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Eye of the beholder...
At the end of May, I took a Greyhound bus to Texas to help my friend, Jennifer, with her move. I went with the idea that I'd be a relief driver and help with all things move related and give the support needed in the stressful time of a move. Four days after arriving there, things went a little off track for me and I experienced an event that was both terrifying and humbling at the same time. On the fourth day, my right eye was experiencing what I dubbed my "censor bar" as it was about the size and shape of what you see on TV when they censor a scene not allowed on television. I called my neurologist, and was put on prednisone and was told if it got any worse to go to the ER. The next day, the sensor bar grew from the bar to the top half of my vision, and began to slowly get worse. Jennifer took me to the hospital and we waited at the ER and soon I was being taken in for a CT scan and then an MRI. The scans showed no sign of an MS Flare up, but what I had was Optical Neuritis (an inflammatory condition of the nerves within the eye's structure). When those swell up, the vision takes a vacation.
For the Optical Neuritis, I was given an infusion of solu-medrol (prednisone) for three days at 1,000mg each day. Normally this dose of a steroid would give you increased energy, a rapid heart rate, change in body temperature, stomach irritation, as well as a few others, including a metallic taste in your mouth. I've heard stories of people who received this treatment, and they usually include drastic energy increase, insomnia, and feeling like they were "superman" with the added energy. Unfortunately, this was not the case for me. The only side effects I got from it were a slightly increased heart rate, a drastically increased hunger (I'll get into that in a bit), and it made me sleepy. The three consecutive nights I had the infusions were the best three nights sleep I've had in years! The nurses just shook their heads, and Jennifer laughed at me and told me I was very strange (but I already knew that).
Before getting any further, let me explain a couple of things. A few of my worst fears in life are losing my eyesight, flying (as in airplanes), being enclosed in a tight space (yes, I'm a bit claustrophobic), and a law being passed that bans all music other than country.
By the time we got to the ER and were ready to do all the scans, my eye had completely closed off. So at this point, to say I was scared would be a colossal understatement. I have talked to others who have said they would rather lose their sight than their hearing, or their sight than a limb, but for me, I'd rather lose anything other than my sight. So the fear of losing my sight was beyond terrifying. As the right eye stopped working, the left eye did its best to compensate, but had a rough time of it. 45 years of sharing the load and suddenly having to do everything was a bit much for the poor lefty. My good eye decided it was going to protest and kind of went into power-saving mode. If you look through a small tube (like a toilet paper tube) that's about where my left eye closed off to. Not only did it close off, but it decided to blur a bit as well. So at its peak, I would estimate my total blindness to be at roughly 75-85%.
The staff at the hospital were exceptionally nice, and were it not for their kindness, this stressful situation would have been near unbearable. But, the staff all the way up to the doctor were so nice, and so kind to me that I couldn't help but feel in good hands. After the scans, we (Jennifer and I) waited in our room (it was nice and cold. I loved it... they brought Jennifer blankets) until the doctor showed up and gave good news and some kind of scary news. The good news was that it wasn't an MS flare up, and the blindness should go away... within a year. The bad news was that it could take up to that year. I was relieved to hear that I had a very high likelihood of regaining all of my vision back, even if it took a long time.
The situation of Jennifer's move and that whole process was a stressful one, and I was offered a flight back home at that beginning of the ordeal if I desired (everyone would have understood), and had I not been able to get the treatment I needed, I would have had to go that route and I honestly wonder if the stress of flying (it being one of my biggest fears) would have brought on a full blown flare up. luckily that was avoided and we didn't have to find out.
The learning experience through this was that of a partial understanding of what people go through when they lose a piece of their existence (whether that be physical or even mental) that changes their lives in such a way that it becomes as much, if not more of a battle than what was happening in life in the first place. When my ordeal started, it was emotionally intense for me. I was scared, I was so afraid for what this meant for my future way of life. I was afraid of how it would impact how I could handle my current situation of just trying to help my friend in her time of need. It became my focus all while the task at hand stayed the same. I was trapped inside my head in what felt like looking out of a long hallway into a hazy room and trying to discern what exactly was going on by poor single eyed vision.
I say a partial understanding because one thing I have learned over the past few years in dealing with my MS and its difficulties, and now with this, is that nobody experiences hardships the same. One of the worst things I hear from people is "I know exactly what you're going through" because they know of someone who has a similar condition, or experienced something that sounds the same. This is the reason I do not go to "support groups" and such for my MS. I've talked with enough MS patients to realize that most people do not understand the simple concept that no two people suffer in the same manner. What is a walk in the park for one, might be the hardest thing in the world for another. For me, just going 75-85% blind was the biggest eye-opener (pun intended) for me. My mind was opened up a bit and an appreciation for those that carry on day to day despite their handicaps grew inside of me to the point that memories flooded through my mind of those I've known in the past that have had handicaps ranging from the smallest to the largest.
I've also learned that I need to take advantage of the health I do have, even though it's not what it was. Sometimes I get extremely sad about not being able to do the things I used to do. Sometimes I get angry and let myself get miserable dwelling on what I've already lost. I'm not saying that the feelings of sadness, anger, and frustration are gone, but I am saying that I do realize that I need to do more with what I have at this moment. What's gone is gone, and while it does stink, what I have left needs to be enjoyed and used more wisely because at some point it too could be gone. I won't magically lose my frustration at my situation, and I won't stop missing the way I used to feel, but I need to use my time and energy with what I do have left more wisely because, just as my vision took a vacation, with my MS, you never know when more of me might pack up and leave. And, that's just a fact of life that people in my position have to face. It's not a pretty fact, but it is what it is, and point A to B will eventually be reached, it's just what goes on in between the two points that's within my control.
Back to the increased appetite that the prednisone causes. Not only was I put on the pill form of prednisone first, but then had the infusion. The pills are small, like 60mg the first day, 50mg the second and so forth. The infusion is 1,000mg the first day, 1,000mg the second, and 1,000mg the third! So the hunger is just a tad bit out of control. When I was planning my trip out to Texas, I was sending Jennifer some money to hold on to so I'd have some spending money out there and then took $100 with me, so I had $225 for the month I was going to be out there. After doing the infusion, I was so hungry for the next week, I ate through all my money. It was horrible, but the one good thing I can say about Texas is they have Don Camillo (the best food in the world... seriously) and I went there a little too often during that time While on the infusion, cravings would set it and there was little you could do about it, they had to be satisfied! Taco Bell, gumi bears, sushi from Kroger's, Carl's Jr, ice cream, whataburger, Don Camillo, and then whatever I might be craving the next day (not joking). Satisfying the cravings not only held the hunger beast down, but there was a temporary relief from the claustrophobic feel that dominated my life at the time. Eating and sleeping were the two biggest forms of relief, and sleep wasn't the easier of the two to achieve, as I didn't have my bed and two screens and a loud setup to drown out the foot pain like I do at home, so eating was the best stress relief there was, and Don Camillo was the best of the best.So now I just wait on my eye to recover. I've told everyone that I will recover by the end of August, even though the doctor and documentation said up to a year. I am determined to fully recover by the time my classes start, and be able to drive myself and teach without having to explain why my demonstrations on the table are a mile off! So far, my vision is returning ahead of schedule and I fully plan on beating the odds on the standard recovery time. I'll keep you posted!
If you want to contact me, please email me at John@rustyarmor.com