I love my twin brother James more than I can put into words. Being a sibling to someone with a disability has been so incredibly eye-opening. It’s been a roller coaster sometimes. I know I am just as important to him as he is to me, and our relationship supports us both.
As kids, we were the "dynamic duo.” We tackled every new experience together – from school to soccer to Boy Scouts and more. We shared a room until high school, and only stopped because he snored so much! I remember knowing that James was a little different, in his own way, but I didn’t think much of it when we were little.
In 3rd grade, James went to a school for kids with learning and other disabilities. I missed having him at my school, but at home, we were still so close. After school, we watched TV and snuck around being “secret agents.” And in the summer, we had a lemonade stand and all sorts of other adventures.
Two years later, something big happened that started us on a new path—one we’re still on. James and I were playing a game and he hit me. I got angry and yelled at him. Then, all of a sudden, he started acting strange, repeating a made-up word over and over again and getting really excited. My parents and I had no idea what was happening. I was terrified and thinking, “Did I do this?”
In the emergency room, I learned that James had had a seizure for the first time.
My parents stayed with him until the doctors could get it under control late that night. James had more doctors’ appointments—sometimes with specialists that were hours away—to try to figure out what was going on with him. For awhile it was a mystery, and the doctors couldn’t agree. Eventually, James was diagnosed with epilepsy. As a 9-year-old, I understood his condition to mean that he would run around the house saying silly and bizarre things, not knowing what he was doing. It was like he lost all of his common sense sometimes.
When he would have a seizure, my sister and I would go into another room and lock the door. We didn’t know what he might do. I knew James didn’t normally act this way, and I knew it wasn’t his fault, but it was scary to see him out of control like that. What happened to my best pal in the whole entire world? Why did James have seizures but other kids didn’t?
My parents and the doctors did help get James’ seizures under control. He had a surgery where they put a device in him that would make the seizure go away right before it really got going. He would still have seizures, but now he was able to snap out of them faster.
A few years later, I was so excited when James and I were back at the same school. The dynamic duo could tackle middle school together! I remember James wearing his favorite basketball warm-up jacket religiously for those 2 years. I knew James would have accommodations and that he wouldn’t be in my classes, but I didn’t care. I was happy to know we were both in those same hallways, going to our lockers, meeting other kids, and riding home together. James even had a girlfriend. I could tell that he liked it there. I remember one time where he had a test on the 13 colonies and had to label them on a map. He and my dad practiced every day for a week, and James ended up with a 100 on the test! I couldn’t have been more proud to be his brother! Moments like that stand out for me and make all of the struggle and heartache worth it.
High school was a different story.
We started at the same school, but they couldn’t give James the accommodations and care that he was supposed to get. He had severe learning disabilities and issues with cognitive (brain) development. I couldn’t believe that the school district we had gone to all our lives would deny my brother his education! I was furious at all of the grown-ups who couldn’t get this right. It was a big road block for my family, but we didn’t give up. My parents found a private school nearby where James could go for testing to see if it might be the right place for him.
James’ stress and anxiety during all of that testing and the confusion over where he would go to high school was just too much for him. It triggered his first psychotic break, eventually leading to his diagnosis of a serious mental health condition called schizophrenia. I was devastated. Hadn’t James been through enough already? In the days after this happened, James was really paranoid (scared) that the police would come to our house. I would tell him that the police were not coming and that I was always going to be there for him during scary and confusing times like this.
I knew deep down that life would never be the same for James (or for me), but I remember pretending that this wasn’t happening. If I just ignored it, maybe everything would go back to normal. Maybe it was something like a bad flu and he would just get better. I couldn’t think of James as a different person; at his core, he was still just my twin brother. The way he kept talking to himself under his breath and staring off into space annoyed me. Even though I knew he couldn’t help it, I just wished he would stop and act like he used to.
The world doesn’t completely understand something like schizophrenia either. There are so many negative attitudes and strong emotions about it out there. It finally helped me to learn about the condition from a scientific standpoint: James has too much activity in his brain.
James and I are young adults now. I’m not going to give up on my brother’s hopes and dreams, but I am honest with myself about what might or might not be possible. Over the past years, I have seen my brother take strides down the path to greater wellness. He has tried things outside of his comfort level, like staying a little longer at a noisy restaurant or being away from the house for stretches at a time. Even a few months ago, I didn’t think these things were possible. But James is determined and has a strong will to do the things that are important to him, so I don’t think there’s any limit on what he can achieve! He just reaches his goals in his own way.
I am so proud of him, but I feel guilty or sad, too, whenever I come to a great milestone in my life. When I graduated from high school, for example, I was happy about my accomplishments. But I couldn’t feel completely happy because James wasn’t graduating with me. The plan was, we were supposed to go through life together, two peas in a pod.
But then the sadness fades away when James reaches a goal in his own life. Like eating at a restaurant with other people for 15 minutes longer than he could before or buying things in the store on his own. Those might sound small to other people, but those are our Super Bowl wins. It’s not about what James could or should have been, it’s what he is.
These wins keep me hopeful that there will be more and more. They add up to James being leaps and bounds from where he was when he was first diagnosed.
To cope with my roller coaster of emotions, sometimes I find it’s really helpful to talk to someone – a friend, a counselor. Maybe they don’t know exactly what I’m going through, but they can listen and try to understand. By letting some of those feelings and stresses out, I feel less anxious. Sometimes I feel I’m the only one on the planet dealing with the problems James has, but I have to remember that I’m not alone. There are people who spend every minute of every day trying to help me and James live the fullest and most normal life possible.
I also have to remember to have “me” time. Helping to care for James can be stressful and exhausting. It really helps to have a good support group of family and friends who understand and who can jump in to give me and my parents and a break. James does worry about my safety whenever I leave the house, but it helps him a lot if I always tell him where I’m going and if I call when I get there. My parents, siblings, and I are one of the most important things in James’ daily life.
The fact that I am so important to him is really motivating for me. It makes the harder times seem worth it, no question. I recently found out about a karate class for young adults with disabilities on this very website, and James decided to try it out. He had the biggest smile on his face when he came home! And I got a smile to match, knowing that I found an activity that he loves to fill one of his days of the week. Seeing how happy he was made me even more determined to help him more.
I also know that James is most happy when he’s around the people he loves. From watching a favorite movie or TV show, going out to lunch just the 2 of us, or simply talking about how his day was like we did as little kids seems simple. But it can be the highlight of his day, and he simply can’t imagine life without me.
I will never give up hope. Some days James makes progress, and some days his worst symptoms come roaring back. It’s a miracle to me that given time and the right adjustments with medication, the chatter in his head goes down. His old personality is slowly coming back. I am sometimes amazed at the things he can remember from when we were growing up. The brain is very resilient and can keep memories even during this assault.
Life can throw you huge curveballs, ones that might keep you stuck in your tracks. But James and I are not going to let that happen.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.