I am a Christ follower and this is primarily a Christian-based site. As many of you might have seen in my former blog posts, I believe that Jesus came to Earth in human form and died for all of our sins, and I love Him. Don’t run away yet! This is the reason why I have decided to share a post on both Christian and Atheist views when it comes to how Melissa and I were raised, how we are coping with Huntington’s Disease, and what we expect in the afterlife. I believe that it is good to be educated on other religions so that we as Christians are not blindly trying to lead others to Christ in our ignorance of what they believe. I want everybody to have someone to relate to whether they believe in God or not, as empathy and love are two aspects in this life that are desperately needed to be shared and received. With that being said, Melissa and I will be exchanging our religious and non-religious journeys through our backgrounds, hardships, and even our stance on suicide. I hope you are all able to relate in some way and obtain a form of rest in your weary journey of soul-searching. We love you all no matter what you believe in.
As early as I can remember, my family and I went to church every Sunday. I think back to sitting in Sunday school every week with all of the other kids around me memorizing the bible verses just like we were told. I was in the church’s kids choir, and I even did a Christmas performance in sign language. We often had people over or went to other members houses for communion, and once I was old enough, I attended Wednesday night AWANA (a Bible study program for children and teens) every week. I remember my mom worked for the church daycare and my dad went to Cambodia for a mission trip. We prayed before every meal, we dressed up for Easter and Christmas, and God was part of our lesson plans in school. Our family was the type that made church and God a part of our every day lives, not just every Sunday. With all of our routine, one would probably assume that I would have turned out “all right.”
At about 6 years old, despite being so involved in biblical practices, I distinctly remember having questions about some of the “facts” presented to me in bible stories, and thinking that it was ridiculous that we spent hours each Sunday morning memorizing a few lines from the Bible. My beliefs and behaviors went back and forth based on who I wanted to impress that day, and I knew how to manipulate things so people would be impressed with my intelligence and memorization. Achieving awards in my AWANA group became a game of showing off how smart I was rather than a symbol of my dedication to Christ.
Eventually, one morning in Sunday school, I remember telling one of the helpers that I was sick of memorizing the verses and that I thought it was stupid. I wanted to quit AWANA and stop going to Sunday school. Even as a young kid, I didn’t really know what I believed in, but I knew something seemed “off” about Christianity and that I wasn’t going to “follow the leader” when it came to my faith.
Then, one night when my mom was tucking me into bed, she began explaining to me what baptism was. We had an intense conversation (especially for a 6-year-old) about Jesus accepting me and taking away my sins, and that it could only happen if I asked Him to be in my heart and dedicate my life to Him. I had friends getting baptized soon and I felt entirely left out. That was the first time (and honestly probably the only time) in my life that I truly feared going to Hell while the rest of my loved ones spent eternity in Heaven. I begged my mom to help me ask for forgiveness, so she knelt down by my bedside and told me what to say in prayer. A few weekends later, I was baptized at our church in a flowery dress, and my mom gave me the most beautiful cross necklace afterwards. I remember being elated, filled with joy and power, and feeling like I finally fit in and knew what was “right.”
Then disaster struck my family. My grandpa with Huntington’s Disease passed away from a heart attack. My dad tested positive for HD too, followed by a few of his other siblings. Then the terrorist attacks of September 11th caused my dad to lose his job with the airlines. We went bankrupt and lost our house that sat in a beautiful neighborhood in North Carolina. And at 7 years old, leaving all of my friends was the worst possible thing that could happen to me. I hated my parents and I hated God for putting me through all that pain. I couldn’t comprehend why He would hurt me like He did.
When we moved to Michigan, things seemed better, as my dad could qualify for Social Security Disability Income and I was able to grow closer to my extended family. Michigan had a lot to offer, but it didn’t have a church that we felt comfortable in. My parents marriage began to crumble in front of my eyes, with increased arguing and more time spent apart. Eventually, my mom asked for a divorce and moved twelve hours away. Why would God want to put me through even more hardships than I’d already had?
