Yesterday Carol came over to begin helping be go through the storage containers in the spare room and organize the memories stored within. We threw out some more stuff that had no business being kept and she read things I had written before losing my sight. The most valuable things were letters I had written in my drinking days. What a reminder of why I don’t drink! One line read, “I’m soooo hungover. I know a beer would help but I’m scared.” That pretty much summed up the end of my drinking days.
She also looked through a CD full of pictures from my partying days. It was really good to reflect and remember but it also left me rather exhausted and numb. There were also many reminders of Mom and my childhood. We did this for about five hours. This morning I felt the urge to continue writing my story here. I haven’t written anything in the my story label since 2009. Wow.
So when last I left off, I had been sober a year. Everything was pretty great. I had a host of amazing friends, a good job, a nice car and an apartment I had never drank in and loved. Life was just pretty spectacular. I was very involved with a fellowship of young sober people. I was twenty-seven. Life was great! I loved being sober!
There was a young people’s conference in Prescott, AZ in May of 2006. I was thirteen months sober and hadn’t planned on going. I didn’t want to spend the money since I had just spent a lot going to a conference in California. Then I decided it would be fun to make a day trip out of it and just go up for the Saturday night main speaker meeting.
My friends had already all driven up and I didn’t want to make the drive alone so I called my friend G, my ex-boyfriend who had become a great friend, and asked if he wanted an adventure. He wasn’t in the program, but agreed at once to take the trip with me.
A couple days before that Saturday, I felt like I had an annoying migraine behind my right eye, which was odd, because I had always had migraines behind my left one. Then the vision started getting weird, kinda like looking through TV fuzz. I had had a week long migraine like this once, but in the left eye, so while it was strange I wasn’t concerned.
The morning of the trip, it was as if a curtain were slowly being lowered over my right eye. It started like a black shadow just on the top of my vision, and the migraine-like pain was still there. It ached when my eye moved. I was excited about the trip though, so put it aside, figuring I’d go to the doc on Tuesday if things were still weird.
Things got worse by the time we arrived in Prescott. I could hardly see out of the right eye. The entire top of my vision was obscured. The pain was getting really bad. I made it through the meeting and even managed to dance for awhile afterwards and then on the drive back I could no longer ignore it. Moving my eyes to check my mirrors or glance behind me to change lanes was becoming excruciating. Headlights were like daggers into my brain. We were driving back in the middle of the night.
We stopped at an IHOP and while we ate, we discussed my eye. I thought it must be a detached retina or something. We talked about the ER but I was trying not to go that route. As we stood in the parking lot after eating, I looked at a street light. I closed my left eye and the light vanished. The right eye couldn’t see the light. I decided the ER was indeed absolutely necessary. G drove the car back into town and straight to the hospital. It must have been four or five in the morning on Sunday.
The ER was blissfully empty and I was in good spirits. I was very sleep deprived and goofy and had had a great time with G on our little trip. I didn’t wait long before the triage nurse called me back. G went with and my vitals were checked. I was asked to read the eye chart, which I could do until they asked me to close my left eye. I still was in good spirits. Whatever it was, they’d fix it.
They took us to an exam room and the doc came in. He was completely confused. Nothing looked detached or torn but my pupil was doing something strange. He had G look too. When light was shined into my right eye, the pupil would dilate and then bounce. Literally bounce. He showed me in a mirror. The brown strands of color around the black pupil bounced in and out lazily. The doc brought in other docs to have a look.
Finally they wanted me to see the ophthalmologist on call. I would need to go to his office. They told us where to go and I knew the place. I had taken my Gamma there. It was the same doc.
We met him at his office at six or seven on a Sunday morning. It was strange to be let in by the doc and have no staff or patients around. It was just the doc and G and me. He examined both my eyes and I told him he had done surgery on my Gamma’s eyes. He recognized the name.
Suddenly he backed away and said he wanted me to go back to the hospital and have an MRI. He would call and arrange it as we drove. He wanted it immediately. My stomach began doing cartwheels. This did not sound good.
“I’m worried about MS,” he said. “This looks like optic neuritis, which often presents in multiple sclerosis. I want you to have an MRI immediately.”
I stared at him. I had an eye problem and this man was telling me something was wrong with my brain? I knew what MS was, sorta. I loved this movie called Hillary and Jackie, about a cellist who had MS. It was a true story.
I peppered the doc with questions. Couldn’t it be something else? You’re sure the retina is ok? Anything but MS. Please! He was very matter-of-fact with me. He hadn’t seen optic neuritis in a patient without MS. The condition is usually temporary, with vision being restored, but MS is not temporary.
G drove me back to the hospital. They whisked us back into a room and I was prepped for the MRI. I had never had one before. G and I sat in a daze, sleep deprived and scared. He and I went all the way back to when I was a freshman in high school. I was so grateful he was there. I didn’t call anyone; I didn’t have time. That ophthalmologist must have made it very clear that I was to have an MRI STAT.
