Osteogenesis Imperfecta - LIVING WITH BRITTLE BONES - Audrey Ekdahl Davidson






Chapter 1

Coping with Aging
and Brittle Bone Disease


In spite of living with a bone disease all my life and being confined to a wheelchair since 1959, I have never wanted to think of myself as really disabled. My disease, osteogenesis imperfecta, did, however, become much more serious after sixty, as would be expected, especially for women with this disease, and I am now in my mid-seventies. I can no longer deny my disability. A few years ago I went to a new physician, who said, “I didn’t know that people with OI lived this long.” But, depending on the type and severity of the disease, they can, as witness the information that I have marshaled in chapter 2 of this book, though it seems that men are more likely to be long-lived than women.

I have had a good life, made more livable, after six years in Detroit, by our choice in 1965 of employment at a university in a relatively small and self-sustained city. I have been able to have a career as a singer, a music director, a church musician, and a professor. I have been married for fifty years, and, with help from my husband, I had been able to travel to most countries in the Western world for conferences and to use libraries and archives as well as for pleasure. This was always not easy, of course, as the account I will tell in the present book will reveal. There was, for example, the time that British Airways smashed my wheelchair between Copenhagen and London’s Heathrow airport. I was forced to use a loaner for my work in the British Library when it was situated inside the British Museum as well as for travel to a conference by train to Glasgow. The wheelchair that I was given was one of those inferior models with small front wheels, hardly designed for the use I would give it for the next couple of weeks. The sensible thing is to meet this kind of thing with a bit of humor and a positive attitude. I would presently be very glad to put up with the kind of vicissitudes that I remember in my travels if I could once again set eyes on a music manuscript by Hildegard of Bingen, regarded as one of the greatest mystics of medieval times, or the shrine of another mystic, St. Birgitta (often known as St. Bridget of Sweden) at Vadstena, where my friend, Sister M. Patricia, is having her own problems in coping with old age. Or once again to see the glorious rose window encircling the Virgin Mary at Chartres, the most beautiful building I have ever seen, even if the lavatory facilities - shall I for politeness call them North African style? - for women across the street were nearly impossible for a person in a wheelchair! But even there kind people were present to lift and hold me, and I managed what at first seemed impossible.

Perhaps, because I am of Scandinavian descent, it makes me feel better about my condition to think that it was a bone condition possibly shared with a twelfth-century Norwegian king whose story is told in the Norse sagas. It is said that King Inge was injured when he was carried into battle as a very young child, supposedly under the belt of a warrior. But the description given in the sagas, without being conclusive, suggests osteogenesis imperfecta: his back “knotted into a hump, and the one foot . . . shorter than the other,” and “scarcely able to walk as long as he lived” (Heimskringla, 15.1). His illness was such that he had to be lifted onto his horse, yet he was known to participate in vigorous military ventures. His reign lasted twenty-three years, a period of civil war and disputed rule, before he was betrayed and killed in battle on 4 February 1161. His body was placed in St. Halvard’s church in Oslo.

If I have had my share of suffering, for fractures are painful indeed, I cannot therefore regard life as filled with misery. The necessity of a bit of pain and poverty actually may have been for me a “bulwark against bitterness,” to use the words of a recent writer. Even recent years have in some sense been good on the whole since I have been able to enjoy reading, sometimes scholarly books but also a whole spate of fiction and other creative work that had eluded me when I was studying, then teaching, doing research, and directing musical groups. For me idleness would be misery, in spite of the fact that nowadays I of necessity need much more rest and time for sleep than I ever would have imagined. The reasons are set forth in the following, which I hope is not too much of a dry medical report on my physical condition. It certainly will be of interest to those who are concerned with aging generally or with the results of aging with OI in particular.

