New Kid on the Block

Tuesday, April 6

12:15 pm

My move to Sheltering Arms was scheduled for 3:00 yesterday and then delayed to 4:30, and then 6:00, then 7:30, then 9:00. Around 10:30 my transport finally showed up.

Ready for the next step (so to speak)!

They loaded me onto a gurney, wheeled me down to an ambulance, and drove me to Sheltering Arms. The EMT in the ambulance with me, Josiah, was great. We chatted quite a bit—can’t remember what it was about, but it made the hour-long ride pass more quickly.

So that she wouldn’t have to drive back to Charlottesville too late, Linda had given up waiting at UVA and driven to Sheltering Arms a few hours before I arrived. She received a brief tour of the facility and my room, and she unpacked my things for me before heading home. When I finally got there, they brought me into my room quickly, transferred me to the bed, took my vitals, and tested my function. It was a little after one in the morning when I was finally able to settle down and go to sleep. I slept well, until 5:00 when they had to come in and catheterize me. I think I slept a little after that, but things started getting busier after 6:30. There were lots of techs coming in, giving me medicines, catheterizing me, and drawing blood, and two doctors came in and tested me. The main doctor is Dr. Miller. He’s exactly what you would imagine as a typical older doctor—very clinical. His assistant, Dr. Nolan, is a young guy and very nice.

The tech who fed me breakfast was great and chatted with me throughout the meal. The eggs he served me were really good, as were the biscuits with gravy, but the oatmeal tasted like paste and there were strawberries (blegh!). He also made my tea (which Linda had packed for me, along with a bottle of honey), which made me happy. After breakfast, they dressed me in sweatpants and a T-shirt. It feels good to wear real clothes again.

Right now I’m having frequent spasms in my thighs, and my muscles have remained too tense to relax, so they are sore. They said they’d increase my baclofen (muscle relaxer), but the side effects of it are making me sleepy.

I had physical therapy this morning, and I will have my first occupational therapy session this afternoon. Even though my oldest sister was an occupational therapist, before this week, I did not fully understand the distinction between OT and PT. PT focuses on the foundation: rebuilding the muscle movement and working more on general body movement. So with PT I practice standing, walking, and pedaling with my feet, for example. OT focuses more on regaining the ability to perform daily tasks, so it often is more concerned with my arms and hands and regaining the fine motor skills required to do things such as brush my teeth.

My physical therapy was from 10 until 11:30 today. Just like at UVA, I have to wear a neck brace during therapy, which helps the damaged muscles in my neck to relax but causes discomfort at the top of my spine. My PT, Brian, first came to my room and did some testing: with help, I sat up, stood up, turned, and sat in a wheelchair. He then took me down to the CORE gym (their huge, main gym) and stopped my wheelchair on a track that was painted on the floor. He directed me to walk forty feet, turn around, and walk back to the wheelchair, with the assistance of Brian, a tech named Zane, and a gait belt. The gait belt is a piece of thick webbing with handles that goes around my midsection and allows PT to support me and help me balance. I managed to walk 37 feet before it was time to sit down again.

They then wheeled me to a device that had three steps on either side of a raised platform. They stood me up again, and I went up two stairs with much difficulty. But, as the therapist and Zane told me, whatever you climb up, you have to climb down—so I had to go down the stairs as well. (Christine notes that this is the same annoying phrase I used to yell to her when she would climb too high in a tree and was afraid to climb back down.) I made it down the stairs, with support of course. Then they wheeled me over to a fake car, where they opened the door, helped me stand and sit into the passenger’s seat without banging my head, and helped me get my legs into position.

It is difficult to convey how hard all this is. I simply can’t do anything without someone pushing me up or holding me in place; I don’t have the strength or the balance (yet!). Part of it is that the things my body used to do instinctively now only happen if I look at the part of my body I want to move and think consciously about the movement, which in turn causes me to weaken in the areas I’m not focusing on. As my afternoon therapist said, when you’re riding a bike, your feet pedal up and down instinctually—but now I have to look at one foot to make it go up and down, which leaves the other foot neglected. It’s really hard to synchronize.

