Lone Cyprus

Lone Cyprus

Monday, February 8, 2010

My point of view

Nearly three months have passed since I last posted a blog. Many times I've sat down to write or post something I've written and decided to wait. Tonight my heart is tender and sore. I don't want to depress anyone, I just want to stop holding things in. I want to say what I want and stop worrying so much about whether you'll understand me or see me how I want you to. The truth is, you don't have to read this. I'm totally ok with it. But for reasons that I don't feel I have to explain, it helps me to write and share. So I am.

A few weeks after I was rejected for the stem cell transplant, I went back to my doctor in Nashville and started a collection of medications. Two weeks ago I had my three month follow up. I wasn't better. This is/was no surprise to me. I don't feel better. I can't even tell you I feel the same. So the answer is higher doses of some of the same meds and adding a few others. I'm up to 10 pills a day and if you know me at all you know I loathe even the idea of swallowing 10 pills a day. And frankly, nothing makes you feel more a part of the geriatric community than a counter full of prescription meds and a pill sorter.

Even bigger than this, more than all those pills, I've been so caught up in looking back over the past 15 months or so. I sit and I think and literally I almost can't believe what has happened. What IS happening. Just in this time, I got a terminal diagnosis, I've had chemotherapy, I bought into the hope of a stem cell transplant and remission, I fundraised over $80,000 in my tiny community, I endured the most terrifying and devastating rejection of my life, and since have been trying to figure out how to be ok with whats happening to me and watch while the lives of everyone I love continue on around me. What an awkward, painful place to be. Amazingly, this past year has been both a curse and a blessing. Never have I known love or pain like I have these past months.

In all my reflection there is a rather dominating theme in my mind. I've been forced and for the first time in my life able to think about my end. Death is uncomfortable and no one likes to talk about it or spend much time at all thinking about or considering it. But lately I've been thinking that maybe we're all missing out on something. This may not be true for everyone but in general, most of us spend our whole lives pretending we'll never die, or just trying not to think it will ever really end. In doing this, I feel like we're cheating ourselves a bit. I think we should remember that death is as much a part of life as birth. I think when we allow ourselves to consider that we in fact don't have forever, maybe we won't take things for granted so much. And maybe we would try harder to understand and accept and love others. Maybe we'd all be better if we realized that we really could be gone anytime and the impressions and legacy we'll leave mean something. I know this, I would never win a beauty pageant, I'm not a genius, or a stand-up comedian. I couldn't win American Idol or be cast in a toothpaste commercial. I don't own a mansion or designer clothes. I'm not hip or cool. I'm real average. But how I treat people and how I love them matters to me. How my nieces and nephews view their Aunt Beth is important. So I've been asking myself over and over, when I'm gone, how are people going to remember me? I think we should all think about it.

I don't spend a lot of time in my blogs talking about my faith. That's not because I've abandoned it and it's not because I'm trying to be cool and more mainstream either. My thoughts and feelings about it haven't been easy for me to express. I'm sure of this: I have a Creator and He loves me. I believe things work out the way they're supposed to. It's ok if you don't believe that. You don't have to. I do.

3 comments:

  1. beth, you're wrong. you are so ABOVE average it's not even funny. love ya, kid.

    mitzi

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  2. Hi Beth,

    I came across your blog through Lisa V's blog, heart and hope, and I just want to tell you I understand what you're going through and I often feel the same way. I was DX with scleroderma in 2/2004 and in the past year have had worsening lung complications including pulmonary fibrosis and PH. I'm 43, married,and have two children, ages 9 and almost 8. I often think about how they will remember me - as the sick mom who couldn't do this or that, had to take a lot of meds, and visit drs often or will they remember the good things like reading together, baking cookies, holidays, birthdays, etc. I also have a blog at http://suzsjourney.blogspot.com if you would like to check it out. If you would like to keep in touch, please let me know. It helps to connect with others who are facing this disease.

    Sue Borowiak

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  3. Hi, Beth,
    I am so sorry to hear about the difficulties you are facing. I'm 40, diagnosed with scleroderma in 2007, and have two boys ages 9 and 12. I'm also trying for a stem cell transplant and came across your blog. My blog is at http://holly-kfs.blogspot.com/ if you are interested. Your honest words really spoke to me and echoed a lot of what I often feel in those dark moments.
    Thanks for writing it down.
    Love,
    Holly

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