By Carly Weisman, HA Volunteer
My name is Carly, I’m 22 years old and living with hydrocephalus. I’ve dealt with 14 shunt revisions since my shunt was originally placed in January of 1999 at 4 months old. From 2015 to 2020, I suffered from continuous shunt malfunctions. During this time, I was in high school, then started college and got my first job. I struggled with needing to please everyone as well as stressed out about the possibility of losing my job because of my hospitalizations and surgeries. Also, I was mentally over dealing with surgery after surgery and got to a point where I felt I couldn’t do it anymore. I started seeing a therapist which is when I learned that it’s important to share what you’re feeling and not to hold it all inside. Sharing what I was feeling helped a lot and meeting others who understood what I was going through helped as well. Let me review how I managed all this in the face of having multiple surgeries, sometimes back to back:
In 2015, while I was at the end of my junior year and beginning of my senior year of high school, I dealt with having my third, fourth, fifth, and sixth, seventh, and eighth shunt revisions all within six months. I’m someone who stresses about getting good grades and did not want to have any missing assignments. I needed to get back into my routine and back to school, so in the week between my fifth and sixth revisions, I went back to school. The next day I ended up having another shunt malfunction which led to my sixth revision. I knew I rushed back to school too soon, but I just needed to get back to my “normal”. While I was in the hospital during my seventh and eighth revisions, I was emailing my guidance counselor from my hospital bed, worried about missing assignments. Meanwhile, I had just endured yet another brain surgery. At the end of my senior year, I was Student of the Month in June. It was my guidance counselor who nominated me because of my perseverance through all that I had endured throughout the school year.
In 2018, when I had my 10th revision I was in my second year of college and I had just started a new job working in the admissions office at my school. While I was in the hospital, I was getting so upset and afraid that I was going to lose my job because of my hospitalizations and surgery. When I spoke to my supervisor and explained the situation, she was very understanding and told me that everything would still be there when I got back. Since I was in college, I ended up deciding to drop the classes I was taking because I didn’t want to have the stress of healing from surgery while dealing with my classes.
In 2020, when I had just gotten a new job working in the hospital caring for patients, I dealt with my 13th revision. I was so frustrated and upset because I had just started this new job that I loved and I didn’t want to lose it. Again, I explained everything to my boss and she was very understanding. I also had the FMLA to protect me from losing my job because of a hospitalization. I was still in college but I had the revision and got out of the hospital a week before classes started.
After dealing with 10 surgeries within a two-year time span from 2015 to 2016, I reached my breaking point. I was mentally and physically done with dealing with everything. I’m not a person who talks about my feelings, so when my mom suggested I see a therapist I was very much against it but I did it anyway. I’m so glad I did it because I got lucky with an amazing therapist who I clicked with right away. When I have moments where I’m having a hard time I know that she is just a phone call away.
Now I want to backtrack to 2015, after I had my third to eighth revisions I felt so alone, and at that time we didn’t have a Community Network in NJ. Since we didn’t have in New Jersey I went to New York City for the Hydrocephalus Association's Community Network meetings and they were great! It felt so good to be with people who understood what I dealt with. After I went to the Community Network meeting in New York City, I decided to be the one who started the community network for New Jersey. I longed for connections with other hydrocephalus patients, and I knew there had to be others who felt the same way. Another connection I made was while working at my job on my college campus. I was wearing a hydrocephalus sweatshirt and my boss asked what it was, so I told her. As this was happening, one of my coworkers was listening and I found out that her son has hydrocephalus. From then on we grew closer because we had that connection. When I had my 10th and 12th revisions that coworker came to visit me in the hospital. Connections are everything!
My most important take away about what it means to balance parts of your life along with hydrocephalus, is that it takes making mistakes and people telling you that it’s going to be okay to stay upright. You can’t rush your healing process and you have to take time for yourself. School will always be there and work too. Just know you have laws that protect you from losing your job because of a health issue. If you’re struggling with dealing with any situation, don’t battle it by yourself, find someone to talk to, because it makes all the difference. Also, make connections anywhere you go because you never know who around you has hydrocephalus or knows someone who does. I’ve always been told that “Slow and steady wins the race”. Sometimes it’s hard to believe that to be true, but everything happens for a reason, and the pace at which you move through life does not define you. It is all part of your journey.