Maria Theresa Reimundez Zarra de Cebadilla

Picking up the pieces

Thu, 21 Oct 2004 01:07:43 GMT

I have no idea what this invasion means. I am extremely frightened of the implications, however. This is the first time that the thought has seriously occurred to me to return home, to Anunciacion.

Of course, that's not really an option, not at this stage. Both Awinita and I have built lives here, on Perseity, and it would be cowardly, not to mention futile, to run away now. Something tells me that, as long as Austronesia remains in control of Perseity, no sector of Second Sphere will long remain outside their influence.

I wish I knew more about computers than I do now. I can, of course, use all the software associated with my work, but I can't really encrypt this entry more than it already is, which means that anyone worth their salt will be able to crack it. I hope the Austronesians are not monitoring every single fib on Perseity yet. It seems unlikely, but there is always a small chance.

I suppose that fostering paranoia is a good way for them to exert more control over all of us. The only thing I can do for now is to continue to lead my life as I did before, and try to maintain as much of my integrity as I possibly can in light of these developments.

If I were not so physically hampered, perhaps I could do more... Yet another reason for frustration.

Having a bad day...

Fri, 24 Sep 2004 02:51:00 GMT

I have no real reason to feel this way. Things are going well, objectively speaking. I have a good job, a loving wife, and am about to take part in a study that could fundamentally alter the way we view the human brain, or at least provide insight into the causes (and a potential cure) for de Marne's.

I suppose it doesn't help that I've had bad muscle spasms all day, but still... I feel really very weak and selfish for wallowing like this. I don't know. I wish Awinita were home. I don't particularly feel like doing anything except hiding from the world. Instead I had to deal with the laboratory and with students coming and asking questions and all sorts of interruptions I could have done well without.

Finally I just closed my office door and did some writing on my fib for a paper I'm writing for... I've forgotten the name of the quarterly. I'm so easily distracted these days. I wonder if decreasing mental acuity is an unknown symptom of FRS? I hope not.

I don't have the energy for this anymore. I know I should keep persevering in my work and my life, but right now all I want to do is sleep.

Getting settled in

Tue, 07 Sep 2004 00:04:51 GMT

Spent an exhausting day running around the Center. Well, not literally, of course. Haven't done any running in a while.

Still, lots of very rapid moving around. I was able to go without the chair for a while, at least while I was on the same floor, but eventually I had to go back to it. I had to go to too many places in too short a time to make it on foot.

Everyone there seems remarkably pleasant and welcoming. I had some very illuminating chats with many of the doctors and staff, and I'm very optimistic about the whole affair.

I caught a glimpse of Dr. Armanno again, the young doctor with whom I had lunch a few days ago, and who, aside from Dr. Lynch, is the main reason I accepted the posting here. If he hadn't been so positive about the Center, I might have had more doubts about accepting what will no doubt be a very taxing new position here. If I had any suspicions at all that the people here would not be as pleasant to work with as those with whom I already collaborate, then I would not be taking the risk.

Still, if the rest of the staff are even half as nice and dedicated as Dr. Armanno, then I think I will not regret this decision in the slightest.

He has a fascinating case on his hands right now: the creation of an artificial eyeball that can be removed and function at a distance. Whether it can be done remains to be seen, of course, but he seems very excited about it. I'm curious to see what he will come up with, and I have a few ideas of my own that I might bounce off him.

Even better, of course: Awinita was waiting for me when I got home yesterday. She'd made dinner, and a spectacular dessert which I don't think I could do justice in a million years. I'll have to ask her what it was called. It was some sort of flaky pastry with fresh fruit and chocolate sauce drizzled over it.

I found a better application for that chocolate sauce later, mind you, but the dessert was delicious. ^_-

I think I'll try some of those new pills for pain the doctor prescribed the other day, and see if I can get some sleep tonight...

