Dating Someone with MS

I asked Dr. Wile E. Coyote to write a guest blog of his experiences dating someone with MS (hence the title) after I wrote this post about the importance of relationships while having MS. Oh, and have I told you, my readers, that I am marrying this man in like, two weeks?  🙂  Enjoy!  -Anna

 

I don’t know everything. I don’t know everything. I don’t know everything. I don’t know everything. I don’t know everything. I don’t know everything. I don’t know everything. This is the phrase that really humbled me and really began to sink in when starting to date Anna. She has a disorder called multiple sclerosis (MS). So what is it like dating someone with MS? I’m not sure if it is the same for everyone because every person is different, every relationship is different, and MS varies drastically from person to person, but I pray that sharing my experiences a little will help people out there understand what it can be like. Anna’s blog is so encouraging and I don’t want to stop that trend with this. I love you Anna! 🙂

 

The summer after I graduated college is when I really started thinking a lot more about moving our friendship to something more. Anna had shared with me glimpses of her MS and some personal things in day to day living that she struggled with, but not a whole lot of the deep stuff and really personal ways it had and has affected her. I’m not sure if it was soon after we started dating or right before (we will say right after to make things more consistent) I started getting afraid. What if we can never have children? What if she gets the JC virus and becomes a vegetable before we even get married or during our marriage? What if we can never have sex or it won’t be the same because of her MS? What if we can never run or walk together, because I like to run? Can I handle taking care of her in the future if things get worse? Am I ok sacrificing my dreams of being a doctor and beyond to take care of Anna if needed? What if she ends up in a nursing home really young? Can I be there to support her through all this? These are just a handful of the questions that would fly through my head. To add to this fear, my dad would ask questions like, “Do you feel like you will be missing out on some things in life by pursing a marriage with Anna?” Little did he know that was a very bad question to ask that made me doubt if my family even supported my relationship with Anna (not sure if he meant it that way, but that’s how I took it).

Additionally, my first time seeing Anna’s MS in action since we were dating was at her Mayo Clinic visit in Rochester. This was also our first time seeing each other in person for more than a day since summer 2011. This was August 2013. I was really nervous and tried my best to keep an open mind. Anna had described her limp to me multiple times, but to really see it was different. Well, up walked Anna and her mom, linked arms. We hugged and I got Anna’s arm and away we went. I was actually quite proud and giddy at this moment. Locking arms is kind of romantic. The doctor’s appointments raised a lot more questions, more out of curiosity, love, and concern, now. I am a born learner and observer though, especially when it comes to medical stuff and human body stuff.

Backtracking a little bit, leading up to the visit to Mayo with Anna, I did a lot of research and digging into her medicine Tysabri. This really triggered a lot of fears in me and my family when I shared some of the things I had learned with them. To put it simple, this medicine makes a person more at risk of getting infected by a virus known as the JC virus. This virus has the potential to turn someone very quickly into a vegetable with not much to stop it (at least that is what I remembered reading or what I perceived it as). *Disclaimer from Anna: the JC virus just means an increased risk for PML, the brain disease that can transform a human into a vegetable. D did his research months ago, and the risk for PML has also been getting smaller over time.* From what I remember, the odds are 1:1,000 of being infected while on the medicine. What was I getting myself into? For just starting to date a good friend, could I handle all this? Do I love her enough to be by her side if this happens? My doctor side kicked in as well and questioned whether there was other options of medicine (not knowing Anna’s whole story too well yet). So at the doctor’s appointment, her doctor never really mentioned if they found evidence of the JC virus infecting Anna or not. This scared the pants off me and really worried me because I wanted to hear it myself that everything was still okay. Anna and her mom weren’t too worried about it and tried to reassure me that no news was good news. I wasn’t convinced.