On 11 September 2001, ten years had already elapsed since I had first fractured my left hip, and, in spite of new treatment to which I shall return below, I knew that I needed to be extremely careful. I had been lifted into a reclining chair of French design at night, and needed some help with hair washing and even dressing myself. The latter was a function that I had been determined to do as much without assistance as long as possible. On this terrible and unforgettable day my husband had phoned to tell me to turn on the television to CNN. After his return to the house and after our lunch, I continued to watch television with him until about 2:00 p.m. Distracted by the scenes of the incredible fall of the twin towers - towers that we knew had been designed by Minoru Yamasaki, whose buildings also graced the campus of Wayne State University where we had studied and taught many years ago - I moved carelessly and catastrophically shattered my left femur and hip so that neither could be repaired, in part because the bone was too soft to hold a prosthesis and also because my general health was too problematic. My bone surgeon at the University of Minnesota, Dr. Roby Thompson, who had performed the hip replacement in 1994, was consulted by phone and was among those who advised against surgery. The wisdom of this advice became very clear a few days later, as I shall explain.

Persons with OI usually have vivid memories of the arrival of the paramedics, being lifted onto the stretcher and rolled out to the ambulance, and the ride to the emergency room. There are the check of one’s “vital signs,” the preliminary examination by the emergency room doctor, and then the x-rays. And the waiting, for care is as slow in a relatively small city as in a large. After a break, the shock stimulates the body to create its own painkillers, but these dissipate after an hour or so. Pain killers make the pain bearable but also cast a kind of haze over one’s mind.

I was lucky that Dr. Mark Noffsinger was on call that fateful day and that I could be taken into his care without delay. I also thought about how lucky I was that something catastrophic like this had not happened when away from home in one of the world’s out-of-the way libraries or at a conference site such as Perpignan in southwestern France where we had attended a medieval drama conference in 1986. Now I expected the worst. The news came back from X-ray that my hip was so smashed that the femur (actually, the prosthesis from the 1974 hip replacement), itself broken, was penetrating it. Traction would be necessary. My husband insisted on staying with me as Dr. Noffsinger’s assistant drilled through my leg at the knee in order to position a rod to which the traction wires could be attached. Fortunately, the procedure was successful, and in the midst of the night I would be taken to my hospital room at the new Bronson Hospital where I would be guaranteed a private room. In spite of the fact that this was my first visit to the new hospital, the experience was all too familiar.

X-ray of right femur, showing rod inserted in 1968, and pelvis, showing location of prosthesis where breakage occurred in 2001. Courtesy of Bronson Hospital.

The sight of the smoking ruins of the twin World Trade towers nevertheless stayed in our minds like a rumbling bass underneath all the hospital sounds on that fateful day. The deaths, the people falling from a hundred stories to their deaths, what must have been the smell of destruction, the clouds of smoke and dust as those incredible buildings collapsed - and all was happening not so very far from the New School University where only a few years ago my husband and I had collaborated on a report on a production of a music-drama by Hildegard that we had mounted - a presentation that had duly been noted in the New York Times. And, we knew, the tragedy was also taking place not so far from the offices of Clifford’s once and future publisher, AMS Press. But the events of the day had to recede in our minds as time elapsed and, in my case, the pain intensified.

The following days, as I remained in traction, were a blur, punctuated by meals and Clifford’s frequent arrival and departure. His office, since he was still at the university, was a mere five minutes away, and our house was only five minutes farther in driving time. My heart was being monitored carefully since I had a defect, mitral prolapse, which was exacerbated by the collapsing in of my chest cavity due to the progressive shortening of my spine that was caused by vertebra fractures. This too was ultimately due to the effects of OI. In older terminology, I had a serious heart murmur caused by a valve that did not open or close as it should. The nurses noted that my blood pressure, sometimes high, sometimes close to normal, was not as stable as it should be, even allowing for the trauma of the broken bones. But a little past the middle of an afternoon the aide checked my blood pressure only to find that it had plummeted dramatically well below any safety level. Clifford, who was present, says that she dropped everything and ran out into the hallway to find my nurse. I was immediately being rolled in my bed, with traction still in place, down the hall and then up the elevator to the intensive care unit, where a central line would be installed and I would be given blood transfusions. The villain in this case turned out to be not my heart but rather a bleeding ulcer from the medications that I had been given by mouth.

