Tuesday, December 28, 2004

I went to bed quite early last night and ended up sleeping straight through to this morning. But my night was filled with dreams.

I dreamt that I was on the beach in the water and suddenly my strength gave out. I couldn't move. I floated, pleading with my eyes for those around me to help me get back to shore. But I was left alone, trapped by a body that was no longer under my control. Slowly, I began to sank until I was lying on the ocean floor, watching those play around me. When my breath finally gave out, my vision faded into blackness.

I dreamt that I was hiking with the women from work, including my boss. We were walking and talking, trading stories about the guys we dated and stories about women who chased after men and about how we had to stay true to ourselves.

We were walking and walking uphill. Slowly, I realized that I couldn't go much further. I tried to explain that I couldn't keep up, but my boss kept telling me that I needed to hike. Finally, I sank slowly to the ground until I was lying across the path. I couldn't move my arms or legs and begged those around me for help. But all they did was tell stories about people who faked injuries for attention. I was trying to say that it was the MS, that I was over fatigued and temporarily paralyzed, but they spoke around me and did not listen to me.

My boss then walked up and leaned over to whisper in my ear. "You have to be your true self."

The women turned and walked away, while I lay in the woods staring up at the trees. After several long hours of waiting, I finally fell asleep.

I dreamt that I was back in grad school. I was trying to find my room. I had a guy with me, but I do not know who he was. We walked around the ground floor of this huge dorm that had an interior courtyard. I kept looking at my key to try to remember where my room was. We finally asked for help at the information desk and I was told it was on the 14th floor. The guy headed for the stairs while I looked at him in disbelief. Didn't he realize that I couldn't walk up the stairs?

I headed for the elevator which I hated. It was about three feet wide and did not always stop exactly where it was supposed to stop. A man walked up and wanted to get on the elevator with me. I kept telling him it was too small and couldn't handled the weight of both of us. Finally I shoved him out the door and hit the button for the 14th floor. The man grew angry and turned himself into a wasp, managing to fly through the doors just as they were closing. He stung me over and over until I managed to smash him against the wall of the elevator. My jumping around to try and avoid the wasp made the elevator swing back and forth on its cables. When it opened half way on the 16th floor, I pried open the doors and wedged my body through. After walking the entire way round the building four times, I finally spotted the stairwell and walk down to the 14th floor.

When I opened the door, I noticed the numbering was in the 2400's when I needed the 1400's and remembered that the numbers changed on each section of the square building. Turning the corner, I ran into the guy and then we headed to my room, 1411.

When I opened the door, I started crying out that it wasn't my room, it wasn't where I usually stayed. It was long and narrow and had curtains for dividers between the sections. The guy kept asking me how it could be the wrong room while I spun around and around in confusion. None of the furniture was mine. I recognized the flat panel monitor I got last year and found my new laptop, but nothing else was familiar.

I sank to the floor in tears and found myself scooping up the papers there. They were all medical bills, representing dozens of doctor visits and tests. They were all stamped in red ink with the phrase "Nothing can be done." I let the papers spill from my hands and then turned to the guy and begged him to leave with me.

He asked me where I was parked and I realized that I did not know. I remembered thinking that it would be easier to find my new Highlander than the old Corolla because it was a larger vehicle and the green would stand out. But when we got to the parking lot that was the size of one for a stadium every vehicle was a green Highlander.

I wandered from car to car until I woke up.

Monday, December 27, 2004

Tonight was a rerun of House in which a patient is diagnosed with MS. It turned out that he had some other disease (the premise of the show being a group of doctors who track down difficult to determine diagnoses). But the initial diagnosis of MS for the teenager was that of chronic progressive. It was a very gloom and doom prognosis. At one point the lead doctor, a curmudgeon if there ever was one, said to start him on the medicine now, without the definitive tests, so that he might be able to walk a few more years and talk a few after that.


Three shows all having MS as a main story line in such a short period. Could not one of them been a bit more optimistic about the disease?

I know reality is the wheelchair. Reality is irreparable neurological damage that the body cannot overcome. I know reality.

But isn't reality also those people who are pictured in the National Multiple Sclerosis Magazine who are swimming, biking, and going to the gym? How about those who have changed professions so that they might work longer? How about those who have had family and friends and neighbors rally around them to help cope with the cognitive and physical dysfunction? I would like to see that on TV...just once.

