By Karen Brain

The New Year is a great time to reassess wellness choices. But what if our decisions could never be changed? If our decisions at the start of our journey set the course forever, offered no turning back or opportunities for a “do over.” What if the choices made for you as a toddler determined your lifelong journey?

My whole life has been about the pursuit of physical wellness. To me, it means maintaining my physical function and independence despite my debilitating disability, and doing so by fighting the disease with everything I’ve got, no matter how painful that fight might be. I know I will still become more disabled over time. But if I fight it, I can hopefully delay the speed and severity at which it disables me. I’ve learned during my journey that there could be just as many consequences as there are benefits to the fight. So hopefully the best course was selected.

Last year, my massage therapist, Ana at Pacific Massage and Wellness Center, brought to my attention that my artificial knee seemed to have problems. Strange that I hadn’t noticed it myself; I didn’t have any pain then. But she’d already proven her health-related superpowers, so I had it checked. Sure enough, it was time to have my artificial knee redone.

I started having joint replacements when I was a child due to my Juvenile Rheumatoid Arthritis (JRA). Starting at age three, I spent one-third of my childhood in the Children’s Hospital in Los Angeles (CHLA) to access the JRA experts and what I call torture treatments, because that’s what my medical team said I needed.

The more time that passes since I was in CHLA, the easier it is to forget CHLA…until I have another surgery or similar medical experience. Then the memories come flooding back, sometimes more disabling than the procedure in front of me. Something triggers a memory long forgotten, like that undeniable hospital soap smell unlike any other soap, or seeing a crying patient, or the endless medical equipment sounds, and suddenly I’m in CHLA again.

Back then, they treated JRA with steroids, and for those who could afford it or had access to resources to get it, Rehab. For kids like me, Rehab meant inpatient treatments including splints, serial casting, various types of hour-long physical therapies, and joint injections. A variety of painful treatments each day, one session right after another, from sunup to sundown, with no breaks in between. Weekends, holidays, and birthdays were not days off, and during the school year, you were expected to do schoolwork too. Mealtime was just another form of therapy while we ate.

There were three painful body-stretching therapies done on gurneys to train our bodies to be in the “correct” positions: Tilting, Proning, and Stretching. Some kids would cry the entire time on the gurney, some would scream, and some would talk and play games to try to distract themselves from the pain.

Tilting was the most common during mealtimes. Lying on our back, feet flat on a board at the foot of the gurney, body tied down with four straps; one across our ankles, knees, hips, and one over our chest. Once tied down, they’d start cranking the manual handle to lift the gurney’s head until we were standing vertically on our feet, to train our bodies to stand in that “optimal” straight position. They’d strap a tray to the gurney for us to eat while tilting.

For Proning, we’d lay on our stomachs with our feet off the end of the gurney, straps tied at the ankles and hips. These gurneys had a hole for our faces. Intended for kids who couldn’t prop up on their elbows or turn their neck, we’d look at the ground for an hour. If we could sleep like that, it was naptime.

When we saw staff approach us with both a gurney and the wooden frame, we knew it was time for Stretching. The wooden frame was like a door frame without the door, and at the top, in the center of it, hung a noose. Lying on our back on the gurney, with one leg strapped to the gurney, hanging off the end of it (knee at a 90-degree angle), and another strap over the chest. The other leg was tied at the ankle in the noose. Once strapped in, they’d slowly push the gurney through the doorframe to raise the leg in the noose as high as possible, to stretch our hamstring and hip flexor muscles. Sometimes we would try to run away from this medieval torture before they could strap us down.

Serial casting was used to “correctly” position our joints. In my case, I would have casts on both legs, from the hips to the toes. Every few days, they sawed off the old casts, straightened my knees, and quickly wrapped them in fresh plaster to set the new shape. The casts provided added weight during leg lifts in physical therapy.

When I didn’t have casts, I wore splints on my legs during the day, like Forrest Gump. I wore one type of splint on my hands by day and another at night. I slept with both legs strapped in a Continuous Passive Motion (CPM) machine, which would bend and straighten my legs all night long. Back then, it was as loud as a cruise ship horn. Good luck sleeping through that! I’m sure my roommates loved it.

We also had pool, occupational, individual, and group physical therapy sessions throughout the day. The staff told us when to wake up, when to use the bathroom or shower, when to eat, and when to sleep. They also managed what we ate and how much; they weighed us to make sure we didn’t get over our ideal weight.

