Salty Zebra

  It seems like such a simple question.  It's polite to ask, but we all expect the "fine" answer and a quick move on to the conversation. My answer is not so simple.  I can say, "fine," and have it be mostly true, but it wouldn't even begin to tell people how I'm doing. If I were to start with the most intrusive, it would be my vision. Having double vision affects EVERYTHING in my life.  What I see. What I feel.  Going from inside to outside, or simply through a doorway sets me off kilter.  It's like a whole new set of inputs comes rushing at me, often leaving me mentally swirling.  Terrifying to those around me, I recently started driving again.  I avoid driving after dark or in super stimulating places like our main street or a Costco parking lot.  I've stuck to side roads in the day time and I've done pretty good.  To my knowledge, I haven't even had any close calls.  But it's NOT like driving before my surgery.  I have to look at

      Cruising with a wheelchair seems simple, you're just doing what everyone else does, but on wheels, right? Wrong.  What may seem simple can actually be VERY difficult when you consider that even a small step will block your path, or the door to your cabin may not be wide enough for your wheelchair to get through. This is my experience on the Norwegian Encore, your mileage may vary.     The boarding procedure in Seattle was simple and being in my chair meant that we got to skip almost every line.  We did get the slowest, most confused check-in agent, but that's ok I think we still saved a bunch of time over all.  I didn't have any trouble with the ramps, but I made my husband stay right behind me when they were steeper.  I had a bad experience on a Carnival cruise in January with a ramp being too steep and I'm extra careful now!  There were elevators available pretty quickly any time steps were present and it was pretty easy to maneuver around the boarding area.   

  How are you doing?   TLDR; I’m fine… I’m good   I have been more aware lately when asked how I am doing. I often dislike that question as I know the expected answer is supposed to be something along the lines of, I am fine.   That is far from the correct answer, and it bothers me equally answering falsely as much as it bothers me when someone is asking me how I am doing and not actually caring how I am doing.   I believe that most people do not do this intentionally, just that it has become so habitual that it is part of who they are.   I challenge you to either stop using that introductory phrase, or to immediately follow up with an affirmation that you really do care how someone is doing. Let them know that you have a few minutes and really do want to hear how they are doing, and how you can at least pray for them. If stopping to hear how someone is doing is out of your comfort zone, why not try being honest when you are having a really crappy day, week, month and briefly let

      Last week my husband and I went on an Alaskan cruise.  The primary motivation was to see if I COULD cruise.  After my brain surgeries I've dealt with quite a bit of nausea, double vision, depth perception issues and overall disorientation. As I write this everything on the screen is overlapping on top of each other and dancing around to some degree.  We weren't certain whether the additional disorientation from the movement of the boat would do me in.  I am happy to report that it did not!     I actually rather enjoyed the movement of the ship.  The gentle rocking was very soothing and made me sleepy, that was my only side effect.  I did not have any increase in nausea and while there were people all around me using sea sickness bags I did not even feel the need to hold one - that says a lot after the last year!     The challenges I DID bump up against had more to do with pride and learning to live within my limits (not for the first time , or even the second ).  I am jus

       Ok, just in case there are those out there that don't know what TMI means, it stands for Too Much Information.  This post will be talking about things you might rather not know about me so here is your chance to click off and go read something more pleasant. So why am I writing it?  I just feel like NOT saying these things is being inauthentic. It's like I'm only talking about the good things and not telling it like it really is.       I've been struggling lately because I post things, and everyone says how happy they are that I'm doing so well when I'm really not.  It's not their fault though, because they don't know how I'm really doing because I'm not telling people.  That's because it involves things that are not fun to hear about or talk about for that matter.  Sometimes it's because the things are gross, other time it's because they involve more private or embarrassing areas of the body. In polite society we just don'

  Picture     So how does one live with a brain tumor?  Honestly, I'm still trying to figure that out.  My doctor seems to think that it shouldn't be a big deal.  He's like, "See you next year!" and here I am trying to understand what that looks like.  I have this thing in my brain, embedded in my Cerebellum to the point that my surgeon cannot safely remove it. It *may* be affecting my vision, nausea, balance, etc., but really, we can't know for sure.  I guess the reality is that I should just go about my business, continuing life to the best of my ability, until I bump up against the tumor.  That might look like an appointment with an MRI to check its status, like I had a couple of weeks ago, or it might be symptoms that make me question whether the tumor is affecting things. I have no way of knowing when or if that might happen, except for a scheduled appointment of course, so I have to figure out a way of living life that takes that into account.       The

It's when I'm "with" my people that I'm most acutely aware of my conditions. This week is the annual EDS conference in Dublin, Ireland which I am attending virtually. Last year was the first time I did this and it was a shocking eye opener. Hearing so many others share identical symptoms was my first reality check that I did, in fact, have EDS. My life was changed. I've had EDS all my life, but knowing it made me see everything differently.  Today I'm at the hospital for my three-month post op from brain surgery. As I sit in the prep area, waiting for my MRI, I'm reminded that I have a brain tumor. That's why I'm here and that's why I'll be back here periodically for the rest of my life. To check and see if the tumor has grown, if I have to have surgery again. Tears well up in my eyes thinking about it.  Here's the thing: There's no point in worrying, it won't change anything, but that doesn't stop the anxiet