Horizontal Ruminations

    Now and then I hear a blue Jay announcing himself at the feeders or at the waters. The sound takes me back to the places I’ve been when I could walk and fly too. At the time of course, like him, I took my great life and good health for granted, always wanting more, not content with plenty enough. But now, if I walk again, a prospect I work on with water exercises in my deep water therapy tub, there will be a more grateful attitude. No longer the blue Jay, I'll be a meadowlark serenading the sunlight and all passersby from atop the fence posts. And if I drive again I'll go shopping for the folks who can't do for themselves, and I'll go visiting and assisting in the many unpaid ways I've wished others would do for me.

   But for now I watch the sunlight on the tops of the one big Cottonwood tree visible above my curtains across the street as it gains and loses its leaves, as the sunlight makes its move around the house and then slants inside, as the moon progresses across this upper portion of each window too.

    My travels these days, and only when it’s warm out, involve “strolling” in my motorized wheelchair down the back alleys and side streets of my home town with camera in hand. My caregiver walks alongside to watch for traffic and has started taking pictures too, which makes pausing easier. We did take one major journey out of town this summer for a doctor’s appointment (nothing new to report) but learned that having to use the multi-lift to get into and out of the car kind of takes the spontaneity out of things. One does not just decide, for example, to go shopping or out for lunch when someone has to get the wheelchair out of the trunk, hitch the multi-lift to the door hinge, get me into the sling and the chair -- a process which takes half a hour at best -- and then put the lift away before shopping can begin. Even if the store is worth all that the entire operation has to be repeated in reverse to get me back in the car. So we meet friends in the park for takeout instead and I stay seated in the car, door open to the party.

    At home I’ve had grab bars installed around my bed so I can pull myself along and I use reachers for stabilization, but it remains a challenge even here to figure out how to get into or out of the recliner chair – once a great favorite – on my own. Practice and assistance bars make things easier but for now I take no chances. Being brave to the point of foolhardiness is at least part of how I got into this predicament -- the other part being bad genetic luck combined with the lack of vitamin D or whatever else it is that lets multiple sclerosis get a foothold.

   The interesting new development is that even though I want more I also want less, at least in terms of lightening my load. A recent Church auction inspired me to donate a couple of truckloads of new or nearly new possessions, including kitchen appliances, chairs beyond the range of my multi-lift, fancy red purses I no longer carry and a fully outfitted picnic camper backpack, never used. The Church is grateful and I am thrilled to be lighter and emptier.
Next will be the shredding of papers, documents and manuscripts. Storage boxes fill up at least two walls in garage and storage shed because I had the idea hard copy was essential to memory. Now I know that hard drives are a lot less dusty and more manageable. I can retrieve old work (if I even want to) entirely on my own with the laptop, but getting it down from the shelves requires a crew and a week of good weather. Accordingly, and against the advice of many (now deceased) former writing teachers, I am letting it go. They didn't know about the cloud. They also didn't know that I would one day become a Carmelite nun, that I would want to clean up that old first draft history so as to not embarrass my Sisters in Carmel!
But now I'll be ready. The day will come and I won't have to say wait, I wasn't done editing.

From Movies To News, There's A Lesson

    

     Given that what I need is arranged each day on tables beside my bed which raises me up into a sitting position with food and computers close at hand it should come as no surprise that I make use of those quiet nighttime hours for writing and for Turner classic movies -- at least those movies which pass the parental controls established by my Priest.

     But even better for my sense of current human community is that the movies are interspersed, at least in my world, with real life drama about actual neighbors whose activities get reported by my police scanner. The police and fire rescue squads in our small town respond each week to calls for help from elderly men and women who have fallen, sometimes down the steps to the basement; to attempted suicides by young people, mostly boys, to reports of fights and/or domestic violence inside/outside homes and fast food restaurants and gas stations; and to grass fires started by a car in a ditch, by hay balers getting too hot and by lightning strikes too close to piles of bales or to a tree line --- or sometimes the strike just hits the plain old ground, killing nearby livestock. 

     In between those are calls from the nursing home for assistance in getting people to the hospital and then from the hospital to the rescue helicopter or to meet the airplane at the airport or for an ambulance transport to larger city hospitals for better, more experienced care.

     A few days ago there was a call to rescue a 65-year-old man who had fallen out of the tree he was trimming and was lying on the ground in, even according to the dispatcher’s carefully worded description, extreme back pain. But then a dispute broke out between two neighboring towns over which squad had jurisdiction over this fellow’s farm and the dispatcher was forced to repeat her distress call to the second town, and the guy on the ground had to wait a bit longer. 