Basically, I made MS much larger in my head than it really is. It is a sucky disease, but by no means life threatening or aggressive (for Anna at least and most I know who have it). And with today’s research and medicines, can be controlled quite nicely along with its symptoms. Also, I distrusted Anna’s doctors and the LORD that the best decision was made for her to be on Tysabri. The LORD would protect her from getting the JC virus and has for about 6 years already. He would also give me all the strength and abilities I would need to take care of Anna how she needed it no matter what happened. He brought us together. He will help always.

Something else that made a difference for Anna and I was that I loved Anna for who she is before seeing her MS in full action. I loved her writings A LOT! I loved her optimism in the midst of MS struggles. I loved her musical talents. I loved her desire to hug people. I loved her relationship with Jesus and where they have gone together over time. I loved her spontaneous personality and go-get-um personality. I loved her Minnesotan and Olson dialect. I loved her many smiley faces. I loved her stubborness and affectionate nature. Okay, I love a lot of things about Anna and could go on for a long time with these things, but I must move on with this blog. Honestly, at Mayo clinic walking with her, I still saw her as Anna, not as someone to pity because they limp and have no sense of texture in their fingers. Not someone to feel sorry for because they have a life altering disease called MS and had it since 13 years old. How did I do that?

Two things really helped with this: 1) The love that Jesus has for me overflowed to the way I loved and saw Anna. 2) I had gotten to know who Anna was as a person for about 2 years through letters, emails, phone calls, and Skype. *Note from Anna: Skype didn’t start until summer of 2013. But spending, like, 4 hours at a time on a Skype call pretty much made up for that.* To see inside a person you have to get to know them. Talk to them. Ask them questions. Open up with them about your life and listen to them when they open up about their life. Then, you must remember that Jesus knows, created, uniquely designed, and loves that person and see that person with that same frame of mind.

So more about my experiences (sorry I tend to get more preachy then real). Walking with Anna is tough sometimes. We have to walk slower and I have to be more conscious of where I step or the space we have so we don’t walk off the street or on uneven ground (Anna can handle uneven ground or will walk on it anyway even if it really wasn’t worth it because of her stubborness or impatience). I never thought I would become a unit with Anna everywhere we went, but I grew to like the closeness. It actually made me kind of protective because I wasn’t sure if she could handle walking without support. Of course she reassured me often, sometimes I think biting her teeth, that she can.

On the note of protectiveness, I would be concerned for Anna a lot (and still am) when I don’t see her. She will tell me about her day of little energy or how bad she felt her walk was that day. She will tell me about getting super hot and not sure how she would continue with the day. She would tell me when any of her symptoms would flare up a little. This worried and worries me because I want to be there to support her all the time and be there to comfort her. I don’t want her to overdo it and burnout. I also want to see her care about her body and health as much as I do, so I encouraged her often to stretch and eat a little healthier (I still do both). Through this I learned a couple things and am still learning them. One, Jesus is always there to support, provide strength, and comfort Anna in her time of need. She knows this and looks to Jesus for that support. When we are married Jesus will use me to do this, but not always because her help is ultimately from Him, not me. Second, Anna has to make the decision herself to make lifestyle changes when it comes to her health. I can encourage her, but I can’t force it on her. Just like asking any person to change to or add healthy habits, that person has to find the motivation and need in themselves before the change will take place. I am learning to accept this and be patient with Anna’s decision making on her own health.

The toughest part about dating someone with MS is understanding the nature of the disease. I can never understand it because I can’t experience it without having it, but getting Anna to describe what happens to her body or how she feels in specific and analogical ways is extremely helpful. When I can go through a whole day even on low energy and still stay standing, Anna cannot. It took some time to learn her energy levels vary a lot because of fatigue and MS. I remember shopping at target together a few months ago registering items for our wedding. We walked around the store for a good 1.5 hours I would say. Anna had to stop and sit down. She was beat tired. I was fine. She was not. Also, Anna will get frustrated with her limp or energy swings often. She will try to push herself too far even though I may give her a very concerned look as I think, “I really don’t want you to overdo it.” I cannot fully understand the frustration inside. But I must let her work through it herself. I learned quickly to let Anna be stubborn if she is set out to be (at least to a point). I also learned that Anna is still an independent person. And like all people, needs help with certain things in life. Anna may need help balancing while walking a long distance. I may need help washing the dishes faster. I am not saying I learned this overnight, but trusting Anna that when she needs help, she will let me know. She is learning each day to ask for help when she needs it and it takes time for her to learn this. I try my best to be understanding of her learning processes.

