Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Small Victory

· · 2 Comments

The other day I received a gift of an Audubon wall calendar, beautiful photos of birds, one for each day of the month. It’s big and long, and I found just the right spot in my office. But then I hesitated. Could I hang it myself?

This seems a trivial question. Of course, I could ask Al to do it for me. I haven’t wielded a hammer for months, maybe a year, even. Not that I don’t know how. It’s just that my hands were too damaged for so long, that the idea wouldn’t have even crossed my mind. But now that my hands have healed from all the surgery, could I still manipulate a hammer and a nail without hurting myself?

Years ago, when my father moved from our family home into independent living and, later, assisted living, I rehung his art collection. If memory serves correctly, there were 76 paintings, photos, etchings, block prints, drawings and more, all part of what  had once been my grandfather’s art. There were many beautiful pieces, and I wanted Dad to be surrounded by it all, so that he could still feel at home in his new, downsized setting.

It was a big undertaking, but I followed the method he had once taught me:

  1. Hold up the artwork to determine where to place it on the wall and make a light pencil line above the middle top edge of the frame.
  2. Turn over the piece and pull the hanging wire toward the top of the frame; measure the distance between the high point of the wire and the frame’s top edge.
  3. Then, on the wall, measure that same distance down from the pencil line. X marks the spot where the bottom of the picture hook goes.

Sounds complicated, but it’s very straightforward in practice and works like a charm. When I finished, his apartment looked like he was living in an art gallery.

The first time I set Dad up, for independent living in 2000, my fingers were still nimble enough to manipulate the nail and tack hammer without too much difficulty. By the second time I moved him, to assisted living a few years later, I had to make some adaptations for my hands. In order to hold the nail and picture hook in place, I had to place a piece of tape around them, tap gently with the hammer, then when the nail was partway in, I could remove the tape and finish the job.

Fast forward to Sunday afternoon, when I was contemplating the much simpler task of tapping one tack nail into the wall for my new calendar. My left index finger is now fused. So I couldn’t in any way risk banging it with a hammer. Fortunately, it fused into a position that enables me to still touch the tip of my thumb. Holding a nail was still possible, but I knew I needed to be very careful.

Unfortunately, our tack hammer disappeared somewhere over the past few years. All we have are two regular hammers, quite heavy in my right hand. When I picked one up, I wondered if I was making a mistake. But I had to try.

So, I marked the point where I needed to put the nail in the wall with pencil (just a dot through the top hole of the calendar). I had to manipulate the nail a few times to be sure that (a) I had a firm grasp and (b) enough of the head was above my fingertips so I wouldn’t hit myself. I choked up on the hammer’s handle so I wouldn’t have so much weight to swing. It took a few taps and moving the nail a couple of times, but . . . it worked!

The calendar now graces the side of one window in my office. It’s pretty and cheerful. Most of all, it’s a reminder that my hands are still capable of more than I think, more often than not.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Nuts and Bolts

· · Leave a Comment

Picking up small objects—especially when they’ve dropped on the floor—has been a challenge for decades. Keys and coins are particularly difficult. Because my finger tips have resorbed and I don’t have much in the way of nails, it’s really tricky to grasp narrow edges and flip the object into my palm. This has prompted some creative problem solving over the years, such as using a piece of scrap paper to slip under the offending item, or pressing on its edge with my toe to leverage the other side.

It’s become all the more challenging since my hand surgery. I’m now missing several finger tips altogether, which makes it that much harder to grasp little stuff.

Or so I thought, until I underwent a fascinating OT assessment last Thursday. I had scheduled this appointment to help determine how much sensitivity is left in my hands. I met with one of my hand surgeon’s occupational therapists, accompanied by two students, who politely asked if I minded their participation in the assessment. I’m always glad to teach, and I certainly provide a rare case study, so I welcomed their involvement.

And here’s what I had to do: I sat across from one of the students, who served as time keeper and recorder. She emptied a box of small objects on the table—a wing nut, a large and small hexagonal nut, a small square nut, a washer, a key, three coins (penny, nickel and dime), two sizes of safety pins, and a large and small paperclip. My task, using first my right hand alone and then my left, was to pick up each object and place it in the box. If I couldn’t do it, I would slide the object off the table into my other hand, but this reduced my score. The test was timed.

This was tricky. I completed both tests in under two minutes, but I couldn’t pick up everything with my left hand. Still, all were impressed by my dexterity. I was surprised, too.

The next step was to repeat the test on each hand—with my eyes closed. To my amazement, I actually did better on this round with my left hand, picking up every object, and doing it faster than when I had my eyes open! Clearly, the fact that I know I’m right handed and assumed that I couldn’t do as much with my left hand affected my approach to the puzzle when I was able to see. Very interesting proof of how expectations can affect what we think we can accomplish.

The final test involved closing my eyes and having the student place each object in my palm (right hand first, then left). I had to identify the object and place it in the box. By now I knew what each item felt like, but manipulating without being able to grasp it involved some juggling, and sensing contours was not so easy without my fingertips, which I can’t bend enough to form anything close to a fist. Nonetheless, I got all the answers right with each hand.