The meeting went better than expected

Sat, 07 Aug 2004 19:51:30 GMT

I am quite relieved, to be honest. I think that, unless the meeting with Dr. Armanno is a complete disaster, that I will accept the post that Dr. Lynch has offered to me.

He is a lovely, kind man. He is also one of the rare doctors I have met who is genuinely interested in the welfare of his patients, and not simply in the newest medical advances and technological innovations.

Luckily, he didn't seem to think my illness would be a major impediment to my being employed there. I hope I didn't come across as too self-pitying. There's nothing more off-putting to people than that, especially prospective employers.

I hate that this disease takes the spotlight no matter what I do. I seem to wear it like a mantle. It's always present, looming up behind me like a specter, like the proverbial elephant in the room. It's as though without it, without this defining characteristic, I might cease to exist. I am simply "that doctor who's crippled," or "the woman with FRS."

I hope that this will not be the case at the Centre, but I'm not going to hold my breath. After all, this chair, or my crutches, are the first things to catch people's eye when I enter a room.

At least I shall bring my patients with me, those who know me and trust me, and that will lend a fair bit of credibility to my presence there. At least people will have to think twice before automatically assuming that I'm incapable of being a doctor just because I'm partially paralyzed and have trouble with my fine motor skills.

I suppose I should stop writing now before I start ranting about the unfairness of it all.

I wish Awinita would come home, but I think she still has several hours left on her shift. All those poor people still affected by the Sundering. I think this has affected her far more than it has me. I would never have been able to travel to Earth in any case, and so I never formed any emotional attachment to the place. I think she may have had friends there...

I think I'll try to get some reading done. I have a long day at the lab ahead of me tomorrow. Hopefully I'll hear back from Dr. Armanno soon.

Meeting tomorrow

Wed, 04 Aug 2004 22:54:55 GMT

I'm meeting tomorrow with Dr. Lynch, at the Centre he founded. From what I understood from his fib, they want me to bring my practice over to join the Centre.

I am feeling a bit ambivalent about this. I spent a long time building this practice and developing a special rapport with the children and my older patients as well. I would hate to lose my independence and thus at the same time my very tight control of their medical cases.

Then again, this may be just what I need. For one thing, it is very likely that I will retain most if not all of my privileges where these patients are concerned. Also,the Lynch Centre has a fantastic reputation, and a great many resources at its command that I do not have. In fact, whenever my patients have needed very specific and rare types of treatment, I have had to refer them to the Centre anyway. So it would not be changing much.

I must also think of obvious long-term considerations. In another ten years, perhaps less, I will no longer be able to practice medicine at all. In all probability, I will have to limit my hours within five years. Being established at the Centre will ensure that my patients will continue to receive excellent care even after I am gone.

I think that I am nervous about this meeting perhaps because I am not sure of the reaction Dr. Lynch will have upon seeing me. It is no secret that I am ill, and that my mobility is significantly impaired by my illness, but it is one thing to know this intellectually, and another entirely to witness it firsthand. Perhaps I am afraid that I will be rejected solely because of my perceived limitations, which has happened before.

It is an understandable reaction, but one which is extremely frustrating, because I know that I am still more than capable of fulfilling my duties. To be thus condemned before my time is... perhaps "unfair" is too strong a word. But nonetheless, it is a serious obstacle I must hurdle every time I try a new path in my career.

I hope Dr. Lynch will not allow his preconceptions to blind him.

I think Awinita is home. I shall write more tomorrow, after the meeting. For now, my love awaits me.

Treading water...

Mon, 12 Jul 2004 22:34:52 GMT

Maria is sitting in a comfortable-looking wicker armchair in her living room. Her hair tumbles loose over her shoulders, looking a little mussed, as though she's just shaken it loose from a bun, and she's wearing a saffron dress with an elaborate design in very thin gold thread over the breast and cuffs. She looks extremely tired, her face drawn, with dark circles under her eyes. She passes a hand over her face before beginning to speak, with only a slight accent.

