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Singer-Songwriter Jesse Ruben Shares His Story About Beating Lyme Disease & His Inspirational New Anthem, "This Is Why I Need You."

3/30/2016

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If you haven't heard of Jesse Ruben yet, then I am pleased to introduce you to this inspiring artist and fellow Lyme warrior. Jesse is a Philly born singer-songwriter who is now located in NYC and making music that will infuse hope to anyone who is feeling low. His personal journey and fight with Lyme disease inspired an emotional track called "This Is Why I Need You, which it's an anthem that hits on every level. It's a track about finding yourself in the darkest hour and the gratitude that comes with seeing life from a different perspective.

Jesse is currently touring in Germany, but was kind enough to make time for an interview and answering some questions about his experience with Lyme Disease. It sidelined him for 2 years, but then he came back stronger than ever. His story is incredibly inspiring, and I'm so excited to let him share his story & music.

Without further adieu,

C: Can you tell me a bit about your journey with finding a diagnosis for Lyme disease? 
Jesse: Getting my diagnosis was a nightmare. I started not feeling well late in 2012, and after a few months I knew something was really wrong. My fatigue was completely overwhelming. I had a crawling sensation under my skin that never went away. I couldn't breathe (I later found out this was called air hunger), and my brain was clearly effected. My short term memory because really bad. I forgot lyrics to my own songs. I started going from doctor to doctor, and taking all of the normal blood tests. Of course, all of my tests came back negative. I was told I was totally healthy many times. I was sent to a psychiatrist, who diagnosed me with depression and told me I needed to wake up early and take long walks. Meanwhile, I could barely move. 

Eventually, i started doing research online, and found a site that had a list of possible Lyme symptoms. It was the first time I found something that covered everything I was going through. I asked everyone I knew who had ever had Lyme, and found a doctor in New York that specialized in treating people that deal with chronic illness called The Morrison Health Center. I owe them my entire life. 


In the end, it took me more than 9 months and 14 doctors before I got my diagnosis.

C: Wow, what a long journey to finally get some answers! When your learned you had Lyme disease, how did you feel? We're you hopeful, scared, relieved? 
Jesse: I remember when I told my family, they were very relieved. But I knew what was going on in my body, and how bad it was. It was great getting rid of the unknown, but then the work of actually getting healthy again had to start. 

C: I can certainly relate to those mixed feelings, and I'm sure anyone dealing with this illness can too. What was your experience like fighting for your health? 
Jesse: My two years of illness were the most difficult of my entire life. It was so scary, not knowing if I was ever going to get better. Mentally, it was almost unbearable. I started wondering if I deserved it, if I was actually a terrible person. Most of the people in my life were supportive, but after a while, there was a limit to their empathy. After all, I lost 35 pounds. I "looked great", even though I was worried I was going to die. It was hard to maintain those relationships. It was hard to stay positive. It is a very isolating experience, to deal with a chronic illness that most people know nothing about. 

People deal with this situation in their own way, but for me, the best thing to do was put everything on hold. I stopped writing music, touring, or sending e-mails. All of my energy was focused on recovery. I spent most days at the Morrison Center in New York getting treatment. I tried literally everything. Fortunately, after about 18 months, I tried something called The Garcia protocol, a combination of chelation and ozone treatment. Three months of that, and my physical symptoms were gone. It took another 18 months to recover emotionally. 

C: That's certainly a long road you traveled full of ups & downs. Who was your support system? Did you find that those around you had a good understanding about this disease? 
Jesse: Through my doctor's office, I met a group of people around my age who were also dealing with Lyme disease. I don't know if I would've gotten through the experience without them. To have people who completely understood my situation, where I didn't have to prove to them how bad it was, who just got it. Besides them, it was challenging for my friends and family to really appreciate what was happening. 

C: Did you use your music as an outlet to cope? 
Jesse: I did, up to a point. There was a long time where I couldn't pick up my guitar, or if I did, I could barely play. I had trouble focusing, mentally. But since I've been feeling better, music has been a big part of regaining my life back. It is such a huge part of who I am, and how I connect with people. Being able to perform again, or even just listen to music again, has been a huge joy. A lot of the new songs are about that experience. My new single, "This Is Why I Need You", was written as an acknowledgement to my girlfriend and other people close to me who really pulled me through the whole experience. It's been amazing, seeing the reaction people have had to the song. Something that was so personal and difficult for me inspired something that has really resonated. 