The team was very enthusiastic. I certainly exceeded their expectations, as well as my own. The conclusion? Despite all the damage to my hands over the years, reduced sensitivity and significantly reduced dexterity due to my recent surgery, I can still sense quite a lot. I may have to approach the process of grasping things with new strategies, but the basic information is still transmitted accurately from my hands to my brain.

Thank goodness.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Konstantin Olsen

How’re Y’all Doin’?

· · 2 Comments

Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, indeed.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Sideways

· · Leave a Comment

I had my first visit with my new occupational therapist last week and learned a few things. I learned that it takes about 18 months for your nerves to rewire after the kind of surgery I’ve undergone on my hands—but that most of the change happens in the first 6 months. I learned that my skin grafts will never have full sensation, although I can sense more than I realized. And I learned that I’m not imagining how the skin flap on my middle right finger is sending confusing signals to my brain about what I’m actually feeling and how my finger is oriented. More on that in a minute.

My OT works in my hand surgeon’s office, so she has a ton of expertise when it comes to my specifics. This is a great blessing. She explained that even if some of my nerves don’t regenerate, others may learn to compensate. To get a baseline assessment, she had me lay my hands outspread (as much as I can) on the table, palm down and then up. I had to close my eyes while she tapped different spots on my fingers with a series of plastic filaments, from a hair’s breadth in width to the thickness of a pencil lead. When I felt something, I let her know.

This took a while, but what we discovered is that my ability to sense touch is better than either of us expected (a good thing) and that my grafts have both deep pressure sensation and the ability to detect heat and sharpness (a very good thing). So, at least, I should be able to avoid burns and serious cuts. It’s not a free pass, but reassuring.

My right middle finger, in turn, has good sensation except for the flap’s seam. Basically, skin on the right side of that finger is now folded over the top and connected to the left side, with the top third amputated. It looks odd and stumpy, but it works well enough. What’s curious is how I think I’m still touching objects with the side of my finger when I’m actually feeling with what is now the rounded tip.

My OT explained that the nerves in what used to be the side of that finger are specialized, and my brain is still registering sensation as if my finger is moving sideways. Combine this with the fact that the finger is now a third shorter than it used to be, and it’s no wonder I can’t quite figure out where it is relative to objects I’m touching. Fortunately, she said, this will resolve with time as my brain rewires. Fascinating.

More sessions to come over the next few weeks as I learn how to use my hands again. My homework is to practice curling what’s left of my topmost knuckles before I bend my lower knuckles to approximate a fist. That way I achieve more of a grip. I’ve discovered that it helps to practice this while holding the steering wheel of my Prius, which is thick and padded and just about the right curvature.

Mostly, however, I need to be more mindful of how I reach and manipulate objects. I suppose this will become second nature with time. But it doesn’t hurt to bring a sense of purposeful awareness into simple movements. A good lesson there, too.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: Hunter Harritt

New Year, New Hands

· · 2 Comments

Last Thursday, I finished my 40th dive in the hyperbaric oxygen chamber. My grafts have healed. The Wound Center staff gave me a “certificate of completion” decorated with pictures—a fountain pen and typewritten words, a graphic for all the podcasts I listened to while bandaging up my fingers after my dives, an image of a Fig Newton, my favorite post-dive snack. Everyone signed with good wishes. I promised to come back and visit.

It seems amazing to be through. I still have bandages on my thumbs—the right as it continues to heal and the left, to protect a chronic pit that waxes and wanes. I’m moisturizing the grafts during the day, leaving them exposed to the air so the skin toughens up but remains pliable. I’m learning to interpret the sensations from the flap on my right middle finger. And I’m touch-typing away, thank goodness.

Christmas weekend, I took my daughters to see my sister and her family in the Midwest, my first trip since Al and I traveled to Norway in August. A good visit, anticipated for months, certainly not as strenuous a journey as this summer, but a bit of a psychological hurdle, given how my hands fell apart when we were abroad. I took extra care to protect my fingers, which paid off. No new ulcers, no damage. Just a rotten head cold on the way home, which mostly cleared by the end of the week.

So, here I am, starting 2018 with “revised” hands, all ten fingers. There is adjusting to do. I need to relearn what I can and cannot tackle, given that left index and right pinky are fused at the joint, right middle is stubby like a cigar, and left middle no longer bends at the partially amputated, grafted tip. The grafts have no nerve sensitivity, which requires mindful awareness of what I place where. Most of my fingers no longer move the way they used to. I’ve made an appointment for Thursday to see an occupational therapist in my hand surgeon’s office, to get some exercises to strengthen my grip, increase flexibility and discuss what I need to adapt.

Still, I’m feeling upbeat. I can do for myself again. Even temperatures here in the deep freeze for another week are only a temporary annoyance. Tucking hot packs into my wrist warmers staves off numbness. Staying cozy beneath the covers for an extra hour in the morning, now that I don’t need to push to get to the hospital, helps, too.

I could never have imagined, on New Year’s last, that I would be celebrating having all my fingers today. It’s just as well that we can’t see into the future. Too terrifying. If 2017 has taught me anything, it’s been how to stay very focused on the present, to measure progress in small steps, to be grateful for little victories that add up with persistence, to not let my fears keep me from taking reasonable risks for my health.

So, here’s to 2018. Bring it on. Just let me keep my fingers, please.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.