Sunday, November 25, 2007

Putting Yourself on Your Own List

There is not really a way to describe what it is like to live inside of a body that is never really quite right. Trying to describe what it feels like to know what it was like to be healthy, and to now live life with a chronic illness, is what I suppose it would be like for someone who is now blind, but once had sight. Difficult on some days, impossible on most. But, when people ask me, and I sense that they earnestly want to know, I describe the way that I feel as having the flu, all of the time.

When this illness came on several years ago for the second time, I fought like hell to deny it access into my consciousness. I told myself that I was still recovering from another virus, that I was run down, that I was exhausted from raising four small children. I lied and lied to myself until finally a doctor looked me in the eyes after six long months of battle, and said to me, "Debbie, you have Fibromyalgia and there's not a damn thing I can do about it." Deep down in my soul, I knew it had returned. The cellular memory of this illness is not something that the body soon forgets, even after a blessed remission of fifteen long years. My denial came from the fact that I was a busy, dedicated mother, wife, daughter, friend, volunteer, etc., and I did not have time to be sick. I had recently become certified to work as a Spiritual Care Volunteer at our local hospital, visiting patients as a Lay-Chaplain. My girls were all in school, and I read about the need for volunteers. It was never something that I had ever thought about doing, but when I read about the position, something inside of my heart spoke out and told me that I was supposed to do this. After three months of training, I was on my own. I went from room to room, visiting with very sick people, people who were often lonely and scared. I sat with them for as long as they needed me to, each individual requiring something different when I was with them. I spoke with their families, I listened to their stories, I laughed with them, I held their hands. Our visits would often end with my offering a non-sectarian prayer, and most accepted. Something that I learned during that time, is that if I could offer myself to be fully present for someone, totally and without any other distractions, that was when the absolutely purest form of human connection could take place. Often, when I held hands with someone and looked into their eyes while saying a healing prayer for them, their immediate reaction would be tears. Interestingly enough, if I was to cause someone to cry in most any other circumstance, I would feel terrible, but the tears of these sacred moments left me feeling fuller and unmistakably connected to each person, to the Universe, to God. I was lucky enough to be able to hold on to my position as Spiritual Care Volunteer for more than three years. I did this while my own body weakened, and fought me. I did it until I could not do it any more without putting my own health into more jeopardy.

For a very long time, I felt guilty for giving up on something that I loved doing so much. I told myself that I would go back to volunteer at the hospital as soon as I could. That was until I began to honor myself in the same way that I had honored and respected the needs of my patients. I knew then, as I know now, that there was no way that I would ever begin to feel better unless I started paying more attention to my own needs. Both physically and emotionally, I was allowing myself to deteriorate by paying closer attention to the needs of everyone else(including strangers), than I was to my own. I began to pare down my life into things that were absolutely necessary, and things that I could release. I continued to evaluate my obligations until I understood the things that were truly important. I put my daughters and my husband at the very top of my list, with myself as a close second. That was about three years ago. Now that my girls are getting older, the physical demands of being a full-time mother are becoming less. I am slowly, very slowly moving myself up to an even higher place on my list. As I do this, my family becomes a bit more independent. They start to view me as someone who also has needs, and who requires time to grow and heal. We are all growing up, together.

Thanksgiving just passed, and so our family traveled up to our Mountain home together. We had time to express our gratitude for each other, and for all of the other wonderful people and things in our lives. We spent time alone, together. This is something that I think keeps a family strong and vital, regardless of how large or how small that family might be. But yesterday, my sweet husband and my angel daughters gave mom what they knew she needed. They drove down the mountain, and left me to renew and refresh by myself. And so, I wanted to share the photo of the fireplace at the top of this page. My body is still physically ill, but my spirit is growing stronger. I am learning to advocate for myself, by admitting that I must have time alone, sometimes. I am taking the time to honor my own need for quiet and for stillness. I will be going back home tomorrow, but until then, I will sit quietly in front of this fireplace allowing myself the space that I need in order to be more for everyone else, including myself.

May you find a quiet corner in your life, where you can balance your own needs for stillness and connection. May you always give as much as you can, while remembering that there must always be something left for yourself.


Wonderful World of Weiners said...

My Mom suffers from Fibromyalgia as well. It's hard to watch someone you love have pain when there's nothing you can do.

I'll keep you in my thoughts...


Debra W said...


You are a caring daughter just by understanding your mom's pain. I will keep her in my thoughts, as well.

Thanks for stopping by.


Heidi Malott said...

Thank you Debbie for taking the time to visit my blog and leave the helpful information, and for the kind words about my paintings. I am trying your suggestion. You are in my thoughts also. (I moved your comment to my inbox, because I haven't told all the family my news yet, sorry to do that)
Take Care, Heidi

Debra W said...

Oh Heidi,

I hope I didn't spoil the surprise! Thanks so much for stopping by. I hope that you find some relief. Let me know if the sea-bands help.


KellyJean said...

I am at a loss for words. What a powerful post. Your words have touched me in a way I can't explain and at just the right time. Thank you.

Debra W said...


Thank you! I hope that you can find some time to allow yourself the space that you might need, while still being a wife and a mother.

Be well,

Suzanne said...

Hi Debbie,
I actually just found your blog in a round-about way, while I was leaving my own comment on the "nie & you blog". The comment where you mentioned chronic pain caught my eye (I have fibromyalgia).
Reading your posts on the subject, I just wanted you to know that I can really relate. This illness is brutal and very hard for other people to understand... and that in itself is another tough aspect to deal with.
It's very life-altering when your body lets you down, and people don't "get it" that the chronic pain of fibromyalgia means pain every single second of every single day.
I came to the same realization as you in regards to listening to my body and really making sure I was taking care of myself. I've had this illness for about 18 years (diagnosed officially 13 years ago) and have done a ton of research on it since then. I've found one of the most up-to-date sites is
I'll continue to check in on your blog, it is inspirational to see someone living well despite fibromyalgia.

Ontario, Canada

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