But looking back, the one type of therapy glaringly missing was psychotherapy. Fortunately for me, Mom researched and found a child psychologist for me to see regularly. I can’t believe the only time I remember anyone at CHLA even mentioning anything like mental healthcare was when I was 12 years old, when my roommate attempted suicide. The last thing she said to me was, “It’s hard enough to live with arthritis pain every day, but this place is hell…” The next day, a staff member asked me, “Do you think it might help to talk to a psychologist about what happened yesterday?” I said, “I think you’re too late.”

Why wasn’t mental healthcare made available to all of us for the things we endured while in their care? They made us do every other type of therapy, why not psychotherapy? I remember they occasionally gave us the opportunity to give shots and put casts on dolls in the playroom, or to make them tilt, prone, and stretch. I always thought it was weird. It felt like they were training us to do hurtful things to the dolls, as the medical team did to us. I told them, “No, I don’t want to make the dolls hurt like I hurt.”

I used to run away from the hospital because, in my young mind, what could be scarier than the pain and suffering caused by these so-called experts, putting me through this in the name of helping me. (Well…Sunset Blvd in Los Angeles was pretty scary.) I still have nightmares about the things I experienced as a minor. Sometimes in my sleep, I start screaming out loud, and the only person who’s been able to pull me out of it is my husband. On the other hand, when I sleep, I can sleep through anything. I’ve slept through apartment building fire alarms. It’s one of the reasons I won’t live alone.

When I was a teenager, I had a friend who also had JRA and used an electric/power wheelchair 100% of the time. She did not go through the same Rehab I did, nor did she have all the surgeries I had. We discussed our differences often. I’d say, “But don’t you want to walk?” She’d reply, “Don’t you want to sit down?”

“I know how much pain you have every time you’re standing or walking, Karen. Don’t you want to sit down?” I’d say, “But I like being able to walk.” She’d ask, “Are you sure you like it? Or is that what the world has taught you that you should like? Is it because our society doesn’t include people like us and doesn’t make things accessible to us? Are you sure you like it? You like Rehab, all those surgeries, and all that pain? How do you sleep at night, Karen? Because I usually sleep just fine.” Touché, friend.

Any time my abilities come up in conversation, talking about my ability to do this or that independently, like giving me positive feedback for being able to walk, I still hear my friend in my head saying, “But how do you sleep at night, Karen?”

Some have asked me if I regret Rehab. The answer is no. Considering that Rehab was the best available treatment at that time, and considering this world—hell, this country—is still not really accessible for people with disabilities, I do not regret my time in Rehab.

Ideally, by now Universal Design would be the norm, but it’s not. If you had to use a wheelchair starting tomorrow, would your home be accessible to you? No steps or staircases? What about your bathroom (toilet and shower included) and kitchen (reaching all cabinets, etc.)? And wheelchair-accessible transportation? How would using a wheelchair impact your current job or dream career, or would there be any difference? What about your hobbies and interests? Are those accessible? Could you continue to care for your loved ones, pets, and yourself as you do today?

Sometimes I try to imagine being Mom back then, faced with those choices. To live in one city, working full time to provide “good healthcare” to pay for the expensive treatments the experts told her were necessary for her disabled child, being treated in another city. Other days, I wonder if those medical experts had any idea of the emotional impact those treatments had on us kids, and I wonder if I’ll ever stop screaming in my sleep. I also wonder why my Rheumatologist has said to me multiple times, “If only you had been born later, after better meds were discovered, you wouldn’t have had to go through Rehab.” (What am I supposed to say to that?!)

As Maya Angelou said, “Do the best you can until you know better. Then when you know better, do better.” Rehab was the best option available at the time, and I was lucky to access it. (Or was I?) Sure, they could have made different choices on how they provided those treatments, and sure, they could have offered the medical staff for us to work on instead of dolls. But overall, it gave me a lifetime of various freedoms in a world still not designed to include people with disabilities, even after all these years, and Mom made difficult choices then to provide this freedom.

What I’ve also learned during my journey is to find at least one positive thing in what seems terrible or impossible. That’s what I look for: at least one positive thing. Like Rehab, you know what was awesome about that? Meeting so many people from diverse backgrounds. There were children and staff from all over the world. I loved learning about their cultures and lives outside of the hospital. Holding on to the positives helps me get through my difficult experiences.

I feel like I’m still learning what being disabled means to me and what wellness means to me. I think wellness must mean something different for each of us, and I suppose it should. Whatever it means to you, I hope this year you’re able to do the best you can to achieve it with what you have available. Happy 2026!

This article was originally published in the 2026 New Beginnings Issue of Las Vegas PRIDE Magazine, and can be read in its original format here.