     But bad as that was, it’s probably still better than the comment some guy made on air about the nursing home, saying, “oh we don’t go there anymore in the daytime; they have their own medical staff.” There was a small silence from the dispatcher, at that, and then she, after having probably checked with almost anybody else for a better answer, repeated the call for an ambulance, which was then sent without question. I like to imagine that the fellow who didn't want to go there lost his radio privileges and maybe a lot more than that forever, effective immediately.

     We don’t hear names nor do we get much in the way of ultimate results, but if we ask around we get all the information we could possibly want. These are, after all, very small towns in a very large county with a total population of less than 15,000 people. The word gets out.

     Once in a while we hear a funeral notice on the radio and piece it together from the calls for those taken from nursing homes with unstable stats, extreme weakness or excessive bleeding and it’s no surprise they might have died. But sometimes they also come back, to resume life. One fellow, somewhat younger than the norm, fell out of a tree and hit his head on the way down and was in a coma for more than a year, but now he is walking again and even riding his motorcycle -- not 100% maybe, but better than it could have been.

     Occasionally we get the rest of the story in a tight-lipped news report about the subject whose distress call we heard on the scanner who had been pinned under his vehicle after a rollover accident. We knew he had died. We could hear it in the voices of the dispatcher and the volunteer rescue team, all trying very hard to stick to the numerical script required for confidentiality in on-air transmissions. But when the speed and excitement of a possible life saved diminishes into the slowed down sadness of what’s clearly not possible, they can’t hide it.

     Sometimes it’s sad from the start, such as when a distress call comes in after dark from a witness who has seen a truck driver beating on his wife and kids in the cabin of the truck in the ditch. Even the dispatcher called it a case of possible domestic violence with children involved to give those first on the scene some idea of what they might find, and true to form, there was very little description of what they did find, nor was there much about charges or consequences in the subsequent news cycle.

     We who listen, in prayer -- we who can’t rescue anybody anymore, but can still pray for them -- could well imagine small children either huddled in a corner inside that truck or hiding in the cornfield nearby as their mother tried to absorb the abuse for their sake. All that seemed probable in the days following this and other such incidents is that since no charges were filed and no reported intervention was offered, the family probably moved on and the vicious drama would most likely continue until somebody, years hence, grew up enough to fight back for himself and the others. Of course the old bully could well be the victim himself by then, killed or imprisoned or abandoned in the Alzheimer’s unit, while the children keep on perpetuating his sins upon their own families, kind of in his memory.

   And even with all that, it still could be worse, as it was for the dispatchers and rescuers who answered a call last winter from a child begging them to stop her dad from beating on her mom. What they found when they got there though was not just a beating but a knifing, and blood all over the kitchen from the 20 stab wounds which ended the mother’s life. The dad in that case is still in jail pending a trial for murder and the four children have been taken in by another family, but the officers involved, and this town, may never be the same.

    So that’s kind of my summary verdict from all these sources of story, from movies to scanner to the news; human nature without redemption pretty much climbs straight down the ladder into hell, taking as many others with it as it can. I’m not sure this knowledge is especially good for my own psycho-social health but it does at least remind me of what I’m not missing by being widowed, disabled and otherwise isolated: not a thing.

VACATION DOES NOT HAVE TO HURT

                          Green green grass of summer, amplified!

     My vacation crew for when Barbara is gone has happily expanded to include two new people and one old friend -- the old friend being Joann, my prayer partner and long-time assistant in food preparation. She has quite ably taken over the task of mixing a small jar full of prescription strength vitamin powders and others of digestive enzymes as she also packs my bedside food box each evening with jars of meat, vegetables and liquids for the next 24 hours. 

                         

                                                               This is Joann

    Joann has a full-time job as a baker, a huge family of aunts, uncles, sisters and brothers, plus all their children and grandchildren and hers, but has cleared her calendar for me, for these three weeks, because she knows few others could or would want to manage my complicated kitchen. She'll be back on her days off for the Rosary.

     The second helper is Kathy, who refuses to have her picture taken, but she is an energetic and an accomplished home care specialist, with prior experience as a nursing home aide, jailer, roofer and farm worker and she has seven other home care clients besides me and at least four other houses to clean besides mine! And then, at the end of the week she spends her Fridays cleaning the courthouse. Busy as she is, she is the one who comes within minutes if I need something sudden, if the dehumidifier needs emptied, if I want something more from the refrigerator or if something important should be picked up off the floor (such as one of the bedside tables which inexplicably fell over as I was raising or lowering the bed). 

   She can do these missions of mercy because she is often either coming or going between clients or can leave and go back, unless of course she’s in a town 40 miles away, which also happens, but then she just shows up an hour later. In addition to all that I’m discovering she can trim trees, manage tenants, clean house and solve problems with the best of them. She is someone who will stay on staff even after Barbara, my primary caregiver returns, to provide much-needed respite.

