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Eryn: Lyme Advocate, Musician, Actor, Artist. 'I'm WORTH Fighting For!!'

3/2/2017

13 Comments

 
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My name is Eryn. I am a 17 year old teenager who has been robbed of my life. In August of 2014, I got a “summer cold” which rapidly developed into a severe debilitating illness. I had been a kid who constantly performed in plays and rarely spent time at home, because I was excitedly living and enjoying life. I am still that person, deep down, but I don’t feel like it anymore.

I am a 17 year old teenager who spends every single day trapped in my bed. I haven’t left the house in 5 months. I can’t go to school, I can’t go out to see friends, I live in constant pain and agony. I cannot walk, I cannot push myself in my manual wheelchair. Most days I struggle just to sit up. I have seizures. I have migraines so bad I have to wear sunglasses in the dark. Yet no doctor’s want to help me.

I am constantly told by medical “professionals” that I am making this up for attention. I am told that I simply need to see a psychiatrist, hang out with friends, and exercise more. What great advice, telling a person who can’t even go to the bathroom on their own that they need to exercise. The medical world has robbed me of my life, shackled my arms to my legs, and thrown me in the ocean and left to drown. Or more literally speaking, thrown in my bed and left to die.

Every single day I am fighting for my life. I am fighting to breathe, fighting to stay alive. It would be so much easier to give up. All the doctors around me have given up already. They gave up without even trying to help. They left me in my room to fend for myself, because apparently they don’t believe that I’m worth fighting for. I am still human. I am a person who lives every day in PAIN. I am SUFFERING. I am DYING. My body is a prison cell that I cannot escape from, and I have been wrongly imprisoned. I have done nothing to deserve this wasted shell of a life. This isn’t a life. No one should be forced to call this hellscape a life.

I urge you, PLEASE help me. PLEASE help me and others like me going through the same thing. I am not alone, I am not the only person fighting this daily, neverending battle. Both my siblings are fighting this disease, my aunt is fighting this disease, my cousin is fighting this disease. Lyme Disease is NOT RARE. It is COMMON and the ignorance from the medical profession is CRIMINAL. Lyme Disease is NOT a fake disease. It is a REAL, DEBILITATING, CHRONIC DISEASE. It is a demon that haunts thousands upon thousands of people every single day. We should not be forced to wait for years for doctors to catch up. We are HUMAN BEINGS and should be treated as such. I should not be forced to live my life this way. No one should."

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13 Comments
Dawn
3/2/2017 12:15:44 pm

I love you so much kiddo. You are the bravest of warriors and that wheelchair, this "lyme life"... IT IS NOT YOUR FATE. We will get you out of this.

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Joanna
3/2/2017 12:23:44 pm

I'm fighting for you Eryn...and for all the others like you and me! Thank you for sharing your story with us and with everyone so that we can open everyones eyes to this horrible disease...together we will make change...much love Joanna

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Carrie link
3/2/2017 02:59:54 pm

My soul bleeds my heart does not beat fully until I can wake up our country
Love and light
Carrie Toronto ON

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April
3/2/2017 12:44:35 pm

Eryn you are so brave and strong. You got this. You will beat Lyme. This is not your future. I love you

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Marnie
3/2/2017 01:04:01 pm

Eryn, you are a beautiful writer. Your words are so powerful - they describe so much of what it is like to have Lyme disease. Your story is so close to ours - I am the mother of a teenager with Lyme. I watched her life slip away as well, also being told that she needed a psychiatrist. I was told she no longer wanted to swim anymore and didn't know how to tell me. We have fought a very hard battle and after an absence from all aspects of life we are coming out on the other side - she is back in the pool!! How I would love to invite the doctors who sent us on our way telling us not to come back! Sending you love and strength - you will get there! Thank you for writing this and putting yourself out there, it shows how courageous you really are. <3

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Bonnie Catterson
3/5/2017 10:43:17 am

Eryn your bravery inspires me to be more brave. It makes me furious that you have to suffer like this. But I have faith that you will find a path to healing. You have a badass team of people who love you and are going to make sure that you get every opportunity to live the life you deserve. Please know that while we don't talk, you are always in my thoughts and an inspiration to me as I suffer in my own hell. I know the loneliness and I know the feeling of hopelessness and loss of control...use your voice however you can. You matter. Your voice matters. You are love. Be gentle with yourself. Much love xoxoxox