This leads me to why Anna and I are complements. She is a get-r-done kind of person. I am a think-it-through kind of person. She has a disorder that forces her to slow down. I struggle with gettin-r-done when I need to. God has given me a spirit of understanding when it comes to people that is supernatural to me sometimes. I do not boast in this, for it is not of my own. This has helped me tremendously to understand Anna and her MS. I try to get into Anna’s world and perspective. I even looked up how much an average human leg ways to try to imagine what it would be like to limp like Anna. I sometimes think intently about what it is like to walk with a foot-drop and try to mimic it. I told Anna on a day or week when MS is made aware throughout the world, I will wear gloves and weights around my left leg, and potentially a device that forces my foot to extend so that I can experience at least somewhat close to what Anna does each day.

One more thing before I wrap it up. Psychologically, Anna has been to the depths of the dead sea and back. I count it a miracle she came back by God’s Great Grace. This scared me at first that this might happen again. But I see now it won’t. Anna now looks at only the potential for who she can be and what she can do. She loves people more than ever and pursues her dreams without letting MS stop her. Along these same lines, Anna has learned to deal with stares from those who don’t know her. I now get stares when with her. Maybe people pity me and her. Maybe I shine the light of Jesus that I love someone with a limp the way I do. Maybe they think I and/or Anna are both mentally handicapped. After a while, I learned not to care. I know I love Anna and I know who she really is. She is beautiful to me inside and out. A quick note on that: I honestly was kind of indifferent to Anna physically at first. But very quickly that changed. When I knew Anna on the inside, I think the inward beauty started transferring to how Anna appeared on the outside to me. Now she is my babe! And we are getting hitched in 13 days!

The past few days I have been wearing a bracelet Anna gave me that says, “I love someone with MS.” I use to look at that in pride, saying to myself, “That’s right.” or I would smile thinking of Anna. I still do the latter and as I wear it I think of the story Anna and I have to encourage and share with others about MS and our relationship. I am not perfect and do get impatient with Anna sometimes. I do have thoughts here and there entice me that I am missing out on something by marrying Anna. But I know that I will experience far better things then those things I am “missing out on” because I love Anna more than any person on this earth.

 

I hope this was encouraging and real.

 

Doug (AKA Dr. W. E. Coyote)

A Letter from 2014 Me To 2009 Me

Dear Type-A, Control-Freak, 12^th-grader Anna from 2009,

Yes, I just called you a type-A control freak.  Because you are.  You hide behind other people’s opinions and you like approval.  You don’t like to think for yourself, because what if you are wrong?  You follow the rules and you have this awesome confidence when you know something really well.  I know this MS has been hard so far, and it’s not over yet.

Who am I, and how do I know these things?  I’m you, after college.  I am currently 23, and life is pretty great right now.  You’re still walking, but you know all those lectures everyone gives you about stretching and exercising?  They’re serious.  Keep at it.  You won’t regret it.  (You’ll probably be lectured from all sorts of people throughout life, so you might as well learn to listen, not do everything but what you’re told.)  I’m still walking, although my limp has gotten worse over time.  (Keep stretching!  Even as I write this now, I haven’t stretched yet today, and I feel like such a hypocrite.)  I am currently job searching—the “currently” part encompassing the last month or so, but I haven’t really done anything about it until now.

