2012 con't - Rebecca goes blind!

I didn't have room in the last 2012 post to include everything so I thought I'd save the more serious one for a separate entry. So, here's the rest of the year!

Things were going along swimmingly through the year until we hit October, at which point I started having these terrible headaches. I have never had an issue with headaches - aside from a brief period when I was pregnant with Joshua - but although nothing more serious seemed to be coming from the headaches, I did notice early on that they were all the same, in a very specific location. The pain would always be across
the top of my head - if you can imagine wearing a headband, right where that would sit - and forward through my forehead, sometimes hurting in one temple more than the other, and eventually further and further down until I could feel it in my cheeks and sinuses. They also got progressively worse; not in a perfectly gradual way - some days were better than others, but overall the intensity got much worse, to the point that some days it was debilitating. I say "they"; I should say "it" because, as I told the doctors, it felt like I'd had one constant headache for a month. Then one Saturday, at the end of October, I noticed during the practice for our ward's Primary program that my vision seemed a little blurry in my left eye. I was wearing my glasses at the time, so when I got home I put in my contacts, went and spend the day at a tango workshop, and not until Monday did I find a portion of my vision wiped out in that eye. It was just off center to the bottom left, and to look with that eye it appeared as if someone had taken their finger and wiped out part of a chalk drawing -  smudged out of its clear shape to blend into the background. So, for example, looking at a palm tree against the sky looked like a normal treetop, normal sky, but halfway down the trunk was smudged out to the left.

With the actual loss of vision we of course sought an immediate visit with the doctor. Ironically - or not ironically, I'm sure that the Lord helped this all to unfold - I had just barely had a physical with a new physician the week before, after thinking all year, since January, that I needed to find a doctor and have a physical. It took me that long to get around to it, but I was so thankful to have that contact just in time for this. Anyway, she immediately set up an MRI for me and scheduled an appt with an opthalmologist, who in turn sent us to a neuro-opthalmologist up in Oceanside, and within the space of a week I had at least 5 dr visits, two MRIs, the blind spot in my eye expanded to nearly total darkness, and repeated assurances from the doctors that it was most likely optic neuritis caused by multiple sclerosis. At that one-week mark, at the worst point of the vision loss, the neuro-opth, Dr. Frishberg, informed me that I was at the "hand wave detection" stage, meaning that I could identify his fingers waving around the edge of my field of vision (or non-vision as the case may be), and after that came "light detection", at which point my chances of fully regaining my vision would be slim. So he arranged for IV steroid injections, and starting the next day I had a stint put in my hand and we had to run steroids through my veins for an hour every day for four days; at the end of the four days came the spinal tap, which was a barrel of monkeys.

You can imagine the shock and upheaval it was to go from being normal with a little headache - in fact with a clean bill of health only a week old! - to being told that I had MS! For the first couple of days it was really difficult. Maybe the first week, because I remember riding home from the imaging center Monday evening, at the one-week mark, at the darkest point of this whole experience - literally!  - Seth was driving and the kids were in the car, having come to the medical center to eat Quizno's for dinner with Daddy while I had my second MRI rather than stick them with a babysitter yet again - and anyway, I remember silently crying and crying all the way home, from the fear and the grief and the frustration at not being able to wash the darkness away with my tears. And there had been, of course, during the previous week, more tears between Seth and me, wondering and fearing what this would mean to the kids and our whole life. But somehow our darkest hours are also those of our biggest growth, and I came to know very quickly the peace that the Holy Ghost can offer as the Comforter.

Anyone who knows me can tell you that I'm not necessarily the most patient of people. I don't like to wait for things. If I decide something needs to be done, or changed, or rearranged, it has to happen NOW. Seth has even been called home from work at times to finish moving some piece of furniture that I've impulsively decided to move and then can't finish and it ends up obstructing the walkways of our home. (Hey, there are worse ways to be impulsive!) So when it comes to things like medical tests, you can believe that if someone tells me something is wrong, I want to know what it is and I want to know NOW. Waiting days or weeks for     results is not something I do well. Until now. I felt anxious, worried, upset, impatient, all of those things at the beginning of this ordeal; and I can tell you beyond any doubt, that the prayers that were offered on my behalf by all of our family and friends and ward members, were answered by the peace that was spoken to my soul in my hour of darkness. I don't know the exact day or time that it happened but sometime after that dark hour in the car, the cloud lifted. It didn't matter so much that I still couldn't see; it didn't matter that they thought there was something terribly wrong with me that would affect my life and the life of my family profoundly; it didn't matter that they hadn't yet given me a definite answer, or that I hadn't even had all the tests done yet and wouldn't know anything conclusive for weeks. All that mattered was that I knew that whatever it was, it would be okay. If God wanted me to have MS, then that's what it would be and we would deal with it; if He didn't, then they doctors would be wrong and it would be something else, and we would deal with it. "It is what it is" is what I would say to myself, and after that point I didn't feel rushed or anxious about finding out what it was, because it didn't matter. I was at peace with my situation and from then on out looked at it as an interesting experience, which it was, in which I could see firsthand the love that my Heavenly Father has for me; the love that my husband has for me, with all of those days and weeks he missed from work and never, ever, ever said a word about it, but was by my side constantly; and the love and support we have from our friends and family and ward family, who all did so much in providing prayers and childcare and meals.