For a few years after my mom left, I connected Christianity with who she was, as she was the more outwardly religious parent, but all of her religious practices pushed me away from God even more. I prayed and prayed for answers, begging and crying for an explanation for all of my questions, but all I got in return was silence. If my mom was such a dedicated person of God, how could she be okay with divorcing my dad who was recently diagnosed as disabled? I remember The Bible saying not to get divorced, so where did that leave us? I wanted to love my mom, I wanted to understand why and how she could leave my dad. Eventually, it became easier to process all of our struggles when I didn’t consider her or myself a Christian. That was the first time I truly allowed myself to be okay with stepping away from Christianity, from prayer, and from believing in Jesus.
Like Melissa, I was born and raised in a Christian household, however my journey started off rocky from the very beginning. My parents struggled through a somewhat unclean divorce when I was about four and my sister was three. It was decided that we were to be sent off to live with our first-time single mother who was (understandably) depressed. We had an extremely tough time dealing with her alcoholism as we got a bit older, but we were still far too young to try and change anything. Because of my mother’s problems with alcohol, we were again sent off, but this time it was to live with our dad and a very abusive stepmother. We stayed with them from around the age of 8 to 15. The whole irony of my religious situation is that I came to know Jesus, and I mean really know Jesus, in the midst of mistreatment and severe loneliness. My stepmother was constantly hanging the authenticity of our salvation above our heads every time she deemed something as simple as forgetting to take our vitamins as a “Blatant lie,” citing Proverbs 12:22: “Lying lips are an abomination to the Lord.”
Oh, the faith of a child (or young adult). The sum of our stay while in our dad’s custody mostly consisted of going to church and church-related events, which I fully enjoyed. I came to love the Lord by being in the midst of the youth organization at our church, who I considered my “real family” at the time. The love, support, and grace I received from my friends and mentors became a reality I had never experienced before, and I wanted to be able to lead by their example. God then opened my eyes to the filthiness of my sins and the boundlessness of His grace and love, and I fell head-over-heals.
I grew up within a broken household: abused, isolated, and confined to my room after my extensive list of chores were done. I was never alone, though. Jesus was my best friend, and I was completely satisfied with sitting on my bed, reading the Bible, and praying to Him. He never once left me alone during those hard times. He was my hiding place and the love of my life, my Refuge and my Beacon of Hope.
One night, I was sitting on the edge of my bed, begging God to make my whole life a story that would reflect who He was in its purest form, and then I came across 2 Corinthians 12:9-10:”But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” So that became my prayer: I wanted to become the weakest, endure the most persecution, and live the most difficult life one could possibly live so that I could bring Him glory. Well, He definitely handed over the suffering part, but things changed as I got older. A lot of things.
Our struggles with religion:
I made a new best friend in early middle school who was always talking about how great her youth group was, so I decided to go with her and try things out again. I remember having fun during the youth group sessions, so I decided to join her for a Sunday service the next weekend. During the Sunday School session before the real service, six or seven of us were all given random periods in time and told to draw a picture that represented it. I was given something crazy like 10 billion years ago. My 11 year old, non-Christian brain decided to draw dinosaurs, large plants, and an asteroid falling through the sky. Of course, I was first to present and had to describe what I drew. The two Sunday School leaders spent the rest of our time explaining to me that dinosaurs never existed and that the beginning of time was with Adam and Eve. The others didn’t get a chance to present their drawings. I had no idea how to comprehend what they had just told me, and the rest of that Sunday morning felt awkward and uncomfortable. I felt entirely lost and pushed away from Christianity once again.
Towards the end of middle school, after a few years of depression without God and finding a boyfriend whose mother I wanted to impress, I decided to join a church in the area again. I mostly attended the youth group, but the more comfortable I became with the people there, the more desperate I was to find purpose in what I witnessed so many other people confiding in. I started regularly attending Sunday services and sat quietly as I listened. I sang loudly as I attempted to reach up to God, and prayed silently for answers to my questions. I spoke with counselors and others who knew my struggle who wanted to help me find faith in Jesus again. But eventually, I stopped singing, I stopped praying, and I stopped going to the church services. Everything that was preached to me and everything that the pastor tried to convince me of only seemed to push me further away from what I wanted in a “higher being.” That was when I decided that if I was going to believe in God, I was going to do it my own way and that religion had it all wrong. I felt I needed a relationship with Him, but no church I went to and no person I talked to seemed to be doing “it” the way that I wanted to be doing it.