C: As a fellow fighter of Lyme disease I know that this experience can give you a greater appreciation for things in life. Do you feel it gave you a new perspective on anything, and how so? 
Jesse: It really really helps to focus on what matters. Being a musician can be very difficult, financially and emotionally. But my worst day as a musician is still better than any day I spent during my illness. I am so grateful for the people I met who helped me through it, I am so grateful for my doctors, who never gave up on me. To be able to wake up in the morning with a clear head, even to do something as simple as going for a walk. That wasn't possible for a long time. I try to enjoy it as much as I can. I also try to reach out to anyone that I find out has Lyme, and remind them that they're not crazy, and that getting better is possible. 

C: Did this experience inspire any new music? 
Jesse: Absolutely. I was always the type to write about the stuff that was going on in my life, so it's no coincidence that my next album is about dealing with difficult things. It's called "A Reply To Violence", and when people hear it, I want them to get that no matter what happens, they are not alone, and that it is going to get better. That is a message that I forgot for a long time, and I think it's important for people to hear. 


C: Can you tell us what is coming up for you in this next chapter of your life? 
Jesse: I'm really excited about the coming year. I'll be in Germany for a month to tour, I'm gonna put out my new EP (A Reply To Violence), and in November I'm planning to run the NYC Marathon and raise money for Lyme research. 

C: Jesse, thank you so much for doing this interview and sharing about your personal journey. Your fight, and seeing how you are flourishing now post-Lyme has given me so much hope. Are there any final thoughts you would like to share?
Jesse: Yes, lastly, to anyone reading this: I'm so sorry you're dealing with Lyme. I know how terrible it can be. You are not a crazy person. Please take care of yourself.

To contact Jesse you can find him on his social platforms here:

Official Site
Instagram
Twitter
Facebook
Soundcloud
Tumblr

To listen to Jesse's new song 'This Is Why I Need You,' the soundcloud track & video are linked below. I hope you guys enjoy it as much as I do!

-Christina

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Circumstances vs. Identity. I Am NOT My Illness, & Neither Are You

3/20/2016

4 Comments

 
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"I am NOT my illness."

Yesterday, as I was casually scrolling along through twitter, I saw a series of tweets which said: "To say I'm not my illness would be untrue. It is a part of me whether I like it or not. The person I am is heavily influenced by my illness." These tweets collectively have over 200 Likes and 'Retweets.' When I saw that it instantly made me feel a deep sadness. I felt sad for the person who believed it enough to tweet it, and then more so when I realized how many people also agreed.

First things first I want to encourage everyone who reads this to not let sadness or darkness take you down a path where you ever believe that your illness defines you, or is you. It's simply not true. That kind of mindset is damaging, and the more its reinforced the more your mind & body will believe it.

My illness has no bearing or influence on the person I am. Let me explain...

When I was born into this world I was already a unique individual human being. Then as I grew up I developed so many  different personality traits that collectively became "Christina." I became who I am today by the hobbies I liked, the qualities I possessed, and the moral compass that was instilled in me, among so many other things. The friends who knew me "pre-illness," know I am still the exact same person today. When I get to catch up with some of my oldest friends we do not sit around talking about my illness for hours. We pick back up right where we left off and laugh and talk for hours about absolutely everything. Nothing has changed in regards to who I am at my very core.

Sure my life has changed since I got sick, I will absolutely admit to that. But those are my circumstances, that's not ME. And there is a huge difference there. My circumstances don't enable me to grab brunch with my girlfriends every Saturday afternoon, but I still love brunch just as much now as I did a few years ago. My circumstances may stop me from getting to see my friends sometimes, or the visits are cut short if symptoms hit, but I still love catching up about all our shared interests just as much now as I did a few years ago. My circumstances may prevent me from attending my alumni's  college basketball games in person, but I still love to watch them on TV whenever I can now just as much as I did a few years ago. You get the idea here, right? Maybe I can't eat Taco Bell at 4am anymore or have a spontaneous vacation with my friends, but those are just my circumstances. It doesn't change the fact that if I could I would go do those very things I used to do. Because at my core I am still ME.

