Some things I learned in rehab
No pity, please
After my hospital stay in July, I had the good fortune to recover further at St. David’s Rehabilitation Hospital in Austin, TX. St. David’s Rehab delivers comprehensive care, including medical and nursing, physical and occupational therapy, nutrition guidance (in addition to delicious food), discharge planning, speech therapy, and spiritual support.
The most important caregiving St. David’s offers: treating everyone with dignity and respect.
The staff modeled supportive behavior by recognizing gains and encouraging the hard work required to progress. Residents picked up this behavior. Traveling the halls showed me a community not afraid to say hello and wait for someone who required more time to get to where they were going.
I saw all manner of disabilities: those recovering from a stroke, amputees, accident victims learning how to walk again. We all had a hard recovery road ahead. We couldn’t hide behind so much of what we rely on in the outside world: clothing and makeup, toned body, an important job. This left me with a choice: feel sorry for myself in bed or get up and do the work. I don’t mean to minimize the pain and suffering I was going through. Every day, sometimes every moment, was and continues to be hard. Acknowledging the challenges I face and moving forward is productive. Pitying myself holds me back.
After leaving rehab, I ran into someone who hadn’t been aware of my travails. Colitis and leg wound were brand new and probably shocking to them. I caught a whiff of pity in their reaction and was taken aback. I struggled to respond. I felt as though I needed to defend my ability to overcome my health situation.
To me, pitying someone is not the same as being sorry and acknowledging that the individual is enduring pain and suffering. Countless friends and family have expressed their sorrow. I have not experienced this as pity. Pity might mean something else to you. Pity to me is not respecting the individual and their ability to navigate their condition.
In rehab, after the initial shock and denial of my situation started to wear off, I began to experience intense gratitude. For caring staff. For residents showing me the path. For family and friends lifting me up in countless ways.
“Truth is, I have a 1000 tears to share”
I’ve spent most of my life hiding my vulnerabilities. It’s been a lot of hard work! Losing so much in the past year or so, though, has made it essentially impossible to not be vulnerable. This, in turn, has opened the door to be supported by so many willing caregivers. I also am more compassionate to myself and others.
In the song Submarine, the music ensemble L’Impératrice tells a story about how we prefer to stay behind a façade rather than risk showing vulnerability.
The song starts out like this:
People show what they want to, share the same view People smile when they're askew, they don't bleed So no matter what hits you, you walk the line too But can I fall if I need to? Oh indeed
And continues:
I won't make a scene I'll stay silent and serene Watching all your feelings die, I don't cry Do I? My mind in quarantine Body made of plasticine I don't need to say, "goodbye" Do I?
Except that it’s a facade:
We all pretend we just don't care Playing solitaire Truth is, I have a thousand tears To share
I listened to and loved this song for weeks, not realizing that it was about vulnerability. Then I loved the song even more.
Watch a live orchestral version in which you’ll see lead singer Flore Benguigui rocking an awesome dress:
The More You Know: Caregiving 101
What does it look like to treat others with dignity and respect?
Effective caregiving is an art and not an easy one. I’ve spent countless hours training in this art and caring for individuals. Being on the receiving end of care makes me wonder how effective I was when I was the caregiver before I became sick. I constantly felt as though I was saying the wrong thing or not saying enough. Living with a disability gives me valuable new insight.
Everyone’s different
Caregiving that works for one person might be precisely wrong for another. Respecting that everyone’s different saves a lot of heartache. Books are a helpful starting point but never a replacement for getting to know a person.
Examples of help I’ve appreciated: talking live or virtually, rides to medical appointments, food for the household, (including Bun), music playlists, Tylenol, flowers. Anything that helps me focus on my health.
You’ll get it wrong
This one can be awkward. You might think you have it nailed only to find out that you did the exact wrong thing. Just know that you’ll have a chance to try again, maybe not with this individual, but with someone else. And you’ll have learned something along the way.
Meet them halfway
Listening deeply to an individual allows you to better understand what they want and need. They might not articulate their needs in a straightforward way. That’s why it’s so important to listen without giving advice. Talking in a nonjudgmental way allows them to express themselves—or not. It’s really up to them.
Don’t look away
When you see someone with a disability, don’t look away. Instead say hello. If they’re trying to get in the elevator or a busy grocery store aisle, say hi and then let them in!
Inspiration for this post.
You are a marvel!
If I can ever give you a lift to an appointment, I’m happy to drive. Thanks for sharing the tremendous musical production. And that dress!! My goodness, that dress was perfect.