It has been a terrible few days. I do not remember being so tired in a very long time. There were so many people to take care of, to comfort and to reassure, when all I wanted was reassurance for myself.

Awinita has barely been home the past few days. She has volunteered to do extra shifts at the medical bays until the crisis is well past. I miss her, and I know she isn't happy being away from me all that time either, but it is the right thing to do. I, too, have been working a great deal with the victims, although I am unable to do much in the way of surgery. I can at least treat them medically and hold their hands when they need me.

I had to come home early today, however. I think I may have overtaxed myself, and now I am quite weak and have been chair-bound ever since I got home. The limitations of my body are always at their most frustrating when they prevent me from helping others. I hope that this momentary weakness will have passed by the time Awinita comes home. She doesn't need yet another person to take care of, today.

I have prayed a great deal lately. I am not sure what kind of trial God has in mind with this, nor even if this is God's plan, or some doing of the Adversary. It has always seemed odd, to me, that God would not know what the Devil is up to. It seems He must have some inkling, since He is all-knowing and all-powerful...

I cannot begin to fathom what the pain of an immortal and omnipotent being must be, when He knows his beloved creations must suffer, and that He cannot do anything to stop it, for He long ago gave us the freedom to choose our own destiny.

There really is nothing left to do now but wait, and pray for guidance.

Maria pulls out a plain wooden rosary, and automatically begins fingering the beads.

Ave María

Dios te salve María, llena eres de gracia, el Señor es contigo; bendita tu eres entre todas las mujeres y bendito es el fruto de tu vientre, Jesús.
Santa María, Madre de Dios, ruega por nosotros los pecadores ahora y en la hora de nuestra muerte. Amén.

Left to my own devices...

Sat, 29 Nov 2003 09:16:38 GMT

Can't sleep tonight. It's what an acquaintance of mine would call a "bad pain night." So I am updating this journal instead of lying in the dark and feeling sorry for myself.

Awinita is asleep. I have no desire to wake her, poor thing, she's had a difficult few weeks. All those poor people who suffered so much in the attacks, who still aren't able to return to their loved ones...

I hope they all have someone like her waiting for them, who will care for them even now that they are debilitated. She has been a great source of strength for me for so long now that I find it hard to think of the past without her. She was not a part of my life until my early twenties, but when we met it seemed as though we had known each other forever, as tired as that cliché may be.

I met her at the University, when I was completing my Master's thesis in biochemistry. She was studying to become a nurse, specialising in long-term and palliative care. The irony of this does not escape me, I assure you. We met at some student function or another, I don't remember what it was about. Probably some sort of fundraiser for the university.

What I do remember is that, after we were introduced, we talked only to each other for the entire evening, to the exclusion of all others. I had never known or felt such a headlong rush of affection and attraction for another person, and Awinita says she felt the same way when she first saw me. The more we talked, the more we became confirmed in our feelings.

We went out for coffee right after the function was over, and continued talking. We talked until the coffee shop closed, and then we went to my small flat and talked more. We talked until the sun rose, and I made her breakfast. We skipped our classes, unintentionally, too engrossed in our conversation to pay attention to the passage of time, to fatigue, to anything at all, really.

At some point in the late afternoon, we made love. I don't remember who initiated it. I don't think it matters, in retrospect. Awinita claims she did, and that seems plausible enough. We lay tangled in each other's embrace for hours, slept peacefully entwined until the next morning. After that we saw each other almost constantly every day for nearly a year, so passionately in love that we (or at least I) felt physical pain when we were apart. We even attended each other's classes when we could.

Eventually our love deepened and grew stronger, and we were able to spend more time apart, to develop our own selves which had become somewhat lost in the intensity of our relations. Love that is so painful cannot endure for ever: it must grow and change, or else perish. And so ours survived and became strengthened. Eventually Awinita moved into my flat with me (it was closer to the University and a bit bigger than her own), and thus, when I was twenty-two and she twenty-four, we began our life together.