What next for Hollywood?

I supposed you are thinking that I should just turn off the TV, but it is such a companion in the evenings when I am huddled in the green chair. Lately my vision is too blurry to do much reading. TV is a great distractor.

Perhaps I should stick to HGTV and TLC for a while?

Have you ever heard of beer can barbecuing? Apparently it makes for moist chicken!

Thursday, December 23, 2004

Below is my entry for the funniest true Christmas Story contest at work...would you believe that I did not win?!?

The Turkey that Never Was

When I was little, we had a German Shepard named Nicki. We had originally gotten him for a guard dog, but made one critical error in our selection process.

We had arrived at the breeders just before feeding time. All the puppies were crowded at the fence, licking the fingers my brother and sister and I stuck through the fence and wagging their tails furiously. The cacophony of barking and whining was music to our ears. However, as soon as the breeder’s assistant brought out the puppy chow, all but one abandoned us faster than a speeding bullet. Shortly all you could hear was the sound of metal bowls being scooted around the concrete sidewalk as the puppies fought each other over the food.

All but one. Nicki stayed behind to play with us, and so the three of us begged our parents to choose him. Needless to say his propensity for friendliness precluded him from ever being an adequate guard dog.

However, he did feel we owed him for that missed meal for the rest of his life.

For a while, we added milk and eggs to each of his meals so make them tastier. After all, as children we thought his food was pretty disgusting. We also fed him 12 cups of food a day. But then at his second year check-up, the vet was alarmed by how overweight he was and gave us a stern lecture about the problems German Shepherds have with their hips.

Poor Nicki was immediately put on a diet that did not include a-milk-and-eggs broth over his food and cut his intake from 12 cups to 4. Each morning and evening when we put out his food, he would quickly inhale the meager amount allotted to him and then scoot his bowl around the patio in the hopes we might take pity on him and give him more food.

All in all he was a well behaved, if a bit too friendly to strangers, dog. Until the Christmas I was 14.

My mother’s boss surprised her with a smoked turkey on December 23rd. We only had one refrigerator with a small freezer, so we did not know what to do with the turkey my stepfather had already purchased. Finally, it was his suggestion that we move the raw turkey outside, convincing my mother that it would be safe given that the temperature was hovering around freezing.

After he placed it on the center of our glass-topped, outdoor table, my stepfather spent quite a bit of time pushing the chairs closely against the table as a barrier to Nicki. When he was satisfied with the arrangement, he stood back and observed our dog for a bit. Nicki showed no real interest in the turkey, so my stepfather finally came back inside.

Over the next two days, he periodically checked on the turkey, but found no evidence that Nicki even knew it was there. Christmas Eve, he even crowed at dinner over his brilliant solution, once again pointing out that none of us thought as creatively as he often did.

The smoked turkey was a great treat and we were all stuffed after the Christmas meal. Nobody thought about the turkey outside because it had already been there two days. With all the containers for the leftovers, we still did not have enough room in the refrigerator and my parents were not in the mood to cook a turkey after preparing all the trimmings for our sumptuous meal.

The next morning, I saw Nickie lying in the corner of the yard when I put out his food, but thought nothing of it. At breakfast, my brother commented that we hadn’t yet heard Nicki scooting his bowl about, so my stepfather went to check on him after we were finished.

We were all surprised at the expletives that filled the morning air next (that was the one and only time my step-father ever cursed). We raced outside to see what was wrong and found him waving a bit of plastic about Nicki’s head.

Nicki was ignoring him, lying on his side in the sunshine.

When we grew closer, we saw our dog’s distended stomach. He looked nine months pregnant. Or perhaps more like a snake that had just had a rather large meal.

Somehow Nicki had gotten the turkey off the table without our even hearing a peep from him. He had eaten through the wrapper and consumed the turkey, plastic, gizzards, bones, and all…all but a scrap of plastic and the tiniest portion of the breastbone.

I suppose my stepfather was offended because he always took such care in picking out the turkeys at Christmas and Thanksgiving. Mom just laughed and said she was glad she didn’t have the cook the turkey. Nicki didn’t flicker a tail or bat an eyelash over the hoopla around him.