                                And then here's Faith!

    This is the third member of the crew -- who will also stay on for as long as she wants to, or until she graduates from high school, of course. (When she's not fishing.) She doesn’t have her driver’s license yet and lives outside of town but comes to work whenever she can hitch a ride with her sister, mother or father. Her name is Faith and her family brings Communion to the home bound, which is how I first found her. 

   She was the one, even though the youngest of her family, who saw where my paper towels were stored and immediately mopped up the snow they had tracked in on my hardwood floor last winter. When I said, child, would you like a job this summer helping an old lady she said she okay maybe, and then her mother (who is a director of nursing at the nursing home) turned back at the door and asked what would such a job entail? And I said, oh probably some housekeeping and for sure help with work on the computer. Both nodded at that and said they’d be in touch. And so she was, as soon as school let out for the summer, and now she is here at least once a week ever since.

     She is helping to transcribe cassette tapes of interviews I had done with my mother and can do ancestry research way better than me, since she knows her computers. She is a quick study about helping to use the multi-left to get me in and out of bed and the Hoyer lift to get me to the bath and back. Moreover, she decided that I should enter some of the photographs I have on my walls in an art show at the local library where her work was also being entered! Then she came to select, prepare labels and transport six pictures to the show with her mother and father in the car. 

    In other words, this child is welcome whenever she doesn’t have camps in basketball, volleyball, track and field, Church or family togetherness events. Oh yes, and true to the form of her athletic family this skinny little girl also lifts weights!

     I should never worry.

                                New Jersey, in honor of Barbara

QUESTIONS DUBIOUS FRIENDS ASK, AND ANSWERS

                                                        Me In The Mirror

Dubious Friends ask: So, Norma, how are you really?

Okay, well, these past months have been an odd mix of installing upgraded computer programs by way of both caregiver and tech (tech costs $115 an hour now) and then having to fix all the things that go wrong as a result of installing the new programs and then getting used to the new programs; getting a hospital bed and electric wheelchair installed and then getting them adjusted repeatedly so I can figure out how to adjust myself to them; moving everything from the New Jersey office in the garage into the house. (Yes, my storage areas are named after places I’ve lived, including VT and TX, so going there sounds like going there). 

Anyway, those treasures were placed into small plastic boxes and onto shelving units so I can not only see them but also use them as needed. Then my old desk system was moved into the south room facing the south window outside of which is a bird feeder and sunshine on good days and a view of the weather; which meant raising up the tabletop 6 inches so the wheelchair armrest can fit underneath; which also meant moving the big recliner which had been there into the north room at a nice angle to the other big recliner (which I may sell if I can get the price I paid for a brand-new heated and vibration equipped sleep chair which is still brand-new because the vibration disturbs my neurology). 

This now means that the prayer room is a dedicated room of prayer outfitted with devotional photos such as these taken from EWTN during daily rosaries and stations of the cross, printed out as a series of meditative portraits for my Carmelite life of prayer. 

The boxes of tape recordings made during the five years when I couldn’t type and before I got a dictation program and a computer which could use it have been moved to the south porch with all of the other radio, tape-recording and DVD playing equipment which is set up alongside the photo printers where I spend my time on sunny days no matter how cold (or warm) it is outside so I can open a door to air out the photo printer fumes.

That is also where the chiropractor comes to make adjustments to neck, shoulders and back and where I use the new transcutaneous electrical stimulation unit for pain relief, where the orthotics expert came to measure for new and better braces which fit into shoes this time, where the Priest comes to hear my confession and bring first Friday Communion (he has also brought Home Mass to the prayer room), where the deacon in training comes to discuss taking adoration to the assisted living center and some day to the nursing home, and organizing the prayer chain on email for those who have trouble answering their phones during the daytime, and this is also where my prayer partner and I say our Salvation Rosary if I happen to be up in my wheelchair when she arrives, or we say it from the living room where I am still sometimes in the hospital bed.

Dubious Friends: Whew. Those are long sentences. The point being?

Okay, this is all designed to help me finish The (six volume) Book on my own, without the help which is unavailable. My computer adviser says there is no program to do editing and organizing nor is there a way to make scanned pages fit with current word processing programs. He says nobody goes back 20 or 30 years to retrieve hard copy. He says the only way to do this is to edit the hard copy by hand with pencil like we used to do in the old days and then dictate it back into the computer by way of these new and updated programs. When I get that finished then I can call him to help figure out what the printer wants in terms of formatting. I am thus turned back toward myself for this second look at my life work and to take my time -- finally including what had been left out as well as more recent ruminations, dreams and discoveries. I am not to be hasty. My days these days in a wheelchair, needing the lift to get to the bathtub, needing help for the food, water and medications I no longer get done with reasonable perfection on my own, is teaching me that lesson.