I’d had previous encounters with life threatening experiences, to be sure. This time my husband in his concern met my then family doctor, Penny Rathburn, at the nurses’ station and asked her for affirmation that I would live to see my next book in print. I had only finished proofreading it the previous month and had sent the proofs back to the publisher. It was a long-range project growing out of my University of Minnesota doctoral dissertation that I had put off all too many years. The topic was a set of three related compositions - a set of songs (Harawi), a symphony (Turangalîla), and a choral work (Cinq Rechants) - comprising a “Tristan trilogy” by the French composer Olivier Messiaen which he had begun composing while his wife was institutionalized with a disease that caused her to lose her mental and physical functions and eventually led to her death. Dr. Rathburn insisted that all should be well, though as we knew (to adapt the words of the medieval mystic Julian of Norwich) all manner of thing should not be entirely well. In the meantime, in New York the effort to rescue the bodies of those killed in the World Trade Center continued, and the world’s sympathy poured out to the nation.

When it was felt that I could pivot on my right leg so that I could use the commode, Dr. Noffsinger ordered my catheter re- moved and arranged for my discharge. I set up volunteers to help at regular intervals through the day and evening. I still do not understand everything that went wrong with me physically. In a few days I found myself having difficulty organizing the schedule, and then I sustained a sprain or hairline fracture in my right hip that meant another trip in the ambulance to the hospital. Tests showed that my sodium level was very low, and this would explain my difficulties with organization. On the other hand, the problem could as well have been caused by pain medication, which I was still required to take. When the right hip was x-rayed, there was no overt evidence of a recent break, but of course in the instance of bone that has been broken in the past as many times as my right femur, a new hairline crack simply would not show up immediately. The emergency room doctor, this time a rather green resident, kept telling me that merely having pain was no reason to be re-admitted to the hospital. He clearly had no understanding of OI, and I was reminded of all the times that I had been forced to explain the nature of my disease to people for my own safety. At last one of Dr. Rathburn’s colleagues, Dr. Gupta, came by and cut through the red tape. I was back on the orthopedic floor.

The episode with the resident in the emergency room was bureaucratic, but another was a lapse in judgment that afterward caused me much pain and inconvenience. A male aide was lifting me, and insisted on doing so according to “standard procedure” but in a way that sprained or, more likely, caused a hairline fracture - an injury of my shoulder from which, as in the case of my right hip joint, caused years of trouble for me. The aide was very frightened and hoped that no permanent damage had been done. We could have consulted a lawyer, but we did not. The deed was done. As a result it now was necessary to have three people at hand to lift me out of bed, and at the same time Dr. Noffsinger correctly insisted that I must be up and seated for a minimum of six or seven hours a day. I would need to retain the catheter, and, until it was possible for me to be lifted in and out of bed by two people, I would need nursing care. Of course, hospitals no longer do this, so arrangements were made for me to transfer to a nursing home. My husband surveyed the sorry possibilities in the community, inevitably finding that the best option was not available. Another nursing home rejected me. We learned that in the latter case, a nursing home with high visibility in the community, staffing problems were in fact under scrutiny by the state regulators. My third choice was The Springs, associated with The Fountains retirement and assisted living facility, also highly regarded in the community.