Circumstances do not need to become who you are. Don't ever let them. Don't let your illness fool you into thinking that you are less than or undeserving of living a life filled with hope. And most importantly, don't let anyone or anything anchor your illness onto you like a weight which drags you down and convinces you that you can't exist without it. It isn't an identity to be ill, it's just the circumstance that life dealt. It's not an ideal circumstance, but we all have our unique paths in life that we travel, and sometimes illness is just one of them.

Did being sick change my worldview? Yes it did. Did it change my priorities in life, or what I take time to cherish? Yes it has. I have learned a lot along the way, and I continue to learn a lot. Some of it good, some of it bad. But the things I have learned or the ways I have grown are just that... growth. We all grow as we age and take different paths in life. But growth also doesn't equal taking on an identity of an illness or "changing." It just means that you take stock of your life and you morph with your newly learned life lessons. I'm not the same version of myself today as I was in high school because I matured. But one of my best friends today is from high school, and although we both grew throughout the 12+ years of life's journey we are just as close today as we were then. Why? Because we had a bond much deeper than our circumstances, and what was left when life got chaotic and crazy was our initial friendship which was based on who we are as individuals at our core. It's really just that simple.

I know that being sick can get come with a need to vent, or moments of frustration. I also know that being sick can come with times where friends might leave, or family members become undependable. Lots of things do happen with an illness that can leave a person feeling bitter and hurt. It's easy to get pulled into the mentality of letting that illness consume you. You may even feel a sensation of, "It's me and this illness against the world!" especially if you are alone on this journey because the people you loved bailed. But even on the darkest days when you spend every single second managing pain and talking to yourself to cope, it still doesn't define you. Even if weeks and months pass and you have been in too much pain to do anything other than lie there and manage it, and take pills, and see Doctors, and it feels like that has become so much of your life that becomes you, just know that it's NOT. Those are your circumstances. It is not who YOU are. It will never be who you are. You are not your illness, and it does not define you. Ever. It might mold you, and it might teach you, but never let it steal away your beautiful, unique, special identity. You were created perfectly, and nothing can ever change that.

xoxo,
Christina



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This Is What Neurological Lyme Disease Does To The Brain 

3/3/2016

85 Comments

 
Sleep is so vital to healing and so vital for the body to work properly. It's also an escape from the pain and struggles of each day, and a place where for a brief period I feel nothing. The irony so often with a chronic illness is that sleep is also the hardest thing to come by. You would think that it's just a given if you're tired, you sleep. But so often that just isn't so simple. Most often insomnia creeps in, due to an issue with the adrenal glands & hormonal systems which are disrupted with many chronic illnesses. Other times it's painsomnia, which is the inability to sleep due to pain. And the last category, which applies in my case now, is the inability to get rest because my brain just won't let me.

I talk about a lot on my blog, and I'm always really open about everything I experience. But sometimes I'm not, and it's because some symptoms I can't fully understand. For many years I have been dealing in varying capacities with what I loving call "Neuro wake-ups." It's a sweet way of saying frontal lobe seizure, but I hate the "S" word. I don't like to throw it around out there into the universe, because it's an intense word and it has such a polarizing feel. I guess a part of me just thinks it carries a stigma and I don't want to go down that road by attaching it to myself. Denial? Fear? Perhaps both. But that's besides the point, because it's what is happening. These occur at night when I fall asleep, but sadly they don't occur without my knowledge. I wake up to them and very much live through them.