Dubious Friends: Okay, but is dictation really the only way?

Um, yes. Having lost the ability to type, I use dictation as my only way to write and be proficient even if learning how has been as hard as any foreign language and as with any other language it works only by way of immersion. But for me help came from the state Commission for the Blind and Visually Impaired. In the beginning (as they say) I was not only unable to type but also to look at a computer screen or television without severe eye pain, which qualified me, even to the government, as impaired. This agency accepted my experience as diagnosis (equally unusual for bureaucracy) and not only provided a computer but also the right programs for dictation and for an audio screen reader. 

Moreover, they sent a trainer, a serious computer geek who took on my case as a challenge worthy of his talents, and he has remained my primary backup even as his kids grew up and he went into private business (hence the $115 fee), and even as I regained my vision by taking low-dose naltrexone, originally developed for heroin addicts but ironically useful for Lyme/MS as well. 

He has since helped download many upgrades for this same dictation program onto subsequent computers and laptops, working long distance by way of the messenger program, and it is still just as excellent. Another lucky side effect of that long-term connection has been that he was the one who helped organize and retrieve years of material from multi-generational computer discs, from 8-inch to floppies to thumb drives, from Ambassador to Mac Plus to Gateway to Dell. 

So when I asked if he had a program to help with editing such an archive and he said there was nothing better than the Naturally Speaking programs I already had, I knew he knew. And when he recommended that I print out my manuscripts in hard copy, do the editing on paper and then re-dictate them back into a file formatted for the printer, I knew that would also be true. A lot of the material I had scanned into the computer from previous older programs or even typewritten hard copy was impossible to format anyway. This will be a way to solve all of that, even if it is probably 6000 pages! I do have the time.

Dubious Friends: (silence)

I guess they'd rather not comment on that.

WHEN A GOOD CAREGIVER GETS YOU OUT ALIVE

                                                             Barbara, chief caregiver

     There’s this to add about the last few years, that having become a vulnerable adult in an able world, I must issue these warnings, this guidance and this appreciation, that without an able advocate, we are alone.

    For example, that first week in the nursing home with my second broken leg, there were the bedsores. And then there was the air mattress that got deflated so I wouldn’t fall out of bed during something referred to as the “bear hug pivot transfer.”  All I had after that was the foam rubber mattress my caregiver (notice, my caregiver) brought from home to place on top of the hard nursing home mattress I got as part of my package. 

    Oh yes, I did get the medicated bedsore patch without a quibble, at least nothing like the quibble over the boiled eggs I needed a doctor to authorize.  I asked my caregiver to bring in a dorm-sized refrigerator to provide familiar food, but then the door to that refrigerator had to be locked. (Nursing home rules). We were permitted a key.  So Barbara packed a camp box with ice to contain a day’s supply of the food, available on the table next to my bed. I was saved, though the aides still had to add ice.

    I also determined that a better solution than waiting and waiting for help with the bedpan was to organize my own in a plastic bag tied to my bed rail, with my shoe tied by its shoelace, so I could turn myself over to change the bedpan and the pad on my own. But that was our solution, not the nursing home’s. The nursing home just decided bed rails were dangerous and had to be removed! They did agree to wait with mine until after I was gone home, but what about all those others?

    We knew what happened to residents with no family members or caregivers to speak up or do for them. We could hear the shouting down the hall as aides berated residents for wetting their beds. We had to wonder, where were their diaper pads? Where was the training in compassionate care? Does a nursing home which collects $6000 per resident per month lack the financial wherewithal to keep life civil for its helpless and vulnerable residents?

   I never knew if the nursing home crew appreciated the fewer calls from my room. They were still irritated that they still had to clean up the bedpan and complained that my closed-door-room was too hot, that I kept my window open to the late summer and early autumn air. It was unheard of for anyone to refuse air conditioning, what I called the policy that sick and suffering elderly residents had to bundle up in heavy sweaters, risking pneumonia, just so the nursing staff, 40 years younger, could be comfortable. But it was my caregiver who figured out how to get those windows open, just as it was she who brought in my air cleaner and dehumidifier from home so I could ward off the colds in the corridor.

    A person has to fend for herself. Aides could attend to me after all the other 60 some residents on our wing had been gotten out of bed and been wheeled or “walked” to the meals and back, and then again after they were back in their rooms and back to bed, usually by 9 p.m.  However, aside from physical therapy and the occasional bath, and with my own food supply, I needed far less help. I was therefore to consider myself fortunate, which I mostly did, even if I never could walk right again.

