Isn’t it odd how quickly life flies by? I mean, events like an engagement — That’s understood. So much anticipating, building up to this one moment, one day… and then… poof… It’s over. This frustrates me — The inability to slow down time, to know what will happen in the future so that I can desperately cling onto what is important today. Take now, for instance. I have a death grip on reality. I want to savor every little engagement hiccup, remember each agitating wedding planning moment, and never forget the feeling of my heart fluttering every single time I think of marrying James. I want to remember, feel, know all of this. Some girls get wedding planning wrong — very wrong. They feel this is “something that has to be done” to get married. Yes. But, what they don’t realize is this is the fun part. If you can’t enjoy, relish, love planning your own wedding… what is there to look forward to?
Looking forward is exactly what I don’t want to do too much of though. I know before I realize it, James will have finished saying his vows to me, our wedding bands will be on our fingers… and very soon, we’ll have a new definition for “every day.” While I’m absolutely 150% looking forward to our future together, ready for this amazing life to begin… I just don’t want to concentrate solely on it right now. …But instead, that’s what I’m doing. Yes instead, I’m concentrating on November.
November as in the month of November… as in exactly a half a year away. I blame it on the doctors… who I’m so angry at for ruining my utopia-mindset. Now all I can think about, can absorb is what will happen six months from now?
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Yesterday, I had a follow-up eye appointment with my bow-tie friend Dr. Thurston. With me — James, standing strong by my side once again, along with my mom — who had missed meeting Dr. Thurston the first time and wanted to know more about this neuro opthamologist this go around.
We waited… and waited… and waited… and waited… and I’m debating on writing an entire computer-filled screen of “we waited”s because that’s quiet frankly exactly what happened. We got there a few minutes before our appointment at 2:30 p.m., checked-in, and sat in the waiting room for about 20 minutes. Then we were all brought back… into this incredibly tiny, stuffy room without a window, AC or any form of air circulation. It was so bad, they knew it because there was a fan placed in the room we could “turn on if we needed.” Inside this cramped room is where we did our waiting… and waiting… and waiting. Waiting almost two whole hours for Dr. Thurston. I’m not joking. T.w.o. h.o.u.r.s. Who does that?! I feel this is becoming common practice in doctors’ offices — just leaving your patients stranded and waiting behind closed doors while they struggle to deal with whatever brought them there in the first place. I mean seriously — Why?! I’m still so fired up about this I want to develop a group tackling the problem… similar to the group that is tackling airmac waits in the terminal. Once again, I remind myself, this is the exact reason why I like to have people go with me to the doctor’s office. I would have lost my damn mind. In fact, the way I’m getting all hot and bothered about it again shows maybe I did.
Doing a quick fast-forward through our waiting, Dr. Thurston arrives about two hours later to three very miserable, very unfriendly patients — well, one patient and two guests. He does a few eye check-ups on me, slowly types on his computer my progress, and then it’s time to discuss. “Well. This is incredible. Your exam is magnificent. You went from being legally blind to having 20/20 vision.” James and I both agree we think he was even shocked. It’s true though — I had passed every single eye test they put in front of me. Maybe I faltered one time, but gosh darn it all — I can see colors, the fuzz is mostly gone, and even the white light has dissipated. My vision is practically back to normal in my left eye! Not only that, but my pupil function had returned to normal and my optic nerve still appears fine (from what he was able to see). So, as far as what to continue talking about when it comes to my optic neuritis, well, as he said, I’m “doing beautifully and wouldn’t change a thing.”
But what caused my vision to be restored in the short course of two and a half weeks? No idea. He explained it happened much faster than the anticipated two months or longer, but that there’s no way to know how or why that happened. Was it the steroids? No… well, maybe. A small maybe. The steroids may have furthered things along, but in most cases, optic neuritis just clears up — as magically as when it first appears. As far as the steroids, he repeated why he wanted me to get the treatment. “It reduces her risk of anything like this happening again,” he told my mom. Basically, those IV steroid treatments dropped my risk of having another episode from a 25% percent to a 12% chance. Just like that. …But what I didn’t catch the first time was the risk decreased for two years… only two. In fact, during those two years, I can still have another episode, but more importantly, past that two-year-mark, I’m highly susceptible to have another occurrence. …And another occurrence would mean I have multiple sclerosis.
What to do? That’s what all three of us wanted to know as we looked at my wire-rimmed, balding, bow-tie doctor. What should we do? What can we do? What does the future have in store for us? And here came talks about the future. “The future is hard, if not impossible to predict,” he said, sadly. As far as my optic neuritis, I’m told it could come back when I get hot. “If it’s a hot, humid summers day, you may have trouble seeing again,” Dr. Thurston offered. Beyond that though, the main focus is now on MS. He went over my MRI exam, explaining I do have “scattered white matter” which shows I’m at a greater risk of having MS — but that I am not diagnosed with that disease right now. To reduce the risk of developing the disease, the IV steroid treatments were highly suggested. Past that… we wait.
Isn’t that the worst thing a doctor can tell you? I think he knew this too… and felt bad. He offered up actions — In six months, I need to get another MRI. This will re-check my “white matter.” That means if there’s less “white matter” than I have right now, it’s time to celebrate — buy a round for everyone I love. But if I have the same amount, well, I’m still at a high risk of developing MS and more MRI exams will be needed throughout my future. …And if I have more of this white matter? MS. That simple. That’s the answer.
How one can be diagnosed with a disease they cannot even pronounce is beyond me. How can one have this “stuff,” known as “white matter” — which I imagine as static on a television screen — floating in their body, buddying up with their nervous system? How can one just wait… wait to see if they will be handed a disease? Wait to see if they will need medication to battle this for the rest of their life? Just wait.
So this is why I’m focusing… but trying not to focus… on the month of November. My follow-up visit with Dr. Thurston has been scheduled, and it’s assumed my second MRI will come before I see him again. By the time all these MRI exams are over I’ll either not remember the definition of “claustrophobia” or I’ll have to be tied 24/7 in a straight-jacket. …That was a joke. A bad one. Sorry. But in all truth, this is why I want to latch onto everything, everyone, every moment that’s happening right now. Sure, there’s a chance nothing bad will happen in my future. There’s a chance this story will go down as one of the best “Remember what happened during our engagement” laughs anyone ever told. …But there’s also a chance things could be very different… very soon. Only six months. It seems so far away… yet too close.
I’m so very angry at the doctors for making me concentrate on six months. I’m so very angry they took James and my engagement and made everyone focus on something else. I’m starting to enter this moment of anger. …But I cannot. I have to try to look at what’s good — James, my family, my friends. All are so so good.
People have come up to me and said I’ve been strong throughout this. The truth is, I haven’t. I feel bad I’ve led you to believe something different, but the fact is I’m just trying to take every day as it comes. I’m no stronger than a million other people in the world — people who have MS and people who don’t. And I’m no stronger than you — all of you who have reached out to me, calling me, talking to me, giving me hugs, encouraging and supporting me. This is why you see me as “strong” — because at that moment, I have you by my side. Thank you. A million thank yous.