“KLS NEED NOT DICTATE OR DEFINE YOUR LIFE”
Dani Farber, a 32-year old trader from Manhattan and board member of the KLS Foundation, has been episode-free since March 2004. He wants to share a message of hope to all KLS sufferers, and that is: KLS does end, and in the meantime, you shouldn’t let it stop you from pursuing your dreams.
My first KLS episode struck in February 1995, just before my 16th birthday. I was in my sophomore year of high school. Unlike some KLS patients who suffer from KLS for months or years without knowing what is wrong, I was fortunate to receive an accurate diagnosis of KLS following my second episode. This was in part because I grew up in the Boston area, which has some of the best hospitals in the world, but also because my father is professionally connected to the medical community in Boston and was able to get me seen by top neurologists.
My early episodes were characterized by excessive sleep – up to 22 hours a day. During the brief moments when I was awake while in an episode, I knew something was very wrong. I felt frighteningly “off”. Everything around me seemed surreal, as if the events I was seeing and hearing weren’t really happening. Everyday tasks became huge challenges: even little things like having a conversation with someone, reading a book or watching TV became difficult. I longed to feel like my old self again, but I just couldn’t shake the disorienting feeling that things weren’t right. The mind-altering experience was terribly scary and no matter how hard I tried, I couldn’t control it or make it stop.
My first few episodes each lasted about two weeks, and then I’d be well for only a few weeks before falling sick again. As the years passed, the KLS took on a different pattern; I had lengthier periods of health in between episodes, but the episodes themselves were also longer. My longest episode lasted four months, beginning in the summer of 2000, when I was 21 years old. Those four hellish months were broken up into eight more typical 2-week episodes, but I would feel better for only one day before falling into the next 2-week episode.
KLS is isolating but I never felt lonely
Aside from my sister who also suffers from KLS, my family and friends and the people around me couldn’t understood what KLS episodes felt like for me. Unless one actually has KLS, it is nearly impossible to understand the very unique sensation of being in a KLS episode. It’s like to trying to understand what it feels like to sneeze or be under water for someone who has never experienced those sensations.
Having said that, I must say that I had – and still have – an extremely supportive and caring network. My family and friends certainly did try to understand what I was going through and empathized with the fact that I was experiencing something very difficult. This did give me some comfort, and even though KLS is a very isolating illness, I didn’t once feel like I was alone in it.
It feels great to be episode-free
All together I have experienced seventeen KLS episodes – twelve in high school, four in college, and one after graduating. My last episode was in March 2004, when I was 25 years old.
One thing KLS took away from me in high school and college was my ability to pursue extracurricular activities. While my friends were participating in clubs, sports and campus organizations, I was constantly struggling to make up all the schoolwork I missed during each episode. This didn’t deter me from pursuing my interests and passions, though. I had to give up some of my favorite activities like competitive soccer and lacrosse, but years later, sports and exercise are still a huge part of my life. Every time I go for a run or a bike ride now, I feel lucky, because I remember when I couldn’t freely participate. Last year, I completed my first marathon and my first triathlon, and my next goal is to complete a Half Ironman triathlon.
KLS also had a strong impact on my academic life in high school and college. Prior to falling ill, I was an honor student. My struggle with KLS forced me to abandon the honors track so that I could, the days I was healthy, make up for all of the work I missed while I was sick. I still managed to do well in school and attended the University of Maryland for my undergraduate degree. Even though I loved my time there, I felt that I had missed my shot at a more prestigious university because I had been sick so many times in high school. Instead of letting this disappointment make me bitter, I worked hard in college, graduated with honors, and continued to set my sights high. In 2006, after working and being well for three years, I took my GMATs and applied to Columbia University’s MBA program. I was accepted and finally got to attend a program of the highest caliber and study at an Ivy League school; the experience I had missed out on years earlier.
Eight and a half years after my last episode, my doctors believe that KLS is behind me for good, however there are no tests to confirm when KLS disappears. The doctors only know as much as what’s suggested in the literature they read – that KLS strikes adolescents and young people, and “grows out” as the patients reach their mid- to late 20s.
What my life is like now
I’d say my life is pretty “normal” these days, in that there are no limits to what I can do. I married a wonderful woman, who never knew me when I was going through KLS episodes, but that doesn’t’ matter because she understands me better than anyone else. We have an eight-month-old son, Brody. I’m still quite particular about the amount of sleep I get each night – since sleep deprivation has been documented to bring on KLS episodes – so I try for the recommended seven to eight hours.
If you’re battling KLS now, I want to tell you that it does end. It is a very hard illness, by far the toughest thing I’ve ever faced, and hopefully the toughest thing I will ever have to face. The disorder could have steered me off course, and in fact it tried to, again and again. But after each episode, I worked hard to catch up in the classroom and on the athletic field and to reconnect with my friends and community, in order to regain my place in the world. I always embraced life no matter how many times KLS knocked me down. I resolved to have a successful life in spite of my illness, and I know that you can do the same.
My “battle plan” against KLS
I took a two-pronged approach to my struggle with KLS – one that was short-term-oriented and one that was long-term-oriented. In the short term, when I was getting sick repeatedly, I was very frustrated at the disruption in my life. My focus was on finding the strength to navigate through this very challenging period – something no teenager should be forced to face. When I was a teenager, it wasn’t comforting when doctors told me that I would one day grow out of KLS. However, I didn’t lose sight of this long-term message either – I held on to the belief the KLS would one day be behind me as the core of my long-term approach to KLS.
Basically, when I was a teenager I envisioned the way I wanted my life to be at age 30 as if I had never fallen sick with KLS; and then asked myself how I could put myself in a position to still achieve that vision despite having KLS. It took resiliency, determination, hard work, organization and planning, but I made it happen in the end.
In short, I know KLS influenced me in many ways, but I wasn’t going to let it dictate or define my life.
What KLS has taught me
There have been a handful of positives results from dealing with serious illness at too young an age. KLS has shaped me in so many ways, and not all of them have been negative. Emerging from a decade of life-altering illness turned me into someone who now makes the most of each waking moment. It was given me the attitude that I shouldn’t expect anything, but need to go and make things happen. It has given me a level of confidence that I can face tough challenges, and it has given me a certain perspective and toughness that is different. I am less worried than most people about problems that seem small in comparison to living with KLS.
As a board member for the KLS Foundation, I’m still intimately connected to KLS and think about KLS often. However, as the years have passed since my last episode, my connection has evolved – I feel less emotionally charged about my own struggle with KLS. When I was still getting sick frequently, the only thing that rivaled the torment of living with KLS was talking about it, so I never did. The years and the distance have enabled some of that rawness to fade and allowed me to work with the Foundation, and I am proud that I can do my small part to help others who are living with KLS.
I live my life as if KLS will not strike again. Of course, no one can predict what tomorrow will bring, but the passage of time since my last episode has made it a lot easier to live a normal life under the assumption that it will not reappear. If KLS did strike again, I would deal with that unfortunate circumstance at that time. But, I spend very little time thinking about that “what if”, because that would only conjure frightening and unpleasant feelings, which I naturally try to avoid. All that matters is this present moment, so I focus on living and enjoying the “now”, while I’ve got it.
Article By: Alanna Wong Life