For the next 3 days, Nicki lay there in the sunshine, hardly moving. Each day his stomach went down a bit, sort of like a balloon being deflated, until he finally looked normal again.

It was another 4 days before we heard the familiar clang of his food bowl being scooted around the patio.

To this day, all we have to do to turn my stepfather’s ears a crimson shade is to suggest, while unpacking groceries, that we could put a few items on the table outside to save space in the refrigerator.

Sunday, December 19, 2004

I holed my first wedge shot from the fairway. On the 18th hole. We used a cart.

Saturday, December 18, 2004

I suppose it was Josiah Bartlett's fault that I foolishly walked the golf course today.

I always use a cart, even if I sometimes walk between shots since many of them are shorter than I would wish them to be. I always use a cart.

But I have wondered what it would be like to walk 18 holes.

By the 8th hole my feet were numb and tingling with pain. [How is it that a limb can be numb and hurt at the same time?] Even so, at the turn I told my stepfather that I wanted to continue.

By the 12th hole, I was calling myself all kinds of foolish, trembling a bit, blowing most every shot, wincing at my steps, and trying to hide it all from my stepfather.

Darkness kept us from finishing the last 3 holes. But I found myself a bit like Odysseus when he taunted the Cyclops from his ship after barely escaping the giant's rage after his previous taunts. I found myself trying to convince my stepfather that we still had light enough to finish. My words fell on deaf ears and we left the course. However, we were about the farthest you could be from the clubhouse.

It was a long, excruciating walk back.

For the record, the idea of backpack straps on a golf bag is far more attractive than the reality of having those straps. If you have them, then that means you are carrying your clubs instead of rolling them along on a hand cart.

I did have my first successful sand save...

Friday, December 17, 2004

President Bartlett's struggles continued this week on The West Wing. The exacerbation has not abated. He struggled with crippling fatigue. He had to be carried in the arms of another person off the plane. He was completely at the mercy of the disease. And when he tried to battle back, he apparently paid a high price (we won't know what price until the next episode).

Even knowing what the price might be...he choose to be the master rather than the slave...at least for a while.

Even knowing what the price might be.

I understand that choice.

Tuesday, December 14, 2004


Is MS the new Hollywood disease?

Tonight on Judging Amy, a woman with multiple sclerosis was in court because the state was trying to remove her child from the home.

I really didn't want to watch this one alone. I really didn't want to watch this one. I want to be a mother. My time to do so is running out. While I cannot really get around the theological ramifications of doing so, I have thought of becoming a single mother myself. Knowing MS would keep me from being a single adoptive parent, I figured the only way was insemination. How do you tell a child that her father was someone you picked out of a book? And how does choosing to have a child by myself via technology fit in with my absolute belief that God is sovereign?

Still, I couldn't help myself. I watched.

And I grew angry. The state wasn't taking her child away because she had MS, but because she was clinically depressed. Now I know that people with MS often suffer from depression, but why did they have to give her MS as well as depression? Not all people with MS are depressed. Many are coping far better than she was doing.

I was angry at the portrayal.

Yet, there was this moment. This moment when the loneliness abated. She described the almost unbearable pain in her feet when she awoke in the mornings. I knew what she was describing. I liken it to standing on knives. I dread putting my feet on the floor because I know how painful it will be. I finally stand and then hobble around until the pain abates.

For a very long while I had thought that I was alone in that symptom, but apparently I am not. Fiction though it may be, there had to be a source for the symptom.

Then, a while ago, I found another person describing the pain in his feet on-line.


Wednesday, December 08, 2004

President Bartlett on The West Wing had an MS attack on tonight's episode. An episode I watched with dread and anticipation.

I had see the previews of the show that let the audience know MS was going to be a focus of the episode. I tried to ask two different people if they would watch the show with me, but neither one understood that I didn't want to watch alone.

He first noticed symptoms with one hand, slight tremors and and inability to really use it. The paralysis spread to his upper body. And someone had to feed him. Then it spread to his whole body. And someone had to carry him.