All I could think about was my lack of insurance. I had just started a new job in the cytology department of a lab, preparing specimens for testing. My benefits wouldn’t be active for another ten days. Luckily they enrolled me in Arizona’s version of Medicaid. A hospital visit is the easiest way to get that accomplished.
I actually slept in the MRI machine. I was all bundled up in blankets with country music coming through the headphones clamped to my ears. I found that machine comforting. When they pulled me out however, my right eye was completely blind. I thought it wouldn’t open. It was open, just not seeing.
G and I waited what seemed an eternity for the results. The doc assigned to me looked like Detective EAmes from Law and Order: Criminal Intent. She was very nice. I remember laying on the gurney, cotton ball taped to my arm where the MRI IV had been. G was sitting in a chair next to the bed, leaning his head against the wall. We discussed all my strange ailments I had experienced while we had dated in my drinking days. Could MS have been the cause of all that? I had been through heart tests and blood work but nothing had ever shown a thing. After I got sober, my doc and I thought it had all been my alcoholism. It made sense. It could have been.
When Dr. Eames finally came back and delivered the news, brain lesions, definitely MS, need to give you steroids, should admit you, all I could do was cry and scream at her, “what the F*ck did I bother getting sober for!!!!” she placed her hand on my arm and told me staying sober was the best thing I could do for MS.
They hooked me up to another IV and I questioned what they were giving me. No narcotics, I’m sober, no narcotics. Steroids, that’s all. Why steroids? It’s what we do with the onset of MS. Why? Questions. Everything a blur. A gram of Solu-Medrol began pumping into my arm. A gram? Will I get addicted? Will I have super human strength? It’s not the stuff the athletes take. Oh. But you need to have someone with you. You could go a little crazy. I’ll stay with her. G would stay with me. Watch her for any drastic mood changes. I wasn’t being admitted. Another doc wanted me admitted. I’m chairing a meeting on Tuesday, I need to go to meetings, don’t admit me. Ok but come back for the next three days for steroids. Three days? Three days. Outpatient, come back. Call your doctor. You need a neurologist. Steroids dripping through the rubber tubing. I can’t see out of my right eye. It’ll come back, the vision would come back. What else will happen to me? Will I be paralyzed? We don’t know. It’s different in everyone. Multiple Sclerosis. Thirteen months sober. New job. Love my life. MS. Right eye can’t see. Steroids.
I remember calling my sponsor. I remember G driving us back to my apartment. I remember we had stopped and gotten fast food. It was a Sunday. Monday was a holiday. G would need some things from home. I went with him. We told his parents. It is all such a blur. We came back to my apartment and my back hurt. My body hurt. I wanted to sit in the sun. The sun helped. We were so tired but we couldn’t sleep. We had known each other so long. We had been in love. We had lived together until my alcoholism drove him away but he was there, supporting me. Georgie was having a barbecue the next day. I wanted to go. What if I got so sick I could never go again. I had to go.
I went, after my steroid treatment the next day. I crawled into Georgie’s bed and we cried and cried. She had just been through something huge, too. At the barbecue people asked what was wrong. Other sober people. I told them. I cried. I told others and cried. Georgie told others and we cried. I hadn’t told my family. I couldn’t see out of my right eye. My balance was completely crazy. I was hyper from the steroids but depressed and exhausted. I still managed to laugh. I remember still finding my humor, the day after it all happened. I remember laughing through my tears.
G stayed with me while I was still on the high dose steroids. He went to work during the day when I could be around other people. I didn’t go crazy from the steroids. After the IV doses were done, I had to take pills to taper off at home. The heartburn was terrible. I was hyper and didn’t sleep well. I got bloated and I couldn’t cool off. I hated those stupid little white pills.
I shared everything at the meeting I chaired on Tuesday. I was surrounded by love and support. The timing really couldn’t have been any better. Getting the diagnosis at thirteen months sober, when I had my feet under me and a host of friends, the trust in my higher power, it really was perfect timing. Dr. Eames had been right. Staying sober was the best thing I could do.
I left the job, because with the onset of the MS came shaking hands that couldn’t accurately pour. The sudden loss of vision in my right eye killed my depth perception and accuracy was out. I ran into walls because I couldn’t see on the right side. My left leg had gone heavy, almost dragging at times.
My doc found me a neurologist she loved. She almost felt bad she hadn’t diagnosed the MS before, instead blaming my drinking. I assured her it was good, because if I had been diagnosed when I was drinking, who knows what would have happened? I doubted I would have gotten sober. Things would have been very different.
My neurologist told me not to go online. Don’t go read about MS. Don’t do it. He said most of his patients with MS were “a depressed lot”. He said don’t let the depression get me. Don’t read, don’t look into what might happen to you. MS is different in everyone. He assured me the vision would come back in my right eye, though colors would be muted. I wish he had been right, sometimes.
Ok, I’m going to leave off hear. I didn’t expect to write what I just wrote. I suppose that’s what happens when the memory and the fingers team up, huh? It’s quite therapeutic to write about my past. I don’t know why but it is. Hopefully I won’t wait another two years to continue.