Sunday, September 23, 2007


The next morning, Saturday, September 1, 2007, I woke up in Ken's lovely green bedroom and and realized my eyesight was worse. I played with it for a while, looking at the beautiful trees out the window, watching the brushed nickel fan turn overhead, alternating covering up one eye and then the other to make sure I wasn't imagining it getting worse. I could now see nothing, absolutely nada, out of my right eye. And, I felt wicked tired, as if I hadn't slept at all. I wasn't sure but I also thought I felt pain in my arms and my chest and I had a wicked headache behind my "bad eye." Ok--This was ridiculous. I MUST be making this up. I put my glasses on, took them back off, and finally told Ken what was happening. "Do you think I should call Kenny Chang?," I asked. Ken, who shares none of the worst qualities of my dad or my ex-husband (Thank God!) said, "He said to call if it got worse and this is worse, right? So call!" I did.... You know how you look back on life-changing moments and try to remember all the nitty-gritty details? The only thing I can specifically remember about Kenny Chang's response to my description of my worsening eyesight was its almost mundane delivery: "Well, that is consistent with MS." And the world stopped. So, it was the Saturday of Labor Day Weekend, the kids were away, I was half blind, scared, tired, achy, had a neuro-opthalmologist tell me I probably had MS, and I had to make a choice. Kenny Chang said I could wait until Tuesday to schedule an MRI or I could go to Mass Eye and Ear ER that day and they would send me to Mass General next door for an emergency MRI. He said it could take up to 8 hours. Ken (Bald Hot Boyfriend, not neuro-opthalmologist) and I took a walk on Wollaston Beach and explored my options. I love that Ken listens, tells me what he hears, tells me what he feels, tells me what he thinks, but lets me make my own decisions and supports them, whatever they are. So, here's what I remember about that thought process: I was remarkably clinical. I don't remember crying or carrying on at all. If I had a brain tumor and was going to die, I wanted to know right away so I could make "arrangements." I'm not quite sure what I thought those arrangements would have been but they would have involved spending as much time as possibly kissing, hugging, playing, and loving the kids; talking to people about serious things I needed them to know before I died; visiting people and places and listening to music I loved before passing on to heaven where I would see my grandfather, Mr. Rogers, my friend Lynn, and my cat Basil; eating things that taste good but are bad for me; and probably having lots of sex. I didn't think about sky-diving again but I think that would be a good idea if I had a few days to spare. If, on the other hand, I did not have Liz's brain tumor and I was not going to die but I was going to go completely blind, I would want to know right away so I could look at everything and everyone really hard and really long so I would remember what they looked like when I could no longer see. I worried that Zane and Ruby would forever be in my visual memory as a 4-year old and an 8-year old, but I thought, "I can handle this. I can handle this. I'm a good handler. I know how to handle things." There's a mom at one of my meetings who is blind and she seems very close to her son, even though she can't see him. I would befriend her, take classes in Braille, get a seeing-eye dog, and learn to feel faces. I once read that blind people made better lovers because they compensated with their other senses. So, great. I would become and even BETTER lover (as if that would be possible!) and get a dog for the kids! I also thought: The kids are gone so I need to take advantage of this free time to get this all settled. I think, deep down, I thought the doctors would learn that it was all some big mistake, I had something benign and treatable wrong with my eye, I was making a big deal out of nothing, they would discover what it was, I would take a pill, and it would go away. Then, I would be back to normal when the kids came home and it could all just be a funny, scary story to tell my committee. Rather than bore you and myself with all the boring details of waiting 8 HOURS at Mass Eye and Ear and Mass General to get the results of the MRI (with Ken by my side the entire, boring time, even though I kept telling him he could leave), I will cut to the chase. Oh, but wait. Ken and I had a long conversation about getting a seeing eye dog if I did go blind. He pointed out that the condo association would have to bend the rules and let me get a dog since it would be covered under the Americans with Disabilities Act. But, then, I thought about a special I saw or heard on some news magazine show about service monkeys. I love monkeys. I mean, I don't KNOW any monkeys, but I've always thought they were very cool and I like visiting them at the zoo, etc. So, we started talking about my getting a service monkey and that, if I ended up in a wheelchair, the monkey could sit on my head and I would freak people out by not mentioning him at all. We both laughed when we thought about how much Zane would like having his own Curious George at home. Ruby would probably want a girl monkey show she could dress it up like a baby sister. Oh, one more thing before cutting to the chase: I have to tell you about my adolescent drawing. When you get an MRI, they want to know about any metal in your body. The give you a line drawing of a man (with a man's build, a Ken Doll hint of a penis and short hair) and you're supposed to indicate where you have any metal inside your body. I decided, in an effort to enterain myself and be medically accurate, I would have to "feminize" the line drawing. So I drew breasts, slightly longer hair, eyelashes and lipstick, rounded shoulders and hips, and a hint of a vaginal opening. I also, mistakenly assuming that my Meridian IUD was metal, attempted to draw that birth control device on my womanly representation. The male MRI tech seemed horribly confused and embarassed. The female tech though I was hysterical. Smart woman. After the very long MRI where I had to take off my funky cap and reveal my awful hat head, remove my belly-button ring, wear hospital jammies and lie absolutely still and not move my eyeballs behind my closed eyes (not easy), we went back to Mass Eye and Ear and waited some more. We tried to talk about the monkey but I think we were kind of quiet. Then, Kenny Chang went over to Mass General for what felt like forever. When he returned, he ushered Ken and I into a small room in the MEEI ER. I knew it was bad. When something is wrong with a character on a medical drama show, they ALWAYS tell them in a small, private room. If it was good news, he could tell me in the lobby or even in the waiting room or hall. Kenny Chan, in a very sincere voice, reported that, even before he knew my presenting symptoms, the neurological radiologist who read my MRI said, "It looks like MS." The world stopped again. I felt Ken's hand squeeze mine and remembered to breathe. I remember having to ask: "So I have MS?" That's when the double talk started. Kenny Chang said, "Well...your MRI is consistent with a diagnosis of MS." I remembering NOT asking: "What the &@%$ does that mean?" I think I said, "Hunh?" He went on and on about clinical diagnosis, lesions needing to show up on more than one area of the brain and spine, episodes separated by space and time, blah, blah, blah. He said he didn't think it was anything OTHER than MS but that he wanted to refer me to an MS specialist neurologist and there may be future MRIs and other tests to confirm the diagnosis. I don't remember crying then. I went into action mode and said, "So what now?" He told me that I could check into the hospital for three days and start IV steroid treatments which were used to treat the "fire" of optic neuritis (a common symptom of a first MS episode that results in sudden eyesight loss). It was now almost Sunday, the kids were coming home on Monday, and I did not want to go into the hospital. (When I was waiting for Zane to be born (see preemie picture), I was hospitalized for 5 1/2 weeks so the whole inpatient things was a "been there, done that" option. I said, "no thanks" and went home, shell shocked, still blind in one eye, and with a diagnosis of MS. I vaguely remembered that I was suppoed to call for an appointment with a neurologist the following week. I don't remember the night. I know I cried. I know Ken held me. I know we talked. I think I slept. I called a lot of people. I know some of them cried, too.

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