World premiere of Jesse Ruben’s “You are not alone anymore”
New York-based singer/songwriter Jesse Ruben’s career was once sidelined for two and a half years due to a debilitating case of Lyme disease.
As he recently wrote on Facebook:
“Sometimes I write songs because I want to, and sometimes I write songs because I have to. Sometimes, they’re not for other people, just for me, to help me process and deal with something challenging.
“This song, ‘You’re Not Alone Anymore,’ was written during and right after my battle with Lyme. About how scared and angry I was. About how isolating it can be. I never intended to play it for anyone. But Jen Jacob and I were invited to perform/speak at Something Inside So Strong, a Lyme Disease conference in Amsterdam recently. And in a room full of people who would understand, I decided at the last minute to play it. I’m so glad I did.”
We’re glad he did, too! Have a listen, and then tell us what you think about it in the comments section.
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TRUTH
Thanks for keeping up the fight along with the rest of us!!!
So very real!!!
Makes me Cry! So sad so true! Why does this have to be so hard to explain ! And the loneliness ! Mother of Daughter with Lyme. Where r the Friends I ask??!!
The neurological manifestations were worse at night…I remember feeling so alone particularly at those times when they would jerk me out of sleep : fasciculations and burning pains and icy white lightening pains (for want of a better way to describe them) and a myriad of other sensations. . … . I do recall feeling that my bones were on fire at times as he says in the song.
It made me cry, as I sit here, still fighting for hope after 8 years!
Instant tears and gratitude. Thank you Jesse for honoring the experience that too many of us feel.
Thank you, Jesse, for sharing your story through song. My wife is in the third year of a relapse – the last two years bed-ridden.
I couldn’t have explained any better!!! I feel as though I am suffering alone at night!! Thank you for those real words to a disease!!
Losing years, yes. And the worst part definitely is when docs dont believe you. Probably true for many kinds of chronic illness…great song
Bravo Jesse. You are shedding light on things. Thank you for sharing.
Yes on fire and no fire department to put it out. This song is so fitting.
Finally, more of us are speaking (or singing ?) about our lives suffering with Lyme….this, along with ALL OF us sharing our stories, will bring this hideous disease to the world – which will help all of us get proper testing and treatment. Thank you, Jesse ?
“SHE” IS ME! AND I KNOW NOW I AM NOT ALONE ANYMORE! LOVE THE SONG THE STORY BEHIND THE SONG AND THE FEELING OF HOPE THAT THE SONG BRINGS!
Made me cry , so true.
Thank you, thank you, thank you! That song puts to words much of the last 16 years of my life. May a cure be found so that no one else has to suffer like this.
Very well done. This song hit home for me and the tears streamed as I listened to it.
Thank-you Jesse. This song spoke to my heart and made me cry. It could not describe the experience of living with lyme disease any better. Yes, I live in a dark room and pray everyday for the cranial nerve pain (trigeminal) to go away. And yes people think I’m faking because I can walk and talk like everybody else. The invisability of this disease is the hardest part.
dark room AND eye mask. the sheer movement of shadows and light can be painful. thank you jesse for sharing.
Beautiful, hit me hard. Especially the part where we are looked at as selfish fakers…if they had any idea, wow! Thank you for writing this beautiful song and sharing it with us all!
Wow! Powerful words, made me cry. All we go through with this disease is often too much to handle. Hearing a song that expresses into words how we feel is extraordinary.
Glad to hear he is better.
Omg, sobbing. Thank you. It’s beautiful and so true.
You hit it out of the ballpark Jese- I hope everyone I know in NY and Long Island are walking around w/ permethrin on their shoes this summer to protect them selves in one of the most lyme endemic places in the world. Its one excellent defense again tick bites. How many this summer will go there for fun, and take lyme back – not in their suitcases – but in their body to begin the same journey as you did Jesse? Permethrin is easy to buy on line at REI.com – brand on line is Sawyer for about $16 for a large spray bottle delivered to you door — how many lives could that one bottle save this very summer?? I hope others will teach others not yet infected how to be safe, or send bottles to people you care about. Glad you are better! For those out there still in the fight – NEVER NEVER give up, you CAN get well one day.