I remained at The Springs for about six weeks. We posted a large sign above my bed that said “OI PATIENT - MOVE WITH EXTREME CARE.” In the hospital there had always been the danger of an aide arriving in the middle of the night and saying, “It is time to turn you over now” - and proceeding to attempt to do so. On each occasion then I had been able to contravene the aide’s attempt, and now in the nursing home we wanted to make sure something worse did not happen. I was of course in a leg brace, and I indeed needed to be moved very carefully. One problem with nursing homes is that the staff is accustomed to giving orders to patients and to doing what they will, especially when tidying up beds and so forth. All the patients are presumed to be somewhat mentally deficient from old age, it seems, though I will say that many of the staff were indeed wonderful caregivers. Yet there was always of necessity anxiety about who would help lift me out of bed and back into bed again. Clifford insisted on being always on hand then and on being allowed to help. One of the nurses, for example, tended to bump me more than should have been the case, fortunately without any bad results. The other nurses often went out of their way to see that I was treated well, and even the house doctor, when he learned at the end of my stay that I had a Ph.D., warmed to my problems. Some of the best and most competent were an aide, Christina, who had been born in Puerto Rico, and a pair of young women, Joey and Naomi, who probably had not been intellectual stars in high school but were likewise very competent and utterly devoted to their patients. If I had an aide for the evening who was not sympathetic or likely to be careless, they would make a point of leaving whatever they were doing in order to answer my call-light first. The night shift was the least energetic. In the middle of the night one aide would always answer my call-light with “Now what do you want?” Since the building was being redecorated, there were sometimes scraping sounds in the hallway which also were an annoyance.

In spite of the cost, and in my case I had considerable help from Medicare, there is simply not enough money in the nursing home system for first-class care. The state requires only two baths per week, and, unlike hospital practice, that is all that the patients received. I required bathing every day, and my husband, arriving at 7:00 a.m. before breakfast, did this for me. He also supplemented my breakfast with food, vitamins, and iron pills from home. The food then and at the other meals not only was designed for people with weak digestive systems but also was not of the quality to which we were accustomed in our daily living. Yet I remained cheerful, and I did improve. With assistance from the physical therapists we were able to learn to transfer me using a sliding board as well as, for the return to bed, a Hoyer lift. It is dismaying to learn that the government is intent on cutting back on physical therapy in nursing homes, since, as I saw in my short stay, it is indeed a lifeline to so many residents.

After returning home, I had aides supplied by a local agency. Some aides not surprisingly were better than others, but one, Antoinette, managed to steal from my checkbook two blank checks, one of which she tried to cash for $1300. The agency had checked her record and had found nothing about her previous arrests. The policeman told us that she was known to them as a thief who liked jewelry and collectible stamps and that she had been charged previously, but either she was not convicted or the report to the agency was flawed. I fortunately, through the good services of an alert cashier at the credit union, was able to stop the check from being negotiated, and to place a stop order on the other check. But sadly another item was missing from a drawer where I had kept it: my wedding ring, which I had not worn recently since my finger knuckles had expanded on account of arthritis. The police turned up no sign of it in pawn shops or other likely places.

The best of my aides was Martha Rassool, who was married to an Iraqi with a Ph.D. who had fled his country with his family when the Baathist regime became impossibly repressive. She tells of one relative who was confined in an underground cell for six months for laughing at a political joke. Martha’s husband, from a prominent family, had refused to join the Baathe party and still insists on being strictly non-political. They still own a house in Baghdad. During the most recent conflict, the house was reported to be still standing. The caretaker merely said, “I open the windows a little when there is a war” - the third in recent years. During World War II Martha’s father, William Melms, was in charge of the vessel that later was outfitted as a spy ship and renamed the Pueblo. His book about his experiences has recently been published. As an aide, Martha was blissfully someone to whom one could talk - and someone one would want to retain as a friend.

I also had help from students who stayed at our house when they were able. We had decided some time ago to allow a foreign student to occupy our guest room since we knew about the exorbitant cost to which they were put for their education in the United States. Starting with Gosia Sieminska, a Polish sea captain’s daughter and now a graduate engineer, well before my most serious problems began, these students always volunteered to assist me not as payment but as an act of kindness. Wenli Zhou, from Sechuan province in China, was an up-and-coming pianist who went on to receive her M.A. at the University of Michigan. I had met her previously when she was accompanist for the church choir that I directed. Then Revathi Murugappan followed, a delightful woman of South Indian descent from Malaysia, a dancer and professional journalist, who also took part in the production of the Play of Daniel, a twelfth-century masterpiece, for which my husband served as dramatic director in May 2002 for the International Congress on Medieval Studies. This is an annual meeting, the largest gathering of medievalists in the world, and a conference that Clifford and I are proud to have helped to nurture from the two hundred attendees in 1966 to nearly three thousand now. Some were scandalized by Revathi’s dancing before the player king of Babylon inside the communion rail of the church where the play was performed, but others saw her as a beautiful performer, much better than the juggler, who kept dropping his balls. Still, I am not sure that she could compete on that occasion with the lions, who roared wonderfully as they devoured the evil counselors after the release of Daniel from their den. I of course was unable to attend, but I was given a videotape of the production. The musical score was one I had transcribed mostly while sitting in the old manuscript room of the British Library when it was still located centrally in the British Museum, but because of my illness I have been unable over the past decade and more to participate as formerly in the role of musical director for such productions.

