Volunteering for research, feeling the weight of responsibility
By David Lukas, Village of Lakewood, Illinois
I was diagnosed with FSHD in April 2015. In October 2015, I participated a clinical research trial in Rochester, New York, at the University of Rochester Fields Center for FSHD Research. I am the final participant for this study, which includes three visits to Rochester over the course of a year. What follows is my journal entry about my experience participating in this study.
On the plane flying home from Rochester. Such a whirlwind day of emotions. At this moment, flying and looking out the window at the sky, the clouds and the land below, I can’t help but feel introspective about my place in this world. Yes I’m one of seven-plus billion people, but I’m a very small percentage of people with FSHD. And then taking it a step further and being the last subject to be included in this study has me feeling special, unique and honored. Yet I still have my feet on the ground.
There have been several moments today where I’ve been on the verge of being a hot mess and breaking down to a waterfall of tears. Those tears would be a mixture of gratitude, fear, feeling fortunate, honored, responsible and pressured. Trying to unpack each of those emotions seems overwhelming and daunting to me. Yet there is no time like now when everything is still fresh and I have a small window on this plane to get these thoughts down. Because the truth is, when we get home, real life starts again and I will always be able to find an excuse not to sit down and write this all out. So here goes…
What’s hitting me right now is pressure. I feel like I have this pressure to “do well” in this study. Which I realize is crazy cause I’m answering questions and doing strength exercises. But I feel like I have to be a good subject and give them good data so I can help the research of FSHD move forward. And I feel like the FSHD community and every single doctor, nurse and technician who has worked on this study is waiting for me to finish so they can publish this research, which has been going on for two years.
Everyone is waiting for this. Especially the drug companies. So knowing that all of these people are waiting on patient 37 to finish feels very heavy to me. Not in a bad way, but I can feel the weight.
Just thinking about this research not being completed and thinking about how all the time and energy that had been spent would be for nothing until I came along. It blows me away. Thinking about all the people who might have been turned away until they found me when my neurologist reached out still blows my mind. None of this is a coincidence. I was supposed to be patient 37. My being the final FSHD subject through this study to complete this research project is probably too much for me to grasp at the moment. But I can tell you I’m on the verge of tears with the immensity of that.
I have an obligation to my FSHD community. It’s up to me. And while I can see and realize I’m not solving anything and I’m not the one doing the work on this disease, I’ll be the one responsible for finishing this research so we can continue to learn more about FSHD and move closer to a cure or stop gap for this disease. Again, I sound like a broken record, but while the thought of the immensity of that brings me to tears, I don’t fully grasp all that entails.
I also feel responsible to my children to do all I can to advance what we know about this disease. To show them what it means to fight and not give up and do everything in my power and not come up with excuses about the travel and inconveniences of all this. It’s too important! Having done this now, I can’t imagine not doing this.
I guess the other thing I’m feeling now is more of an identification with FSHD. I’ve been fighting with it and butting heads with it since I got my diagnosis, to the point where I hesitated to try on the FSHD shirt I got for my birthday because it was another way to make this real. And while I realize it’s just a shirt, I felt this hesitation to try it on. Yet now having participated in round one of three of this study, I feel more ready and accepting to wear the FSHD shirt, as well as the label, around my neck. Just realizing that is kind of staggering for me right now. That’s pretty significant in my book.
While answering some of the questions today, I was filled with a mixture of gratitude and fear. The fear came in when reading about these symptoms of FSHD that I don’t have, but fearful I might someday. Then layered with that fear is gratitude that I only have the symptoms I do. So it was quite the juxtaposition for me.
Sometimes I feel that I have it easy with FSHD because of the symptoms I have. I’ve seen the worst-case scenarios and they are terrifying! Yet that doesn’t make me identify with the disease any less. It still makes me feel bad, but then the gratitude kicks in that I only have the symptoms I have and I don’t have anything worse.
There is also a lot of gratitude in me for having my fiancée Brandi here. Not only “here” as in physically sitting next to me on this plane, but as in here with me on this journey through this disease. I don’t know that I’d be flying home from Rochester, NY, having just taken part in a cutting-edge research study on a super rare disease if I didn’t have her. She fills me with strength and confidence that we’ll handle anything life and this disease throw our way. She knows me. She knows how to take care of me. She knows how to support me. She knows how to read me. She knows how to ask good questions. So grateful she’s right here by my side to prop me up when I need it and walk side by side holding my hand when it calls for that too.
Well it’s time to wrap this up. We just passed the skyline of Chicago and we’re about home. Can’t wait to hug my babies. It will be done with a little more love today. And isn’t that what we all want? Isn’t that what we all deserve? I have to remember the why of everything I do right?
Well, the why for me will all be snuggled in their beds tonight with a hug and kiss from their Dad and/or partner along with “I love you.” And they can sleep easy knowing that this man won’t give up and won’t stop fighting and won’t stop seeking answers and won’t stop pushing FSHD forward in any way possible.
Because even the smallest step forward is significant. I don’t take that responsibility lightly. Yes it’s heavy, really heavy, but these diminished shoulders haven’t depleted enough to not bear the weight. I got this. I’m not going to let my family, my community and most importantly myself down.
That’s why.
Please don’t feel alone on donating for research. There are few of us and far between, but I have donated tissue twice to PHD DR. Michael Kyba at University of Minnesota . I was diagnosed in 2012, Dr. Kyba was doing a Dux-4 study when I had to have my muscle biopsy, so I told them to take extra tissue for the study. Also in 2014 when I had my first Scapular Thoracic Fusions with Dr. Anthony in Chicago, I made sure the excised tissue was sent t of Dr. Kyba’s Lab. I would have set it up when I had my,second fusion in June 2015, but he didn’t need it. It’s nice to hear about others donating tissue for research.
Thank you for what you are doing for the FSHD community. Especially thank you for sharing your feelings about your experience. I sill be watching for future posts about your adventure. I wish I had your courage to do as much.