So beautiful. So true. Thank you for being our voice !! It can be a very lonely disease but with people raising awareness we don’t have to be alone anymore !! ?
Lyme warriors we are!!! ?
I cried….it might be more effective than anything else that is out there for Lyme sufferers. Thanks, Jesse, for sharing. Everyone that knows Chiara, please listen to the song…it might help you understand what she is going through.
So sad and so true. Thank you Jesse ?
God chose you/Jesse to get the message out for us with Lyme / chronic. Your song/words says it all! Thank you for putting it in a words for the WORLD could understand through music.
GOD BLESS All that suffer.Endeavor to Presever. Debbie Stewart/Severe Chronic Lyme Suffer for 10 years debstu5371@yahoo.com
I can so relate! Two tests, both negative, no answers, no treatment, no cure!
Only people with money get help anymore. If you are poor you will suffer. Just like when AIDS hit the streets. We are SCREWED .
Great song, sadly, it describes my Lyme experience exactly!
Your song was amazing thank you God Bless you for sharing all our pain and sorrow
Your song brought tears. Only those of us suffering with it know. Sadly, HHS does mot even list Lymes! Thank you for helping us bring it to the public.
Wow! His song is so true. I’m 64 and have had it for 30 years. It robbed me of my dreams. Enough of this . There are alternative treatments that could work if given a chance and covered by insurance. But,I’m a dreamer so there you are left “alone” again.
My daughter was infected 30 years ago and suffers from chronic lyme..Most doctors are still non believers. They tell her it is all in her mind just as they did when she was 11 and told us she was making it all up even with a positive Lyme test!!! She was infected on Long Island but we live in Nevada. Jesse Rubens song says it all. Why can’t the medical community open there minds and educate themselves?? So frustrating.. She feels so alone and so do I. Thank you Jesse Ruben. Your song is so beautiful and on point. It made me cry. It is the story of her life and so many others.
Thank you for putting our pain into song. Maybe SOMEONE IN POWER WILL HELP OUR CAUSE! So real, I have chronic Lymes. I live in fear of another resurgence. I am a fighter. But fighting Lymes is LONESOME! For years I was told nothing was wrong, that it was all in my head. I also live in fear that because I am 61, that insurance will not cover what I need the next time Lymes resurfaces. Each dr. Visit is many hundreds of dollars. I have good insurance, but they pay less and less each time Lymes resurfaces. Medicare will probably let me die.
I’ve been fighting Lymes for 30 YEARS!!!!
Just listened to Jesse Ruben’s song, then I broke, as a 57yr old man, I wailed and cried… for I have suffered from this ‘Brutal’ and ‘Sly’ Disease for over 2yrs having already surviving a brain hemorrhage 6yrs ago. Following having to relearn how to walk & talk etc. then, after a 5yr battle to be as good as I could be; Something changed. There was a sudden decrease in my physical & mental health, following a sting/bite on my foot which resulted in me being hospitalized due to my leg swelling up and even having a steel rod being removed from my toe, which had previously been fitted 6months previously, which they believed to be the cause of the infection. Anyway, Jesse’s song said it all. But here in Wales UK, NO-ONE… & I MEAN “NO-ONE” has even heard or knows anything about Lyme disease… I therefore find myself fighting yet another battle, of which I have all but lost, and am now too weak to fight anymore.
Your’s Faithfully ~ Mr Steven Ceri Morris.
What a great song ! how can I get a copy of this?
this should be playing on every radio station in the world
thank you so much Jesse for writing something so beautiful about something not so beautiful
I am in my eighth year of being homebound / bedridden
I am glad to hear that you are on the road to recovery
i have tears in my eyes and my heart aches .. so true .. Beautiful song that hits home .. thank you ..
Great song!!
Amazing song and performance!
Get that out there as much as you can!
19 years and now it’s just morphine to relieve the pain and “keep me comfortable” as my doctor said. What he didn’t say was “until you die”. The song makes me sad for all I’ve lost, and yes, I am alone. Not even my family can understand. My friends are gone…..Lyme is a death before death. I am totally, utterly, miserably alone. Lyme took all from me. I hate where I’ve wound up.