My shoulder had been trying to warn me for a while. While camping I discovered I couldn’t get out of the tent and up into my chair unaided anymore. At home, increasingly embarrassed, I’d transfer into the car and fall short, finding myself stuck between my chair and the driver’s seat. I’d have to claw my way in via the steering wheel or have some passing frantic AB shovel me into my seat.

I pretended not to notice. I told myself, “Hmm, getting older. Getting weaker. Don’t have the old gymnastic timing anymore. Oh well.”

I’m a 62-year-old T8 paraplegic — for almost 30 years now — using a fast, ultra-light manual chair. Shoulders are my Sherpas, my twin-turbo locomotives — my divine beings. I worshipped them and refused to forsake them. But last March the pain had grown so severe that several times, mid-way on my morning commute, I wondered if I would be physically capable of pushing my way to my office. I finally had to face the music: Surgery.

The Diagnosis

At the orthopedic office, the shoulder doc asked me to raise my arms over my head. One went only halfway up. The standard medical poker face failed him. He frowned. Poked around. Examined me. Ultrasounds, MRIs, everything later revealed what he had already known: tear in the rotator cuff, pretty big one, four or five centimeters long.

It turned out the pain wasn’t even from the damaged parts, it was all those other muscles back there, complaining about the extracurricular work they were doing that they weren’t designed for. That’s the life of a paralytic: Half your body suffers because it is brain-dead, inert, unfeeling and unmoving, absorbing abuse, and the other half suffers because it is collecting time-and-a-half on the life-work time-clock. Try explaining THAT to the able-bodied. The all-too-obvious wheelchair and accompanying mobility issues are just the tip of the iceberg.

I got handed off from the diagnostician doc to the surgeon doc. These guys are like engineers surveying a buckled bridge. They have all the right ideas, the super-duper tools for the job, and couldn’t care less if traffic is going to back up for six months if that’s what it takes for a satisfying engineering solution. They want to fix it — now.

But what about my life in recovery? Work? The business of getting out of bed? How am I going to pee one-handed? Will I be able to make my own lunch?

He shrugged, “You can do the surgery now or not do it at all and just muddle along. Tears that big don’t fix themselves on their own. Your call.”

Thinking Ahead, Falling Behind

My wife, Lucy, and I knew from experience that ordering expensive medical equipment often took some time to wend its way through the system. We wanted to get an early jump on the process to minimize difficulties and ensure we’d have the equipment I needed to recover. We contacted the occupational therapist’s office, explained the situation in some detail, and made an appointment.

At our appointment, the OT looked meaningfully at my manual wheelchair, knowing that I had pushed my way down the hall and into her office. “We can’t order you a Hoyer lift and a commode because you don’t need them,” she said. I explained that my shoulder surgery was scheduled for six weeks ahead and that I needed the equipment for then. “But we’d have to train you, and that won’t be necessary until you need the equipment. We won’t authorize equipment until you have been trained. Things happen if you don’t have training,” she suggested ominously, looking at my wife as if the first thing Lucy would do, armed with a newly authorized hoist, would be to dump me on my head.

Lucy and l looked at each other open-mouthed. What universe had we just been plopped into? Of course! The Medical Insurance World — a wild disorienting galaxy where up is down and right is left. A place where the use of a commode requires training.

“Besides, you need to talk to the Wheelchair Person, not me,” she explained. “I’m in Geriatrics. Why did you schedule with me?” The office had made the appointment with her, not us. She pursed her lips and said, once again, we needed “the Wheelchair Person.” We were clearly wasting her time.

We had thought, silly us, that contacting occupational therapy with lots of time in advance might help with the inevitable delays and Murphy’s Law situations that inevitably result. Boy, were we wrong.

We made another appointment, two weeks later, with the Wheelchair Person. But she was sick that day, and the next open slot wasn’t for another two weeks. By then, the Day of the Long Knife was imminent and panic was rising.

The Adventures Begin

Surgery went OK. It hurt plenty when the pain medication wore off, but I only needed one dose of pain meds in the days following. I suspect most of us living with SCI have pretty high pain tolerances anyway, so perhaps surgery is not as terrible for us as it is for others.

I had more use of my hand than I had imagined, but for weeks you have to watch your arm like a hawk — no raising it. Anyone who ever does this should get one of those portable, powered “shoulder ice pack” things. You strap it to your arm and run it for a couple hours at a time, cycling ice-cold water around your injury off and on for a few days. It keeps the pain way, way down.

But the real adventures began as I recovered. My loaner power wheelchair had only arrived the day before the surgery — after frantic calls between us and OT and the supplier — so I had a way to get home from the operating room at least, but the lift to hoist me in and out of bed (no transfers) didn’t arrive until a couple days later. I slept in the chair for two nights. I do not recommend this.

To be fair to the original OT, the hoist did take some getting used to. Simple enough in operation, it took a little while for us to adjust placement and timing so that everything worked smoothly.

Prior to the surgery my general practitioner had warned me, “You will be at high risk for skin breakdown.” I wish she hadn’t been right. Within ten days, with all that sitting in the chair with no way to do pressure releases, I had managed to get a really good pressure sore going on my bum. It was off to complete bed rest and a two-front war, both shoulder and seat.