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Dawn
3/7/2017 10:42:43 am

We love you, Bonnie . xo

Elizabeth Rogers
3/2/2017 01:27:34 pm

Make no mistake, in spite of what Dr's have said to you or how they've made you feel, YOU ARE IMPORTANT! and YOU DO MATTER! You may think you're alone and feel alone, but you are not. Aside from your mom and family who are fighting for you every day, there are many of us who keep abreast of how you are doing, what you are doing. We celebrate when we see your smile on your Birthday. We celebrate with you as you whiz around in your new wheelchair and while we mourn the happy and lively child you once were, we celebrate the fighter you have become. I haven't met you yet, but when I come out west in the next year or two, I shall make it a point to come for a visit and at that time, we will celebrate a new, I'll always be there for you, friendship. Hugs 'n stuff! Liz

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Sue
3/2/2017 01:45:57 pm

Eryn, you are worth fighting for. Your story, your suffering, your pain, your isolation. You are brave and strong. You are speaking out for others who have no voice and fight in silence. Don't give up. I believe you, I love you and I love your mom - she is incredible too. We will continue pushing together with hope, renewed courage and faith. Much love.

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Marilyn link
3/2/2017 03:26:57 pm

Eryn, i love your post - you tell it exactly how it is. Good for you for speaking out and putting your story out there. It's not easy to share our suffering and vulnerabilities. My heart goes out to you - I am a 35 year old Lyme sufferer and I feel like my life has been robbed - but then i see someone as young as you suffering worse than I am and that is truly being robbed of life. Someone so young and on the brink of coming into their own should not be afflicted with this horrible illness. And it is heinous that no one in the medical community is helping you fight and regain your health. Those of us who are more able bodied will continue to carry the Lyme torch as far as we are able. There are so many of us fighting for you and for everyone suffering with Lyme. Sending you strength and peace - hang in there girl! I will be thinking of you <3

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Rose Lazzara link
3/2/2017 03:36:57 pm

Eryn your letter brought tears ! It is similar to my son's journey and many young ones being robbed of their life . We are all in this together it's time for change many have been waiting for years suffering in silence being denied medical attention it's so unfair your VOICE will be heard ! It's only a matter of time hang in there ❤️

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Dottie McEachern
3/3/2017 08:27:46 am

Bless you Eryn you are way to young to be robbed of your life in this manner and the Doctors suck believe you me I know what they say when they are not smart enough to do anything medical for you. Please keep fighting you have a beautiful soul that they cannot tore down. Huge Hug to you sweet heart.

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Jeanette Pongratz-Doyle
3/3/2017 09:10:59 am

Howdy Freeze Flame.......

I have come to terms with, we all have a purpose in this life. It took me 40 years to figure out what my purpose in life was but I did and what that boiled down to, is that I am an advocate for those without a voice. I am advocating for you right now in supporting you. Sometimes it takes years to figure out what our purpose is and some never figure it out. Granted there are days when you just shake your head and say.... “what did I do that I have to be the purpose for this”?

On your worse days go back to the 2010 Olympics when you stole the show with all your cuteness and energy. Think of all those moments and memories your team froze into time together. If you by chance have forgotten any of those memories go back and watch all those DVD’s that captured those precious moments. Just maybe that was the start of your journey or path/purpose in life. Learning how to freeze moments of time.

You have proven yourself to be a great advocate with courage, strength, endurance, fight, gutsiness, and intestinal fortitude even during all your pain and suffering with an unknown, unacknowledged, debilitating medical condition. You have already acknowledged I’m sure that this is going to be a long and hard journey/battle to get the medical guru’s on your page with the seriousness of the issue. It will be a long and hard fight but you are doing exactly what you have to do to succeed with your drive and continue to do it with pertinacity. Never give up or quit or fall under political correctness, keep it real so everyone can feel the need for change.

Acknowledge that, like the Freeze Flames Team, you still have that team, it is just the players that have changed. Your biggest support is your mom and dad who are great advocates in themselves, then your sisters whom you will support on your good days and they will support you on your bad days. Then your extended family and friends who are also doing what they can although limited compared to your power with what you can do living the nightmare.

I am sending you and your family, from my heart the energy it takes to remain committed with steadfastness for your purpose of change because it takes a lot of energy. Maybe in the end you will freeze this moment in time as well and change the world forever.

Jeanette

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