Three years later I had my first major seizure. I don't remember most of what happened, really. I had been experiencing less acute symptoms for a number of years which I hadn't recognised: tripping easily, knocking things over, unexplained tremors in my arms and legs, all of which I attributed to fatigue or stress. I was conducting a small laboratory experiment, keeping the room in semi-obscurity in order not to compromise my text subject, when I heard someone come in. It was a young lab technician, one hand holding a tray of test tubes, the other reaching out for the light switch. Before I could call out to him that I needed the lights dim, he'd flicked them on, full force. There was a blinding flash, and then pain the like of which I'd never felt before. I heard, as though from far away, the sound of shattering glass (he'd dropped the test tubes upon seeing me collapse), and then nothing.

When I awoke, Awinita was by my side, holding my hand. I was in a hospital bed, hooked up to more monitors than I care to remember. There followed months of tests to determine what it was exactly that was wrong with me, until the doctors (well, two experts, really) agreed on the diagnosis of Fontainebleau-Rhys Syndrome. I was shattered. These doctors had effectively pronounced my death sentence, and I had no idea how to handle the idea that my life was to be cut short by a disease which at the end would rob me of everything but the terrible awareness of what was happening to me.

Awinita saw me through that terrifyingly bleak period in my life, and through a good number of rough patches since then. I have tried to be supportive of her too, but she seems afraid of hurting me by telling me of her troubles, as though she needs to shoulder both our burdens. I wish she wouldn't.

I am always afraid that one day she will tire of carrying me, of caring for me. Right now I can still manage most taks by myself, since my hands and arms have remained functional, but I know that in a few years they too will fail me, just as my legs fail me now. I feel selfish, because she works all day and comes home to the same sort of situation, but at the same time I can't bear the thought of leaving her, even if in some ways it would make her life easier, not to have me around to care for.

I love her, and I think she loves me. For the moment, I am content to be comforted by her love.

A first post...

Fri, 28 Nov 2003 06:47:22 GMT

I am almost sorry that it has to be such depressing subject matter, but I think it will be a good thing to explain my illness so that future posts do not create confusion.

Fontainebleau–Rhys Syndrome

Discovered and classified in 2530 by researchers Richard Fontainebleau (French) and Conrad Rhys (Welsh), Fontainebleau–Rhys Syndrome was up until recently confused with a more common form of Spinocerebellar Degeneration known as Rousy–Levy Syndrome (RLS).

General Information Concerning Spinocerebellar Degeneration:

Spinocerebellar Degeneration may involve any of a number of neuromuscular syndromes of unknown cause which affect the cerebellum, brain stem, and spinal nerves. Conditions may be classified by age of onset. Those that begin in middle age (such as Olivopontocerebellar Generation and Cerebellar Atrophy) usually progress more slowly and affect the brain stem and cerebellum to a greater degree. Those beginning in adolescence and early adulthood (Marie’s Ataxia, Rousy-Levy Syndrome) progress more rapidly, have a greater effect on the spinal cord, and have a greater tendency to run in families.

Degeneration of the cerebellum, brain stem and spinal nerves causes incoordination or ataxia, which is often the first symptom of the disease. Walking, communication (slurring of speech), fatigue and weakness, and tremor are common symptoms. The disease is progressive and incurable. A span of ten to thirty years may pass before the individual becomes totally incapacitated.

Treatment:

There is no treatment for these disorders.

Rehabilitation Considerations:

Spinocerebellar Degeneration will gradually progress with the most obvious functional problems being observed in the areas of walking, speech, and dexterity. Individuals may gradually move from using canes to using a wheelchair for mobility. Speech may become unintelligible, and tremor may prohibit fine movements of the hands and fingers. Intelligence, vision and hearing remain intact. Most individuals may have lifting capacity for medium to heavy work early in the disease. Prolonged walking, standing, climbing, balancing and crawling should be discouraged as these abilities will deteriorate, and may limit individuals to sedentary or light occupations.

