disease – The Tousled Apostle

Default to Compassion

February 16, 2013February 17, 2013 jamieahughes8 Comments

Fantasy author Bryan Davis wrote, “Assumptions are unopened windows that foolish birds fly into, and their broken bodies are evidence gathered too late.” But I prefer my grandfather’s take on the matter. He always told me, “Jamie, when you make an assumption you make an ass out of you and ‘mption.'”

My amazing MS Walk 2010 team---The French Foreign Lesions — My amazing MS Walk 2010 team—The French Foreign Lesions

For those of you who don’t know, I was diagnosed with multiple sclerosis nine years ago. If you don’t know what this disease is, I’ll tell you in a nutshell. It is a chronic disease that attacks the central nervous system. Symptoms may be mild or severe, depending on which course of the disease a person has. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. If you want more information, you can visit the homepage of the National MS Society and read until your heart’s content.

I am among the 85% of MS patients who have relapsing-remitting MS, which means it comes and goes and never progresses. Basically, I have an exacerbation every so often. It doesn’t get worse each time, but each time I experience one, permanent damage is done. Depending on where it attacks my nervous system, I could lose the ability to see, walk, or remember. These periods of disability could last weeks or months. I might recover from them. I might not. As you can imagine,when I was first diagnosed, I didn’t take it well. In fact, I wrote about it last year in In Touch Magazine, which you can read here.

I’m not telling you this to make you feel sorry for me. I’m telling you so you can better understand the rest of this post. I am handicapped. Not everyday. Not all the time. But because of my disease, things have changed. I sometimes become incredibly fatigued—so much so that it takes me several days of rest to recover after a stressful week. I am also more prone to headaches and body aches of various sizes and intensities. When I’m tired, my feet often go numb. My vision gets blurry at times, which makes it much more difficult to do my job, to read music, and even to drive.

That’s why I applied for a handicapped permit using a form signed by my neurologist who I see every three or four months. There are times when I need to save my energy. I live in the South, and it can get fairly warm. (If that’s not the best example of litotes I’ve ever seen, I don’t know what is.) Heat isn’t great for MS and can actually bring on an attack, so when it’s 98 degrees with 100 percent humidity, I might whip that parking pass out to cut some time out of my walk across a parking lot. However, I try not to abuse it. If I’m feeling okay or there’s only one handicapped space left, I leave it and go in search of another one. Why? Because I know someone else who has a disability might need that space more than I do.

But if several are open, I feel I have the right to utilize one, which is what I did today when I went shopping for a few new outfits. When I came out, I found a note tucked under my windshield wiper.

I’ve been harassed for using a handicapped space before, so this is nothing new. But what galled me was the fact that this person automatically assumed that, because I wasn’t using a walker, crutches, or some other device, I wasn’t “allowed” to park where I did. There are dozens of diseases including fibromyalgia, lupus, rheumatoid arthritis where patients look perfectly “fine” on the outside but are struggling to get through the day thanks to extreme pain and fatigue.

Having one of these “invisible diseases” has taught me just how important it is to never judge someone or her situation before I know all the facts. I have no idea what burdens a person is carrying during the course of a given day. And even if someone does something that I don’t agree with or that hurts me personally, I try not to retaliate because I have no way of knowing what the source of that anger is. I always try to smile at people, to say hello, thank you, and excuse me. I always try to give a person a kind compliment. I open doors for people. I share. I do these things not because I’m a saint, but because I know how much those small gestures meant to me when I was at my lowest.

But that’s not what this person did. He or she assumed I didn’t have a care in the world, that I felt perfectly fine. (For the record, I didn’t. Long Friday = Tired Saturday) Instead of thinking about the situation and giving me the benefit of the doubt, he or she felt the need to wag a disapproving finger in my direction. And rather than confront me directly, which a few people actually have done, this person chose to tut-tut-tut me from a safe distance where I couldn’t explain my situation. To me, it was cowardly. Haughty. Pharisaic.

Dear Sir or Madam, I really am handicapped.

I may not have looked like it to you. I may not have lived up to your preconceived notion of what a handicapped person is, which is yours and yours alone. And that doesn’t make me wrong. It makes you wrong for addressing a problem only you thought existed.

