It’s Been Quite a Year

I never dreamed of a year like this one when I was planning for retirement. I left Yale Law Library in October 2015 and within a week, left for Texas. Not long after I got here, I found myself redesigning the community church website and then working there for five years. Last August I left that job when I realized I needed all my time to concentrate on learning to walk and live independently. I was right that it would be a full time job, but it’s certainly not what I expected to be doing when I wasn’t getting a paycheck.

I had spine surgery a year ago today that arrested the severe spinal stenosis, but it didn’t reverse the damage that had been done. I was very scared of what the future would look like when I was in rehab and not able to even stand up or go to the bathroom without two people helping me. I didn’t think I would be able to go back to my brand new apartment or take care of my beautiful floofy kitties that I loved so much. I didn’t see any light in the tunnel at all much less a way to get out of the tunnel to something beyond that.

I learned that I need to do what I can for myself but also recognize when I need help and ask for it – and then accept the help that is offered. I’m stubborn and independent and am used to living on my own, without anyone to depend on to help with things around the house. I’m still alone but there are people right out my door who will come if I ask, who will notice if I don’t show up for things. There are sweet friends who took care of my kitties when I was gone for so very long. That I can hire people to help me with personal care but also therapists who can teach me how to do some of those things for myself. The day I was able to do a shower on my own was a great day indeed even if it took me an hour.

And I learned that I wasn’t limited to hoping I could stand up. I can walk again, thanks to my wonderful physical therapists Veronica and Grace. Oh, I’m still using a regular walker with its cheetah print tennis balls but have a bright red rollator ready when I have the balance and strength to work on using it. It should be an enormous help since I’ll have a place to carry things from place to place (which is hard to do in a wheelchair) as well as sit when I need a rest. I can walk about 3/4 of my hallway and back again without stopping, and am working up to doing the entire hallway soon.

But the reality is that I probably will not be able to ditch the wheelchair or walker. There is a lot of nerve damage from the stenosis that won’t reverse. I’m not as worried about it as other people seem to be, probably because I’ve been in the chair for a year now and know what I can do. Caring for the cats – food, water, litter, cleaning up vomit – is best done while seated, and while I might be able to do that with a rollator, I know I can do it from the chair. I love them dearly and need to be sure they’re not shortchanged by my limits.

I’m so grateful for my friends here at Meadow Lake and for its accessibility and spaciousness. I couldn’t have dreamed up a better place to be with my physical limits. And I’m especially thankful for the friends I visit with online and by phone if not in person, who keep me connected, interested, and engaged. You are my tribe and I love you.

One Year Ago Today I Moved

A year ago today I moved from my family home in Emerald Bay to an apartment at Meadow Lake. I hate moving and don’t do it very often if I can help it – all that sorting, packing, hauling, finding, unpacking, arranging, and rearranging of everything. But this move was necessary and timely, and I’m grateful beyond words that I paid attention when God kept opening a lot of doors one right after another last summer. Everything I needed was here, especially the cats. Emma did not want to get picked up and moved from the back of the corner kitchen cabinet, but we all made it safe and sound.

This has been a good place for me at the right time in my life. My home is spacious and comfortable – the largest apartment I’ve ever lived in – with a screened in porch for the cats and for me when I can manage it with the walker. I look out at grass, trees, a garden, and have blooming crepe myrtles outside my windows which make me happy.

I didn’t know when I moved here that I would be in a wheelchair within a matter of days, but this is exactly where I need to be. I have the tools I need to live independently – housekeeping, maintenance, lots of grab bars, wide doorways, roll in shower, and a medical alert system. Because I can no longer drive, I’m grateful that weekday transportation is available to doctors and grocery stores. We also get amazing meals once a day so I don’t have to cook much, though I have a full kitchen.

I’ve made friends here with residents and staff. Almost all the residents are much older than I am, but there are a few closer to me in age – and really, I don’t care. I’ve never been with a more friendly and welcoming group of people. In many ways it’s like living in a dorm and not apartments, because we all look out for each other. The hard part is the high turnover as neighbors die, move closer to children, or go to assisted living. There are nine apartments on my hall and six turned over in the last year, including mine.

Moving was hard but I’m glad I made this one.

Out on my own

I finished formal out patient PT on June 3rd. I’m sure I’ll be back, especially when it’s time to transfer over to a rollator, which isn’t as easy to use as you’d think after hanging on to using a folding walker for almost a year. But after 10 months of therapy, it’s oh so nice to not have to be somewhere at a set time three days a week to do things that I can mostly do on my own.

I use the NuStep 4-5 times a week for 30 minutes and am up to level 5 on resistance. It still takes a while to get on the machine but I can get off in under 3 minutes. I’m also using my weight bars to do arm exercises every day. I’m using a 2-lb bar which doesn’t seem like much until I do 3 sets of 20 of whatever it is and everything burns. I need to be doing standing leg exercises at the kitchen sink, which I will do when I finish this post.