I want to encourage you.  Keep playing music.  You just decided, about now, I think, that you’re going to major in instrumental music.  It’s tough, but you will love learning all that you are going to learn.  All the music theory, music history, and those instruments?  You’ll learn so much!  Also, keep writing.  Don’t be discouraged that the story you wrote last year isn’t very good (it isn’t—what is the plot even supposed to be?  It’s weak.)  KEEP WRITING.  You will just keep getting better.  I promise.  I haven’t had anything published yet, but that doesn’t mean I haven’t tried.  And it’s all been totally worth it.  And, you’re going to get involved in this campus ministry, at first because you feel like you’re supposed to.  But God is about to change your life super dramatically using it.  You will love it. And you might find a future career opportunity through it.  Through any of these things that you love—you won’t stop loving them.  In fact, you’ll become better at what you like to do, and you may find future career opportunities through any of those things.  You may be freaking out because you don’t know what you’ll be doing—that’s okay.  I actually still don’t know.  But one thing I’ve learned is to be okay with that.

College is better than high school.  I promise.  And it just keeps getting better.  I am so excited for what comes next.  I’m so ready to leave college behind.  In a letter you wrote to your high school graduating-self back in 7^th grade, you totally planned out your future.  It’s kind of embarrassing, you’ll come to realize when you read it in a couple months.  You’re not as bad as you used to be, but you’ll keep easing up.  The details aren’t worth getting upset over.  They’re not that big of a deal.  As Dad says, “Don’t worry about the little things.  And it’s all little things.”

There are so many things I wish I could tell you right now.  You are going to make so many friends in the next 5 years!  But sometimes not knowing is the best.  You love surprises.  So wait and be surprised.  Chose a major and stick with it, but have fun!  And don’t worry about the future.  It takes a long time to learn that lesson, and I’m still continually learning it.  God has the best for you in mind.  Sometimes it will hurt, and sometimes you will cry.  But it’s worth it.  Live and love—you love so well.  Be comfortable with who you are as an individual with your own opinions and talents—not just the opinions and talents you think you should have.  It’s okay not to be the best—you won’t get to play with the Augustana Band every year, but that’s okay.  You’ll still get to play.  Strive to be YOUR best.  There IS a difference, and it’s okay.  I am so excited for you.  You are faithful and fun and so great!

Stay you,

Anna from 2014

There is No Trailer, So Just Trust, Okay?

Looking at genealogy, you see the whole story.  When and where a person was born, where they were during various censuses (cenci? censes?), when they got married, what children they had, and when and where they died.  More recent generations, you can see what they did in their lives, all that they accomplished and what kind of people they were.  When we were going through pictures for the century farm party, my mom and I found diaries my great-grandma Myrtle had written: one from her first year at S.A.U.M. (School of Agriculture at the University of Minnesota), another from when she and her husband, Nuel, went on a road trip across the country, staying with relatives from Minnesota to Washington and down to Arizona, and I haven’t looked at any others.  There are only like one or two more.  Anyway, so I see her life.  It’s done.

And then here’s me.  I don’t get to see my life, there’s no trailer for it or anything.  I won’t see it until I’m old and can’t remember it anyway.  And I’m only 22.  I KNOW I have a lot of life left to live.  THAT is my biggest area of impatience.  Yes, I have one more semester, and I’m student teaching.  Then what?  Will I teach?  Write?  Go to seminary?  Will I get married and have kids (I want to someday)?  Who?  When?  Where will we be?  What will I be doing?  What will I be able to do and not do because of the MS?  I think that this has always been my biggest weakness, my biggest stumbling block.  I just want to know.  Then I’ll feel better.  But I have to remember that instead of knowing, I have to TRUST.  When I completely changed my mind, deciding not to do music therapy, and therefore not really knowing what I’ll be doing, I said it was okay, God will tell me before I get there.  But it’s nearing!  TRUST.  God may not tell me before I get there, but if I trust him, he will place the steps in front of me when I take the step.  And if I fall and something bad happens, he will help me up if I depend on him.  Right now, I feel like there are many things I want to do.  I’ll just try it all, maybe, before it’s super important to have a steady job.  I’m getting distracted.  Trust.

