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Choose Joy – One woman’s choice in confronting a terminal illness

Posted Jul 07 2012 8:07pm

Sarah and Riley

Awhile a back, the song “God Is Good” filled the airwaves of Christian radio stations across the country.

God is good, all the time.
Through the darkest night
His light will shine.

If you’re walking through the valley
and there are shadows all around,
Do not fear, for He will guide you -
He will keep you safe and sound.

He has promised to never leave you,
Nor forsake you,
and His Word is true.

The song was popular and became a regular Sunday morning praise song. Why? It restored hope to those who walked into church, hopeless from the past week’s shadows of no income, no jobs. It restored focus to those who walked into church confused and lost, reminding them they don’t walk this path alone. It restored hope to those who felt they wouldn’t make it another day – physically, mentally, spiritually, and/or emotionally, by reassuring them they are in the care of the Almighty.

Sometimes we are the ones walking in the valleys of darkness. We seem to stumble and fall with every unstable step. We feel lost, alone, frightened, desperate. (Where’s that Lexapro?…) That is said in jest, but you know the feeling. We fear the unknown. We feel the shadows will consume us.

Hold on… God is good. All the time. This isn’t His fault – this mess of a world we live in. His desire was to provide goodness. We blew it when that red, juicy apple (as Boo calls it) was dangled in front of our face and we looked to the left and then to the right and convinced ourselves God wasn’t watching and wouldn’t know if we just took a little nibble. We took a bite and the whole world, as God intended it to be, took a 180 degree turn.

It wasn’t His fault that a refugee camp in South Sudan is bombed by the very ones these refugees are desperately trying to flee…

“A few days ago I visited a refugee camp in South Sudan, where Samaritan’s Purse is helping care for some 23,000 refugees who have fled the atrocities of the government of Sudan. The camp has been a safe haven for these suffering people. But Thursday, the violence followed them when the camp was bombed by the very government they have been fleeing.

“Four bombs were dropped. Praise God, we have confirmed that all of our staff are safe and accounted for, and as of now there are no reports of people injured on the ground.

“These people are in need of immediate prayer.  Please pray for safety for the refugees, and for our staff. Pray for peace to come to this troubled region. Most of all, please pray that the people we are helping will find lasting hope in Jesus Christ.” ~Franklin Gharam, President of Samaritan’s Purse

It wasn’t His fault that a wife will no longer be able to tell her husband goodnight…

“…The night before the burial of her husband, 2nd Lt. James Cathey of the United States Marine Corps, killed in Iraq, Katherine Cathey refused to leave the casket, asking to sleep next to his body for the last time. The Marines made a bed for her, tucking in the sheets below the flag. Before she fell asleep, she opened her laptop computer and played songs that reminded her of “Cat”, and one of the Marines asked if she wanted them to continue standing watch as she slept.

“I think it would be kind of nice if you kept doing it” she said. “I think that’s what he would have wanted”.

Dipesh Gohil, who shared this story says, “Not sure what is more honorable: being married to this faithful wife to the end or the Marine standing next to the casket watching over them both.

It is not God’s fault that I have Parkinson’s disease.

The world was a pretty nice place until that red, juicy apple looked better than the world we live in at the very onset of tiem. And at that point – the point at which we inserted our white teeth into the juicy, raw flesh of sin – we became people with our own agenda. People with a free will that just demonstrated – if we wanted things our way, we were going to have things our way. And God let us. We call it ‘free will’.

He is not mean. It is not His character that we should squirm or suffer. He just says, “I will not force you to love Me. That is a choice. However, you ate that nice red, juicy apple that I told you must leave on the tree and there are consequences to disobedience.”

Unfortunately, while we may not be the one doing the disobeying, we can become a part of other people’s circles of life’s choices, ultimately being affected by their consequences.

Like James and Katherine Cathey. Like the bombings in the refugee camps in South Sudan. Like having a chronic illness. God did not will it.

“But,” you say, “he allowed it.”

Yes. I believe – for two reasons.

First, there was that nice, big, red, juicy apple. It was enticing. Alluring. An exciting possibility to become as knowledgeable as God. It was attractive, irresistable – tempting. And we took the bait. From that moment on, life as we once would have known it now, forever changed. With the presence of sin, now death entered in. Where there was once purity, there was now shame. Where once there was freedom, we now felt bondage. Where there was once light, there was now darkness.

But God remained. Faithful and true. He never changed. He now waited to see what we would choose. Him or this world.

Second, He may not cause certain things to happen but yes, He can stop it. But,ask yourself – If God stopped every struggle, every pain, every heartache, every inconvience, every pimple – where would we be? Blemish free and ignorant, childish, and the butt of every moronic joke ever told. There would be no experience, no wisdom, no maturity, no mental, emotional, or spiritual growth. We would remain as infants and you know what that would look like…

Selfishness would abound and become the norm. Pride, self, ego would rule. Chaos would erupt. Constantly. Daily. Everywhere. Without the dark times, we cannot appreciate the light. Without pain and sorrow, we cannot appreciate joy and happiness. Without the storms, we could never imagine just how good the sunshine can be.

