Remember to Keep Listening

The man with the springer spaniel

Once you’re in the groove of working, the patients the mountains of paper work and phone calls to make can start to blur together. But luckily genetic counseling is a job where that one person will snap you out of the blur.

A man had called to reschedule an appointment that he had made for his wife, and then when I called a few days before the rescheduled appointment to remind him about it he said they perhaps might not be able to make it after all. Then he called me again and we went back and forth about if he should come to get some information if his wife doesn’t feel well. I was a little annoyed by all these phone calls, because I was busy and I was feeling like a newbie pushover.

He arrived at the appointment without his wife (she had a fever) and started out by asking how long I had been doing this- my favorite question besides, “Why do you look so young?” Not a very good start, I thought.

As we made our way through my obligatory questions, I got to know this persistent man a little better. He and his wife had recently retired and moved to Atlanta because of the hub airport and settled in to enjoy what they thought would be their “golden years”. That’s when she got a rare late-stage cancer, and now everything was turned upside down.

He talked about how his wife had once been extremely active and had especially enjoyed horses and their dog. He’d lost over 30 pounds since his wife got sick, which he said was partially because he was now the only one walking their energetic springer spaniel. His wife, he said, was now primarily a patient.

What really struck me was this loss of the light at the end of the tunnel for this man. Just like so many people, it seemed they had spent their lives working hard, and raising their kids (now scattered across the country). All the while looking forward to living life for themselves and really enjoying each other, when time and money finally allowed for it. Along with him, I felt frustrated that cancer had taken this from them.

And I was also feeling mad, because this man was a good one. He wasn’t just going with his wife to all of her cancer appointments; he was trying to go to the appointments for her. He was taking everything on because she couldn’t. When I told him I thought he was pretty great, he shrugged and said they’d been married for over 40 years and if the shoes were reversed she’d do the same for him.

I don’t know what the moral of all this is, other than that I was shaken up by this dedicated husband who’d gotten a raw deal. And crying a bit after he left was a reminder to keep listening.

My Experience at Huntington's Camp

This biological string of nucleotides is something we universally share. In my fourteen months as a genetic counseling student, the majority of my efforts have revolved around that string of nucleotides, so I have had a lot of time to think about it.

If you really take a second to pause and consider how much of your life is determined by those A’s and T’s, the G’s and C’s, I bet you will be taken aback by how something so small can be of such consequence.

These were the thoughts running through my head as we pulled into Camp Friendship for my weekend at Huntington’s camp. I was slightly nervous as we started to unload the bus and organize the luggage. We had discussed Huntington’s in class plenty of times. We’d reviewed how the repetition of three nucleotides, cytosine-adenine-guanine, could lead to this progressive neurodegenerative disorder if the expansion was large enough. We had discussed the severe symptoms and the adult onset.

But we had never talked with a person affected by Huntington’s. We had never seen the chorea, their jerky involuntary movements, in person. I didn’t know what to expect or how I would feel.

The campers ranged in age from their 40’s to their 70’s. Some were already experiencing the chorea, while others only had subtle symptoms. These were the things I noticed right away. But after spending only a few hours with the campers, their symptoms faded from my mind as they shared moments from their lives, their experiences.

We spent the weekend doing crafts, playing games, and eating our meals “family style”. These activities brought us together. I was surprised by how many things other than Huntington’s I thought about that weekend. Each camper had a story to tell, and Huntington’s was only one piece of their journey.

I think what I enjoyed most was watching how the campers interacted with each other. They were supportive and kind and there was a natural camaraderie among them. Several of the returning campers remarked that this was one of their favorite weekends of the year. The act of simply being together was powerful.

I think the experience reminded me that our actions do not need extravagance to make a lasting impact. As genetic counselors, we are often with patients in times of great stress and uncertainty in their lives. While we cannot give them the answer of what to do, we can sit with them while they decide. While we cannot cure the disease their child has been diagnosed with, we can support them as they learn to cope. The power of simply being fully present should not be overlooked.

I left Camp Friendship feeling gratitude for the opportunity to spend time with all of the campers. Although nearly every aspect of their lives had been altered by their Huntington’s diagnosis, they did not let that diagnosis define them. Our string of nucleotides may be an important piece of who we are. But it is just that, only one piece.

Focus Internship

What is a Focus Internship?

We get this question a lot. One of the reasons I love Emory’s program are the significant research opportunities. The Focus Internship (FI) involves four main areas.

1. The first is working as an intern with your focus mentor. For some this will mean seeing patients on a regular basis, others don’t see any patients. Basically, we work with our mentors on other research-related activities for approximately 4-8 hours a week during the fall and spring semesters and a four week full-time internship in the summer between our first and second year. This can mean anything from working on other research projects, entering research data, working on a registry, seeing research patients, etc.

2. The second is your capstone project. This is the most significant portion of the FI. During the summer of our first year, anywhere from 15-30 mentors from all different areas will come and present their project or areas of interest in order to create a project with them. You will work with them and a 3-person capstone committee on a project that will eventually produce data that will feed into the third part, a publishable manuscript.

3. As I described, the third part is producing a manuscript rather than a thesis. The manuscript is mandatory, the publishable part is strongly recommended. Our first two classes have all pursued publishing and have even presented their research at various meetings (like NSGC).

4. The fourth part is a mock grant. We work on and develop an idea that can be related to our FI. We’re “given” $150,000 per year for three years and over the period of Spring and Summer of our first year we create a thorough mock grant proposal. The purpose of this part of the FI is the experience of doing research, coming up with an idea, and pursuing financial backing for your idea. However, some mentors may even like your mock grant idea so much that they want to pursue it in real life.

I love my Focus Internship. I think it is a very unique opportunity to get thorough experience in research that I will be able to use in the future.

Additional tips from the focus panel that we had last week:

· Research the mentors, see what kind of work they do and what previous papers they have been on.

· Ask mentors you interview with if they have any recommended papers or resources that support their project.

· Ask mentors what they are looking for in a mentee and what additional activities they can offer you.

· Is seeing patients as a part of your rotation important to you? Make sure you ask if your potential mentor has any opportunities for you to see patients.

· Are you the kind of person who needs regular meetings with your mentor, or can you take an idea and run with it, so to speak, without a significant amount of input from your mentor? Make sure you get a sense for what your potential mentor prefers. A lot of times, they will say this upfront, but in case they don’t, make sure to ask.

· The most important part is picking a mentor that you can work well with. Even if your interest in the project is not as significant up front, if you get along well with your mentor, that will make for a much more pleasant focus internship.

· Prepare a list of what you bring to the table. Similar to your interview for the program, make sure you can say how certain experiences would help you on a project or how it would benefit the project’s team. If you don’t have any experiences, just make sure you have a reason for why you are interested in that specific project.

· Keep an open mind while people are presenting their projects. Interview for projects that you may know nothing about, you never know where that may lead and you may develop a passion for an area you may have not heard about before coming here.

If you ever have any questions, please feel free to ask any of us! -Amanda Hodgkins Class of 2016