Tuesday, April 3, 2012

Does your illness define you?

As I added chemotherapy in the form of Methotrexate to my drug cocktail last July, I watched my nails break off, my hair thin out, and bore witness to an awful inability to keep food down. My RA also rebelled. I was back at the point of crawling to the bathroom in the morning, then staying chained to what used to be a comfy couch for the rest of the day. I lost weight because I couldn't get to the refrigerator for lunch, let alone an evening beer. I watched the house grow filthy around me and the lawn stretch up to my calves. I watched my perennials wilt from the summer heat, tomatoes drop off the vine and rot. I saw birds and squirrels go unfed. I couldn't brush the cats. I couldn't prepare dinner for my husband who was working hard to provide for us all day. I could do very little from my shrinking universe except wait to be crushed as it imploded around me.

I broke down on my husband one hot summer evening. I was going to die. This illness was going to kill me. I would die of unknown and seemingly natural causes while he was at work one day, then the cats would gnaw on my fingers and he would discover my body, cold, bloated, and fingerless.  

Mr. Sunshine calmly sat down in front of me, held my shoulders and forced me to relax (sort of like coaching an upset 7-year-old). He said that I was getting too wrapped up in my illness and the worst-case scenario.  He remembered me for who he married and had known for almost ten years. That woman was vibrant, charismatic, and loved life. The person I had become while wading through my illness and losses was someone withdrawn, miserable, and weepy. 

At the same time, my mother reminded me of her aunt. As Aunt Elinor became more stooped, and slowed with age's natural progression, she commented to her niece on the beauty of the paving stones while hobbling into church one summer morning.  Mom thought that instead of focusing on the inevitable decay of things around me as they went untended, I ought to refocus on the little things that are marvels in and of themselves.
These were powerful words coming from my loved ones. I had to get over the self-created obstacle that my family, friends, and coworkers didn't fully appreciate my constant struggle with being comfortably alive. They didn't have RA, how could they understand? As I thought on their words, I realized that they may not be experts on having a chronic and debilitating illness, but they were experts on me, and experts in coping with a loved one who has such an illness.

So perhaps what I needed, besides a gentle kick to the pants, was a reframing of my perspective. I realize now that a primary difference between myself and others around me, is that I am a bit more aware of what my body's decline with age will be. Of course this is based off the hopeful and arrogant assumption that I live into ripe old age (you must be prepared for anything in this life, because it is all beyond our control). I took this thought as a sign I needed to honor myself and learn more about what I required to feel good again. I certainly wasn't going to get that by comparing myself to what I'd lost.

I mindfully practiced Mom's advice. On terrible days, I looked at stones. Or admired the view from my dentist's third story window. I noticed how my cat has a chin that is neatly divided down the middle between two different colors. At first this was like pulling teeth, but in time became second nature, and I started feeling peaceful, despite the pain of living moment-to-moment.

My dad offered the advice that rounded it all out for me. "Don't change who you are because of this illness." He was building off what my husband had said.  At this point all the minor shifts in thinking amassed into something larger, and it clicked.

I enrolled in graduate school the next day.

It took months of tears and pain to get to this level of acceptance. I did much soul searching, the likes I'd not seen since the days of angsty teenage-hood. Stuff was dark and scary and sad for much of 2011's summer. The thinking forced me to reach out to those around me, those who supported who I was before and after illness onset. Their words and my reflection pushed me back onto the path of healing, even on the days where my body was still a ruin.

I cannot emphasize enough the importance of reaching out to loved ones and  professionals when you are coping with a new diagnosis. I know a few women who have elected to hide their heads in the sand, refusing to get to know this new part of themselves. As a result of the ignorance, these women have engaged in terrible risk-taking behaviors. I can understand that self-destructive side, wanting to feel alive and validated, normal if at all possible. The unfortunate effect to that is: if you don't reflect on your actions, nothing will change. You won't get better. And by ignoring your illness, you may just get worse. Would you ignore someone you just met? Especially a much younger person?  A child? I waffle between considering my RA a demon and a small child crying out for attention. When I think on it that way, I am much more likely to want to address whatever new bodily issue is popping up at the moment.

On the flip side, other individuals who have changed due to illness have done so from a state of power. They've taken the challenge offered by chronic illness' grasp, and risen to the occasion. That's a good thing.
Know yourself. No matter how terrible you are feeling, there is a light when you look for it. Do not let the disease own you, mutate you into something terrible. If you are getting sucked past a point of no return, seek help. I am speaking from a place of understanding, I've been there, many of us have. When you find that light, make it your own, no matter how small the spark.


  1. Very beautifully written and I can tell, truly from the heart of experience. Your wisdom is something that is glistening like those stones upon this page. Thank you so much for sharing your story with us.

  2. Wow Deb,
    You consistently have beautifully written responses. :) Thank you very much for taking the time to read! Hopefully the words will help others down the road...

  3. Sunshine,
    You have come such a long way. Know that we have all been down that road. I have learned that RA limits me only if I allow it to. It took a lot of soul searching and support from loved ones but I got to where I need to be. The first year and even into the second was a hard time for me. Now looking back, I came out of that experience so much wiser and so much stronger than I ever could have imagined. You are absolutely correct about that light. There is always light at the end of the tunnel but it is hard to see when we are wallowing in self-pity. Good advice and thanks for sharing your story.

  4. Lana,
    I think it is important to mention that coping with something like this does take time, and we all have good days and bad. I am glad to hear you relied on the support of loved ones. Thank you for reading!

  5. What a wonderful post - I think many of us that have had RA for a long while had these same moments that you describe here, although I'm not sure that I could have put it so eloquently. I definitely have more of an awareness of every little thing and it is a balancing act. But I'm doing pretty well with it and I hope you will too.

    Thanks for the wonderful words.

    1. Leigh,
      A balancing act is the perfect way to describe this. It's like having two feet in different worlds. Good luck on your journey Leigh!