That’s when I started praying every night. I would pray for hours at a time and would continuously wake myself up if I didn’t finish my thought as I dozed off. Each night, I got out every single concern of mine in extreme detail and begged for some guidance. I thanked God for all He had given me, for all I had left despite what I felt I had lost, and expressed deep love and desire for Him. But my prayers were never answered. I never felt satisfied, and I started to question Him again. What kind of God, who says He loves me endlessly despite my sins and flaws, never responds to my pleas and cries? What kind of God allows such misery and horror in this world and sits in silence as He watches?
My relationship with God really started to feel like a game that He was playing with my mind and with my heart. He wants all of the Glory, yet hardly gives anything back in return. How is that fair? All of the disease, all the suffering, and all the injustice in the world felt like it was being created by Him to “teach us a lesson” and bring Himself more Glory. That was exactly what I thought He wanted, because the God I came to know was selfish and cruel. Why would I ever want to praise a Lord that manipulates us that way? Why does he deserve any Glory for all of the cruelty He deals out? How is a life committed to a selfish, seemingly unloving, invisible man a life I want to live?
I began thinking further on the topic… If a decent person who is committed to creating good in the world and making the lives of other people better is not a Christian and has not asked Jesus for forgiveness, how could a good God send them to Hell? How could it be that every other spiritual person was entirely wrong in their faith and now rotting in the flames? Why didn’t He guide them, too? Where does God put people like Gandhi, who was willing to sacrifice his life for other people, and Native Americans, who cherished every living being equally?
If I live my life in such a way that brings good to this world, on my own, without Him, where will He stick me? Will He punish me for that? Do I deserve eternity in Hell just for choosing my own path, even if it is still a “good” one? If so, I do not want to praise a being that is willing and able and determined to do that to me. I don’t want to spend eternity with Him, and I definitely don’t want to glorify Him, especially if He is too selfish not to see the good I can do without Him.
As I grew older and moved away from my dad’s house, my focus quickly changed to boys, fitting in with my friends, and dealing with high school/college. I began to experience a certain kind of rush that only Earthly things can provide: Being called beautiful for the first time by a boy I liked, moving into an apartment with my best friend the day after graduation, and escaping from the cops after being caught drinking underage.
I also experienced many bad things that I believe stemmed from both an underlying illness and my distance from a God that I used to spend every day with: Crippling depression, social anxiety, insomnia, extreme paranoia, and subtle forms of Bipolar Disorder. I clearly remember becoming so depressed that I stopped going to my college classes, and at night I would curl into a ball on the floor and scream out to God for some sort of alleviation. For a good time-span, I never received anything even remotely resembling a remedy, and that’s when my paranoia took a turn for the very worse.
I began going to church again, reading my bible, and praying every second I got. The place I went for answers only gave me silence. I took this as God’s way of saying, “I hate you. You’re going to Hell.”
I couldn’t live with it. Demons tortured me every second of the day, and all I could think about for weeks straight was, “I’m going to Hell, I’m going to burn, I’m going to suffer for all eternity.” I stopped sleeping, eating, and going to school. I contemplated suicide every second of the day in hopes of ending the persistent presence of utter darkness that surrounded me.
One day, I almost did it. I couldn’t take it anymore, but I was sure that if I killed myself, then I would end up in Hell like I thought God promised I would. So I was stuck.
I finally gave in and called my mom.
And then, before I could even blink, I was locked inside of a mental institution. They stripped me down, made note of every mark and self-inflicted wound on my body, and dressed me in a gown so thin that you could almost see through it.
The room was about the size of a gymnasium with rows and rows of beds all lined up side-by side. The whole hospital was co-ed, and I was young, covered in nothing but sheet-like material. I won’t repeat some of the things that were said to me by both men and women, but needless to say, I was petrified.
There were people screaming, talking to the walls, and banging their heads against the ground. I was placed on a bed at the very end. To my right sat a woman who repeatedly claimed to be a servant of the devil as she rocked back and forth, spewing profanities so fowl that I came to believe she was possessed. On my left, there sat a tiny girl clutching a Bible in her hands, reading some of the verses out loud. As I sobbed, she gently touched my shoulder and told me not to be afraid because Jesus loved me.