    Most of the other residents, at least on the rehab hall, were stabilized by a gait belt around the waist while they walked in walkers and many, I was told, needed help eating their meals in addition to getting to the dining room and back. They also needed help with the bathroom even if they didn’t use the bedpan. More than a few had alarms which rang if they attempted to get up and walk on their own, and then the aides -- never more than two to a hall -- had to drop what they were doing (seldom less important) and run to that room to stop the calamity.

   Still, the director of nursing insisted the place was “fully staffed” even if she knew I knew that’s what she was paid to say by a corporation determined to pry every penny it could out of the business of warehousing our nation’s elders for its shareholders. What the aides said was that there was no backup beyond one of them agreeing to work a double shift when someone else was “out sick.” And when the college students who had been such good help left to go back to school, the only new employees were haggard housewives who had no other choices. The college students were there to discern a vocation in medicine and were thus eager, interested and bright; the housewives were beaten, tired and sick of people wanting more dirty work done and more beds made for poverty level wages. 

     In between times, far in between times, were the registered nurses who dispensed the medications and checked on the pressure sore patches. Few as they were however, those nurses were the only ones with real answers and actual information. One helped me more than she knew by explaining from her years as a surgical nurse that periodic sharp stabs of pain in a broken limb indicated healing was taking place, not worse breakage. From then on, I could handle it.

    But in general there is perhaps no more noisy or unhealthy place to live than a nursing home and I did everything the physical therapy department taught me to do to get out of it before flu season started and the real contagion spread. As I had learned from my mother’s hard experience, staff comes to work sick as a matter of routine, “if they value their jobs.” I was one of the fortunate few, as was my mother, who had a crew to help when we got home.
     We had learned firsthand what some of the nursing staff told us, that even when doctors and nurses went to the state legislature as a group to lobby for better conditions in nursing homes, they were outvoted. The business and of the nursing home lobby is apparently more powerful even than the professional medicine which cares for its people. This is demoralizing not only for we who live there because we have to but also for the doctors and nurses who have to obey the same unreasonable rules to get us treated. So we do our own research. We are grateful that standard medicine sets our bones and nursing homes rehabilitate our disabilities when they can, but we know their limits. So, we get online and find out what's possible even without a doctor's orders.

    And I do understand that the megadose vitamins, the genomes, the myofascial and essential oils pain relief and the specialized, home-based hydraulic lift are about as far from standard medicine as it is probably possible to get, and as uninsured by Medicare. But they help.

   My psychologist may sometimes hoot, my internist may frown now and then and the neurologist does point a severe finger, but my chiropractor and my Priest are strong support. And I have caregivers who are good and experienced mothers of grown children (and grandchildren) who know how to fix things and find things and even get on the Internet. So, despite MS, osteoporosis and old age, and for as long as my money holds out, I continue to do my best (God help me) to live happy, healthy and at home.

                                                  

NURSING HOME NOTES, FOR COMPARISON

                                                                   SPRING!

   A friend has asked how old I feel. I said it depends on the time of day, the barometric pressure, the pain level between 0 to 10 (I’m five to seven), whether or not I’ve slept in the last 24 hours and other factors feeding into that complicated state defined as an outlook. It doesn’t benefit from looking at my reflection, which only happens because I have an iconographic portrait of Our Lady of Perpetual Help visible by way of a strategically placed mirror.

    If I look at myself instead of her what I see is the classic crippled and crumpled old lady in a wheelchair, legs in braces, a flat chest from a bilateral mastectomy for breast cancer 10 years ago and a round mound of a belly despite a body that is scrawny everywhere else. But if I look at my face and the eyes which inform it then it becomes a picture of someone still very much alive and full of ideas and questions and demands for answers, a person who is thinking hard about survival and philosophy and prayer. That person is not likely to sink easily back into "that good night" we all face.

   And how old do I feel? When I’m in my therapy tub and dependent upon an able-bodied helper to get in or out then I’m ancient; but when I get back into the power chair and I’m dressed and covered and rolling around the house with ideas and plans and lists of projects I need her to do before I go back to bed and she can leave for the evening, I’m ageless and indomitable. I remember watching my mother go through similar transformations. I had the idea even as she was dying of the slow suffocation of pneumonia that she remained enraged at us to her final breath for being unable to do a better job of helping her, and I remain stricken with guilt and remorse to this day that I couldn’t.