Eventually Revathi was succeeded by Yi Wang, the second pianist from mainland China we have taken into our household. In the time she was with us, she become as devoted to us as we to her, and in addition she introduced us to her Taiwanese friend Jackson Chen, whom we also appreciated. And even more I am indebted to Swee Sin Ng, Revathi’s friend from Malaysia and truly a helper in a time of need whom we will deeply miss when she returns home.

From December of 2001 until June 2004, my daily routine did not much change and was interrupted only by two more stays at Bronson Hospital on account of respiratory problems due to asthma and heart congestion in 2002 and 2003. I have had to alter my diet dramatically, not only eating a low cholesterol diet but also reducing sodium to less than 1500 mg. per day. The latter dietary solution seemed to us to be an odd one for low sodium - indeed, low sodium that at one point reached the life-threatening level - but this was joined with restricted water intake. My new diet, along with a change in my blood pressure and heart medication, seemed to have stabilized my health. I also used oxygen, generated by an oxygen condenser, at night and sometimes when I was tired during the day to assist my breathing.

My day began - and still does - with medication-taking at around 7:45, a half hour before breakfast, which my husband brings to me in bed on a tray. Breakfast is pretty much always the same - juice, toast, and bran cereal topped with apple sauce, the latter a prescription ordered by my visiting nurse, who now is coming once a week to change my catheter and, when necessary, to draw blood for essential tests to monitor my progress or regress. For two and a half years, the schedule was constant. When my nurse was to come, I bathed, or, to be more accurate, had my husband help me to bathe before she arrived. I left my brace open at night, and did not close it until the nurse was there to examine my leg, both for skin problems and for observation of the spots where screws inserted to hold a break in 1962 are starting to come loose - a sign that the bone in my tibia is lacking in strength. On other days, bathing was followed by dressing, which entailed slipping on a short-sleeved jersey and more or less rolling into a denim dress that buttons either up the front or along the side. I still wore only a sock on my left foot so as to allow me to wiggle my toes. My nurse, Lynn Cramer, is a strong woman, very skillful at what she does. She proved to be handy at the sliding board, which we used to slip me into my wheelchair, either my manually operated chair or, after a time, a motorized model provided by Medicare following considerable haggling by mail and supporting letters from my physician and bone doctor.

On other days, two people were still needed to slip me via the sliding board into my chair from the hospital bed that has been supplied to me. Even before the “9/11” accident, I had found it necessary to learn how to wash my hair, or, to be more exact, how to have another person, usually my husband, wash it since with spontaneous vertebra fractures and shortened height I was no longer able to rinse it in the sink in the usual way. My husband placed a towel and then a piece of plastic around my neck, then another towel on top. He used a pan to catch the excess water, and proceeded to soap up my hair with a washcloth, then to rinse carefully, using as little water as possible. This is hard on the hair, but it works. I kept my hair cut fairly short, since long hair becomes too difficult to cleanse using this procedure.

Often after I had taken a turn around the living room of our house, which I love, I rolled up to the rather battered dining table that we purchased in 1963 for $3.00. There was no use buying a new one, since I had always the bad habit of banging into the legs with my wheelchair. Our house, which we named “Logres” after the legendary Arthurian kingdom, was a tremendous find when we purchased it in 1978 for a price that would now seem embarrassing. It has no steps whatsoever, and was designed by a Frank Lloyd Wright protégé who had studied and worked at Taliessen. Except for the sharp turns required to go to the bedroom and bath, the house is remarkably accessible. I will have more to say about the house later in the book. Often in the morning I would take a nap once I was settled. I still take another set of medicines at 11:30 preliminary to my lunch, which Clifford prepares.