I was literally sitting in between God and The Devil. I swear, the juxtaposition of the two made me go even more crazy, internally at least. It took around five hours of stubbornly persuading the nurses that I wasn’t crazy (of course they believed me) in order to get out.
From then on, I decided to stop thinking about God for the most part. At least for the time being.
A couple years later, after many long nights of reading “Mere Christianity ” and studying theology, my mind formed a clearance where a pile of doubts and hatred used to reside. God sent us His Word in order for us to see that He loves us, as well as to provide a refining fire that teaches us right from wrong. In this life, He allows bad things to happen so that we may be able to search for Him and rest in His love, which is the best place you could possibly be. God, in Himself, is everything good, loving, and pure, therefore He cannot turn against Himself. He cannot lie, therefore He speaks to us through His Word in full truth. If a person desires everything good and pure and everlasting, then there is nowhere else to turn besides to Jesus, because every pleasure that Earth provides is so very temporary. And if we are doubting or feeling unloved by Him, it is the world and our impure hearts that curse us to live with internal desolation, not God.
A person cannot be given a new heart and find a love for the Lord based on facts, repetition, or rules. It is not based on a “feeling,” for love is not an emotion. You have to come to His feet and believe that you are saved by His boundless love for you, accepting the vastness of how marvelous it is that a perfect, whole, loving Being created you and loves you no matter what.
Even in all of my knowledge, I still struggled to find faith in my heart. I wandered around aimlessly for a good amount of time, and I still have moments of complete discouragement and doubt.
We are only human, though, aren’t we?
Our views on religion and testing for HD:
With everything being said so far, I need you to realize that my journey away from Christianity and away from having a faith of any kind was a long one. It wasn’t an overnight decision, and I sometimes still struggle with what I truly believe in. Labeling myself as an Atheist seems too “harsh” and definite, yet there is no better word in our language for what I feel I believe. And despite what a lot of Christians say about our world evolving to a point that is eliminating Christianity, I feel that they need to understand that living in what feels like an entirely Christian world to someone who is not Christian is also very scary and intimidating. I have tried it, multiple times, and maybe I just never “did it right,” but I know for certain that I do not want to try it again. I have found peace and joy and purpose in my decision, and a lot of people will never understand that.
When I first started thinking about testing for HD in high school, it often made me think about the meaning of life and death. When faced with the idea that my life could be shortened and that I would have less time than everyone else around me, I began thinking that my life now was more important than whatever was to happen after I died. I was not going to waste time spent pleasing a God I didn’t even agree with and who I thought was cruel. And I most definitely did not want to spend my entire (shortened) life and all of eternity praising a God that allowed me and my loved ones to endure this kind of suffering. I did not think He deserved that kind of Glory after what He did to me. I eventually considered time in Hell as a better option than a life wasted worrying about Him when He was obviously not worried about me.
That may sound absolutely absurd or foolish to someone who is working to achieve the goal of eternal life in Heaven, and I entirely understand why one would think that. But I just knew that if I inherited the gene for Huntington’s Disease, then death would be the final step, the cure to my sickness and an end to my suffering, and I would not want there to be anything afterwards. By letting go of the concept of Heaven and Hell, I allowed myself to accept the time I have now as the most precious time there is. There is no higher goal, there is no one else to please but myself, and that motivates me to live my life exactly how I want to.
With my anger towards the god that Christians created, I concluded that if there was a god, the Christian one was not the right one. I did a little research into other religions, hoping for some direction, but found nothing satisfying there either. The most appealing belief to me was reincarnation; I still liked the idea of meaningful connections in the universe, though the logistics don’t seem quite right. Eventually I came to conclude that no religion had gotten it right yet and it felt like I was the only one who thought this way. All of these things led me to my final stage of belief, the set of beliefs that I currently hold, and what I think gave me the courage to decide to test so young:
- The God I used to believe in is cruel and unjust. His promise of eternal love was a scam for higher glory. Spending my life praising Him made me lose a part of myself. Heaven would not be worth the loss of life and time with loved ones that I only have now.
- It is easier to live life to the fullest if I believe there is nothing after death, no afterlife, no Heaven, and no Hell.