If I could give this disease (and the handicapped parking permit that comes with it) back, believe me, I would. I would love to live without yearly MRIs that show me what new parts of my head are damaged by lesions. I would truly prefer to live without the small splinter of fear that’s permanently stuck in my heart–the one that pricks me when I think about waking up one morning and not being able to see, to think, to walk, or to care for myself. But, as there is no cure for multiple sclerosis yet, I can’t. I’ve learned to live with it, to embrace it, and to recognize it is one of the many things that has shaped me into the woman I am today.

You began your question with “What if…,” and I would like to respond in kind. What if another person’s life is much more complicated than you thought? What if you considered things from my perspective and reacted with kindness rather than judgment? How much better would your life and mine have been today if we had crossed paths and exchanged a kind word instead of a critical one? I don’t know how you felt after leaving the note—justified, righteous, maybe proud. But I know how I felt the moment I saw it. I was deflated and even a little ashamed for something that isn’t my fault. Today, you reminded once again that compassion isn’t everyone’s default setting, and I am more determined than ever that it will always be mine.

What a Difference 2,920 Days Make

January 25, 2012September 21, 2016 jamieahughes10 Comments

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:

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.”

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.

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.”

15718_406932711788_634621788_5104805_8266910_n — My MS Walk Team from 2010!!

I’m Sick of Praying for People With Cancer…

August 25, 2011January 9, 2012 jamieahughes8 Comments

I know the title of this blog may be a little misleading. I do not mean to say that I’m fed up with people who are dealing with cancer, and I certainly do not want to imply that I am tired of praying. What I am saying is that I pray for no fewer than ten people a week, all of whom are struggling with some form of this disease.

I’ve had enough of it…..Cancer, I mean.

According to the American Cancer Society’s latest data, 1,529,560 new cases of cancer will be diagnosed in 2011. That’s just about evenly split between men (789,620) and women (739,940). For those who have cancer of any system or organ, it is estimated that 569,490 will lose their lives to it. Again, the numbers are fairly evenly split between males (299,200) and females (270, 290). Be aware that this is in the United States ALONE.

Over half a million people will pass away this year because of this malady. Yes, that’s nearly 570,000 people, which is equal to one tenth of the population of Atlanta. Some cases might have been brought on by poor lifestyle choices or work environment, but many more are simply caused by genetic and environmental factors. People who have done their level best to take care of themselves and have shied away from any and all behaviors that can tempt this disease to draw near can feel ill, head in for a visit with the doctor, and come out diagnosed with this disease.

That’s because cancer doesn’t care who you are—male or female, rich or poor, black or white, gay or straight, conservative or liberal. You can be five, fifty, or one hundred and four when it decides to show up at your door. Whether you worship God, the Flying Spaghetti Monster, or the almighty dollar, cancer can and will take residence somewhere in the amazing body the Lord has blessed you with. It is one of the few diseases that knows no prejudice. It has no agenda other than causing havoc in your body and putting a strain on patients and their loved ones.

Who said equality was impossible?

If you divide the projected number of new cases by 365, you’ll find out that, on average, 4,190 people will find out that they have some form of cancer each and every day in this country. Today, 4,190 people will start a journey that will take them from second opinions to treatment options and from offices and work stations to the chairs where they’ll spend hours getting chemotherapy or radiation. For some, there will come a day when their own comfortable beds, covered with linens still redolent of laundry detergent and their spouse’s shampoo, will be replaced by the stiff confines of a hospital bed and impersonal sheets, starched and bleached until they’re brittle and scratchy.

Life as they’ve known it will be over.

For some people, their bodies will be weakened and their immune systems as vulnerable to attack as a village once was to the war machine of Rome. For others, their hair will do an impersonation of Elvis and “leave the building,” so baldy jokes will be made and colorful scarves bought by the dozens. 5K walks will take place, and ribbons of every color of the spectrum will be donned by friends, families, and co-workers to show support and raise funds for research.