   That’s not the only guilt and remorse I have, of course, and if it were not for the sacrament of confession and absolution, and for daily prayer and daily Mass on TV and Holy Church in my life I’d never believe anybody could forgive me, least of all God and last of all, myself. But because of it here I am, still living and hoping. What is good about this enforced ennui is the time it provides, even demands, for prayer and contemplation. My entire domain of three rooms has become a prayer house - all my considerable collection of artifacts and photographs finally on display for myself. By no longer living as if in a housing rental office -- that preoccupation now relegated to the utility room, where my caregiver handles it -- I am ironically freed in my wheelchair to occupy my home as it suits me to do.  I'm looking at the positives.

   And for comparison, if I falter in my gratitude, I can always look back at how it was two years ago at the nursing home, from Room 113.

                                                    MORE SPRING

MESSAGING, FROM ROOM 113

    Me: Hey old friend, I’m in the nursing home with a broken leg, the left one this time. I am remembering how you took me for orthopedic surgery on the right leg nine years ago, then brought me home to mom’s house and mom’s crew, which included you.

    Her: I remember, but that’s terrible news. I am also in a nursing home! Knee replacement surgery recovery. It’s been one problem after another.  Did you have surgery? Do you have a motion machine to prevent bedsores or blood clots? It’s an instrument of torture.

    Me: No, but I’ve already got what they call a pressure sore on the tailbone from this bed being too hard. Then they brought in an air mattress and that went flat! Spent a night on a board. Then my helper brought in my own bed topper. But everything requires doctor’s orders.

    Her: You didn’t say where you broke it or how. Why wouldn’t they let you go to the hospital first? That is crazy. It has to be a money thing.

    Me: I fell at home, 3:30 AM, trying to carry laundry. Had done it hundreds of times before. But this time the ankle was shattered as bad as the other one 9 years ago when they put in plates and pins. But this time and with my history on anesthesia the Doctor decided no surgery. He just set it. So, I got no three nights in hospital and thus no Medicare. It’s private pay all the way.

    Her: Lord. Am sending you this photo of myself. Need one from you too if this works.

    Me: You look great! So glad to “see” you. Just finished my first round of therapy. They try to make it fun here, not just endless reps. Actually this whole home is better than people say, certainly better than when I worked here 47 years ago! (After which I gladly went back to college.) Just sent myself to you in photo. It’s 90° here but soon to change to fall. I know you have it even warmer. They’ve been taking me outside for exercises. I do so love that hot hay field wind.

    Her: This home is good too; just had to get the kinks worked out. They are all familiar with my newfangled machines now and I guess not afraid of doing things for me. Lunch soon, they bring around the drink cart first and pass all the liquid around. Two ladies came to visit and brought a whole birthday cake. After lunch if I find small paper plates I will share with people.

    Me: That sounds like an actual town with neighbors, friends and helpers. Here it’s more like high school.

    Her: Chin up kiddo. Lots of therapy is the answer. My friend has posted pictures of me in therapy and walking. I’m a mess. My hair is wild. Go to Doctor in a.m.

    Me: I think few could ever beat you in terms of plain old medical courage, my friend. You are brave beyond brave in standing up against injustice too. I never forget that day you called the police to report child and pet abuse right there in front of us. I was never so proud to know you as that moment. And happy birthday from me too.

    Her: Hi and thanks. Have brace on again but I don’t mind it so much. Only wear it at night. Was looking at your picture again and you look like your mother around the eyes. Must be your dad’s nose and mouth. Wish we could commiserate together. I just see your mother in that bed, and us together holding hands.

    Me: Yes, I see it too. It’s like she’s looking back at me in the mirror, especially here. As many times as she was in the nursing home, those many breaks, this is way too familiar. And yes it was my good leg. Can’t say what I’ll be left with. I wish we were neighbors again.

    Her: I really understand “don’t know what I’ll be left with”. How long have you been there? Are you casted? How long before they found you?

    Me: There is a cast to the knee and a third x-ray next month with possible boot cast, but no weight-bearing till Thanksgiving. I was the one who called for help – had a phone on the floor with me. Knew it was bad when I saw my foot turned backwards. I turned it back forwards before the ambulance got there. Then the doc casted it and sent me here 12 hours later. Said he might have to reposition the outside bone later but then it was healing well enough and he didn’t have to. So here I am. Praying to get out before flu season. Praying not to fall again.

    Her: Hope I’m not keeping you awake. I was anemic after surgery and they gave me two units of blood. They don’t seem to be concerned about it. But if it is being passed out the bowel then why? And so down life’s merry lane we go.

    Me: No, I was awake. Had to be pulled up in bed. Am watching a new moon come up for the third night. Big east window is glorious day and night. One day at a time, dear friend. That’s all we get. 

