I May Be Dying, Yet I Live
By Nikki, age 18, Pennsylvania
I have always firmly believed that every day brings about a change. A change in me, a change in the way I look at things, or just a change that has escaped my attention ... Until about 8 weeks ago, that is. You see, I've had my fair share of shortcomings and problems, but none of my life experiences could have prepared me for these last few months. Exactly eight months ago I started a process that will shake me until the day I meet my dear Father in heaven.
Since I have aroused so much suspense as to what could be so horrible that it would shake such a normally strong person, eight weeks ago I was tested for a terminal illness called Huntington's Disease. I have grown up with this disease, but it has never been a fond memory of any sort. I have lived with my grandparents since I was exactly a year old. I call my grandmother 'mom' because she adopted me and has always been the mother figure in my life. They have always been here for me and helped me through any imaginable obstacle I've endured, but nothing could have prepared any of us for this.
My biological mother died of this terrible disease when I was 13, or as I like to call it, "the family curse". For years I went to see her as she was tossed from one mental hospital to the next. I was so young, and it never truly fazed me, or so I thought. In the last four years of her life among us she spent every waking hour at a nursing home. I would go see her and I would end up becoming distraught because she couldn't walk, talk, eat, or even get dressed or comb her hair on her own. I would sit there and do anything in my power to get her to know I existed, to let her know that I loved her and that I wasn't mad that she couldn't take care of me. She couldn't even recognize emotion. She'd think I was sad when I was happy, and vice versa. After so long I let myself emotionally give up because I knew there would never be any progress, and I knew that for sure, but what I didn't know is that soon after I gave up she would pass away.
What bothered me even more was the fact that I couldn't process my emotions in the appropriate way. I wanted to cry, but found myself just sitting there confused by my own emotions. Then one day it suddenly crashed down on me like a piano had fallen from the sky and pushed me six feet under the dirt. I screamed inside as I realized that I wasn't there in her last days, that I didn't truly ever get to know her. I fell into a depression that seemed so deep that I could never in a million years dig myself out. I know that there was nothing I could do, and that I had tried my best to establish a connection, but that didn't change the fact that there was a gaping hole within my heart nearly as large as the Grand Canyon.
I remember very clearly the devastating night I received a call from my grandmother, but what I don't understand is the way I felt. I remember picking up the phone and hearing my grandmother say, "I'm sorry, hunny, but your mother passed away tonight." I felt as though I wanted to slam myself through my bedroom wall at that very moment.
As the years have gone by I have developed a more mature understanding about the situation, but that doesn't mean I'm still not devastated. Now I will continue on with my current situation, but in order to understand the present you must investigate the past. I had always wanted to get tested ever since I was 12 or 13 years old, but you have to be 18 to be tested for Huntington's Disease. Most people assume being tested for an illness is just a test of your blood or a sample of some sort, but it is so much more than that, at least for this test anyway. Considering that it is a terminal illness you have to go through rigorous counseling before they can even determine whether or not they will test you. They are so convinced that you might commit suicide or give up on your life, and I honestly understand their dilemma. I was told to my face that I wasn't mature enough for it, that I wasn't ready for it, because I couldn't even handle that they were saying no to testing me.
You would have to know me really well to understand what I'm about to tell you, but let's just say I have the power of persuasion. I sat there and let the lady say whatever she wanted to try to break me, but she didn't. I told her that I would rather have the disease than not know if I have it and bring on the symptoms myself. You see, I have extreme hypochondria and a panic disorder, and they are not a good mix in this situation. After hours of fighting with this woman, she finally gave in and drew my blood.
It takes twelve weeks to get the results and I've already waited eight. I don't know what the results are going to be, but I hope to God that it is not positive. I've prepared myself for both ends of the spectrum as well as I could, but nothing could ever truly prepare me for a positive result. I have gone through weeks of hyperventilation, insomnia, panic attacks, nausea, shaking, blurry vision, etc. One thing that really surprises me though is the strength that I have developed over these past few weeks. I never thought I would make it through this. I am having some difficulties, but I am still proud of myself.
What I have learned I want to share with you. No matter what, always remember to think positively, no matter how wrong everything seems to be. After every bad streak comes a good one. Never be afraid to reach out or to tell people how you truly feel. We are the generation that needs to step up to this sickening world. Just remember that no matter what you have done there is always one person who will stick with you no matter what. You've probably heard of him before - his name is Jesus. You know, the guy who hung on a cross and was tortured for someone he hadn't even met yet. That person is you, every single one of you.
I don't expect you all to agree with my views, only that you respect them. If you are lucky and you're not going through this I am so proud of you, but I am telling my story for those of you who wish you could understand or have always wanted someone to shed light on how it feels to be tested for a terminal illness. Well, now you know. I write articles like this to help others learn from my mistakes and also to know that, no matter what is going on, there is always something positive to reach for.
In closing, I encourage you to sit down and truly think to yourself after reading this, just let it marinate in your mind for a few minutes. I am a living example of how great God truly is. Most adults, let alone teenagers, wouldn't be able to deal with all the stuff I have gone through and still have a positive attitude. All things are possible through Christ who strengthens me. Ever need someone to talk to? Someone who won't judge you or criticize you? Talk to God; he is always there, no matter what time of day or night. If you have seen something in what I have mentioned and believe that you are truly ready to surrender to Jesus, say this simple prayer:
Lord Jesus, I know I am a sinner, but today I want to surrender my sins to you, For you are the Almighty Savior who brings strength in times of trouble. From this day on I will do my best to follow your Word and grow in you. Please help me along the way for I am not perfect and I will make mistakes. I just want you to know that I have your best interest at heart and that I will never stray from you purposely. I am giving all that I am to you. And I pray this in your name, Lord Jesus. Amen.
Also, please remember that if you need someone to talk to besides God that I am here for any of you, even though I don't know your name or who you are, or any of that. The reason I say this is because no one deserves to be alone or to suffer without help.
Feel free to contact me at any time, using the response form below.
Thanks for reading. I hope you enjoyed my article.
Love, Nikki
