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    • #11346

      Kendall Harvey grew up attending church, studying the Bible and believing in God, but when she was diagnosed with Freidreich’s Ataxia at the age of 25, she suddenly felt lied to and cheated by God and her faith began to waver.

      Click here to read about how making a big life decision – in spite of FA – eventually lead Kendall back to God and made her faith stronger than ever.

      Do you believe in God? How does faith or spirituality factor into your life?

    • #11351
      Matt Lafleur
      Keymaster

      This is a deep topic (even for me!). I grew up very involved in my faith-life, I went to a Catholic school, served on the ministry team, got a graduation award for “The Most Outstanding Catholic Student,” and I served as president of the Catholic Center in college. Faith really helped me as a kid slowly losing his ability to walk and be coordinated. I think believing in God really helped me get through that dark period and see what matters, even if it’s not evident.

      These days? I don’t believe in God, but I don’t think that matters in what kind of person I am, and the kind of person I want to be. I believe in compassion. I believe in selflessness. I believe in mercy, in courage, in camaraderie, in strength. That’s where I am. And I think if there is a God, he believes in those things too.

      • #11387

        I love everything about your position, Matt! That’s where I stand too

    • #11380
      Gunnhild
      Participant

      Yeah, deep topic! Being diagnosed was an eye opener for me. I stopped believing in god after 31 years… I never felt bitter for being diagnosed, but it kind of opened my eyes to other peoples suffering. Specially hard to see kids hurting. And I started asking myself over and over; where is god?? So eventually I decided to myself that IF there is a god I’m not a fan. Somebody allmighty should do better. So I stopped believing and discovered true inner power instead. It was such a relief actually. Its good to be able to empower myself instead of praying for someone out there to help. There… I might have offended millions of people by saying this… sorry!🙈 Its just my personal meaning.

      • #11383
        Matt Lafleur
        Keymaster

        I love the honesty and authenticity. I don’t think you were offensive at all.

        • This reply was modified 1 year, 1 month ago by Matt Lafleur.
      • #11388

        Thank you for sharing! You are only being honest and describing who you are… Doesn’t matter if others become offended anyways, its your life, not theirs.

        Other people, like me, feel similarly so thank you!

    • #11393
      Matt Lafleur
      Keymaster

      I hope we hear from believers too!

    • #11395
      Brittany Waters
      Participant

      Oh I can relate to this. My dad has been a pastor since I was a toddler, so I grew up believing too. I think I’m agnostic now. I really wish I could believe, I just don’t.

    • #11531
      Natethegr8
      Participant

      Romans 8:18 I consider that the sufferings of this present time are as nothing compared with the glory to be revealed for us.

      The question of where is God and why is he doing this to me is one that has popped into my head many times in the years since my diagnosis. As I started to pay closer attention to the things that are part of the faith and the Bible, I became less prone to blaming God for being this way. There is always a reason we just don’t understand the purpose. God hears our distress calls and just because He isn’t answering how we want or at the exact moment we want, doesn’t mean that He doesn’t care. A song by Garth Brooks is a good reminder of this…https://www.youtube.com/watch?v=y5tFrU29F24

      Stemming from my from my faith in God, is the belief that the suffering I have to endure and as well as all FA patients, does not go unnoticed, and “counts” for something. He truly wants to help us, but just can’t. He controls the things in Heaven, not always on earth. Our reward will be great when we get to Heaven. I encourage each of you to pick up a Bible and read! God loves each of us and we shouldn’t let this obstacle drive a wedge between God’s heart and our hearts. Again, I completely understand that it is easy to play the blame-game to justify the many hardships that come with this disease. I know because I’ve been down that road once or twice.

      “But as for me and my house, we will serve the Lord” (Josh. 24:15, NKJV)

    • #11530
      Clester
      Participant

      What is sad is what churches teach about God . my wife turned away from god until I started to show her in the bible what god actually says instead of what is ” taught”
      God didn’t do this to people …..WE DID!!!!!! God doesn’t want his children to suffer no more than you would your own child.
      We chose not to do like god says we should. We choose not to eat the right foods, we choose to do drugs, we choose to let people get away with rape and incest etc. Etc. Etc.
      Evil behavior will result in bad things happening . we choose to turn a blind eye and let the crap happen.
      God didnt!!!!
      Could God cure everyone? Absolutely !! Will he?
      Why would he if we choose to allow all the crap that goes on ?
      That’s like blaming the devil when something bad happens ! Why give him the credit for what you do ?
      There is no difference between blaming God for our ailments and blaming your pencil for failing a test at school !!!!! Or blaming the man two thousand miles away for you running out of peanut butter!!!!
      Its simply ignorance and laziness.
      How long do you think your employer is going to keep paying you if you refuse to work? Why would God want to help you/us if you/we choose not to work/study for him ??

