Having Multiple Sclerosis (a glimpse?)

So, I have MS.  If you’ve visited my blog in the past, you might know that.  This October will be the nine year mark (that is almost a whole decade!).  At first, everyone who knew I had it would pretty much forget because I didn’t look any different.  It’s invisible.  And then, it started to become a little visible, as the limp that would only sometimes bother me became more distinct.  Sometimes, people still didn’t see the limp, but I was constantly aware of it.  I began wearing a brace just below my knee.  It has electrodes in it that help my foot lift up when I walk (pretty cool).  People would ask me if I hurt my knee, because that was almost what it looked like.  I have heard many things, from being asked if I hurt my knee (pretty common), to being asked if one foot was longer than the other (that one caught me by surprise, but I thought it funny).  But still, it becomes worse.  This is because I adapt and use my other leg for walking more, deteriorating the muscles in my bad leg (left).  But the thing is, I don’t even know how to walk using both legs equal anymore.  And so the limp worsens.  My mom turned to me the other day and said that people don’t think I have a bad knee anymore: they might think I’m recovering from a stroke or something.  My left knee has troubles bending when it’s tired, and the leg has troubles lifting up at times, even with the brace.  Strangers notice it, at least a lot of them, but now many are touched with…compassion?  Sympathy?  I don’t know.  But…at least they see me?

I ask a lot of my friends to walk with me if we’re walking together somewhere, and I just link arms with them and use them for balance, most of the time.  There have been a lot of times where I’ve tripped and they’ve caught me, making it like “they catch me when I fall.”  (Smiley face.)  This last semester at school, I was walking near the freshmen dorms, and this guy freshman asked if he could help me somehow, because here he was walking, and I looked like I was in pain or something.  A complete stranger, and it wasn’t even one of my bad days walking-wise.  I wasn’t noticing.  But h made my day.

I was contemplating the fact that people notice my limp and judge it.  At least they notice me for some reason.  But then my mom was telling me it’s about how I handle it.  So many people with MS or other diseases of the like are negative, and I by no means want this post to sound that way.  MS is just a fact.  I deal with it and roll with the punches.

I go in for an infusion every month that takes two hours minimum, and it always interrupts.  Living at home this summer, I still go down to Sioux Falls for the infusion.  It’s a headache, because before I travel anywhere for a length of time, I have to look into where I can get an infusion, as there are select centers that administer the medicine I take.  My brace has technical issues sometimes and it’s a headache for many other reasons.  Because I was 13 when diagnosed with MS, I don’t even remember what it’s like without it.  I don’t know what it’s like to run or to be able to use all my muscles without being conscious of them and using extra energy to do “normal” things like walk.

This was a rant post.  I can’t tell you what it’s like to have MS, because even if you have it, it affects everyone so incredibly differently.  My dad has MS, too, and it’s weird because he has a limp on the same side as I do (so we walk in sync sometimes, smiley face).  MS isn’t supposed to be genetic, but they think that the likelihood of getting it is a gene or something.  I am so not a science person—I respect friends who are bio majors and nurses and pre-med, but I’ll leave all the technical stuff up to people who care more than me.  I have family with MS on both sides of my family; it’s weird.  But we all handle it well, in my opinion.

MS is SUCH an unpredictable disease, and I don’t know what my body will and won’t be able to do in the future.  I’m at school to be a music teacher, but what happens when I can’t do it?  I have a back-up plan, but I honestly have no idea.  I have had to put more trust in the Lord than ever.  He is my literal strength when I can’t move forward, and he knows my future, whereas I SO do not.  I recently gave this senior sermon at my college chapel talking about how MS is a thorn in my flesh, but God has used it to teach me things that I’d have difficulty grasping any other way.  God’s creative and could teach me some other way, and he by no means gave me MS as a punishment or anything.  But because I do have it, he uses it.  I am strong because of him, and he is the reason why I do not succumb to negativity.  I have my moments, but I can’t not.

This has gotten to be a very long post—kudos for sticking with until the end.  I guess what this whole thing says it that having MS SUCKS.  A lot.  So many don’t realize all of what I have to deal with and go through.  But God ROCKS.  Even more.  He carries me and shines through me.  I don’t even realize it.  But that’s how I handle it so well.  So when people look at me and see the limp, they might judge it (I’m pretty sure I’m more scared of judgment than actually receiving it).  But I handle the limp all in stride (no pun intended—kidding, that was totally intended and I’m cracking up).

Anna