- I am positive for Huntington’s Disease and I need – I deserve – to live my life exactly how I want to.
- I can bring good into the world, I can inspire people, I can improve the lives of others without His name overshadowing mine and that is not selfish. I can truly love others and leave a good mark on the world because I want to, not because I feel I have to for Him.
Twenty-one years old. I missed God terribly and always wondered where he was when I began self-medicating my misunderstood mental illnesses by drowning my doubts in bottles of alcohol. I began to wonder if God even existed at all, so I continued my studying of theology while reading “Mere Christianity,” by C.S. Lewis, which, in a way, proves that Christianity is the one, true religion. I compared the Bible to other books, and its theology proved by far to be the most accurate. My faith was still only small and unsteady, but I knew three things were true:
- There is a higher power, and if there’s a higher power, He has to make Himself known.
- Of all the “gods” in the world, Jesus’ foundation is unconditional love, which I desperately needed.
- I contained an amount of faith that grew into at least the size of a mustard seed, which Jesus pronounced was powerful enough to move mountains. (Matthew 17:20)
So my faith grew little-by-little, and though it was planted in rocky soil, it began to stem slowly over time.
There was still a huge factor that haunted my life: I knew that something was terribly wrong with my mind. I never felt “normal,” and I was so confused as to why a persistent, erratic twitching kept me up at night. Reluctantly, I began reflecting on a hereditary disease my grandfather had that, according to my family, “Could only be inherited by males.”
One day, I was rummaging through some pictures in my mothers drawer out of interest in our heritage. I began finding old, black-and-white photos of women who contained visible traces of my DNA in their eyes, their nose, and the way they smiled. I flipped each one over, searching for a description of who they might be, but I discovered something horrifying instead. Scribbled in faded, black ink on each of the photos read: DIED OF H.D.
My heart stopped.
I knew I had it. This is what’s been wrong with me.
Without telling anybody, I immediately got tested, praying to God that he would spare me from a life of antagony.
I begged I wouldn’t get it. I prayed every day.
And then I got the phone call.
“Your test results are ready. Please come in to see the doctor.”
I’m not sure what came over me, but I firmly believe that you can know something is true without feeling it in your heart. And so I prayed, through reluctant hands white-knuckling the steering wheel, “God, please give me the results that will bring you the most glory.”
Yeah, I cried. I mourned. I got angry. I gave my mind over to depression for a while. But you know what? One day, God gave me the strength to get up, become a part of The Huntington’s Disease Society of America, and write my first blog post on my testing experience. The piece I wrote received over 200 shares, and now I am a full-time writer who spills her heart to the world in order to share empathy, hope, and love to others who are in pain. I get to go to HD conventions and camps on scholarships. I get to share in my pain with others and make life-long friends. I’ve had strangers cry on my shoulder, and I’ve involuntarily cried in a room full of 50 people. Most importantly, I’ve stood my ground on what I stand for through all of the depression, anxiety, and fear of the future.
That type of strength does not come from me. God clearly had a plan for my life through the suffering I had prayed to receive when I was little.
I am not perfect. I fall down all the time. I fail daily. My faith is still as unsteady as a roaring ocean, but it’s big enough to make a change. This life consists of Jesus moving mountains for me, even when I’m too busy to notice.
Our views on suicide:
Suicide has always been a tricky topic for me because I have dealt with it in so many different aspects of my life. I’ve thought about it through truly sick and mentally-ill family members, over-dramatic ex-boyfriends, depressed or grieving friends, and in a more professional setting, as well. Because this is a discussion about our views on religion, I must admit that I have never really thought about suicide from a religious perspective. I have never really needed to because once I truly became aware of suicide as an issue, I was already disconnected from Christianity. Because my mind tends to focus on science and psychology as a basis in which I believe, I’ve always thought about it as a personal struggle with oneself and the overwhelming issues in their life. With that being said, I ask you to tread through my next thoughts carefully and not take them too far beyond the words that they actually are.
When it comes to suicide in general, I am definitely an advocate for prevention. I would do anything to protect another person, to help empower them to be comfortable and happy and lead successful lives. In any situation, I would do my best to ensure that they know that they are loved, and that despite what they might think, people would care if they were gone. If the reason for wanting to end one’s life is due to temporary problems, I would always do what I could to help them change their mindset and push them through their struggles.
