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  • When Resilience Is the Norm

    Posted by brianna-albers on April 30, 2019 at 11:00 am

    Good news! We were able to get the blood drawn. It took several pokes—the nurses kept shaking their heads like they couldn’t believe how terrible my veins are—and there was some pretty triumphant cheering when they got what they needed, but we got it done! I’m just waiting for the labs to get sent to my dermatologist, which, as I’m sure you all know, is a feat in and of itself. Fingers crossed it all works out!

    The nurses told me several times how great I was doing, which struck me as odd. I’m not the biggest fan of bloodwork, but I’ve gotten used to it over the years. It’s not really something that crosses my mind anymore; it’s just an aspect of my daily life, annoying and ridiculous but ultimately the norm. It’s all part of SMA, which is to say it’s all part of my daily routine. I actually wrote a column about it, which you can read here.

    Do you ever have moments where you realize just how abnormal your life really is?

    brianna-albers replied 5 years, 1 month ago 3 Members · 4 Replies
  • 4 Replies
  • deann-r

    April 30, 2019 at 4:00 pm

    Totally get where you’re coming from. I’ve posted several times how much I hate getting blood drawn. Sometimes it frustrates me when they send me home to hydrate as if that’s the magic trick to finding my blood. I’m sure it might help, but odds are it’ll still take multiple pokes. I think they send me home to alleviate their stress levels hoping the next shift will be on when I come back. Somehow they eventually find it, and like you I rarely complain as they’re digging around. Often I get the “such a good patient” comment or variation there of. Mom and I talked about that in the elevator last time. What am I supposed to do? Scream, cry and throw a fit? Believe me I probably am…in my head, it’s just not worth the effort or embarrassment of showing it externally.

    I guess I struggle with the term abnormal. In my opinion the difficulties we go through or get used to are not an indication of having an abnormal life. Everybody has different struggles in their lives. For me if it’s a few extra pokes to get my blood so be it. I don’t have to like it, but I have to deal with it. I often say that strength comes from within. Getting blood drawn is an example of that. It takes my inner strength to suck it up and get it done. Sometimes we just have to show our strength in different ways. Does that make me abnormal?

    • brianna-albers

      May 2, 2019 at 6:27 pm

      That’s a really great point! I struggle with the concept of normality as well, and really only use it when I’m trying to get my point across 😂 But yeah, I agree that everyone is to a certain extent “abnormal” – we’ve been conditioned to view a certain kind of life as normal when, in actuality, life in its purest form is super diverse! Which is why I try to celebrate my “abnormality,” even when it’s hard.

  • ryan-berhar

    April 30, 2019 at 8:13 pm

    I feel abnormal more often than not. One example of this—even among other SMAers, it seems —is the fact that I live at two different houses. Definitely unusual.

    • brianna-albers

      May 2, 2019 at 6:29 pm

      I have to admit, I’ve never heard that before! But we all have things that make us stick out, I think, even in a rare community like this. It’s just hard to remember that sometimes.

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