We next went to a wheelchair specialist. It was like going to a used car shop: they had all kinds of different wheelchairs and none was the same. The wheelchair people agreed that it was like that, except the wheelchairs are more expensive. They initially thought they would give me an electric chair with a joystick, but they ended up settling on a light chair that I could propel with my feet. I was wheeled to my room and was left sitting in my chair for about half an hour, before I decided I needed to crawl back into bed…only I can’t crawl. So I called for assistance, stood out of the chair and pivoted with help, sat back down with help, and flopped over onto my back, where I was rearranged.

My new wheels

After PT this morning, Zane told me that based on his assessment today he thought I would be here for three to four weeks. I was expecting that at this point, although spending a month here is not something I would choose to do. That said, the facility is really nice; everything is new and as top-notch as you would expect, and the staff are quite capable. I do miss my wonderful nurses at UVA, though.

5:00 pm

Lunch was a very good chicken salad sandwich on a croissant and tomato soup with beer—I mean, with iced tea. There was also a plate I guess was supposed to contain a salad, with one large piece of lettuce, six pieces of honeydew, one piece of cantaloupe, and one grape. I ate the grape.

I had my first session with occupational therapy from 1:30 to 3. My therapist, Lori, tested my range of motion and strength in my upper arms. It felt so good to have her stretch them a bit. She made me do various movements with my arms and hands and to attempt tasks such as hooking one side of my mask onto my ear (that was a dismal failure). She reminded me that my current difficulty does not mean I won’t be able to do this eventually.

Lori got me into my wheelchair and took me to an auxiliary gym next, where we again worked on fine motor skills. On a table in front of me, she placed a wooden box that opened like a book to create essentially two open, equal square boxes connected on one side by a hinge, each side roughly six by six inches and four inches high. In the center, between the two open halves, was placed a thin piece of wood about eight inches high (more than twice the height of the open box), which served as a high barrier between the left and right halves of the box. The left side was full of one-inch cubes, like blocks a baby would play with, and the right side was empty.

The task was to reach into the box, grab a cube, and lift it up over the center barrier, while Lori timed me. I was able to get my left arm up and over the edge of the box into the left side. I identified a cube that seemed to be slightly separate from the others, in a position from which I could grab it, and I bumped it around trying to get my thumb and middle finger around it (my forefinger is not yet up to the task). After watching me struggle for what felt like a couple of minutes, Lori helped move the block to a place where I could get it, but then I was not able to pinch it hard enough to lift it up. With her assistance, I eventually pinched and moved three blocks over the barrier and into the right half of the box. The right hand came next; I could actually pick up the blocks a little better with that hand, but I could not (yet) raise my right arm up over the barrier.

Next, Lori brought out another little toy, which had pegs and holes—think of the little peg game you can play at Cracker Barrel but with fatter pegs. The object was to pick up one of the pegs from a shallow dish they lay in and put the peg in one of the holes. First of all, I couldn’t pick up the pegs. When I finally did get one wedged between my fingers, I couldn’t get it in the right orientation to get it in the hole. So this is a game that I will measure progress with.

10:20 pm

After OT, I had a visit from Linda, who arrived around 4:30, having driven all the way back from Charlottesville. She brought pictures of our family that the girls had picked out and had printed for me, and she hung them with clothespins on a couple strings across the bathroom door where I can see them easily. They are wonderful to look at. I can’t believe how much all of my girls are doing for me. I also got beautiful flowers from David and Jen and from Nancy and Bob. Linda fed me a dinner of meatloaf and mashed potatoes, and of course she gave me chocolate chip cookies that she had brought. Although I worry about all the time she has been missing from work, I am very grateful for all the time she has spent with me and all she is doing to make sure I receive the best care possible.

Tonight I’m suffering horrible muscle spasms in my legs again. Right now they’re in the top of my thighs, and each spasm pulls my knees up to my chest. They have been the hardest part of today. I have suffered them throughout the past week, but they are more localized now. I think they are exacerbated by all the activity today. I would be much less uncomfortable if only I could get the spasms to stop.

So how do I feel after today? Somber. Discouraged. I know I will make progress, but my expectation for where I could end up may have been a little higher than what’s possible. I’m starting to believe Linda that even after I come home it’s going to be a while before I can be by myself, which doesn’t sit well with me. The nice thing, I suppose, is I’ll get lots of visits from friends and family. The way my family has stepped up already has been awesome—both my family and Linda’s family.

I am starting to understand why some people give up. Not that I will, but I really understand why some people just do the minimum and maybe pray that the body will heal itself. This is hard, and I’ve got a lot of days of this ahead of me.