MS and me

I grew up with MS.  No-- I don't have it.  My mom does. That means I cannot tell you what it's like to have MS.  I definitely cannot tell you how she feels about it. All I can tell you is what it has meant to me.

My earliest memories are of times after my mom's diagnosis.  Sure, I've been told stories about times before I was three years old, but those are not my memories.  Those are other people's memories.  So all this to say-- I grew up with MS.

Now, to be honest... I do not remember when I knew what MS was.  Some time in elementary school I'm sure.  My parents never hid the words from me though, which is probably why I cannot remember not knowing what MS was.  And I guess even then, I did not know what MS was.  I mean sure, I was one of those smart elementary schoolers telling you the definition of demyelination, but I did not really know what MS was.  I only knew what it meant to our family.

Here are my memories having to do with MS... seems bleak to list the things I remember about MS in my life as a child.... but stay with me.  I'm going somewhere.

I remember shots.  My dad giving my mom shots and other people giving my mom shots.
I remember talk of B12, betaseron, interferon, and strong antibiotics that were too many to name.
I remember the curtseys which is was my family lovingly named the little movements my mom made when the nerves in her legs made them almost fall out from under her.
I remember "staying cool".  This involved umbrellas, shade and retreating to the inside during hot Houston summers.
I remember lots of trips to doctors... I remember lots of blood draws and how much my mom did not like them.
I remember a Lupus scare which probably hasn't ever gone away.
I remember word finding issues (although only my current vocabulary allows me to describe them as such).
I remember forgetfullness and my mom's probably least favorite phrase to hear out of my mouth "I already told you that!"

Okay, okay, that's enough.  You get the idea.

Some of those things weren't fun and may seem like negative memories to most of you.  But MS help shaped me into who I am today.  Here's how I know...

I used to dream of becoming a doctor and finding the cure for MS.  Most kids dream of curing cancer... but not me. Now I have not exactly become a doctor yet and I definitely have not cured MS, but I probably would not be in the medical/therapy world today if it were not for the original dream I had.

I knew a whole lot about autoimmune diseases by the time I, too, was diagnosed with one at 14.  My mom knew the statistics of passing the lovely bit of genetics that made me more succesptible  to autoimmune diseases and she probably wished and prayed that it would lay dormant in my system forever... but it was such a relief to me to be able to share it with her.  Not exactly the warm fuzzy mother daughter bonding you would expect... but nonetheless that's kind of how I look at it.  I mean she got me.  She understood all the questions and concerns during my diagnosis.  She knew to get second opinions.  She knew that sometimes I coudln't explain how I felt. She understood what it was like to watch a disease affect what you love and the other people around you. It was way better than going through it alone.

I have been comfortable with doctors, medicine and needles from a young age.  While I never could give my mom a shot, I one day had to start giving myself one.  I was never afraid of needles and during my diagnosis of RA I went threw tons and tons and tons of sticks.  Some kids only see needles at yearly doctor's visits until they are adults.  Not me.   I also knew the importance of taking medicine and how they all came with side effects and more medicines to treat those.

I learned compassion and perseverance.  My mom has always persevered.  And MS teaches you that everyone deserves a little compassion for their invisible hurts.

I do not remember my life before MS was a part of it... and I'm not really sure I want to.  Sure-- plenty of bad things come from being a part of a family with MS... there are plenty of things I blame it for.  But lots of good comes from it too.  Things I would not want to change if I had the chance.

Don't worry, I don't like MS that much... I'm still hoping we find the cure!