   Her: I am on the inside wall and the lady with the window never opens the blinds. Her window faces west. Think all that is on the other side is another wing like this one anyway. I’m thankful you and I are in the same time zone. Sometimes that is all we do get is one day at a time. Take care of yourself today.

    Me: So sorry about the window. Rehab residents get private rooms here which is the second reason I’m staying sane. First reason is my door is closed, officially due to the dusty carpet in the hall and my asthma, but more for my deep need of solitude and privacy. With my air cleaner, dehumidifier and small refrigerator I do okay. I do my own puréed non-toxic food (some of it baby food, some by helper) which is a third source of sanity. With my machines there’s enough white noise to almost keep out the call bells. I’m very aware that even if God did let my ankle break he still took good care of my prayer life. And He gave me a helper who does my food and laundry at the house and has for years and now also collects rent as I used to do for my brother who comes in every night to pick it up. My heart does go out to him because if you and I see it you know he sees our mom here on this bed too. And I am just as she was, still taking care of him.

    Her: You are blessed with the window. I’m so happy to know you and have been blessed to know your family. This thing with the knee has truly humbled me and made me realize how vulnerable we are.

    Me: I was hoping the window would bring you home! Actually the room right across the hall is vacant and it has the westerly view. Sent picture of blue cast on foot.

    Her: How pretty is that! That alone would make my day brighter. Do you have your computers and stuff? Sent picture of ice pack on knee.

    Me:  I am having such fun texting you. Every time I wake up there’s a message and now also pictures. You disappear the distance. And yes I do have the one computer here but not on the days I’m out for therapy. I have only one lockable drawer. My helper brings it maybe twice a week when she comes at night with receipts and reports. I do have books on tape just not enough of what I want. Wi-Fi here is spotty at best. Nursing staff is not good with computers but the CNAs carry smart phones and can look up computer stuff for me. It’s a brave new world.

    Her: Can you still use mom’s electric wheelchair or need a different one?

    Me: I’ll need a new one. I’m using her manual recliner wheelchair in here, with leg rests. Docs prescribed both the side entry bath and sleep chair I have at home but I still had to pay for both by credit card and shall again with this I’m sure. Medicare has its rules. Biggest challenge will be to determine if I’m ever safe to walk again. Do not want my legs broken five times like mom had.

    Her: No you don’t want more broken legs. Have you ever taken Lovenox? If you don’t have to don’t do it. It’s a blood thinner and a killer. Has to be given in the belly below naval two times a day and it hurts so bad. It bruises and stings for about half an hour. Talk about torture. That is right up there with the CPM machine. 

    Me: I have had the Lovenox to prevent blood clots, they said, but not those side effects. I had taken Avonex shots weekly for three years for MS and Forteo shots daily for two years before that for osteoporosis (bone density – 4.9) so I just take the syringe and insist on doing the injections myself. I find it hurts less if I choose my own injection site and speed. 

    Her: I just don't like needles.

    Me:  Did I mention I’m losing my doctor-ordered bed rails? State inspectors called them restraints. Said somebody once broke an arm in a bed rail. But I do not know how I shall move up in bed, change pads myself or get onto the bedpan without the rails. The call bells are never answered in time for my body. They’re talking about a trapeze instead. Can’t imagine it.

    Her: What next! Soon we will have no rights. There must be a way to get around it. I can’t imagine such a thing either, a trapeze? Okay, so if you can’t use that then what?

    Me: I asked what if I fell out of bed with no rails and they said just lower the bed to the floor and you won’t have so far to fall. I tried that, lowered the bed to the floor just to test out their theory but could not see out my window, the window which keeps me calm. Not good.

    Her: What a stupid answer they are giving you. I don’t think the alternative of a trapeze is for you. You can only use one arm well. What next. Nothing is a choice anymore. I really do miss you.

    Me: What’s next is me getting a used hospital bed with rails from home health, paying for it myself and going home. All I have to do is get better at the board transfer to the commode and the wheelchair, which could be next week if the x-rays are good. As to the bedsore I can use my tried and true round pillow at home, which was also outlawed here by the powers that be. I was cool till the 24^th but now I just want out before frost and flu season start.

    Her: I don’t even want to think about frost and flu. How long are you up during the day?

    Me: Usually I’m up for four or five hours for physical therapy and sometimes even go outside in the sun. I throw the ball from the chair for balance and upper body strength and all sorts of arm exercises. When I have the laptop I use it in the chair too since it’s too heavy in bed. Now I have the tablet in here which I never learned to use before plus a smart phone in the same category. I’ve just preferred an older smaller blue, plus it was cheaper to use. But now what the heck, why bother trying to save dollars when these two months are costing me the motor-home. I can and do still write, so far. God must not mind that. I do miss those warm winters of yours, but I had my chance. And now it’s too late to leave.