These "neuro wake ups" vary in intensity from night to night, but overall as the years go by they have gotten much worse. I can't seem to find a link to it, there is no rhyme or reason for it. Some nights I won't have any episodes, and other nights I will have them all night long (10-20). Some nights they are very minor, other nights they hit very intense. Some nights they will stop happening after 3:00 A.M, and other nights they will continue on until 10:00 A.M. The point is, lately my nights have been the true definition of what most people call a nightmare. I average about 3-4 hours of sleep a night if I'm lucky, and that's only in the morning/afternoon. It takes a toll on my brain as well; these "episodes" leave me feeling very groggy the next day. I can't read, write coherent sentences, or get my thoughts out like I wish I could. It's like someone stuffed my brain with cotton. Alas, my blog has suffered greatly as well as my ability to respond to emails. I often document my episodes in journal entries, and after much though and deliberation I decided to share some of my inner-most entries describing various neurological episodes I've had over the course of the last month. I searched for years to find someone else out there who experiences what I experience and HOW I experience it, to no avail. Because my episodes present so oddly, I always felt like an outsider that no one could help. Traditional methods of treatment do nothing for me. It's my only hope that by sharing this, although it's kind of dark, that someone may read this one day and not feel so alone.

Journal Entry, February 3, 2016 - 4:13 A.M
I lie here begging for sleep. My brain feels like someone ran a cord from a faulty outlet into my brain stem, and it's misfiring, sending zapping shocks. I am utterly exhausted, but when I shut my eyes and fall asleep I get hit with waves of jolts and brain zaps. The zap starts in the frontal cortex and I feel it spread through my brain and trickle down to my stomach where a contraction starts up and I feel simultaneously like I will be sick and if I am gasping for air. All while I'm partially paralyzed and partially flailing my arms to try to breathe. My heart rate shoots up, I'm dry heaving, and as the feeling slowly passes my body trembles and I'm drenched from night sweats. Eventually this all eases, and I am exhausted. Right now, I am exhausted. It's unrelenting. No amount of exhaustion can bypass them. No amount of distraction or deep breathing can suppress them. I know when I go back to sleep it will strike again... this was the 3rd attack of the night. I want to sleep, but what do I do when I know sleep is a scary place?

Journal Entry, February 27, 2016: 5:40 A.M
My brain felt weird. I was still awake when I got dizzy, and then the front of my head got weird, like it was tingly & frontal cortex had a pressure on it. I tried to get to sleep but I woke up at 4:45 gasping for air and not knowing where I am, lots of nausea, and very confused. I panicked. I knocked over my water trying to get help. When I finally got my bearings I was covered in sweat, my heart rate was up to 140, and I was scared. I am still scared. I didn't recognize my own room, and that freaks me out. It feels like someone took my brain captive and is playing a cruel game of tug of war. I desperately long for sleep...

Journal Entry, March 1, 2016: 6:30 A.M
I never want to experience that again. I don't know what it was, but I don't want to have to ever feel it. I laid down to sleep rather early tonight, and awoke to my usual frontal lobe seizure, full of gasping for air, heart rate spike, dry heaves, panic, sweats, etc. But this time, something was very different afterwards. I was awake, but half of my brain was asleep. I can only describe it as, half of my brain was awake, and half was not awake. It was a terrifying state to be in. I got up and walked around, I drank a glass of water, but this disassociated out of body feeling persisted. I could not snap out of it. But when I tried to go back to a full sleep my brain wouldn't let me do that either, triggering frontal lobe attacks each time I tried. I was trapped in this bizarre existence where I couldn't wake up my brain. Eventually, after more than an hour of this cycle I managed to fall into a deep sleep, and this time when I awoke I awoke fully. But my frontal lobe felt very strange... like it was being tickled by a feather in the inside. It still feels that way. When I relax I feel like I am fainting, even though I am lying flat... Sleep for tonight eludes me.

_____________________________________________________________________________________________________________________


I put all of my faith in God's hands, always. But I am human, and I find myself stumbling when worries and thoughts consume me. It feels like my waking life is full of pain & the only escape I have from it with sleep is also full of pain. I waver with worry on some days, wondering if anyone will ever be able to fix my brain, and repair the damage that the Lyme disease has done to it. Can it be reversed? It truly feels sometimes like my brain is not my own, and it's a scary sensation to come to grips with. I know this post was a bit "darker" than most, but I didn't want to continue with silence on my blog. I felt like it was time to open up about this topic, and put my fears aside.

xoxo,
Christina

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