For some, survival parties will eventually be held, and the countdown to the one-year anniversary of the happy date will begin. For others, a more somber gathering is the end result as friends and relations are left to try to understand what happened and to breathe a sigh of relief because the person who came under cancer’s tyrannical grasp and fought so valiantly has gone to a place where it can never harm him or her again.

No soul is safe, no system immune. The tongue can play host to it just as easily as the prostate or the breast. The lungs serve as its dwelling place along with the brain, the skin, the colon, the stomach, and even the reproductive organs responsible for creating life. It travels from system to system, organ to organ, as easily as a family station wagon cruises the highways and byways of the nation on a cross-country vacation. No paperwork is required; no border systems are in place to check its progress.

I’ve lost two grandparents to this disease as well as friends and students. I name some here to tell you they were real people with souls who breathed and walked on this earth. They were not numbers or statistics. I loved them all and still do today.

***

Betty Hill, my grandmother, loved to watch boxing. She cooked a mean plate of eggs, worked harder than any woman I ever knew, and apparently talked as rapidly as I do.

Leonard Hill, my grandfather, fought in the Pacific Theater during World War II and was a deacon, a Mason, and a Gideon. He loved feeding friends and family, had a fondness for dogs, and was an amazingly generous tipper.

Catie Carter, one of the brightest and most beautiful girls I had the privilege to teach, loved pink and took pride in keeping up with her homework no matter what. She approached everything with humor and love, and everyone who knew her is better off for it.

***

Today, people I love continue to fight the cancer in their lungs and their prostates, in their bladders, their blood, and their bones. And I pray. I hate it, but I pray. Why? Because James 5: 13-16 tells me:

Is anyone among you suffering? Then he must pray. Is anyone cheerful? He is to sing praises. Is anyone among you sick? Then he must call for the elders of the church and they are to pray over him, anointing him with oil in the name of the Lord; and the prayer offered in faith will restore the one who is sick, and the Lord will raise him up, and if he has committed sins, they will be forgiven him. Therefore, confess your sins to one another, and pray for one another so that you may be healed. The effective prayer of a righteous man can accomplish much.

Praying for someone who is ill, especially if he or she does not get well, is one of the hardest things to do because it’s easy to feel like God doesn’t answer that prayer, no matter how fervently it’s offered. If you’re reading this and you’re angry with God or feel like He’s cruel and unjust, I can understand. I’ve felt the same way.

However, what I’ve come to understand is that God didn’t intend for this disease to exist. He created a perfect world without sickness and death, and it was we who lost it because of sin. What He does is allow it to occur so that those who are ailing, and those who stand by them through it all, can come to a saving knowledge of Jesus Christ and attain the reconciliation that comes with accepting Him as Savior. One day, we can all know the glory of the body we were intended to have. One day, we can see those we lost again in a place where separation is no longer a possibility. One day, cancer will be a foreign concept, an impossibility no longer cause for concern. But until then, it is our burden to bear together.

Reader, I serve a Savior who raised a man from the dead four days after the fact (John 11:1-45). I serve Jesus Christ—He who walked on water, who gave sharp eyes to the blind and nimble legs to the cripple, and who, with His death, tore the veil between me and my heavenly Father clean in two, making it possible for me to be reunited in fellowship with Him forever.

As much as I might pray for it, I know God’s will is not that we all be spared from cancer. Some of us will have to walk that road in order to be brought to a place where true healing can occur. When our bodies betray us, our spirits begin the search for answers and find the Almighty had them all along. As one who God allowed disease to touch for His glory, I echo the words of the apostle Paul, “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us” (Rom 8:18).

My sickness led to my salvation, and that is why I would not ask for it to be removed from me were it even possible. My thorn in the flesh made me humble, dependent, and wise in the ways of the Father, and I am well in soul though I am weak in body. So I continue to testify to the goodness of God, to worship He who is already in my tomorrow, and to pray that His will be done in all things.

***

If you have cancer (or any other disease that is affecting you physically or spiritually), you are in my prayers. Post a reply, and let me know your story. More importantly, keep fighting! Keep following Dylan Thomas’ advice and “Rage, rage against the dying of the light.” Life is precious, and we have so much to do before it’s over.