advocating from within

advocate [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb, -cat⋅ed, -cat⋅ing, noun- a person who speaks or writes in support or defense of a person, cause, etc.

Living with a chronic illness can be challenging on so many levels. In addition to being physically and emotionally compromised, we have to step outside of it all and advocate on our own behalf.  Depending on the symptoms of the day and the emotional state that goes with them, it is often impossible to make the right decisions. Especially when we can’t always see clearly what is happening. And while many of us have family members who advocate for us, they too are experiencing the emotions of our coping and may not have a clear perspective of what needs attention. I’ve always said that in a perfect world we would all be assigned a “primary care advocate.” A person would guide us through our needs and provide solutions in a way that only someone not in the midst of the coping can do.

Last week I visited with my dear friend Linda who is fighting cancer and saw first hand the importance of having an advocate. We spent good time together, recounting special moments and creating new ones. I had no specific agenda for the trip. It was great to be with her and offer more than virtual love. I held her hand, kissed her face and listened to the messages that can’t be sent via the phone or computer.  I hoped to make her laugh and she me as if there was nothing but the two of us in the room.  For this to happen we would need to find moments for her to be pain free. Linda goes from serious pain to happy and adorable in the flick of a switch. It’s incredible to watch. Of course the same happens in the reverse when that antagonist re-enters the room.  This battle is constant. There was never a long enough window of time for her to think clearly. With no opportunity to look at the big picture, how could she represent?

I spent this first day attentive. Watching her press the button to send an extra surge of meds to relieve the increase in pain. All the while working hard to stay awake, get rest, care for her little one and eat. The latter of which is the hardest. She desperately needs to put on weight, but eating is very painful.  I kept reminding her to hit the button at the slightest discomfort and as a boost before and after meals. It’s amazing how hard it was for both of us to remember. Her expression was the prompt, but we looked for an earlier cue to preempt the pain. It was already clear to me, how my being there was helping beyond the distraction of good company. But it wouldn’t be until the next day that I could really see the role I filled so easily.

Monday morning I joined Linda for her Dr.’s appointment. We were quite the pair. She – walking gingerly with her pain pouch in a bag over her shoulder, tube running in. Me- with my walking stick, deliberate in my navigation while holding her arm. Moving around the hospital, it was unclear who was supporting whom. Of course the reality is we were both giving and receiving in complementary ways. Like the last piece in a puzzle that didn’t look like it would fit, but once in place completed the picture perfectly.

When we made it to her meeting with her nurse practitioner, Linda reported on her experience since her last visit including her pain level and how often she needed to hit the button.  I was surprised that her report didn’t match what I had witnessed the day before. She is a stoic, strong woman. I’ve watched her endure a lot more than most could handle. At first I hesitated to interrupt, but as the exam continued I knew I had to say something. When I did, her nurse suggested that they increase the pain meds and as Linda resisted, I saw myself.

I know the feeling of not wanting to increase my drugs for fear of the long-term implications. The thought of being reliant on medication- pills or liquid being pumped into your veins for the long haul is not an easy concept to digest. In Linda it looked more like a fear of submission or failure. So I questioned her nurse to say what I hoped Linda needed to hear. They were the words that soothed me when I had a similar struggle. “What dosage are other patients using?” As her nurse counted into double digits, I saw Linda’s face calm a bit.  It helps to have perspective. I was her advocate, moving in to that role with ease. A role that I could never be for myself.

During my most recent MS attack, my husband and I were discussing some “what now” options. During that conversation he told me things that he never had before. Apparently he had been living with a great deal of stress in his concern for me. I was commuting to NYC, working a full day at NYU and coming home too exhausted to function in a meaningful way. My worn-out self did not the best mommy make. He never mentioned his concerns before because he didn’t want to take the wind out of my sails. And my tendency to persevere in spite of it all prevented me from seeing the reality playing out in front of me. I’m glad Keith was there to show me what I needed to know. Looking back I realized that this wasn’t the first time I needed someone else to point out what couldn’t be clear in my mind.

It took way too many times kissing the NYC streets for me to recognize that a walking stick would help me to navigate my world more safely. The foot-drop combined with a shot of dizziness is the perfect cocktail for scraped knees and a humiliated ego. But I always assumed that if I needed a stick, my Dr. would tell me. This was my frequent retort to my mom’s gentle (yet sledgehammer-like) inquiries.  A walking stick felt like a progressive failure to me. As I waited for my doctor’s recommendation- I endured more falls in denial. When Keith suggested considering it, I couldn’t ignore the evidence anymore. I knew intellectually the benefit it would provide, but I feared how it would speak to me, about myself. I didn’t know who I would be with a walking stick and I was not interested in meeting that person. Keith helped me move past it. He suggested that I treat using the stick as a social experiment. (Just How Nice are Those New Yorkers?!) And that concept empowered me to go forth.

The irony of this whole scenario is that when I went to my doctor’s office shortly after this decision, he questioned why I was using the cane. He said based on my exam there is no evidence of need. I couldn’t believe something that took so much emotional fortitude to accept was being questioned by my doctor -who, btw is a premiere MS neurologist worldwide. Nothing showed up in my exam to indicate this need. Of course he couldn’t recreate walking 3 blocks, become fatigued and dizzy and have my foot-drop kick in. I guess more detailed questioning would have unearthed this evidence.  But as they say, the doctor treats the disease and the nurse treats the person. After that appointment, I witnessed again, what I already knew.

