Originally written: July 2, 2015
Day four of infusion week. Today is a big day. Today we find out what is really going on inside my body. Brian and I are escorted to the small room—I think it’s the same one from just a week ago. We sit in two chairs right beside each other, close enough to hold hands. The doctor comes in within a minute or two of the nurse leaving. He is a nice looking man—small in stature, peppered hair and a youthful sense about him. I think I only really like him because he looks like one of our good friends, and so I compartmentalize him as having the same personality, as if his looks have anything to do with it.
He hasn’t minced words since the first time I met him eight days ago, and he’s not about to begin now. “It seems your case is a little more advanced,” are the first words out of his mouth.
Relapsing-remitting is overall a good diagnosis, but the rest of what he says makes my heart sink.
It’s hard to listen the rest of the time, and I think I already knew this was coming…
“But this happened so that the works of God might be displayed in him.”
In me.
He continues, “You have more enhancing lesions in the brain than we’d like to see…this many in your spine…we’d prefer that there were none. What can you expect? This percentage of people will be in a wheelchair by…at some point you can expect your brain to start shrinking…”
“Wait, what?” I stop him there and get up to retrieve a tissue as the tears begin to roll. He stays silent for a moment—stoic.
I’m tuned in, but I’m tuned out. I can’t process that these are only what if’s, maybes… . I tune back in when he says, “I know we discussed having more children when you were here last week. I understand that I said people with MS often have children. But I need to be honest--I think they are out of the question for you. With your case, it’s just not safe to be off these drugs for a year.”
The tears stream down my face. We were planning to try again next month.
But I’m not most people.
He continues with treatment options. According to him, the majority of the drugs won’t be strong enough. I really have two options. He explains the risks and some testing I’ll need to see if I’m even eligible for the one. He encourages us to make a decision quickly.
“We’d like to pray about this,” we tell him.
“That’s fine,” he says, “but we need to get this under control.”
When the appointment ends, I sit in the waiting room with Brian, waiting to be called back for the various tests and blood draw they need before we leave. I don’t make a sound, but I can’t help the tears.
I really don’t know much about MS. Since the phone call last week, he told me, “Whatever you do, DO NOT research this on the internet. You must only go to the National MS Society website—it is the only one that is reliable. Wait to talk to me in person." And can you believe it? I didn’t look. I couldn’t look. But now I know--at least a little--and the tears stream silently down my face, as all the other patients look at me wondering what I was just told behind those closed doors.
I know it’s not the worst case scenario—in fact, the relapsing-remitting diagnosis is great news relative to the situation. I don’t have cancer, I’m not dying, I don’t have so many other horrible options. But this is real to me.
This is real to me.
And there is a tension inside of me. I feel as if something has been taken. I feel a real sense of loss. Of who I am. Or who I was. Or who I thought I was. And yet, paradoxically, this sense that in my surrender, I have gained something intangible, something that is filling me up even as it empties me. And I know it is of the Lord.
***
After stopping at my mom’s house to explain everything to her, we head home. Exhausted. As we are pulling into the garage, my phone rings. It’s the Cleveland Clinic. As soon as I was diagnosed last Friday, we of course, decided to get a second opinion. We got on the computer, my brother started searching: what’s the best in the country? And what a blessing—it’s in our backyard—the Cleveland Clinic. I was originally scheduled for an appointment in a month but now they are calling to offer a sooner appointment for next Tuesday. We take it.
Even in the midst of today’s struggle, it is a reminder of the Lord’s incredible faithfulness. I will need all my records and copies of the MRIs. With the holiday weekend approaching, it looks like I’ll have to go get them today. It’s the last thing I want to do, but it must be done.
I think of the plans I had this afternoon to see a young lady who has attended our church at times, and I am so sad I’ll have to cancel. When I think about MS and just the short time I’ve had it, I think about how it has already monopolized so much of my time and my thoughts. Am I going to allow it to take everything? No. I decide to take her with me to pick up the MRIs and the records.
On the way home from the hospital, we pull into a parking lot just to chat for a few minutes. I can tell she wants to ask me something, and I tell her it’s okay—I’ll answer what I can. So she shoots: “I’ve heard people talk about your diagnosis,” she says. “And all I hear people say is, ‘Abbey’s so strong. She’s so strong.’”
And she looked up at me: “What is it like? To be strong?”
And my heart hurt in that moment because this sweet young woman really does see me as strong. And in this time of ultimate weakness, where my life seems as though it’s spiraling out of control, my flesh wants me to let her think that I am. It would be so easy to tell her I’ve got it all under control, that this is easy and that I really am strong. My sinful pride is glad she thinks I’m that strong.
But the Lord tells me another thing…the Lord tells me to speak Truth. After all, that’s why she came along, that’s what I pray for—opportunities to show how the Lord is working. I reach over and grab her hand. Here is my opportunity: “It’s not me,” I say. “It’s not me. It’s the Lord.” And I remind her that when I am weak, then I am strong. That any hope I have, any peace I have comes directly from the Lord. That I plead with Him day and night to uphold me. That this peace I feel is not of this world. I am nothing without Him. I am not strong, but He is the Almighty.
And sitting in that parking lot, as tears roll down my cheeks for the second time that day, I am reminded of the Lord’s will. This is definitely not my will. And that sucks. Or does it? Once again, I am reminded that MS has given me another opportunity to share about the love of Jesus—to share that my life is nothing without Him. We turn on the song that has become my theme song of late—“It Is Well.” We sit in the quiet peace of the car—people zipping by on the road beside us. But none of that registers. We just hear the music and nod our heads when we hear again that “the waves and wind still know His name.”
And I know it rings true and I tell her so: “Far be it from me to not believe.”