Quad Life

So what is worse than a one-armed paraplegic? A one-armed paraplegic who can’t sit. This started a progression that would go on for six months and would ruin what might have been a decent, if prolonged recovery. My life after surgery, for someone who has been close to complete independence since my original injury, was devastating. After the pressure sore developed, I felt like a complete invalid. And not a happy one.

As a para, not much has stopped me. Stairs. Steep grades. Gravel. Pickle jars on the top shelf at the grocery store. But this was a whole new world.

All you quads out there, anyone who uses a power wheelchair, depends on attendants or other nondisabled folks, you have complete permission to snicker, long and loud, right now. I have gathered an entire and complete respect for the moral, cognitive and emotional fortitude you embody every day to deal with an extremely hostile environment. It was a humbling experience to go from para to quad. People treat you way different when you are in a power chair. Especially if one arm is in a sling. And you look cranky.

My frustration level was intense. Formerly easy tasks, like slicing cheese, buttoning my shirt and typing were impossible or difficult. I missed my regular portfolio of home cooked foods — bread, pizza, lasagna, chilaquiles. Lucy, thank goodness, took over the house-made pesto production, so the family didn’t do without that staple during the summer. For some reason, I developed a craving for cilantro.

All the normal things that anyone with a good imagination could think of applied to the shoulder surgery recovery phase — doing stuff one-handed, no daily chores like dishes, sweeping, making dinner, inability to move around in a manual chair, etc.

The idea of a decent, even semi-adequate, night’s sleep was ruined. Only one position, on my side on top of my “good” shoulder, would work. I would wake at 2, then 4 a.m., my mind racing through unpleasant thoughts. My blood pressure went way up. My appetite went way down. I found I could not do much in the way of carbohydrates. I couldn’t eat a whole baked potato. Inactivity took a toll on my muscles and outlook.

Helping Hands

I never threw anything but I cussed a lot. I never broke any crockery or assassinated any medical practitioners (at least outside of my fantasies), but the six months after the surgery, compounded mainly by the skin breakdown, was about the most miserable stretch of time I have had since my initial spinal cord injury.

The first piece of advice I would give to anyone contemplating shoulder surgery is to be sure you have a sound network of faithful, patient, even saintly helpers in place. In my case it was Lucy who extended the concept of amazing. She solved problems of every description, large and small, put up with my black moods, indulged me and my multiple needs with mercy and tact. I never would have made it through without her. I am astonished, thrilled and grateful that she still talks to me.

On the days when she was gone, I relied on Easy Does It, a nonprofit that provides emergency attendants in Berkeley, California [see NM, November 2016]. They were astonishingly prompt and reliable, getting me in and out of bed, etc. I felt fortunate that my city had gone ahead and set up this program.

Lessons learned: If you are going to do this, you will need a lift to get in and out of bed. It took us two weeks to realize the OT folks had ordered a sub-optimal sling, diagnose its limitations and buy a cross-leg sling at our own expense. You’ll also need a loaner power chair to get around. Most importantly, you need to prepare for the drastic, inconceivable loss of independence, which will last a minimum of three months if your damage is moderate. Make sure you have a good set of activities you can do one-handed for amusement. I read a lot of books, watched the Tour de France on TV from beginning to end, and fumed. I had hoped to be doing some writing, but for the first stretch you can’t type with both hands, and have to be careful later. And of course for me, with the pressure sore, it was almost impossible to type when in bed on my side. When would this ever end? Would “normality” ever return?

Looking Ahead

Eleven months later, it almost has. There were some milestones. The biggest one was finally being given medical clearance to transfer, so I could get out of bed and into my manual chair again. That was nearly four months after surgery.

My skin has healed well enough to be back at work, although I have to take frequent breaks off my seat. Transfers are almost back to normal (cars are still hard.) Shoulder flexibility and strength are back to 90 percent (the doc had said he would be thrilled to get me back to 80 percent.) My cardiovascular endurance took forever to return. And I am still improving, although more slowly.

Would I do surgery again? If I could manage my skin condition better, yes. But I would go in a whole lot more prepared. I would expect to be one unhappy camper for six months.

I asked the doctor about the root causes of my injury: was it more the long-term use, all those miles of pushing around? Or was it the shorter, high-stress, intense loads, like transfers? I was trying to figure out how to manage the future, establish the best ways to preserve my arms. I didn’t get a good answer. He mostly said “both” and indicated that it would be a good idea to be conservative with my arm usage.

I am still doing daily shoulder stretches and an hour of physical therapy strength exercises three times a week. One day each week I resolve to give my shoulders a complete sabbatical and not do anything more strenuous than a roll to the grocery store a few blocks away. My sense of humor has nearly returned.

But I still have another shoulder.

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Further Reading on shoulders and shoulder surgery:

• Total Shoulder Replacement in Wheelchair Users
• A Non-Surgical Option For Shoulder Repair
• Shouldering the Load
• The Truth About Aging