When I wrote my last post I told you all about my friend Scott in the hospital. Duchenne Muscular Dystrophy is a fatal disease, and he has long surpassed his life expectancy. Today, he lives wheelchair-bound, breathing through a ventilator (with a trach in his neck), and unable to move anything except blink his eyes and make some minute movements with his index fingers. You won’t hear him say any of that though. To talk to him, you’ll just hear about his blog, his book, his wife, his interest in photography, and his major, major pet peeve of the use of improper grammar. Within the DMD community, teenagers and young adults dying before their time is almost commonplace news. Hearing that somebody has lived into their mid-40’s is one of the few stories of inspiration and hope. Ever since the invention of Facebook, parents and kids in the DMD world have been looking to Scott to keep up the fight and give them the boost they need. So for him to be sick, it causes quite a stir.
The other thing about Facebook is that it’s a virtual game of telephone.You know, where somebody says something and it gets passed around and around and by the end the message is nothing like it was originally. It’s just such a situation that I find myself in today.
What I know is that for a few months he’s had a stubborn sinus infection that he’s been unable to kick. Then he went out to a game one day, and came home really lethargic so they took him to the hospital. He was treated for dehydration, which messed with his heart a little bit (DMD attacks your heart muscles, and too many liquids stresses a weakened heart out), but they got it under control enough to discharge him. After all, his new wife was coming in to visit from England in a matter of days (she lives in Liverpool and also has DMD, he lives in FL, they began an online relationship, she came to visit in August and they got married – score another one for Facebook) and he wanted to be ready for her visit. So he went home, but stayed lethargic and didn’t really get out of bed much for the next few days – even once his wife came. So back to the hospital he went, where they find his sinus infection has turned to pneumonia. As far as we know, he wasn’t eating, so they did a surgery to insert a g-tube. The surgery itself went well, but now he’s having hallucinations (calling for a nurse that no longer works for him, etc). The hallucinations were preventing him from sleeping, so they gave him morphine to help him rest. Meanwhile, his body had no fever, which is a great sign for both the surgery recovery and the pneumonia. SO, as we continue to pray for his recovery, that’s what’s going on with him medically.
That’s what I know. How do I know? Because that’s what I was told. Who told me? Scott’s mother. The poor woman was harried, hurried, and clearly has a lot on her plate right now, but my roommate has been Scott’s best friend for 30 years now, and so she calls us with updates. And that was her update. Her whole update. So that’s what I know.
However, that’s not how his wife tells it. I’m not a big Facebook rumor mill person, so I hadn’t really seen her account of things. But when I looked, to hear his wife tell it, the man is in critical condition, un-responsive and basically comatose. Personally, I can’t speak to those things. His mother certainly didn’t mention them. Granted, his wife has been known to make things up or exaggerate things in the past. Once she even targeted me. But….her husband is in the hospital, which can’t be easy, and his mom has been calling us hurriedly between doctor’s chats, so I can’t really make conjecture on anything either way. I think though, that if you’re hallucinating and calling for a nurse who isn’t there, you’d have to be conscious to do so. And if you can call for a nurse, you’re able to speak, which is a really good sign when you have DMD, pneumonia and a cuffed trach. But I’d also imagine that hallucinations would affect your response level. So who’s to say?
What I do know is that the Facebook DMD community has him at death’s door. And, he may be. His mother just didn’t say anything about that. So, I shared what I knew with some close friends, trying to 1) ease their panic; and 2) trying to give them some guidance in praying for him. But because my account from his mother (who is there at the hospital with him) differs from his wife’s account (who is also there at the hospital with him), I’ve been branded a liar and manipulator and generally deceitful. So now, not only is my good friend in the hospital, but I’m essentially losing other friends when all I was trying to do was help! Yikes.
Nothing like a good dose of drama to make everybody’s day better when we’re already worried to begin with!
So what to do? Not much. I just keep praying for Scott’s recovery, for his wife and family and for all his friends that are worried about him at this time. I rejoice that there’s no fever, and that whatever his condition may be, Scott’s lungs are healthy enough for him to speak. I rejoice that he is getting some much-needed rest and pray God continue to work in his body. As for the drama, I give it to God. The truth will come out, if it’s His will. Maybe it is, and maybe it isn’t. It’s not my job to worry about it. My job is to take the hit regardless of what happens, and respond with love to everyone involved. My job is to be so grounded in Christ that my love for everybody I come into contact with overrides any emotional hurt I might be feeling. The way I see it, being branded a liar only hurts my pride – and I’m not supposed to have any of that anyway. So if my pride is taking a hit, I count that as a win. 🙂 Meanwhile I know this is God’s plan, as all things are, and pray that He would use it as He will. The DMD community has a lot of atheists in it. And if a friend’s illness is the tool He chooses for me to share Him with my friends, that’s not for me to question. And I won’t be able to do it if I’m bogged down in the drama. So I’m happy to just let Jesus remain at the wheel of this one.
As for your prayers, thanks for them and keep them coming! Both for Scott’s recovery and praying into God’s will for the spiritual significance of this. Pray that if it’s His will to use me, He would give me the words. Pray that hearts would be softened to hear witness of Jesus, and pray that having such a pillar of the DMD community supposedly at death’s door would cause people to think more about death, the afterlife, and their spirituality. I’m excited to watch the Lord move!