What a Difference 2,920 Days Make

I’m exceedingly blessed when it comes to my health. Seriously. I don’t have a single allergy. I’ve never broken a bone (despite having done many stupid things that merited one). I’ve never had acne, suffered from insomnia, or been required to have surgery.

Other than an incurable case of Multiple Sclerosis, I’m the picture of good health.

I wasn’t always so glib about my disease. Trust me on that. There was a time after my diagnosis when I didn’t speak to people so much as grunt, and I spent my days creating works of mixed media “art” (notice I use the term loosely) involving naked Barbie dolls, their chests full of dynamite, suspended by barbed wire in black boxes. I only stopped doing both due to a prolonged pleading session from my grandmother who begged me to throw it all in the trash–both my anger and my terrible attempts at visual art. Thankfully, I had the good sense to comply.

For those of you who don’t know what Multiple Sclerosis (MS) is, here’s a basic definition courtesy of PubMed Health:

Image courtesy of discovery.com

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord (central nervous system). Multiple sclerosis (MS) affects women more than men. The disorder is most commonly diagnosed between ages 20 and 40, but can be seen at any age. MS is caused by damage to the myelin sheath, the protective covering that surrounds nerve cells. When this nerve covering is damaged, nerve signals slow down or stop. The nerve damage is caused by inflammation. Inflammation occurs when the body’s own immune cells attack the nervous system. This can occur along any area of the brain, optic nerve, and spinal cord. It is unknown what exactly causes this to happen. The most common thought is that a virus or gene defect, or both, are to blame. Environmental factors may play a role. You are slightly more likely to get this condition if you have a family history of MS or live in an part of the world where MS is more common.

Symptoms vary, because the location and severity of each attack can be different. Episodes can last for days, weeks, or months. These episodes alternate with periods of reduced or no symptoms (remissions). Because nerves in any part of the brain or spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.

Isn’t that just peachy? (If you’re interested, click on the link before the quote and look at all the symptoms. It gets better.)

Now, imagine facing that diagnosis when you’re twenty-five years old and perfectly healthy. Reading an article like this one is how I learned about my condition. The doctor who diagnosed me was brilliant, but he also had the bedside manner of a damp dishrag. He decided to come tell me about the two little letters that would change my entire life the night I was suffering from an LP-induced headache ( LP= Lumbar Puncture, also known as a Spinal Tap). His advice to me was, “Look it up on the Internet” because “there is more there than enough information online.”

Image courtesy of Bike MS

So, like any good graduate student, I searched. Each page my husband and I read was worse than the last, and we finally shut the computer and cried. What they forgot to mention was that MS is such a variable-ridden disease that the only way to confirm it is my eliminating dozens of others. Honestly, being diagnosed is a little like being a patient on House. There are different forms of MS, ranging from almost benign to severe, and there’s no telling what type you have until your second exacerbation occurs.

I didn’t hear this information until the same benevolent and wonderful grandmother put me in contact with a woman named who called herself Cookie. She had had MS for many years and told me that while the websites and doctors told me “facts,” they hadn’t told me “truths.” She told me stories about people she knew who, like her, had manageable symptoms, and were living pretty normal lives. One girlfriend of hers, she assured me, hadn’t had an exacerbation in eight years.

Image courtesy of Zazzle.com

I told myself I wouldn’t make it eight years and couldn’t even fathom living that long with my condition. The uncertainty is the most stressful thing about having MS. Believe it or not, a lesion can show up at any time. I can quite literally go to bed one night and wake up blind the next morning if the disease flares up in my visual cortex. My legs can stop working, my memory can be effected, and even my personality can be radically different. These changes are sometimes temporary, or they can be permanent—it all depends on where, when, and how long and often the disease attacks. That’s a reality for me now. Naturally, I could only see the long days in front of me, and living nearly a decade with that worry over me was more than I could stand. I saw eight years as little to celebrate.

But get this. Today–January 25, 2012–marks my eight-year anniversary of having MS.

Eight years have passed, and I’m still here.

Not only am I still alive and well, I’m living a better life than I did before my diagnosis. Yes, I’ve taken care of myself and am in better shape physically. That makes things a little easier. However, the greatest change has been the one in my relationship with God.

Before my diagnosis, I was the classic case of “Raised in Church.” I went forward during Vacation Bible School when I was a child and accepted Jesus Christ as my Savior, but no one followed up with me, no one taught me and led me to the next step. Everyone made the assumption that being from a church family meant that I knew exactly what to do. Sadly, that was not the case, and I spent most of my childhood and adult life never fully grasping what salvation was and what it meant. I thought going to church and trying to be a good person was enough.

What I had assumed was that the MS was punishment, that God had it out for me. But, in truth, it was His love for me being made manifest. He loved me too much to leave me where I was and took a drastic step to change my path. Beth Moore, a Christian writer, says that we can either bend our knees and bow before God, or He can break our legs. Either way, we’re going to get on our faces before Him and acknowledge that He is in fact the great I AM. That’s what MS was—God “breaking my legs” and telling me, If you’re going to live the kind of life I have in store for you, you are going to have to learn to depend on me for everything. You’re not ready yet.

