So I haven’t posted any blog posts lately because I’ve been distracted for the last month with two very stressful concerns. The first stressful concern has been a major new “reboot” (a la Star Trek) of an old product at the office that’s years old that is so heavily overhauled on the front-end it’s being renamed and given a version of v1.0. We’re scrambling to get that done.
The other concern has been related to a couple blog posts ago here. I’ve been trying to figure out what on earth was going on. Those weird dizzy spells became tingling and involuntary facial cramping on the left side of my face, and I found for a time that I could trigger the attack simply by inhaling deeply (yawning, sneezing, sighing, etc).
I went to my doctor to set up an appointment, and they insisted that I go to the ER (emergency room). So I did. I spent four hours there, got a heart x-ray, an EKG, and a CT scan. Everything came back negative, they had no answers for me. Went back to the doctor, and after having me perform a number of basic physical tests he said what he’s said twice now: “Well, is it all in your head? Yes! It is! But it’s probably real, and we need to figure out what’s going on.” He scheduled me for an EEG and referred me to a neurologist and sent me on my way.
I cancelled the EEG because the co-pay was very expensive, and the symptoms had disappeared (coincidentally, just as I stopped drinking diet sodas, as I thought [and hoped] it was aspartame poisoning).
I went to the neurologist, an intimidating elderly woman with tall stature and glasses, and she asked me a series of questions and let me tell my story. She had me do more basic physical tests, and scheduled for me another MRI scan and another EEG test. Scheduling me for a follow-up appointment for six weeks later, they told me that they don’t tell me scan/test results over the phone, but if they find something, they’ll call to schedule an early appointment.
I canceled that EEG test again (same reasons as before), but did the MRI. Within a day or two, they called me to schedule an early appointment. This was the first time my heart sank. Why an early appointment? They must have found something. What could they have found? A tumor? Oh no..
That was a week ago. This morning I showed up and was asked what symptoms I experienced as a child. None, apparently. I was asked whether I lived as a child in a high altitude location. Nope.
“Okay, Jonathan, here’s the story for you. You appear to have multiple sclerosis!”
I was stunned. Actually, I was confused. I didn’t really know what MS was. She explained it was an autoimmune disease where the immune system kills off good brain tissue, leaving lesions in the brain.
I wanted to be in denial. “Are you sure? Is this really the diagnosis? It can’t be anything else?”
“It looks like it. Let’s look at your scans. Come on over here and look with me.” She had my brain scans on the film lamp. “These are different slices of your brain, this here is the top of your brain, this is the bottom, see, that’s where your mouth is, your teeth are in that area. Alright, now look here. See that white mark?” She pointed to a large white speck about two millimeters in length and half as wide on right side of the half-life-size photo of a slice of my head. “One,” she points to another slice image on the film, “Two, .. and then that’s still two, it’s just perpendicular to the scan so it’s the same lesion higher up in your brain, .. Three, .. Four, here on the left side of your brain, .. and Five. Five lesions.”
I didn’t know how to respond. “Those marks can’t be caused by a TIA? I thought for sure it was some kind of TIA.”
“No! TIA looks nothing like that. I look at these brain scans all the time.
“I really didn’t expect to find this. This was very surprising. So the good news is that MS is treatable. The bad news is that treatments must be injected.
“I’m sending you home with materials. I could sit here and talk to you for a very, very long time about MS, as there is a lot of information about MS and a lot you need to know, but I’m going to provide you materials. This is your homework. Are you computer savvy? You look like you’re good with computers.”
“Oh, I look like a computer nerd do I? … Yes, I ..”
“I’m going to give you a list of web sites that you can look at about MS. Take a look at them, there are lots of communities for people who cope with MS.”
I left that place, CT scans and MRI scans under my arm, having no idea what this meant. “Hey I don’t have cancer, cool. And I have a name for these weird symptoms.” I showed up at work and laughed about it with my co-workers. “I apparently have MS. That’s the good news!! The bad news is that I’ll have to step out from time to time to do some more tests.” And, “it’s not fatal, great, otherwise would be time to create your bucket list! … Have you seen Bucket List?” We chatted about the movie for a few minutes...
I went through the day happy. I thought that the five lesions were it, that if I’m okay now I’ll be okay forever, that the damage has been done, and I’ve already experienced what came of it.
When I got home, though, and started reading those materials, my attitude changed. “We cannot predict what symptoms any one person will experience with MS. What we do know is that most people who have MS eventually develop a permanent disability.” That one sentence had me frozen for a few seconds as I swallowed hard and began to take in the seriousness of what I’ve just discovered about myself and the rest of my life. To whatever extent “I” fall into “most people”, I am guaranteed to develop a permanent handicap or disability because of this problem. I started to cry. This isn’t an incident I’m going to “get through”. This is a life-term prison sentence.
I continued reading the materials, and then when my sister called I was crying again. As we chatted, I realized that we (my sister and I) both knew a guy in church years ago who suffered from a rare case of MS. He was stuck in a wheelchair, completely paralyzed, and could only move his eyes. His wife had to vacuum out the mucous from his lungs and throat so that he could breathe or he would die. Eventually, he did exactly that. He died.
His was a rare case of MS, but it has been in this late afternoon that the seriousness of what my neurologist has revealed to me has sunk in. My sister and I sat there crying on the phone, telling each other how much we love each other.
I’m crying as I write this, my entire left side of my body feeling slightly numb and tingly. I don’t know what will become of this. I might live a long, fulfilled life, with only occasional relapses (best case scenario). I might lose my cognitive abilities and my ability to walk and to perform at a job. Things might not change for years, they might drastically change in the next few months.
I just don’t know.
So I’m going to start counting my days of cognitive and physiological normalcy, thanking God for every breath and the mental capacity to value each day.
No one ever knew what the future held for them anyway, to ignore our inevitable mortality and unknown fate is playing Russian Roulette with our purpose in life. I don’t believe anymore that I put this on myself—aspartame overdose or otherwise. It just happened. God let it happen. And to what extent His grace is sufficient for a brat like me, my mortality is something to be grateful for—a greater guarantee of being with Him sooner rather than later.
http://en.wikipedia.org/wiki/Multiple_sclerosis