Tuesday, April 3, 2012

Admitting Defeat

Those of you who do not have lupus or any other chronic illness probably read the title of today's post and are ready to give me a pep talk. Those that do, however, are already nodding their heads in recognition. No, this is not about positive self–help–thinking–optimistically–etc. It's about coming to a point where an activity is no longer possible for a patient. Note that I say possible; we are talking about being physically capable of performing  whatever activity is in question.

 This is one of the harder things a lupus patient has to do, and any time we do admit defeat we do so hoping and praying that it's a temporary setback. We also mourn for every activity we can no longer complete. It's been a while since I've seen “The Simpsons'” episode about the multiple steps of grieving, but I can tell you there's a lot of bargaining, denial, anger, etc. that goes on every time another activity is taken away from us.

 For those of you who still aren't quite sure what I'm talking about, I offer the following examples of times when I have personally had to accept defeat:
  1.  Permanent Handicapped License Plates: now to anyone else, getting permanent handicap license plates is a major win. It means, after all, that you can park pretty much wherever you want without getting a ticket. Some places with valet parking will offer the service for free if you have handicapped license plates. Universities can't charge you to park on campus. Sounds pretty sweet, right? Well… yes, but by filling in the forms and getting my doctor to fill in his, I was admitting that I am no longer capable of walking across a sunny parking lot. More than that, I was admitting that I am unlikely to be able to do so in the foreseeable future. These are, after all, permanent.
  2. Getting a Cane: this one's probably pretty obvious. Walking with a cane is something we associate with age. I was really hoping to at least hold off until my thirtieth birthday before getting a cane, but that was not to be. What forced me to admit defeat was the fact that I kept falling down. You can only fall so many times because of vertigo before you really hurt yourself, and I knew it. But I don't have to like it.
  3.  Buying a "Gentle Yoga" DVD: I used to do power yoga. I used to run every morning. I used to be a training black belt. But that was twenty or 30 pounds of muscle ago. Yesterday I fell down because I wasn't strong enough to stand up from a sitting position. Having to start out with basic “peace and tranquility” style yoga is to me a slap in the face with how much I've lost over the past two years.
  There are many, many ways in which a lupus patient may have to accept defeat. Every patient has his or her own lost battles. And the proceeding are by no means even the tip of the iceberg in terms of what I've had to give up. They are just a few representative examples of things that are far more difficult psychologically for a patient than anyone else might expect. Some things may not be logical; people rarely are, after all, very logical. But be aware that these things exist, and that they go along with the “dying/being undead” feeling I spoke about in a previous article. There are untold examples of things or activities that we give up only with great pain.

Note: My wrists are still not operational, so please forgive any voice recognition software–mediated typos that I missed!

Image Credit: http://www.ottawacurlingclub.com/_Images/CMS/clipart-tear.gif


  1. No pep talk from me Sam.... I get it. I have little "reminders" everyday of all I have personally lost. I know yours are different, and much more limiting and much more visible.... And I commend you on your strength, and the fact that you're writing inspires us all....
    Lupus, Type 1 diabetes, and Celiac Disease. Everyday, every hour, i'm reminded... So again, I nod my head in recognition, and stand beside you, and if you need some help to stand, lean on me. I'll lean on you too <3

    1. Like the stones of an arch. Individually we fall, but if we all fall on each other the arch stands. :) I didn't know that you have diabetes and celiac. I may have celiac; I certainly have a lot of the symptoms, but by the time they did the blood test I'd already been gluten free long enough to cause a false negative. Eating any wheat at all certainly brings GI problems and major migraines, though, so I can at least sympathize with you there... and that's another thing I hate to admit. I lived in France. I <3 bread. And now I know I'll never be able to waltz into a boulangerie and order a croissant au chocolat aux aumands ever, ever again. *sobs*

  2. I was having some warranty work done on Dad's car one time, was told to wait, couldn't stand being set upon by the salesmen (I tried) and so retreated to the service manager's tiny office. I explained to him about the sun thing.

    He asked a few questions--and then I saw the grief in his face for me as he realized all the things that meant I'd had to give up.

    And then he told me about his fourth and youngest, who had been diagnosed with a major mental illness, whose life would never be normal nor what they'd thought.

    And then what surprised me is that he cheered up and told me, "So you make new paths!" And then, thinking it through out loud, he half-asked, So you do your shopping at night?


    It meant so terribly much to have a complete stranger who knew enough and thought it through enough to begin to understand, and that it was important to him simply because I was a fellow human being in front of him.

    People like that help our worlds go round. May you meet many of them and often.

    1. I found that people don't have to personally have an illness to be able to understand. That being said, the people who understand best generally have experienced illness or tragedy in their family. One of my closest friends has a brother with Down's syndrome. My priest lost a grown child. People who've seen such major challenges tend to be sympathetic towards others.

  3. Excellent article. Well understood!