My Spirit Is Broken on My Road to Recovery

I was lulled into thinking that I could give American healthcare another chance. I had a 14-day stay at the James A. Haley Veterans’ Hospital in Tampa, Florida, where I was treated like a VIP. I heard about the culture shift throughout the hospital, and I felt it through and through. From the nursing staff to the intern who took the time to share his own history of an autoimmune disease, I received excellent care.

Then I was released to a 24-hour rehabilitation center. I had lost 20 pounds in four months, most of it muscle. I have a hard time standing, and stirring a cup of oatmeal gives my wrists a good workout. After my hospital stay, I somehow expected the less critical care in a rehabilitation space would be even better.

For those who are reading my column for the first time, I live abroad. I return to the U.S. for routine primary care visits to ensure my veterans benefits don’t lapse, but my specialists are in the country where I live. For my most recent trip to the States, I only packed a few items of clothing for what will likely be a two-month stay by the time I am released.

On my first day at rehab, I was taken to a private room without any information about my stay. When I asked a friend to take me to retrieve my carry-on bag with my clothes, I was told I was in isolation and could not leave without the doctors’ permission.

The next day, my only meal was almonds and a protein shake that a friend had brought. My weight had dropped to 99 pounds on my 5-foot-7-inch frame. I needed to gain weight, which is hard to do with snacks as my meals. Fortunately, a loved one advocated on my behalf, and some of the issues were resolved. Loved ones stayed with me for the first week to ensure I received proper care.

Some might wonder why I didn’t go home, but my immune system was too compromised to fly. And at home, the trip from my sofa to my kitchen sink would leave me breathless. I couldn’t carry my laptop. I needed daily rehab to figure out how to function again. Because of my desperation to be independent and not homebound, I felt stuck.

When I first arrived, I would ask and remember everyone’s names. I would chat them up and learn about them — that is my way. I like to get to know people. But eventually, I stopped being me. Now when someone new comes into my room, I keep to myself.

Over the years, I have talked about the importance of having trusted people to advocate on your behalf when you cannot. I am happy that I took my own advice. I hope that you have dedicated friends and family who would be willing to do the same for you. I have witnessed firsthand what it means to have people on my side.

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