Does anybody know how stinkin’ hard this is to do?  Probably, because everyone struggles with it.  A perfect relationship with God means that we trust him with every single thing and don’t worry at all.  Obviously, it’s not as easy to do as it sounds (and it doesn’t even sound that easy).  Anyway, I thought of this song, “Already There” by Casting Crowns.  I may not know anything, but God knows it all.  He knows every screw up I’ll make and what direction I’m going.  He knows every single thing.  He knows what I’ll be thinking in October when I’m student teaching in an elementary school, and he knows what I’ll be journaling like mad to him when I’m desperately trying to make a decision in December (hopefully it’ll be before that, but, you know, whatever).  He knows where I’ll be next year (obviously, but I don’t), and he knows what I’ll be thinking ten years from now, whatever I’m doing.  Ugh.  It’s not that I don’t trust him with my future, it’s just that I don’t get to find out.  No spoilers. Some of my profs told me “I can’t wait to see where you end up.”  Same here.  If anybody knows before me, could they tell me?  (Smiley face)

This was another rant post, I think.  Thanks for reading it, especially if you got down to here.  Comment below, what do you struggle to trust or be patient for?

 

God’s Plan: Even though he won’t let me see it, it’s okay, because He is Ultimately GOOD

“Maybe the reason God doesn’t tell us his plan for our lives, is because if we knew everything that was going to happen to us, then we would trust our knowledge of our lives and not God’s guidance into the unknown.”

This was my friend Matt T’s Facebook status today.  I love how when I need to hear something, God finds a way to tell me.  Like the verse of the day I get emailed to me every day?  Philippians 4:6-7 this morning.  And the fact that when they came to visit yesterday, my parents left encouraging post-its all over my room and I didn’t find all of them last night.  (I think they know I’m a ‘words of affirmation’ person and value words way more than what others think when they use them sometimes.)  Today was a rough day.  Because yesterday, I hit a burn out point and a breaking point within hours of each other.  It’s really frustrating, being burnt out when there are three weeks before graduation.  (Ah, but I will still have another semester!  But student teaching will be different than listening to lectures and writing super long papers.  Instead I’ll be writing lesson plans and be in front of kids all day.  Hypothetically more fun.)

I’ve been trying to “relax” when I can, but I don’t know if I even remember how.  I journaled to the Lord what was going on in my head, telling him the lies that were circulating, even though I knew they were just that—lies.  I felt him combat them and direct me to Bible verses.  And then I had this feeling that I needed to play the piano—now.  I was really confused if that was me or him, actually, but I listened.  As soon as I sat down at the piano, I played a diminished seventh chord (loudly).  I played inversions of it to make a sort of melody in the top voice.  And then I realized that the left hand ostinato I’d been messing with for the last month or so fit the diminished seventh and then resolved it.  So I went back and forth—a FORCEFUL diminished seventh, followed by a mellower major chord.  I added a minor chord in there sometimes.  And then I just played.  Many diminished, minor, and sometimes major chords played a melody while my left hand played the ostinato, moving from C major/diminished, to D major, to E minor, sometimes E diminished seven.  Together, the dissonance created beauty.  Because I was in my dorm room, I had headphones on, so I was the only one who could hear it (that is OKAY).  But it was exactly what I needed.

Where words stop, music speaks.  When I have let the music have its say until I can’t feel my fingers, I turn to writing once more. These are words I write now.

I don’t really know where the future will bring me.  I have no idea still what I’ll be doing this summer, but arrangements have been made for me to either stay here or at home.  I’m not sure what I’ll do for a semester after I graduate, but I am planning on interning with Cru for a year after that.  And then?  I have absolutely no idea.  But I have given all these fears and added stresses to God, who’s got my back.  I have realized that I must surrender these anxieties to him daily, or I find them in my hands and am freaking out again.  It’s like I’m in the car and not being shown the road map.  But I am okay, because “if we knew everything that was going to happen to us, then we would trust our knowledge of our lives and not God’s guidance into the unknown.”