    • #11542
      Clester
      Participant

      Everyone talks about losing faith in God . why lose faith in God? The way I see it my faith in people is gone and the difference is people give good reason to lose faith in , god doesn’t.
      God hasn’t done anything bad to anyone!!!! People on the other hand do nothing but bad things to other people all the time .
      Think about this:
      Love and/or caring about anyone or anything absolutely requires at least two things…
      1 effort
      2 sacrifice ( money doesn’t count, money is a reason not to be resposible)
      Very few people know how to care or love these days.
      These days the only caring or loving that goes on is for themselves .
      No-one wants to do anything for anyone unless they get something in return.
      Not saying there isn’t anyone out there but I’m over 50 and cannot think of a single person ever in my life that wasn’t primarily only about themselves.
      Now there is a reason to loose faith…. But not in God!!! He didn’t make us that way . we did that all by ourselves!!!!! We got lazy and ignorant!
      Ignorance is only a bad thing if you choose to remain that way.
      Laziness is always a bad thing.

    • #11543
      Matt Lafleur
      Keymaster

      This topic is not meant to get people to proselytize or to believe as they do, but a place to be genuine and honest about your beliefs. Please be respectful of everyone’s views. Rather than convince them to believe otherwise, we hope to foster understanding of one another as we are.

    • #11544
      Gunnhild
      Participant

      Whatever gives you inner strength and peace of mind… believing in god or not believing, as long as it empowers you I think it’s perfect! 🙂

    • #11547
      Clester
      Participant

      Sorry about preaching
      I just get so sick of people misleading others for there own gain and it seems churches do a very good job at it . and its not just churches that do it . you can find that behavior everywhere in life today. My wife ( who has fa)was almost killed ( put her into a comma, shut her kidneys down , killed her large intestine)at a hospital for that very same type of behavior. ( took her to be treated for something simple and they turned it into something else because we were ignorant and believed what they said )

      • #11549
        Matt Lafleur
        Keymaster

        You are a huge support in your wife’s life, and on behalf of all FAers, thank you for loving and supporting our FA sister!

    • #11554
      Gunnhild
      Participant

      Glad she is ok! Must have been so scary.
      Don’t worry about preaching. Its just fine.When I truly believe in something I tend to “preach” about it too 🙂

    • #11567
      Clester
      Participant

      Its not God that chooses to be evil it absolutely is people that have chosen to be evil . and everyone just lets it happen.
      All I hear from anyone is ” oh I’m sorry to hear that , hope things turn around for you and things get better” .
      Guess what folks? It can’t get better unless people decide to change and start actually caring about something other than themselves.

    • #11568
      Clester
      Participant

      You know it was only a couple of years before the hospital tried to kill my wife that I was making good money and gave away over $50 k in one year to help people who were hurting bad because of the economy.
      Now it’s been weeks since we have slept in a bed . I in a reclining chair and her in her wheelchair ( which reclines).
      A lot of people know it and yet no one gives a crap.
      We do have someone at least is letting us have electric for heat . had a few people offer for us to stay in their house but none are wheelchair accessible. And none have a bathroom big enough for her and her wheelchair. So we resort to good ole Wal-Mart for bathroom services. Lol
      On that note . she has been in a wheelchair for over 20 years and not one person has made their house accessible to her . not even her parents or sister. Is that sick or what?

    • #11630
      Robert Rhodes
      Participant

      I believe in God fully without question.

      Friedreich’s Ataxia is temporary and bound to this life. To allow it to paralyze hope for eternity would be a tragedy that I couldn’t fathom. To me, it is a physical problem. Nothing more. It is an enemy foot soldier (and thief) – not a giant.

      That being said, I know God has a plan to reveal His glory through this illness. The glory may not be for me to experience, and I am perfectly fine with that. My belief and faith in God is not based off of or proved by miracles alone.

    • #11563
      Clester
      Participant

      Problem is she isn’t ok . she went from doing most things for herself ….hair, brushing her teeth, most of the dressing , she had just started an business making jewelry , eating, going to the bathroom , getting in and out of the van , etc. Etc.
      Now she is almost completely dependant on everything . it is a huge struggle for her to even get a drink ( which I made a cup holder that is attached to her armrest of her wheelchair)or text on her phone that is strapped to her leg, she can’t feed herself etc. Plus now she is strapped with an ostomy pouch that I have to empty twice a day and change when needed ( which in over three years I am the only person who has ever changed it) . even her speech has severely degraded.
      All because of the f#[email protected] ( pardon the frase)hospitals bs .
      So yeah ,when I talk about people misleading people, I have very good reason for it.
      And worst of it is absolutely no one cares at all. Family , friends , government etc . no one at all.
      That hospital absolutely destroyed her life and mine in every way you can think of. I’ve lost my business , retirement , just recently had to get rid of the last thing we had that we both enjoyed greatly and that was our 30 year old boat we used to go fishing on and even slept out under the stars on.
      Now for the most part we have been struggling to live in our van cause no one gives a crap about anything but themselves.

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