Walking is a bit of a challenge. The person I hired to walk with me isn’t working out that well because of schedules, since she already works for a bunch of other people. I’m spending half a day walking around in the apartment using the walker, trying not to run into cats who are fascinated by Mommy standing up. I don’t want to not be walking in the hall but don’t really have anyone to do it with me, trailing behind with a wheelchair.

Frankly, I know I’m not going to fall. I know what that feels like and all I’ve felt when doing hall walking has been the need to sit down if I walk too far. So I’m thinking about going out in the hall by myself and walking up one apartment, turning around, and going back again. And then doing that several times during the day. If I’m tired, I can stand and rest, but these are short well marked distances and I do not think it’s going to be a problem. I might be stupid here, but I don’t think so. I know what I can do and what my limits are. And if I can go when I’m ready, I don’t need to plan it around someone else’s schedule.

I’m not really expecting to get much better. I could be wrong. But my research tells me that surgery doesn’t reverse severe spinal stenosis; the damage is already done. At least the surgery will stop me from getting worse. And if what I have now is what I’m going to have, well, I can deal with it. Whenever I’ve been challenged and had to add new daily living functions, I’ve been able to rise to the challenge and get it done. Things like laundry, bed changing, and showers. Yayyy for showers! I’m sure there are other things out there to add, or maybe it’s just getting more comfortable and confident with the things I can already do.

My home-health therapist told me at the end of March that I should be prepared to find myself in exactly the same functional place in 6 months as I was then. Nerves grow when and how they want; people don’t really know what to expect from them. I don’t think I’ve gained much since then except getting back to walking after a rough back pain patch. My out-patient therapist told me that my body remembered how to walk (which is an improvement, because 10 months ago it didn’t know anything) so it will be easier for me to get back to movement.

No matter what, I stand up a lot. I’m in the kitchen doing dishes, cooking, fixing meals, getting food for the cats. I’m in the bathroom brushing my teeth, and standing in the bedroom to make my bed and get dressed. I do three-point turns from the wheelchair to the lift chair or the NuStep. I stand up to do laundry. All of these weight-bearing activities help keep the muscles strong and stop them from atrophying. I will NOT stop doing them, whether I’m walking in the hall or not. They have become normal, which is itself amazing. I don’t take them for granted, not after this past year.

Not All is Merry and Bright

In spite of the almost non-stop showings of Hallmark Christmas movies at our house, not all is merry and bright. I did something to a muscle (or tendon or ligament or something) in my left thigh that pulls on the knee and zings right into the groin when I raise my knee (say, to walk or anything). And getting the leg up into bed with the leg lifter is excruciating. It’s hard to get comfortable IN bed, too, especially with Ellie plastered against my other leg. She rarely sleeps with me and I don’t want to push her away – but trying to find any position that doesn’t hurt is a challenge. My therapist has been using the diathermy machine on me – but I only have a few more sessions left. It will just take time, but meanwhile, it hurts.

This is my first Christmas away from my home in Emerald Bay. I was back last week for the Women’s Club Christmas luncheon to hear my friend Curtis offer a Soul-ebration of the season and had the chance to see lots of people for about 2 minutes each. But I’m very aware that I’m no longer part of that community and it felt weird to be back with so many people and activities that I knew nothing about. Lots of changes in just four months but it feels like so much longer since my life was normal.

I want to go hear Messiah and sing the Christmas Cantata, and to go Christmas shopping, even if just to look. But I can’t do that. Transportation is tricky and not available evenings and weekends. I’m learning to live a smaller life and it’s a hard adjustment. I’m trying to remember that I’m giving this one year to just be what it is and see how much healing happens. But waiting is hard and it’s lonely. Oh, there are things to do here in my new community but it’s still a big adjustment and I have to work around therapy and my aide’s schedule.

Three of my new friends here are moving to be closer to their children. It’s logical, it’s sensible, and it’s another loss for me. I need to get used to it – there’s a lot of turnover with moves to new places, moves to assisted living, and deaths. It’s part of living in a community of older people – and have I mentioned that I’m the youngest resident here?

So I’m feeling a bit depressed and sad, and eating more than I should, which makes me depressed and sad. I have the lovely kitties to keep me company, books to read, Hallmark movies to watch, but still. I want to bake cookies but don’t trust my ability to stand and maneuver around the hot oven, so that’s out. I want to rearrange the closet but can’t stand up and do it. And I want to weed out stuff to take to the thrift store, but can’t do that either. I can’t even set up a puzzle at the table because my legs are too swollen and I need to keep them raised up. Arrrrgh. Whine. Sorry.

Image credit: Photo 66773269 © Androlia | Dreamstime.com

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