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Monday, June 18, 2012

"Nowhere" vs. "Now Here"


How do you know when you are "nowhere" or "now here"? Is there more than just a little space of difference between the two words?

In the last couple months since I have finally stopped my chemotherapy pills and moved on to a different drug for my maintenance medication, I have been waiting for the moment when I can finally say, "Today I am in remission!"

The medical dictionary defines "remission" as "abatement or subsiding of the symptoms of a disease." I know some people who are doing well with their illness, but refuse to call themselves "in remission" until they are off all medications completely. As for me, I call it "remission" when I can live my life freely uninhibited by symptoms or traces of my illness. For central nervous system vasculitis, there are many people who are unfortunate to be living with traces of its neurological symptoms, such as memory loss, trouble with word finding, and other cognitive abilities. I have been blessed to not have any permanent side effects of my illness since my diagnosis, despite all the close calls in the ICU.

I have started looking up jobs online recently, preparing for the day when I feel like I am fully prepared to return to "where I am supposed to be" at this point in my life. When I was seventeen years old - newly diagnosed and just recovering from a coma - I did a month of occupational therapy. Some people think occupational therapy is only for people with severe physical disabilities..for example teaching someone without any hands how to put on their shoes. But people who have just had a major illness flare up can need occupational therapy too…they need to know how to live within their "occupation" with this new illness, or new onset of symptoms. Occupational therapy helps people try to return to a new "normal" with their illness. At 17 years old, my "occupation" was simple - I was an adolescent, a student. But at 24 years old, asking myself what my "occupation" is becomes a more difficult question. I am a young adult, a wife, a university graduate.

The last month has been very busy for me. My husband and I just moved to a new home and I spent a lot of time packing and unpacking. During this busy month, I have had two weddings where I had been the coordinator…and if you've never been a wedding coordinator before, take my advice and always wear comfy shoes even if it doesn't really match your pretty dress…you do a lot of running around!

After each wedding, I have awoken the next day exhausted…dedicating myself to a day of rest. It makes me wonder, "Am I really ready to pursue a full time job in human services? Am I ready to be on my feet forty hours a week? Am I ready to take on the emotions and pleas of the people I will serve?"

In the book "When the heart waits" by Sue Monk Kidd, Kidd mentions that we all need an adjustment time…a time for wobbly wings. Butterflies don't just burst out of their cocoon, soaring to the sun…they need time to integrate to the changers around them. We just need to be patient with ourselves and with our wobbly wings. 

During the last couple of months, I kept thinking that I was "nowhere" - that I was stuck in a limbo between being sick and being in remission. The word "almost" popped up a lot…I am almost healthy, almost energetic, almost ready.

While I was "nowhere," I spent so much time reliving history or devising the future - that I forgot to simply enjoy where my life is at that moment…even if my wings were wobbly. A popular song by Bon Jovi once said, "Right here right now, is exactly where you're supposed to be." I realized I needed to stop thinking that my life was going "nowhere" and that my life is "now here." I need to take advantage of this time in my life…and so during this time I refined my homemaking skills, started this blog, started an online support group, baked cupcakes and wrote encouragement cards for people in the hospital, and decided to get back in full touch with God.

I can't pinpoint the exact day I went into remission when I was 17. It happened sometime during my first semester in university, when I realized I was living independently, my energy was full, and my "occupation" was unhindered by my illness. Remission didn't happen overnight, it happened to me while I was living my life…and came as a lovely gift.

Five years later, I am going into my third round with remission after my third flare up with my illness. I realize that you can't just wake up one day and declare that you are in remission. Waiting to say you are in remission is like waiting on a kettle to boil on the stove. You wait by the stove for it to whistle - saying that it is ready. Eventually you decide to do something else with your time instead of standing by the kettle. When you are not looking, the kettle starts simmering, smoking, and then comes to a rising boil. Finally, the loud whistling lets you know that it is ready.

Remission happens when you are still adjusting to your wobbly wings. Remission starts to simmer as you step out of your comfort zone a little at a time. Remission rises to a boil when you test your strength and find that you can accomplish more than you initially thought. And remission gives you a loud "whistle" when you realize that you are already "now here."

Remission itself is a journey of transformation…from the cocoon to wobbly wings…from "nowhere" to "now here." 

6 comments:

  1. Thank you, Chelsey. I am in the same boat, figuring out where my life is with being ill and such. I like what you said about living in the now, instead of the future or the past. I find myself doing that, if only frame of mind is what I call it. I will have to sit down and figure out what my life is like NOW.

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    1. Thank you for your response Jamie! I think it is so important to remember how to live in the "now" - i think i have wasted so much time before stressing about the future or regretting "what could have been" in the past. I figured I should appreciate where I am right now in life too...i don't think i appreciated the "now" moment as much as I should from years ago, and I don't want to look back on this moment and see that I had missed out on opportunities to grow. So here's a toast to the both of us..figuring out where this boat is heading in our lives and enjoying the ride :)

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  2. Very happy to read of your remission. All good things coming as always!

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    1. Hi Amy - thank you so much for your post! I am happy to be getting better with my remission. ~ Blessings

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  3. Hi Chelsey, I just read your story and this blog for the first time today. How wonderful to be discovering God's truths at such a young age (oh, my word I can't believe I'm saying that. I'm not that old am...Well, I'm old enough to be your mother). Anyway, I too am looking for my newest normal. I changes daily and we have go with the flow. Today is a gift; that is why they call it the present. I hope you continue to enjoy the blessings of the Lord. Peace and better health I pray.

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    1. Hi Suzy - thank you so much for your comment and I am so glad you found my blog and that it has encouraged you. I feel blessed to have discovered these truths earlier on in life and am really happy to share them with others. You are right - today is definitely a gift and it is something that I have learned to appreciate over the years..to not spend too much time thinking "what if" about the past, and to not stress out so much about the future.

      Hope and blessings to you as you also find your new "normal"

      ~Chelsey

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