Like I said in my first post, I was driving to school and my head felt weird. I literally woke up with Dystonia. From what we know, some forms of Dystonia are genetic, some people get it from head injuries, brain tumors...and then there's those who wake up and BAM. Just have it. Life changed forever. No cause. No answers. In less than a week I could barely function in school and work and I had no idea what was happening to me. I saw every single one of my doctors and not one of them could tell me what was wrong. I'll never forget the day I completely felt myself losing control over my body...
It was the day of the rally that our senior class got kicked out of (I'm sure a lot of people remember this.) Instead of going back to class, the whole senior class ended up in the quad screaming THIS IS OUR HOUSE!! It was EPIC. Where was I? Hiding inside the IB building packing up my things, desperate to go home . It was happening again, I was losing control. My neck was slowly turning and contorting my head to the left. It's painful beyond words. I felt like I was on the outside looking in, and no one knew what I was going through. How do you explain the unexplainable? I should have been there with the class of 09' screaming my lungs out with no care in the world. Instead I was living a nightmare, and I was giving up hope fast. Talk about suffering in silence...
It is so hard to find the words to describe exactly what Dystonia feels like. There are only 2 people in the world who truly know the depth of the pain that I experience, my mom, and Taylor. They were the only 2 people that I let in on this entire journey and were there from the very beginning. I was terrified. No one could tell me what was wrong with me. I was on about 5 different pain medications and muscle relaxers and nothing worked.
The first trip to the ER happened in about October (still no diagnosis). It wasn't just the contorting and intense spasms happening; every time I laid my head down, it was bopping up and down, side to side, so intensely that I knew if it did not stop I was going to break my neck. No doubt in my mind. I was in the ER from 11pm to 5am. I got a CAT scan, the doctors told me everything looked normal, gave me a bottle of Valium, and told me to go home. Are you freaking kidding me? This is not happening..this is not happening...this is not my life.
It got to the point where I couldn't go to school anymore. I had no control over my head or neck, I was in SO much pain. Dystonia is all-consuming. It completely took over. Someone recommended I go see a neurologist, and by this time it was November. I had been going through hell for 2 months now and literally wanted to die. It's a horrible thing to say, I don't believe suicide is the way to go, but that's how much pain I was in. I wanted to die. I saw a neurologist, Dr. Mahaldo-Chang, who is absolutely AMAZING, and finally had a name for this horrible awful thing that was killing me: Cervical Dystonia. And so the journey and treatment began...
There were so many nights when all I could do was cry and pray, and cry some more.
I have to mention someone here, and this is not easy for me by any means, and I'm asking for no judgment or assumptions. This is tough. I can't even write this part without bawling my eyes out, but people need to know what an INCREDIBLE thing this person did for me.
Taylor.
Oh Taylor. Where do I start? I have never had a person love me so whole-heartedly that they would sacrifice what he sacrificed for me (except my mom, but she will be next, and you're getting a whole post, mama).
I can only imagine what he went through. There were so many nights before I was diagnosed that I would just lay in his lap and cry and cry and cry and he did nothing but stick by my side and tell me everything would be okay, even though he didn't know if everything would be. There were 3 weeks when things were so bad I couldn't walk, and Taylor was there 24/7, making sure I ate, making sure I slept, bringing over movies I had never seen before, making sure I remembered how to laugh, and giving me so much love and strength I can't even find words to explain it. He could have so easily walked away. It was his first year of college, he was 18 years old, and he chose to stay with me instead of doing whatever normal 18 year olds do.
I always tell him he saved my life. He kept me sane, he made me want to keep going and he gave me a reason to live. He let me cry and he let me vent and he never complained.
This is why I say that God works remarkable good out of unspeakable tragedies. If I had never gotten Dystonia, Taylor and I never would have formed the bond that we have. He was such a big part of this for me, and even though we have parted ways I will never forget what he did for me.
So now I continue along my journey standing on my own two feet without Taylor to rely on. How scary it's been! I am still completely open to love, but I come along with Dystonia.
If someone wants to tackle this head-on with me, then glory be to God! I will wait for God to give me that person, if I have not already met him. Love is SO fragile, handle with care!
Taylor taught me what "in sickness and in health means" and I cannot even explain how much I love him for that. If that is not a blessing from God, I don't know what is.
I know this is personal but people should know what Taylor did for me and give him credit. He is part of why I am so strong and he encouraged me to do this blog for years. Not every relationship works out but I'll never let myself forget how much he helped me through this all.
This was a tough one...
I will leave it at that for now.
"If you press me to say why I loved him, I can say no more than it was because he was he and I was I."-Michel Montaigne
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