On the research I do

“They are changing the world and I want to help,” one of our regular volunteers told the guy who runs the hospital department. It was a glowing review from someone who had spent the better part of the last decade paralyzed after a high level (cervical) spinal cord injury. We’ve seen him regularly for the better part of a year now and you would’ve thought we coached him if you could hear the review he gave the man who came to see our little lab. I feel stuck a lot, but yesterday I was reminded of why I do what I do.

We were lucky. My Co-PI has been fighting with the hospital to get us more space. It’s so bad that this is probably one of the main reasons he may or may not be leaving us (more). I don’t blame him, we regularly do very interesting, cutting edge research, and we’re shoved into a space so small we have trouble getting wheelchairs into it. Ironically a hospital, which probably has a higher concentration of wheelchair users than anywhere else in the city, has a huge accessibility problem. We need space and we believe the people that can give it to us don’t understand that. Thankfully yesterday my Co-PI finally got a meeting with the person who runs the entire research department. Basically someone I would never see, much less talk to in my lifetime under any circumstances, but here we are.

It was perfect timing too. We had our collaborators with us these two days and we had participants who had spinal cord injury for the experiments we were running. That meant wheelchairs and a perfect example of why we need more space. As mentioned previously, the participant we had was someone who worked with us extensively so he knew who we are, what we did, and what we wanted to do.

I bring that last part up because sometimes, when you’re like me, you focus so much on the thing in front of you, you forget why you even bothered to begin with. Yesterday was a good reminder of why I do the research I do and why I’m excited to finish my PhD in this field. We met with the head person, the guy who’s my bosses, bosses, bosses, bosses, boss, and we got to watch as our friendly participant told him what he thought about us and even now I’m struggling not to cry.

Our participant suffered a cervical spinal cord injury more than five years ago (not going into details for privacy sake). He lost function in his legs and most function in his arms. After a nerve graft he got use of one hand back and while he can use both hands the nerve graft gave him the dexterity to use individual fingers. He’s active and uses a manual wheelchair, but his fine motor skills are not great. He worked with us on a long-term study and it ended recently with some unexpected results that we most certainly cannot talk about.

He told our visitor about how we let him stand and hug his wife for the first time since his injury. He said what we were doing is groundbreaking, world changing, life altering. He explained how lucky he was to participate in our studies and how he constantly recommends us to the friends he’s made in therapy. He shared funny stories of things we did and some of the benefits of working with us. He talked about the giant poster we all signed for him when he completed our study and how he hung it on his wall as a reminder of our time together.

The entire time I stood there trying hard not to cry. In an academic lab you are completely removed from the population you want to help. Well almost, you interact with them for studies, but for the most part you don’t get to see the people the work you’re doing will help and you certainly don’t get to see any benefit from the work you’re doing. Academic research is long-term payoffs, things that will benefit people 5, 10, 15 or more years down the road. Rarely do we get to see something benefit a person while you’re doing the research. Clinical research is far more immediate.

I’m not going to lie, I get bogged down a lot by the work I have to do. All the analyses, the planning, the making sure things are going smoothly, it’s a lot and it’s so easy to forget that at the end of the day you’re doing the work for others and not for yourself. Sure, I will (eventually) get my degree from the work I am doing, but the studies we do are clinical meaning the benefit can be immediate to the people helping us with the study.

Even then it’s hard to remember. Sometimes I feel like nothing we (well, I) do matters. I mean it’s not like we’re curing anything or even attempting at curing, I haven’t published, I haven’t made significant progress on my PhD, I feel very stagnate most days. But yesterday I was reminded that the way we measure success in academia isn’t always the best way of measuring progress. Sometimes just improving someone’s life is enough to be successful. Letting someone stand and hug their wife for the first time in years can be enough and I don’t need a publication with my name on it to celebrate those things or be proud of the work I’m doing.

It’s been a good few days for me. Busy, but good. I hope to get publications finished soon. I think eventually I’ll make more progress on my PhD work. I know I live in a publish or perish world and I don’t like it. I like the stuff that happened yesterday, the stuff that’s real, seeing someone tell another person how we’ve changed their life and how they want to be a part of the research so they can do the same for someone else.

You can’t read that in a journal, but it doesn’t make it less real or any less important.