I am appalled at the amount of medication that it now takes to “keep me going,” as the saying is, but I am immensely grateful to my present family physician, Dr. Elizabeth Warner, for her effort and interest in my case. Recently, deciding that it was too difficult for me to go to her office for appointments, she began making house calls. She is a former actress and always, it seems, on stage and alert, unlike some other doctors that I have had and with whom I occasionally had difficulties. She further has Minnesota connec-tions, and to this native of Minnesota that seems like a very good thing. Fortunately the drugs she prescribed are covered in large part by my supplemental insurance from employment at the university, from which I retired more than a decade ago. Otherwise the cost would be a very heavy burden indeed.

Afternoons were devoted to reading or, when an opera was being broadcast, to listening. When encountering a less familiar opera such a Verdi’s Nabucco or Rossini’s The Italian in Algiers I was able to listen with the music at hand, usually a vocal score propped up on a stand. For Wagner’s Ring, I followed the text from the floating of the Rhinemaidens and the theft of the magic gold by Alberich all the way to the twilight of the Gods, the engulfing of Valhalla by flames, the death of Siegfried and Brünnhilde, and the return of the gold to the Rhine four operas later, all broadcast of course on different Saturdays. My husband accuses Wagner of gigantism and compares his characters to the Gustav Vigeland creations, also larger than life, that are displayed in the Vigeland Sculpture Park at Oslo in Norway. My reading has been quite eclectic, ranging from Martha Rassool’s father’s How to Stay Afloat in Army Boots about his experiences as commander in wartime of an army transport ship, for which neither he nor the crew had adequate training, to Doris Lessing’s Martha Quest from her Children of Violence, Muriel Spark’s Memento Mori, and Halldór Laxness’s recently translated Iceland’s Bell. When we were in Iceland nearly thirty years ago, I had seen Laxness’s name on a door at the university. Since Laxness was a Nobel prize winner, I would have expected the librarian who was escorting us to have expressed some pride, but it was clear that he despised him. I had read his Independent People nearly half a century ago, and now it was a chance to catch up on other Nobel prize winners and to read the Times Literary Supplement - as well as a chance to read some professional magazines in the field of music thoroughly. From TLS I learned, for example, much more about Tantric religion and that sort of thing than I want to know. In the evening, I was able to continue my reading until 9:00 or 10:00, always with a book that is small and light enough to read in bed.

We have had to move our dinner to 6:00, which seemed to us very early when the change took place, but this was a time that tended to be more compatible with my helpers’ schedules. So around 5:30 there is another round of pills and capsules, then the meal, again prepared in most cases by my husband. Dietary considerations rule out using deli food, or at least very much of it, so the meal needs to be prepared pretty much from scratch. Semi-prepared foods and many frozen foods tend to be smothered in salt, more of it in a single helping than I am allowed for the full day. The availability of salt-free food, while limited, helps, as does the stocking of salt substitutes by the local health-food store. Fortunately we can obtain fresh fish and non-factory chicken, the latter brought in from Indiana, and our local grocery has good vegetables and fruit the year around. For potatoes, however, Clifford likes to go to the health food store, which stocks organic varieties, since when he was a child he remembers how he saw first arsenic and then DDT heavily used to control the potato bugs in his father’s potato patch - and, he wonders, what pesticides are used now?

Then it was time to go to bed, a process that required the use of a Hoyer lift and two people to operate it. They would swing me over into the bed, lower the lift and remove the chains attached to the sling, then lift my legs, turn me into position so that I was lying correctly in the bed. Then they pulled the Hoyer sling out from under me, and my husband and another person, if a woman, together would slip off my clothes and help me put on my nightgown, fastened in the back and designed for bed patients. I am almost embarrassed to mention that I was even then no longer able to use a commode so must use a bedpan, which to be sure is not so bad as it sounds since when not in use it is kept scrubbed scrupulously clean.