I have Parkinson’s disease. My husband is still unemployed. My daughter lives too far away (but she’s fine). Relationships in my life are facing life-changing situations, some by their own merit, others innocently.


God is good.

All the time.

I met Sara about a year ago, but feel as if I have known her forever. There’s an unspoken bond between people with chronic illness and pain.

Sara was diagnosed with Ankylosing Spondylitis. A disease much like arthiritis, but nothing like arthritis. It is progressive, debilitating. It does not favor. It can be ruthless. There is no cure. Sound familiar?

I am going to leave you with portions of her story. If you are struggling, you will be encouraged.
You will see God’s goodness between the lines, amidst the struggle of her disease. You will find hope, because God is good.

All the time.

And now Sarah’s story.  Sarah was a sweet spirited young woman, fighting for her life with a rare disease who passed away a couple of months ago…

“When I stopped dreaming I could run, I knew for sure my life had changed permanently. The disease I have is called Ankylosing Spondylitis and it’s different for every person that has it, which makes it difficult to predict where your journey will take you. The basic explanation is that it is an autoimmune disease that usually starts in your early twenties and begins by attacking your joints. It is progressive and systemic, but the progression and systems it can affect are as different as your genetic make up. For me, it began in my sacrum (low back) and my spine.

The “goal” of the disease is to attack the joint and build scar tissue around it, causing pain and stiffness. Then the scar tissue eventually (for many) turns into bone and fuses your joints together. Until recently, most doctors believed that AS was a man’s disease and was rarely seen in women. It is now known that it is prevalent in women as well, and they are learning the progression, symptoms and x-ray findings can be significantly different in women than men, which will hopefully be helpful in future diagnosis.

“For me, over the course of the last 14 years, the disease and my life have changed dramatically. I won’t go into a play-by-play for you, partially not to bore you to tears and partially because all of the years tend to run together after awhile. I will say that in the beginning it was pain like I had never felt before, which was compounded because no one knew what in the world was wrong with me. I had a lot of the knowing nods as if to say, “Oh, that silly little girl is overreacting.” I actually had one doctor ask me if I had a boyfriend that was stressing me out. I wish I could tell you I had a witty comeback for him, like “The boyfriend is fine but I’m finding you very stressful.” But when you are exhausted, sick and in pain all you can think to do is look at him bewildered and say, “No. I’m not sad, I’m in pain.” And sadly, that doesn’t always get you very far.

“Once the diagnosis of AS was put on the table, everything about my body started making sense, and things that I didn’t know went together, turned out to be symptoms of the disease. The pain, the digestion problems, the night sweats, the bouts with iritis. Ahh, the good old days.

Things have gotten more complicated since then with breathing issues, swelling of joints and more areas of my body being affected… and the exhaustion. I also have leukopenia, which basically means my white counts remain lower than normal, and actually decrease when I’m sick instead of increasing. This means I have to be ridiculously careful about being around someone with the sniffles for fear of getting pneumonia, which has become somewhat of an expected yearly ritual for me.

“My life now, to put it bluntly, is painful. If I’m having a good day it means my pain is moderately high at best, and I’ve showered and gotten around my house without having to give myself a pep-talk first. I have someone who gets me groceries once a week and another person who cleans my condo every other week. A year ago I was able to drive myself periodically to Walgreen’s for short little errands, but it’s been a long time since that was an easy trip. I don’t count out that I will be able to do that again, but it’s not in my reality right now.

“And living in the now is the easiest way to handle my life. It all changed when I realized that in my dreams at night, I was walking with a cane or crutches. And in my waking thoughts I can’t imagine I ever ran track or jumped over a hurdle without it being painful. I don’t remember what it felt like to not have pain, and while that was upsetting at first, I think it is actually easier this way. I don’t long as much for something I can’t imagine. I think if I dreamed I was running every night, waking up to the reality of having to figure out how to get out of bed would be crushing.

“Other than the crutches and the wincing in pain thing, when I’m not on steroids I look pretty average and healthy. And I don’t want to look otherwise. I will write about this as part of my life, but I’m not going to lament endlessly on this blog about my daily struggles and pains and complications. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. I’m more than a sick person. I’m a person who is sick… and as I often tell my mother, my body is brutal but I’m ok.

“My life is a difficult balancing act, but I am not being flippant when I tell you that I have a good life. I have a home, friends, love and support. I have that cute dog I’ve talked about at length and I have the time to really be there for people when they need me. This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted. And if you’re taking a moment to read this blog, I’m not taking that for granted either. Thanks.”

Live well. Choose Joy. Sara did.

Journeying with you,

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