a·live
əˈlīv/
adjective
- 1.(of a person, animal, or plant) living, not dead.
- 2.(of a person or animal) alert and active; animated.
Often, people with Lyme Disease describe themselves as being the living dead. This is partially a defensive comment in response to the statement from others that Lyme isn't a big deal because it isn't a fatal disease. First let me state that Lyme IS a fatal disease. Just ask the many family members of those who have lost their life to this illness. Another reason Lyme sufferers describe living with this disease as being the living dead is because it does feel that way. Lyme robs us of our energy, our ability to walk or use our hands, our ability to think, speak, read, or write. Many of us who live with lyme have found ourselves bedridden for months or years at a time. It's easy to feel like you are dead when you feel closed off from the rest of the world. At my worst I couldn't even watch tv or listen to books on tape because I couldn't process the spoken world. It sounded like gibberish to me.
As easy as it is to describe myself as being dead but still awake, I am choosing not to do that. What does being ALIVE really mean? I'm sure we could all come up with different definitions, but for me I think that I feel alive when I have a sense of purpose.
Romans 8:11
And the spirit of Him who raised Jesus from the dead is living in you. He who raised Christ from the dead will also give life to your mortal bodies because of His spirit who lives in you.
That is how I feel. Even at my worse, when I am only able to lay in bed staring at the ceiling, I still feel alive. Being a Christian I contribute it to the Holy Spirit, but it's more then that. I think it is also because I have a deep rooted sense of purpose. Because I feel as though my life has meaning, I continuously search out what that meaning is, or what my purpose is, and it's that, the searching, that makes me feel really alive. On my worse day the searching happens through prayer and reflection. On my better days the searching includes both finding little ways to make a difference and also planning for the future.
If you have lyme, or know someone with lyme, you know how hard planning is. There is no way of knowing from day to day how you will feel, if your treatment is going to continue to work, or even if you will be able to pay for your treatment. Even though planning is difficult, you can still plan. My planning isn't about making a decision about what I am doing next week, it's about what I plan to do when I am better. Notice I didn't say IF I get better. That's important. I do not even contemplate the thought of not getting better. Getting better is the only option. Now that may take months, that may take years, that may take decades, how long isn't the point. I live every moment in anticipation of being well again. I am realistic in my knowledge that treatment is long and difficult, it isn't even guaranteed, but if I were to worry about not getting better, I would be trying to get well while carrying a heavy burden. It's kind of like a self-fulfilling prophecy. I believe firmly that if I dwell on negative thoughts, those negative thoughts will become reality. Instead, I focus only on positive thoughts and I believe that my body will respond positively in turn.
Some of the plans I make are specific. I make them specific because I know that they are goals that are attainable. The plans include losing the weight I have gained this winter, beginning an exercise program, writing a book, walking a 5k next year. I know these plans are obtainable based on my health right now. If something happens to make fulfilling these goals more difficult, I will just adjust my thought process and come up with some new goals to meet me wherever I am at.
Some of my plans are big dreams that I honestly don't know if I can obtain. These are things I want for my life and although they aren't possible right now, I don't want to assume they will never be possible. Dreaming is one of the ways I stay positive. It helps me feel alive! It gives me hope! If I were to allow myself to doubt or worry, then I'd sink into a dark place where I don't want to be.
Sometimes, when online, it's easy to worry and doubt when you hear the heart wrenching stories of others who are suffering worse then I am. The Lyme World can be a world that feels hopeless, and with good reason. I don't want to ignore these stories, I need to stay grounded in reality so I have a clear picture of what I am dealing with. I do two things that help me not succumb to fear and depression when walking through the World of Lyme.
1.) I recommit myself to helping others in every way I can, both now and even more so in the future. These people don't need my pity, they need my encouragement, and they need help both from me and from those around them. I want to help others with lyme on a personal level, but also at a community wide level in helping to change how our friends and families understand what it means to have Lyme Disease.
2.) I make sure I read success stories. There are many who have been sick with lyme, and who have recovered and come out on the other side. I remind myself of these people as often as I can. It helps me stay focused on HOPE.
Bottom line, I REFUSE to be defeated! Call it stubbornness, focus, perseverance, or just plain denial......whatever it is, I'd rather live my life this way, then live as though I'm just waiting to die.
You can take my body but you can't take my spirit!
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