Part of the reason I watch The West Wing is because one of the main characters has multiple sclerosis. But I had been lulled in to emotional safety because he was doing fairly well. However, the majority of people who have relapsing/remitting MS eventually transition to chronic progressive MS. With the former, the symptoms and attacks come and go with recovery, if only in part, between times. With the latter, the disease begins its downhill course of ravaging the myelin sheathing in the brain and irreparably damaging neuromuscular activity. Walking. Talking. Thinking.

Myriad symptoms that are as idiosyncratic as people themselves. No set timeline or progression at first. You can have good days and bad days...or good years and bad years. It is a disease of devastating uncertainty.

Many people are living full lives, fighting the disease every step of the way. Others have given in, waiting for the inevitable and missing life in the mean while.

I find the disease to be incredibly lonely. For the most part, my friends, family, and co-workers who know rarely mention the disease. They do not appear to think about it either. For example, when I get too hot and grow weak and tremble and disoriented, they neither recognize what is happening or stop to help.

The cognitive dysfunction that I experience on a regular basis often frightens me with the enormity of what I am losing, what I have lost. But I am so fearful of others making light of the moment or criticizing the confusion that I mask. I hide my confusion and aphasia and wait for the moment that I can reconnect mentally.

The only time that loneliness is abated is when I speak with or read about or see someone with MS who is going through or has gone through symptoms I have battled. [Primarily because half the time you ask a doctor about a symptom you are treated as if you are crazy or a hypochondriac when really the doctor is not aware of the full range of symptoms that people with MS experience].

I understood how quietly President Bartlett sat as he lost ability to control his body. He smiled, made small jokes, listened...all the while his mind racing with questions and plans and frustration. While I have not experiences full paralysis, I have in both my arms and my legs at different times. This moment comes and suddenly or slowly it is as if your limb has disappeared. You cannot control it. You are trapped with nothing to do but wait until it passes.

It passes. And you cannot afford to wonder when it will happen again. It passes and you move on.

Tonight was a reminder of the reality of my life. I was sobered. But I was comforted in knowing that while I am lonely. I am not alone in this disease.

Friday, December 03, 2004

Silence on my part is usually an indicator that life is being difficult and I feel as if no one would really want to visit the dark side of my life. Funny, isn't it? Just the time I most wish to write and I avoid the keyboard with one specious excuse after another.

A strange occurrence might be a good place to start.

Two weeks ago, I put my rather long hair into two pony tails and cut it off. It was a rather dramatic moment, more befitting of the outlier heroine in one of the young adult fantasy novels I used in my dissertation study than a middle aged, frumpy homebody.

Okay, 37 is not middle aged (though I oft feel that way with between arthritis stiffness, MS pain, and asthmatic difficulty breathing). And, perhaps I am not as frumpy as I think I am. But I am a homebody.

I do wonder, however, if I were not so incredibly fatigued working full time with three chronic diseases, would I be more of a social butterfly?

Still, I had been wanting a change. I had been wanting something to mark that which has been changing inside. I wished to wear my hair completely down, but when I did, people at work keep making remarks. If it was not in a bun, then I pulled it back in a barrette, like a twelve-year-old school girl (or at least one from when I was in school). Doing so did nothing for my futile attempts to look my age in hopes of being treated as my age. [I am tired of being treated like a girl, carded on the rare occasions I order a drink, and generally patted on the head and told I will understand when I am older.] So I cut off the one part of me that actually made me feel feminine, attractive. It was a bold and frightening moment.

The weird part? Ever since then, I have been mainly sleeping through the night. For over ten years, I have only been able to sleep a couple of hours before waking. Each night was an endless cycle of going to sleep. Waking. Trying to get back to sleep. Waking. The morning would arrive, and I would feel only a hair more rested than the night before. I lived for the weekends where I could sleep later. For some strange reason, I could sleep from about 7-12 without waking.

I cut off my hair and find myself sleeping at least 6 and 1/2 hours straight. Let me tell you, it is a strange sensation to wake having passed the night in sleep. I expect it to only be 2 AM and it is already 7:30.

This week, I have hardly been sleeping at all, but that is because I am rattled by a recent event. When (hopefully not if) I can find balance again and close my eyes in peace and not fear, will the phenomenon continue?


I sent my hair to Locks of Love. If you do not have hair hanging below your waist that you recently chopped off in an attempt to satisfy some inner desire for change, perhaps you have some spare change to donate!