I like to look back at my life and see the ways the Lord has guided my life with experiences and the timing of events that have happened. I saw a lot of that in this experience. For one things, the physical that took me all year to plan - had I not finally gotten around to that, I would not have had a doctor to turn to when I first needed to seek medical attention. Second, my vision loss started literally immediately after an approximately 3-month period of Seth having to work overtime constantly because of deadlines and things at work. The end of this overtime meant that not only could he take the time off without being under major stress, but he also had accrued enough extra hours of leave as compensation to allow him to cover the time away from work without having to take a dock in pay or go through the hassle of pleading a medical emergency. In addition, even from the first day of appointments, we enjoyed having so much time together on our exciting medical dates :) I also had the opportunity of receiving care from wonderful doctors and I felt blessed to have them. I'm not a terribly social person but I always like the feeling of having people brought into my life for a purpose, and I'm grateful these guys were the ones I was directed to. I felt like they took good care of me.

I already mentioned that it was an interesting experience, and it really was. That's not to say I enjoyed it, but I'm telling you it is fascinating to look at the page of a book and, when you close one eye, see half the words just vanish right off the page. To look at something right in front of your face and not see it at all. To sit in the car in the dark night with super bright headlights in front of you, and again close one eye and have those bright red lights simply disappear into darkness. It's an interesting feeling to have a long needle stuffed through your vertebrae, and the twisting and turning pressure mounting until you really believe you're a maple tree being drilled for sap. And that in itself is reassuring - to know that whatever I may go through in life, at least it will be an interesting experience!

I also learned that prayer really does help people in times of trial. I used to think, what's the point in praying that someone who is sick or suffering will be healed, because it's not going to change God's mind about what is in store for that person - they will still go through whatever trial He has laid out for them. Not to sound insensitive or anything. I did pray for people but in the back of my mind I wondered what purpose it served, because it wouldn't necessarily change their situation. Now I know - the answer to those prayers doesn't come in removing the trial, or changing the situation. It truly comes in the form of strength and comfort from the Holy Ghost. And I can't even adequately describe the difference between the emotional agony I initially felt and peace of mind that I felt as more people started praying for us. We truly were strengthened by your prayers and for that I am truly grateful. It strengthened my testimony in an area I didn't even know was lacking.

And, as you know, all's well that ends well. At least the doctors found no evidence of MS, and everything seems to have healed fine, with no evidence of permanent nerve damage. It was optic neuritis in both optic nerves, perhaps caused by some virus, and according to Dr. Frishberg not likely to recur. Dr. Leung, the regular opthalmologist, didn't seem quite so certain that nothing will happen again and wants me to come back in July. I tend to agree with him - I still have headaches and eye tenderness sometimes, so I'm not convinced that it's necessarily over, but I'm fine for the time being so that's all that matters. Also, I remember one of the Priesthood blessings that Seth gave me told me that, in a nutshell, this would be the most difficult trial of my life and in later years I would come to see why it was necessary. So, I feel like, if that was the worst of it, boy did I get off easy! But i'm not expecting that it's over yet. Time will tell and in the meantime I am trying to not take my health or vision for granted.

But I can't end the blog post without a funny story. The week I had the IV and the spinal tap, Seth's dad was kind enough to fly down here to help take care of things at home. We all enjoyed having him and appreciated the time and help he gave us. I mentioned that to Hannah once recently when we were talking about this experience. (Side track a minute: Naturally the whole thing kind of scared the kids, especially Joshua. I tried to be positive about it, and even make little games out of it (for example, close my right eye and have the kids make some kind of a face and then I would guess looking at it with only my blind eye if it was a funny/sad/scary/silly face, and they thought it was funny when I was wrong because I couldn't see...I think Joshie though it was kind of sick though...) so the topic still comes up once in awhile as a "what if you get sick or go blind?" question.) Anyway, I was telling Hannah to "Even if Mommy is sick or something happens, there are still people who love you and will take care of you...remember when Papa came down and helped Daddy take care of you?" And Hannah looked thoughtful for a moment and then said "Yes, but...it was like having two daddies, and that's just not appropriate!"