I truly understand the concept of homesickness. The hospital had become more like a jail. I yearned just to be touched, hear my kids, go to the bathroom when I wanted, and eat real food. My appetite had recovered a little and hospital food is simply terrible. I really, really really, wanted to go home or so I thought I did.
When I thought of home with my family, it started to make me extremely anxious. How was I going to get around? Who was going to help me to the bathroom? WHAT WAS I GOING TO DO IF SOMETHING WENT WRONG? I didn’t want to disappoint anyone- especially Greg. He said he wanted me home, but did he (or I) really know what we were asking for? Was it just another near catastrophe waiting to happen? This would panic me in the middle of the night. How would I integrate back into society, especially with all the limitations I now faced? I was scared. But it was time to get over it. They were coming for me- and it was pizza and movie night, so we needed to get home.
PT and OT were ordered. Medications were taken care of. Assistive devices were delivered. Appointments were set. But those things were not what I was worried about. Nobody tells you, or even really talks about the emotional strain and depressive changes you undergo having major medical problems with hospitalizations and harsh medical treatment. But you know what? There are actual, physical brain changes that are evident on MRI. And guess what?!? With all the MRIs I had done- those changes were evident on mine. It’s not just all in my head- my brain had actually changed. Fortunately, these changes are reversible. It’s a syndrome called PRES. I had a less severe stage of it, but nonetheless, it was contributing to my mood changes. There seemed to be a mountain in front of me to climb and it was so difficult to take that first step.
The first days I was home, I cried, a lot. Why had this happened? Why me? Why so many obstacles? Why would someone want to save me? Why? Why? Why? And there was no answer. I felt like there was a tightness in my chest that could only be relieved with crying and hugging my husband. And that I was alone in these questions and that it wasn’t normal. I should be thankful! I should be happy! I should be optimistic! But I just couldn’t.
First visit with Dr. Superwoman. I had not deteriorated physically. I was eating, my labs were excellent, just your typical transplant patient. Then she asked me about my moods. Uh, oh. “So, you’re probably feeling inadequate, amotivated, anxious. You feel like you can’t adapt and don’t want to accept where you are at.” Holy Cow. She spoke everything I was feeling like she had been inside my head. Let me tell you, validating what someone is feeling, is almost as important as them feeling it. Especially a “perfectionist” who rarely cut herself a break or show herself any grace. I wasn’t alone. Many transplant patients feel these inadequacies, even without all the complications I had experienced. “You are a rock star. Don’t forget that,” she said.”You are doing great.” I try not to forget. The moods have been improving. I am healing.
Now, the “why” questions. I knew that to answer this was impossible. But it was so hard not to ask. I was running in circles. A wise person (thanks again to Pastor Chris), redirected my questioning, but encouraged me to keep asking. “Where are you at in this God? What will come of this?” Those questions seem much more productive, I have been practicing (with the “You are a rock star”). I do hope to find a deeper meaning to this. Patience, Demara. Believe, Trust and Listen. He is always there.
I am so thankful to be home.