We have been talking a lot about the “D” word this week at my house, and I don’t mean the fun “d” word that can be substituted for the eggplant emoji. We have been trying to decide at what point HOD will disable me and force me in to early retirement. You see, I have essentially been working since I was nine years old. I was part of a babysitting team with my step sister, being entrusted to care for children that were just a few years younger than we were. Looking back with my adult eyes, I can see how inappropriate that was. But hey, it was the ’80’s. Work has always been a very strong pillar of my identity. Dare I say, work has been the main pillar of my identity.

Lately, I have been noticing that it is a lot harder to do the things that I do for my employer every day. Simple, mundane tasks require a lot more focus and attention. When I used to be able to solve a problem on the phone whilst also creating a remittance spreadsheet at the same time is now impossible. Multi tasking is a thing of the past. I’ve had to swallow my pride and ask people that I work closely with to not just call me on the fly. I’ve asked that they schedule call times so that I can be sure to finish up whatever I am working on, so that I can focus and comprehend the conversation, and not forget what I was working on. I also tend to shy away from phone calls and meetings, for fear that I won’t fully understand and comprehend the discussion.

It started with the pharmacy. I was picking up some medication for my husband and they asked me to verify the phone number. I didn’t know it. I froze. I immediately told the technician that I was sorry and that I have a neurological disease and I couldn’t remember, and could I answer another question to pass the test. I returned home, totally defeated. My family immediately tried to relay stories to help me feel like it was ok. But this was different. It wasn’t ok. It was the attack on my brainstem coming out to remind me that it was still here and I am at its mercy.

My real job title is “Senior Credit Account Manager”. I manage a portfolio that ranges from $30 million to $80 million USD for a local company. For the last 16 (almost) years, I have lived in the world of heavy machinery. I absolutely love what I do. What happens when I can’t do it anymore? How do I know when the right time to let go is? How can I run this portfolio, and a non profit start up, and appease the boss on my brain stem and continue to hold this all together? If I lose my 9 to 5 gig, what will I do with all of that time to think? I am afraid that I don’t have the answers to any of these questions. I am not sure that anyone facing these problems has the answers.

Has Hypertrophic Olivary Degeneration affected your life? Share your story with us! We can write it up for you, we can interview you, or you can write it and submit yourself! We are interested in patient, caregiver, family and friend stories. You and your story are important to us! Contact us at HODAssoc@gmail.com or Marketing.Director.HODAssoc@gmail.com.