. When we were trying out options on Thursday, I managed to break a rivet, making it impossible to strap the AFO into place. Oops. The orthotist had me come in that afternoon to repair it; they also removed the velcro strap around the ankles at my request and as suggested by Physical Therapy. I think that made a difference.

But being able to do this MYSELF is huge because it means there’s a possibility of walking in my apartment by myself. I’ve been limited to walking when someone can be here with me to put on the shoes and to follow me around with a wheelchair in case I need to rest. Well, if I can put the AFO’s on myself, I can get a neighbor to help me on days when my aide isn’t available, which will give me more walking days. More walking = more confidence & strength = ability to walk shorter distances on my own.

It’s been a long 7 months. I don’t think the right foot is better than it was when I had surgery, though I think the toes can move a little bit. But the ankle is still frozen and lacks normal sensations. And the bottom of the foot feels spongy and the whole foot drops all the time. I can’t walk without the AFO’s to support the foot and keep it from dropping. Period. The left foot feels more like a foot but it also has flexion and sensation problems. The surgeon said to give it 12 months; PT says to give it 12-18 months, so I shouldn’t be discouraged at 7 months to have this lack of function. But it’s still sobering.

Don’t worry, I’ll keep working on what I can do, but it’s hard. So seeing something happen for the first time after seven months is very motivating. Maybe one day I’ll learn to like the AFO’s, maybe when I can put them on more easily without swearing so much. But even if I don’t ever like them, I already like what it means to me when I have them on – especially when I can do it myself. Go me!

Making itty bitty changes

I’ve been home a month now, and have figured out ways to do some things I didn’t know I could do. Take laundry, for example. It’s quite entertaining watching me move the dirty clothes from my bedroom, across the living room, into the other bedroom, and then into the bathroom where the stackable washer and dryer live. And of course, moving them back again when they’re clean. Standing up to move the clothes from washer to dryer and out again is a bit wobbly but that will be remedied this week when maintenance installs another grab bar next to the laundry closet. But even with that limit, I’m really happy that I can do my own laundry in my own place. It’s a step towards greater independence.

My aide is still coming to give me showers and wash my hair and I love that, really love that. But she’s away this week so I’m coming up with other options. I washed my hair in the kitchen sink today, standing on slightly wobbly legs and needing practice using the sprayer – but it’s clean and I did it. I think I know how I would give myself a shower but I’m not really ready to do that and definitely have promised NOT to try it without her there. Part of me doesn’t want to give up having her help but realistically, I may not need it for as long as I originally thought. Which is also a good thing and will save money, too.

I can also put my own shoes on! Well, not with the AFO braces in them, but still, having shoes is better than wearing fuzzy blue gripper socks all day. I have more stability and confidence when I stand and manouver around counters warily doing simple every day things. I’m not doing much walking right now because I’m not sure how stable the left foot is without the stupid AFO that keeps falling down; I’m not wearing it for that reason and the therapists know and understand. I see the surgeon on Wednesday of this week (delayed from last week) and we’ll have a chat. I suspect he will tell me to have therapy decide what I need, and therapy will tell me it’s the doctor. So I’m hoping to get a referral to an orthopod foot person who can direct that part of things. I definitely have significant foot drop in the right foot and know that one needs an AFO, but maybe the left doesn’t anymore.

One of my friends helped me with banking this week, which is another step. I haven’t been to a bank since before my move in August and although I’m not spending pots of cash, I do need some. Instead of doing “cash back” at the grocery store or using an ATM, my friend brought me cash from her bank and I wrote her a check for the same amount. Not ideal, but generous of her and it made things easier for me. At some point, I’ll be able to go out with people, but probably not until I can use the walker, which is a lot easier to fold up and transport than a wheelchair.

This is still a year of waiting. It’s been three months since surgery and I have another nine to go to wait out the healing process, at least that’s what the surgeon warned me. I need to give my body time and not get impatient. The e-stim we’re doing in therapy is really waking up the nerves in the right foot and leg, sometimes painfully, but any return of sensation is a good thing. Those really big steps of the first weeks of rehab were dramatic and scary and wonderful, but they aren’t the only kinds of progress. These teeny changes add up as well.

Image credit: Photo 47326021 © Nilanjan Bhattacharya | Dreamstime.com