During my recovery, I did just that. I collapsed in a heap on the floor of my parents’ bathroom and prayed. I begged God to take it away, that I wasn’t strong enough for this, and that I was terrified out of my mind. I’d like to tell you that I had a “Damascus Road Moment” and got myself straight with the Lord right there, but that’s not the case. It took many, many years for me to become spiritually mature to understand the promise of Romans 8:28-30:

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For those whom He foreknew, He alsopredestined to become conformed to the image of His Son, so that He would be the firstborn among many brethren; and these whom He predestined, He also called; and these whom He called, He also justified; and these whom He justified, He also glorified.

Yes. I firmly believe MS was given to me for my good. Why? Because it was what started me on the long spiritual path that would conform me to the image of His Son. I am becoming more Christlike every single day because of my disease and how it has changed me. Like Paul, I have this “thorn in the flesh,” one given to me that I might not be fooled into thinking I was self-sufficient (2 Corinthians 12:7-10). In eight years, I have learned the meaning of God’s strength being made perfect in weakness and decreasing so that He might increase (John 3:30).

God knew I would need MS, so He allowed it in my life. However, He also provided me with a supportive family, a marvelous husband who has never once wavered in his support of me, and a series of church homes, jobs, and Christian role models that prepared me for the task He’s given me. Eight years ago, I wasn’t ready to work at In Touch Ministries. I sometimes feel like I’m still not ready, but a still small voice always reminds me, “Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you, and through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you” (Isaiah 43:1-2).

The first eight years I never though I’d make it through are now over, and the next chapter in my story is beginning. However, rather than dread what tomorrow brings, I look forward to it with expectation because I am guided and protected by the One who promised, “I will not fail or forsake you” (Joshua 1:5). Eight years—2,920 days— after I started this journey, I now understand, “[whosoever] the Lord loves, He chastens, and scourges every son whom He receives” (Hebrews 12:6) not because He is cruel or capricious but so “He might redeem us from every lawless deed and purify for Himself His own special people, zealous for good works” (Titus 2:14). I know this sounds antithetical to the warm and fuzzy gospel so many pastors want their followers to believe, but being a true disciple of Christ does not come without some discomfort and sacrifice. Yes, I was humbled and broken, brought so low that I thought I would never rise again. However, that was allowed in my life so that I could be rebuilt on a firmer and more lasting foundation, and He who has “begun a good work in [me] will complete it until the day of Jesus Christ” (Philippians 1:6). If someone told me they could give me those 2,920 days back and make MS go away, I would have to decline the offer because, as Paul said, “I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us” (Romans 8:18).

Tomorrow, I begin working with the MS Center of Atlanta as a peer counselor. After my training, I will be one of the people they can call upon to visit those who are starting their own journeys with MS and who can share the truth as well as the facts. Yes, I get to be the “Cookie” for someone else starting tomorrow; I can look at them, say, “I understand what you’re feeling,” and truly mean it. Will it be difficult at times? Certainly, it will. However, I am but the vessel that carries Christ wherever I go. Those who see me will see Him, and I will have more than enough strength to accomplish whatever good works he has appointed for me (2 Corinthians 3:18; 9:8). Yes, I am indeed blessed when it comes to my health, and I truly do delight in my infirmities. MS might stand for “Multiple Sclerosis,” but it’s also “My Salvation.”

My MS Walk Team from 2010!!
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10 thoughts on “What a Difference 2,920 Days Make

  1. Bless you, Jamie. I had no idea you were living with MS. You are living proof that a diagnosis does not define us, we (and God) make our own definitions. May you continue to do your good work and make a difference for others.

    1. God gives us all the burdens we’re meant to bear for our own sanctification and His ultimate glorification. His yoke is indeed light, my friend. Thank you for reading and for your encouragement. I truly appreciate it!!

  2. You are like me–not defined by an illness. Good for both of us, I say! For you it’s 8 years; for me it’s a bit over 10. One of these years I’m going to lose track and that will be a good thing.

    We each found our way to embrace a new life that includes our illness, but doesn’t put it in the center. Bless your heart for posting this. More people need to read it–those with and without chronic conditions.

    1. Lorna, I would say that I am defined by my illness. I am the person I am because of it, and I have no doubt that it saved my life, both the temporal one and the eternal one. You’re correct in that I don’t dwell on it, and it doesn’t rule my life and fill it with worry. Giving everything over to God, telling Him, “I cannot do this anymore. You have to help me.” is amazingly liberating. I no longer have to rely on my own strength to get through everything, and when I am weakest is when I’m strong because He shows up.

      I’ve got one of the “invisible conditions,” and people are often stunned when I tell them about the MS. I guess to be ill you have to “look the part” for some folks. I guess that’s the stereotype. Thanks for reading and commenting; your words mean the world to me!

  3. I typed in the words Multiple Sclerosis in the topic section, and found your blog. I am a follower, and appreciate everything you have said in my glance through. To God be the glory!

    1. Well, you’ll get an earful about it from me for sure. šŸ™‚ Out of curiosity, why were you searching for MS? Does someone you know have it? If you would like to send me an email, please see my address at the end of the post “It Is Good to Be Bound.” I always like to meet fellow demyelinators…. Welcome to the madhouse, and thank you so much for your kind reply!

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