With that being said, I don’t necessarily see a place for God. Others may find worth from his opinions and see value in his expectations, but I know that a lot of people also experience stress and anxiety from not being perfect in their faith. Instead, I see the importance of knowing that real people who are present and experiencing life with you right now love you endlessly. Not someone or something who exists out of sight and has failed you multiple times, who punishes you for feeling upset about your life, and labels it a sin to end your pain in the only way you feel how. There is real gratification, immediate return, and a significant sense of hope in absolutely knowing that the person standing along side you loves you and wants you alive. In a time of need and despair, a person should be focusing on healing themselves rather than disappointing a higher being.
And since suicide is often the last resort for people who feel they are a burden to their loved ones, I view the act as selfless, and usually a last portrayal of love for the ones they care about.Viewing suicide as a sin just further solidifies my concerns in how a good god could punish a good person who has lived their life gracefully and full of love for others for one final act of selflessness. I personally would not want to continue a life of pain and suffering just based on a fear of going to Hell. Rather, I would want to endure that pain and work through it because I know there is more life and more happiness once I do.
On the other hand, I feel there is a sense of dignity in dying when one is suffering from disease. Suicide when one is sick, when one has lost themselves completely, is a different act of selflessness than a suicide without a critically diseased brain. Even though I would never expect or wish for a sick family member or friend to end their lives before Huntington’s did, despite knowing that it would be one of the hardest things I could ever imagine enduring, I would always respect their desire and decision to do so because I have had the same thoughts myself.
I have imagined that using physician assisted suicide or another peaceful way of dying would be the easiest way to go when my brain decays and my body is not mine anymore. I have always thought it would be more comfortable and more gratifying to knowingly be able to say goodbye to my loved ones, to have them see me as me again in my last moments, and to beat this disease by never having to truly face its harshest parts. It would save my family money from medical bills and nursing care, from precious time for themselves and their own healing. When I go, it would be entirely my decision rather than HD’s, and I could understand finding peace and happiness in that decision.
I know this explanation doesn’t really have a conclusion, as I don’t really know where I stand on all of it yet. I cannot truly imagine taking my own life, even if I were sick beyond my control, though it has crossed my mind plenty of times before. I would never want to hurt my family or take away my time from them, but I do see relief in knowing that I could take complete hold of my situation and end the battle exactly when I wanted to. I see value in ending this disease on my own terms instead of letting it take me away from everyone I love with my body still there. I’d still be strong enough to tell my family and friends that I loved them as I went .
Honestly, I’m not sure where I fully stand when it comes to suicide. I definitely think that it’s a sin; I mean, you’re murdering yourself, taking away a life that was given to you as a gift. YOU didn’t choose to be born, God chose a time, and I believe His timing is always perfect, even when it comes to dying. Everything serves a purpose in some way.
Shamefully, I’ve always thought that I would commit suicide when my symptoms start to get bad, or when I begin to lose who I truly am. I’m so prideful. I don’t want someone feeding me through a tube, changing my diapers, or dealing with my constant mood swings. Especially if the person taking care of me is my husband or children. I don’t ever want to become a burden, and I’ve always thought that it would be better off if I was gone during that time.
My stepmother raised me to believe that if you kill yourself, then you go to Hell because you can’t repent or ask for forgiveness after you’re dead. Others tell me that you will still go to Heaven because Jesus died for all of your sins on the cross. You can never ask for forgiveness for every little thing because there are sins we commit that we don’t even recognize as such. So, I’m at a crossroads.
At the same time, I think back to my mom and my sister, and I would much rather take care of them and love them through all of the hideous symptoms that HD brings than have them commit suicide. I would be devastated, and my mind would forever wonder whether they would be dancing in Heaven or burning in Hell. It sounds crude, I know, but I’m only being honest.
There are some things, though, that I know to be true:
When we are at are weakest, God is at His strongest for us.
When we lose who we are and surrender our bodies to HD’s painful dance, God remains the same. He knows your soul, and His timing is perfect. Let your purpose play out, even if you’re blind to where it leads.
John 13:7- “Jesus replied, “You do not realize now what I am doing, but later you will understand.”