The evening routine remains the same. Around 9:30 I have a small helping of yogurt to guard against yeast infections (always a problem anyway), followed by a glass of orange juice and a capsule containing Pamelor, which though an anti-depressant is useful for pain tolerance. I had not taken any of the usual pain medications for a long time prior to June 2004, about which more below. I still spend the evening reading until I am too tired to go on, and then ask Clifford to turn on the television. Often there is a good PBS program or an interesting Book TV or other presentation on CSPAN. In desperation it is sometimes necessary to turn to CNN or MSNBC with their plethora of ads and packaged news and superficial discussion. Aside from an event such as the crashing of planes into the World Trade Towers, we never turn on the television earlier in the day. Even at night, there are times when there is literally nothing whatever in the lineup in all those stations available on cable. A wasteland indeed. It is luck that there is a good local university radio station, WMUK, where my former student Cara Lieurance is an announcer, as well as WKAR at Michigan State University. At one time there was good radio from the University of Michigan, but this station was savaged by a new manager who changed the format mainly to rather dreary talk radio against the wishes of the devoted staff. Incredibly, the new station manager, Donovan Reynolds, claimed that the station’s programing had been “moribund.” The staff included Peter Greenquist, who had moved over from WMUK some years before and who, incidentally, had taken part in an entertainment designed to accompany Adriano Banchieri’s Festino that I directed at a medieval conference at our university in the 1970s and which shall receive mention below. The loss of the University of Michigan station was acutely felt. One of its programs, “With Heart and Voice,” which featured organ and choral church music of a very high caliber, formerly was aired at 6:00 a.m. on Sundays. We would get up that early just to hear the program. Now it is broadcast by the Andrews University station, which we also can usually receive, at 8:00 p.m. on Fridays. Being able to tune in on such programs becomes very important when one is confined to the house, as I have been for so long, and this is especially true because it has become impossible for me to operate the compact disk player.

I found that one is able to have a surprisingly rich life even under such circumstances when the days go by pretty much the same. It is a matter of looking back without sorrow at the past and of being content with the present as the best that one can make it. To slip into depression or alcoholism simply seems to me to involve unattractive options when so much can be made of one’s existence even if one is not able to do the things which excited one in the past - or if one is not able to execute some of the things that were planned for one’s old age. Of course I miss being able to sing and otherwise to perform music, which had been my lifeblood, and there is a level of isolation that one would prefer not to have. But friends do come around to the house, and I have had a fine relation with the foreign students who have stayed at our house. Those who are not away in some faraway place such as Malaysia come to visit, and in a sense whether nearby or far away they are our family.

These remarks apply more than ever to my present condition, for in June 2004 a helper inadvertently twisted my right foot, and my right leg, always the weakest, snapped. I knew from experience that it was broken since there was a kind of grinding feeling when it was moved. The good thing is that, unlike the other leg which remains in a brace whenever I have to move even in bed, the bone remains in place, so healing may be adequate to return me to the schedule that I have described above. But quite unfortunately also when in the hospital, two aides against my expressed wishes turned me all too quickly and roughly one evening - one of the great hazards of hospitals for OI patients - and produced a fracture in my shoulder, and because of the soreness in my arm I suspect the possibility of a hairline fracture there too. So at this time I had only one good limb, my left arm, a real disability since I am right-handed. Lying in bed and not being able to get up provided of course great potential for more trouble, including the possibility of succumbing to congestive heart failure. Bed sores are inevitable, so have to be controlled. And while lying down my breathing is not good, even though I use oxygen now all the time, and I sleep more hours per day than before. But I remained ever hopeful that this would pass, and now with the help of the Hoyer lift I am able to be up again. Nevertheless, the remarks in this paragraph were not those originally intended to form the concluding point of the present chapter, which, like the rest of my story, was written before the latest fractures.


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