Meet Kaley: Advocate, Coach, Therapist

I am a patient advocate, therapist, and illness recovery coach. But it all started at twelve years old. Remember what it was like to be twelve years old? Middle school, puberty, sleepovers, best friends, and awkward phases… That experience took an abrupt turn for me when four words turned my 12 year-old world upside down. 

It all started when I woke up one morning at my best friend’s house and was too sick to even sit up. I got out of bed and collapsed to the floor. I was sick to my stomach and crawled to the nearest garbage can until someone woke up. My mom came to pick me up and rushed me to the hospital – barely able to get me into the car since my legs would not hold up. My legs felt weak and were tingling all over like they were covered in ants. Once we were in the doctor’s office, my mom discovered that my eyes were jumping right to left, something called nystagmus, which was causing the nausea. 

Over the next two months, my symptoms either worsened or changed daily. I had seen numerous doctors and specialists and had been through a barrage of exams before one doctor was finally able to tell me what was going on. Three months after that first morning, Dr. Myers at UCLA said the four words I will never forget, “You have Multiple Sclerosis.”

As you can imagine, my life changed pretty drastically. I had to start daily injections which I insisted on doing myself so that I could still go to sleepovers and participate in class trips. I missed a ton of school as a result of my symptoms, which were constantly changing. I stopped all physical exercise, which at the time, was standard medical advice (today, thankfully medical advice is quite the opposite). It was hard, to say the least, and a very weird way to grow up. I’ve experienced almost anything you can imagine when it comes to neurological symptoms. 

It was also an amazing way to grow up. Yes, you read that right. When certain physical functions would come back, I would celebrate like crazy. I experienced gratitude more than I ever knew possible…more than some people ever can relate to. I cherished each moment knowing how fragile life is. My family relationships changed and I didn’t let a day pass without telling the people I loved that I loved them. (To be fair, adulthood has worn away at some of that and writing this is a good reminder to get back to the practice!) As a family, our perspective shifted and it wasn’t abnormal for my mom to show up at school out of the blue to take us to Disneyland… because she knew memories suddenly mattered more than grades.

It wasn’t only my family’s perspective that shifted. During a sleepover in 7th grade, my girlfriends shared with me that I was an inspiration to them. It honestly caught me by surprise. I was in my own world through it all, I was in survival mode – seizing life when possible and the rest of the time pretty much just staying in bed. I hadn’t considered what it was like for others to see my life and my struggles. I will forever remember that night. It made me reflect on the meaning behind my illness. I was becoming very spiritual through the process – with my body being different every day, God became my constant. I had already believed that everything happens for a reason and that God would see me through this, but it was only when my friends shared this with me that I began to see the possible purpose in my diagnosis. 

At 13, I began to share my story publicly hoping to inspire others to live their lives to the fullest and to experience gratitude for every blessing, big or small. In high school, my friends and I started our own non-profit organization, Youth Against MS (YAMS), and we raised awareness about MS and raised funds to further research and help patients.

So twelve wasn’t normal for me and neither was high school. I was incredibly blessed to be in a school setting that valued life experience and agreed that it was more important that I was at a speaking event rather than listening to a history lecture. All the while, there were days I couldn’t use my hands or stand for more than five minutes at a time. But, I continued to power through and persevere because I believed in making a difference. I believed that my suffering was worth it if someone else would benefit from my experience. While I don’t regret any of it, I am so glad to say that I no longer believe that. 

I have learned that health and wellness come before everything. As an adult, I spent years learning about the mind/body connection and now, I understand that wellness is about wholeness. It’s about connecting with the deepest parts of myself, putting myself first, regularly processing emotions in a healthy way, and doing what I want and what feels best to me…always. I know I’m not alone when I say that I was a people pleaser, a perfectionist, and most of all, I worried that if I didn’t power through this event or that important occasion right now that I might not get to do so in the future. Now I know that by listening and coming into alignment with myself, the rewards are far beyond that “one event.” I have been living symptom free for ten years thanks to my new perspective and approach. I am not even on medication today. I can travel when I want, say no to plans because I would rather nap or workout or say YES to plans without worrying about the toll it may take on my body. This freedom is better than anything and while I still get to inspire others as a public speaker, more importantly, I get to work with people facing chronic illness to get long-lasting relief from their symptoms through the power of the mind. To be part of someone’s journey to health is sacred and I am so grateful for each part of my path that has given me the gift of my career today. 

It certainly isn’t how I thought I’d be spending my life. Then again, I was told at 12 that I would be in a wheelchair by the end of high school and wouldn’t go to college (not by Dr. Myers, who thankfully is an incredible doctor with amazing bedside manner). Needless to say, I am grateful to be here doing exactly what I’m doing. Every moment I have is a precious gift, every moment with vibrant health feels like a miracle, and every moment I get to help another person is beyond my wildest dreams. 

So this is why I’m here writing on the Sanguine blog as a patient advocate and therapist. It’s why a lot of what I write about focuses more on wellness than illness, and I look forward to continuing to share the science of wellness and the miracle of life with you all. Feel free to learn more about my work and services.  


By Kaley Zeitouni

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