I am 26 years old and have suffered from KLS for more than 10 years. I experienced multiple episodes a year at the age of 15, then an episode every two years, and recently had a lighter episode: I feel that there is light at the end of the tunnel. I’m making a successful life for my family with no looking back.
In December of 2019, I reached a major milestone, especially for someone living with KLS: I graduated from college.
I fought so hard: After getting my associate degree, I started at a four-year college. But then I dropped out because managing my KLS episodes was hugely daunting, especially considering I had my first baby.
I ended up going back to school when my son was two and finished my last two years of college episode free. I honestly never thought that could happen.
After I graduated, I was so proud of myself and was enjoying being a new parent. But little did I know, an episode was right around the corner. After two years, I slid into a KLS episode that came on so suddenly and was absolutely devastating.
This episode was different than what I’d previously experienced. I grasped the fact that I was in an episode more than I did before and felt more aware of my “sick” self.
After that episode, I was determined to stay healthy. I felt like I had come so far and was happy about progressing from having episodes every few months to every few years. So, I started working out every morning and felt like that had a big impact on my health. I also believe parenting made my mind much stronger and I know it made me want to push through and keep moving forward.
I stayed healthy for almost two years. I decided on a career path, did all my training and now can proudly say I am a licensed realtor in Louisiana! That has always been my dream, and I’m so happy that I finally accomplished it. I passed all my tests and became licensed in January 2022.
Not long at all after I received my real estate license, I experienced several major life events: I found out I was pregnant with my second child, lost my grandmother, and went into another episode.
I have to say that this most recent episode was like no other I had experienced. I was much more alert, and I could do things that I normally couldn’t do in an episode. I didn’t sleep as much as usual. I recall much more from this last episode than ever before. It was more controllable, and just easier to navigate through life.
However, the episode was also much longer than usual. I usually am out of it for a solid 10 days and then start recovering. Since I was so used to that time frame, I expected to be done with this one after 10 days. I hit the 12-14 day mark and told myself I should be okay. I told myself and everyone around me that I was back to normal, and I really believed it.
But two weeks later I was still not back to myself. Although I was acting like myself, I was only about 80-percent back. I was driving, I was talking, I was doing things to make myself and others think I was okay. I remember my significant other saying “let’s take a nap” one day and I lost it. I said “NO, I cannot lay in this bed ANY LONGER!” I knew at that moment that I was coming back to myself. I started calling everyone who knows about my KLS and asking, “Oh my goodness it has been a whole month, what has happened?!”
I am very, very thankful that my episodes are getting much lighter and I pray this I am nearing the end of my KLS journey.
I will continue to grow in life and never ever let KLS define me. I have accomplished things I didn’t think were possible.
I hope that everyone suffering from KLS understands that you are so much stronger than you think you are. This disease will never be who you are, and it can’t stop you from your dreams, no matter what.
I am thankful for God, most of all. But I’m also very thankful for the people in the KLS Foundation’s Facebook support group because I have made true friends. I can reach out to them when I’m sick and they understand. It’s so meaningful to have people on your side who understand what you’re going through.
I know it is hard to see the positive of KLS especially while you are sick, but I am here to say that if I can keep moving forward, so can you!
Spreading love and light forever and always to my KLS family. I wish you all well and send hope that absolutely everyone who suffers from KLS can overcome it. Do not give up!