Specific Information Concerning Fontainebleau–Rhys Syndrome

History:

In the early 26th-century (2526, to be precise), Richard Fontainebleau and Conrad Rhys stumbled upon a number of cases which presented not only the symptoms of spinocerebellar degeneration, but a variety of other, seemingly unrelated ailments and symptoms. Further study revealed that about 5% of patients that had been diagnosed with Rousy–Levy Syndrome might in fact be suffering from a more “complex” disease, heretofore undiagnosed.

Intense research over five years (2526 to 2531)

Fontainebleau–Rhys Syndrome:

The symptoms shared with RLS are as follows:

- incoordination or ataxia (clumsiness)
- slurring of speech
- lack of dexterity
- fatigue and weakness
- muscle tremor
- gradual development of muscle weakness

There were, however, significant differences in the variety of other symptoms present in the cases.

* Of the cases studied, 75% presented significant imbalances of the neurotransmitters acetylcholine (which causes the muscles to contract), and acetylcholinesterase (which stops the effects of acetylcholine). The majority of these consisted of an overproduction of acetylcholinesterase, resulting in muscle weakness and degeneration. In a very few instances, there were periodic bouts of complete absence of acetylcholinesterase, causing severe muscle contraction and pain.

The patients in this group responded well to small doses of acetylcholine reuptake inhibitors, which aided in alleviating symptoms. Individual and punctual intervention is necessary in cases where the body spontaneously and periodically ceased production of acetylcholinesterase.

* 80% of patients suffered from mysasthenic crises during periods of exacerbation of the disease, much like patients suffering from Myasthenia Gravis (literally: Grave Muscle Weakness). These often required hospitalisation and sometimes artificial respiration to sustain life. Medication has served to lower the frequency and acuteness of the crises, allowing for an increased survival rate, but is far from eliminating them completely, and individual response varies widely.

* 95% of indivuduals complained of frequent bouts of dizziness and disorientation, and suffered from seizures that varied considerably in intensity. Seizures were found to be triggered by a number of outside factors such as intense or strobing lights, extremely loud noises, medium-to-serious trauma (blows to the head, a heavy fall, etc.), as well as personal factors (excessive fatigue, common illnesses such as influenza, etc.). In severe cases seizures were accompanied by nasal and/or aurichular bleeding, and usually signified a period of exacerbation. During periods of remission, seizures are almost nonexistent or extremely mild.

Medications used to treat epilepsy have proved useful in mitigating the effects and frequency of the seizures, but once again individual responses have varied greatly.

Treatment:

Treatment for the moment is limited to palliative care for the patient and focusses heavily on maintaining and possibly even increasing the quality of life as the disease progresses.

There is no known cure for Fontainebleau–Rhys Syndrome, and the disease is progressive, giving the patient between ten and thirty years of productive life before the body is completely incapacitated. Life expectancy after total incapacitation ranges from five to twenty years, depending on whether or not the patient accepts artificial life support to aid breathing and cardiac activity.

Mild electrical stimulation of affected muscles has proved useful in slowing down myasthenia, but has little to no effect on ataxia and loss of fine motor control.

The neurological aspects of the disease (seizures, neurotransmitter imbalances, etc.) are controllable to a certain extent with medications.

Physical therapy and regular but short periods of exercise are believed to increase the period in which the body remains essentially functional, but the studies so far have proved inconclusive.

Rehabilitation Potential:

Because of muscle weakness, strenuous occupations are not advisable for persons with FRS, and persons with the disorder working in sedentary and light occupations may still require rest periods. Repetitive activity with actions of the same muscles is also difficult for persons with the disorder at any level of physical demand. This includes writing and typing. Intellect, hearing and vision are not impaired. Many individuals may need to gather skills for less physically demanding employment. Educational planning up to a four-year degree should not be affected, and with proper medical management individuals may be capable of working for twenty years or more after diagnosis.