Now that the news has been shared with everyone on the protocol, I can finally comment on this, and we can finally, collectively, begin to process the news and create a plan to move forward.
When I first got the word, I must confess it felt as though someone had kicked me in the stomach. I felt badly later that in the moment I couldn’t be more comforting to Donna, who has worked on making this trial possible for more than nine years. I was numb – in shock – in complete disbelief about what I was hearing.
It made no sense. Only a few weeks before we’d been given the challenge of recruiting another 17 patients for the protocol, and thus I felt at the very least we weren’t in danger of the protocol shutting down completely.
I felt much like I felt after being diagnosed. Knowing the facts now, that wasn’t logical. It was, however, emotional. Emotions don’t have to make sense. They are what they are. I felt defeated and hopeless. What would we do now? What would this mean for HPS research in general? Being in the drug trial had so become a part of my hope for the future, that having it suddenly pulled away felt like the air being drained out of a balloon. My mind darted around, like the deflating balloon, until finally, mercifly, it would get too tired and just land in a heap.
I couldn’t sleep. I went two days without sleep. My mind kept racing, thinking about everyone else in the protocol, thinking about our researchers at NIH, thinking about what we needed to do and how we needed to move forward. My mind couldn’t stop thinking about “the plan.”
I didn’t cry. I wanted to cry. I felt I’d feel better if I could just have a really good therapeutic cry. At the same time, I felt like I couldn’t lose control. I couldn’t let my emotions go to that dark place because now, even more than ever, we needed to remain rational. We needed to be professional and put our best foot forward to work with the NIH. I needed to be strong for everyone who was counting on us and looking to us for leadership.
I wasn’t effective or efficient for a good week, however. I tried. I kept forcing myself to plod ahead, yet the trouble sleeping was catching up with me. I was becoming a space cadet again.
I’m happy to report that now, with some time to process this, I’m feeling much better about things. There is indeed a silver lining to this stormy cloud, and that’s what I’ll blog about next. I just felt the need to tell you of my reaction because I’m sure as this news hits our community many of you will feel the same way. It’s okay. It’s a reasonable response.
You all can do better than I did. Have a good cry. Don’t feel badly about feeling badly. Reach out to your HPS family – we all know how you feel. We can be there for each other, process our grief (it is a grieving process) and we can get through this and then come out the better side even better than before.