It's not as easy as it looks.

In truth it probably sounded easy to no one. I’m reminded of when Susan and I first started dating (10 years ago this week!!) and we had this amazing honeymoon period that must have lasted a full year. We talked non-stop and it seems we never had a fight.  Whether because of luck or our constitution for looking past difficulties, we have had a similar experience here.

All you loyal readers know that everyday has not been perfect, but nothing gave us great pause. Thanks to excellent guidance, we had discussed and mentally prepared for the many trials we might experience while here. We could not have prepared for the feeling of being met with every challenge in a 2 week period, and at a time where grief, loss, and exhaustion already lingered. Despite doing our best, I felt on the verge of a break.

I now recognize a small but significant change in the weeks since we decided to stay. The community’s guard seems to have come down, which may come with a little more negative than positive - but it is real. One person told us they were excited when we decided to stay because it made them feel that they must be doing something right.  Surprised again by how decisions are interpreted, but it shows a level of fragility I did not recognize.

As much as I try to tune-in to this experience, there is so much I can’t get. Each day I become more aware of my limits. I strive to empathize and see the world through the eyes of this community, but feel blinded by my privilege.

Right now, I am grateful for the timely support of the people I chose to reach out to, and the typical email or conversations I’ve engaged in with others. As isolation loomed, the web of our support network caught me and held strong as I fell into random threads and grasped for those I needed. Lifted by my loved ones, I also had the strength to connect and participate in the support network of others - which I probably needed as much as they did. 

And then the storm passed and what looked like an unbearable week has turned out to be slightly above average. Let me tell you about it after some photos from our bike ride.


A patient I got to know when I first arrived came back. Back then she unabashedly joked around and always smiled. She recently moved around and our staff were unable to track her down. It turns out she lost track of her medications too. Due to weight-loss and her demeanor, I did not recognize her when she arrived. As I checked her over everything said she was not well. She told me she has been sick for 6 weeks and her vital signs said she was in trouble. We sent her directly to the hospital. 

After 4 hours at the emergency room she started running a fever and they admitted her. That evening, she fell into respiratory distress and they placed a breathing tube. I have heard she has improved, but has almost no immune system right now. The next few days should tell the story.

I know this seems like a strange story, but this is things going well. She would not have a chance at survival if the Foundation was not here, if she was not found when she was, and if she was not admitted. She received an extra 8 hours of antibiotics because she did not come back to our care center to worsen until she needed that breathing tube.

A quick medical lesson on HIV - it is hard to diagnose problems in people with immune deficiency because most signs of sickness are caused by our immune system’s reaction. For example, I could hear some fluid in her lungs, but the chest x-ray was clear. When someone with a healthy immune system has pneumonia, the body brings fluids and cells to fight the bacteria. This causes a lot of inflammation that makes you cough and feel sick. That fluid and swelling is what they look for on the chest x-ray. In someone with no immune system, nothing shows up in the lungs until there is a farm of bacteria the size of the great state of Illinois.

Other highlights:

  • I had a nice run and we went for an afternoon bike ride because we had a couple cool afternoons in a row.
  • We thoroughly cleaned our house last weekend, which was a great stress relief.
  • Final stages of planning for the opening of the new facility on June 7 are under way! Reducing everyone’s stress levels is the fact that many reports and preparations are finished.
  • We have 11 nurses aide students. They come twice a week in the afternoon to help and learn.
  • Wednesday’s 2 o’clock exercises was a lot of fun. I finally changed up the routine, which seemed good for everyone.
  • Staying home was a joy this past weekend. We read, relaxed, and exhaled.    
  • Chocolate covered frozen bananas was Sunday’s project with the youth. They seemed to have fun giving them to patients, and made a mess eating them. (Yep, we spoil dinner sometimes!)
  • Friday morning a patientgreeted me with Whitney Houston and Mariah Carey singing “When You Believe” as we prepared for his bath. We are obviously of the same generation as we sang this together to start the day.

    That’s it for today. I am starting to get back to my complicated thinking and analysis - so you can all look forward to that again! But I am going to try and write updates on usual life more regularly.


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