With 21 years of MS under my belt, I like to think I’m an effective advocate for myself.  In many cases I am. Though my mind must play a fragile balancing act. And as I struggle to navigate past the information that fuels my fears of  “what if” I know I’m running the risk of missing something that could be very helpful. With Linda I felt inexplicable strength based my own experience in the doctor’s office. Knowing what my needs are, I easily stepped into the role of advocate for her. And in her, I saw myself. I was that patient – from the outside looking in and I knew exactly what to do.

9 thoughts on “advocating from within

  1. Nadja Tizer says:

    I really enjoyed reading this post. It was very interesting and informative.

  2. Amy, I believe this essay is a poignant reminder of the power of a loving friendship even in the most distressful situations. The role of an advocate/best friend is unique, as is the role of an advocate/husband. I can see how learning to advocate for yourself helped you to advocate for Linda when she needed an outsider’s view of her pain management. Of course no ordinary outsider could have filled this role. It had to be an observer she loved and trusted. Similar to mates who must sometimes advocate for us – to us – so that we see our situation as it really is.

    I’m very happy your role as Linda’s advocate was so successful. I’m glad Keith’s role as advocate to you helped you to make the necessary adjustments, and I’m encouraged by your ability to advocate for yourself as an ongoing concern.

    I have learned that advocacy from within the family, ourselves and our friendships is vital when chronic illness strikes. I have also learned from this essay that it must start from within to have the optimal results. I suppose we have to learn to help ourselves before we can effectively help others. Glad you learned that by the time you went to Linda’s appointment .

    Great essay, thanks for getting me to think about advocacy in so many ways!

    Dar

    Reply

  3. Connie Nichols says:

    Very well said, Amy. You have codified exactly what so many of us have learned.

    I am glad you are able to spend time with Linda, and I suspect your love and presence is a huge healing force. She is in my thoughts, and I pray for a win in her battle with the ugliest most hateful disease on the planet.

  4. Andrea Wulkan says:

    Amy – your story and your friendship really touched my heart. I especially related to your struggle accepting the walking stick. I too struggled with that and then, a major struggle when I realized I needed a scooter to continue to work. We look upon these things as failures – but I come to terms with it by deciding that in using an aid, I am advocating for myself and enabling myself to continue to live independently. I don’t like it, but I accept it.
    I use my scooter at work and for any distance I need to walk more than 2 blocks. The falling and the fatigue just weren’t worth it anymore. I found that most people are very solicitous of me when I’m in my scooter – but not so much when I’m using a cane. Interesting. The scooter lets also lets me pursue my avocation of choral singing since some venues require walking some distance from backstage to the stage.
    I loved how you helped Linda ask the questions she couldn’t ask. We all need a friend like you. Bless you and Linda in this holiday season.

    • aglol says:

      Thanks Andrea~ It’s good to know that this experience connects not only through my expression of a deep friendship that defies words, but also on the reality of living everyday with MS. And thanks for sharing your experience making these transitions too. If you care to read about my story about the scooter…. maybe we’ll relate there too~ https://mslol.wordpress.com/2009/07/14/dependence-day/
      Thanks again for your response…
      ag

  5. Sue Stastny says:

    Amy,

    This is my first visit to your blog and I am quite pleased with your content. I have been diagnosed since 2001. I had my ‘issues’ regarding using my stick. I quickly came to the following theory for myself.

    If I draw a horizontal line; one endpoint I label ‘pure vanity’ – meaning I have no use for my stick; I feel reasonably strong and/or I am in a social setting where I am just not in the mood to address the questions/’looks’.

    The opposite endpoint I label as ‘Absolute Safety’ – meaning I am using my stick; I feel weak, fatigued, cranky, etc. & I need to get to my next destination. I’m using the stick, no matter who or what has to say about it.

    The midpoint of my horizontal line, I label ‘Sanity’. If I feel that I would be more stable on my feet & more confident walking in public places; I use my cane.

    A Vanity endpoint example; earlier this summer, my mom passed away. At the wake & funeral, there was no way I was going to pull out the stick. My immediate family & close friends know that I have MS. The other people that attended the wake/funeral probably did not know about my alter ego; MS Sue. Believe me; I was in no mood to explain my stick usage.

    A Sanity midpoint example; I am still able to work fulltime. I take a train to & from the office. To navigate my way through the rush hour pedestrians in the train station; I faithfully use my stick. Over the years, I have made a couple of observations. Other commuters will give you more space when they see me with my stick. Also, the other commuters are much more tolerant of my extremely slow pace.

    Absolute Safety example – no recent examples spring to my mind. Maybe I have become a MS Daredevil – I think not. The only example that comes to mind is if I come across some unlevel terrain; like a sidewalk that sorely needs replacing, I will whip out the stick.

  6. Jill says:

    Amy,

    I just read this and savored each beautifully placed word. You are very wise. And I am very, very sad about Linda.

    Love to you,
    Jill

  7. Lyn DiSanti says:

    Amy,
    I’m not sure I know enough words to express how deeply your blogs have impacted my life. These essays are the clearest windows into the beauty of YOU. I am honored to have had our Life-paths cross in college. Thank you for sharing your life with us and helping me to be a better friend to those in my life. You are such an inspiration!
    Lyn

  8. I am so sorry to hear about Linda’s illness.

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