    Her: Glad you’re still writing at least. Anything published?

    Me: Just journalism, but publishing online is a whole new and possible world. This Priest has used it to publish a cookbook and says to do mine when it’s ready. Which the first volumes already are. And now my helper is rescuing the fiction too. Says she can edit out the parts unappreciated by the Church. I’ve also just bought a used hospital bed plus transfer board and commode with removable handles for home. Even found a pillow with a coccyx cut out to heal the bedsore on my tailbone. Doctors and nurses are no help -- they only know the rules against things. So. The long march home has begun.

    Her: I’m ecstatic for you. You can get yourself going on that transfer board and whatever else you need to accomplish so you can go home. I’m awake every four or five hours and want pain meds. Some are concerned I am addicted. I try to do one instead of two but I get upside down on pain and takes forever to catch up. I can assure them I don’t have an addictive personality and they just look at me. This is the worst surgery I have ever had. The pain is debilitating to say nothing of the emotional side. When I hurt I don’t do anything! Hate it. So how’s your night going?

    Me: Terrible. Don’t let them bully you. It’s not them in pain. I’m betting you have fibromyalgia on top of everything else. It piles on when pain gets chronic and makes it worse. My experience. And I’m having a nightmare time getting my body to use the board transfer. I have unbelievable pain from both MS and fibro and it literally sends muscles into spasm which makes me feel like I’m falling off the board. I have to get totally independent in my room before I go home and I’m so far from that I could cry. Also had to buy my own coccyx cut out pillow to try to heal this bedsore. I get no help. Only prayer. Spent all day in bed after the battle with the transfer board. And now my helper is leaving for a three-day weekend and my brother for five days! Guess who gets all the rental business. From a bleeping hospital bed. Yeah it’s a hard night.

    Her: How can you do the rental business from the nursing home? That doesn’t even make sense. You know I’m praying for you. It doesn’t matter how much you hurt they don’t care. Wish I could help you. I don’t know how a transfer board works. I’m assuming you have to slide from one thing to another? Lord knows. How can you be totally independent in your room? You will always need a certain amount of help. Do they want you to walk on a broken leg?

    Me: I just have to pray God helps me since He is here with me in this. And yes that is what the board is, a 24 inch plank between bed and wheelchair and commode. I have to slide my sore behind across with one foot and one good hand. It’s absurd to say it’s the hardest thing I’ve ever done. But there won’t be any help at my house at night or on weekends so I have to get independent. I only hope someone will show up when I need it. Or else I get better. It has happened.

    Her: Well if the Lord saw fit to allow this to happen to you then He must have a great plan. I can’t begin to understand such things. Like you say someone has come by at the appropriate time or else you get better. I’m praying for the better part. What are they doing for the bedsore? Seems nothing. I don’t know if there’s a special mixture you can get to put on it or not. My pharmacist is an alchemist. One that mixes RX. He has made some wonderful knee rubs and I only need to use it on one knee now.

    Me: They’ve been putting on what amounts to a giant medicated band aid. But they don’t change it oftener than every three days and even with my lack of bowel function that’s not my idea of clean. I don’t get a shower bath more than once a week so I asked to use my bidet pan with the lift. That bidet pan took a doctor’s order! It is so hard. They say it’s healing but sure still hurts to me. They also say I can’t go home till it’s gone. Makes me wonder.

    Her: I wonder too. Is Doctor aware of bedsore? And how often they change the bandage? Seems unclean to me. You can’t get in the whirlpool with it either. Doctor ordered me to wear support hose for a while yet. I asked where the order came from, who it came from, was I supposed to initiate the call? No one could tell me. So today she comes running me down in therapy to get measurements for stockings. She will get the order off Tuesday and I will be gone when the order comes in. Have a care plan meeting today at 11:45. Whatever that is.

    Me: Care meeting here is upper management all getting into the room with you and expecting only positive responses. They stand there with papers in their hands looking at you for answers to their state approved questions while they assure you that nothing is really their own fault. It’s all the state’s fault. Today I am up in the wheelchair and got here on the board! Not easily but without assistance, though PT was standing by.

    Her: You made it. I’m excited for you, up and into wheelchair by yourself. That’s progress. Next time will be easier. Maybe not so much but less stress. You will do better and better. Every day I see improvement in bending and straightening my knee. It may only be 2 degrees more but it’s progress. My leg doesn’t hurt as bad after PT so I’m happy.

    Me: I still regret selling my camper van but I do want to lighten my load. My Priest tells me to keep anything I might replace if I let it go, but how do I know?

    Her: I have learned to part with “stuff” and if I need it again later I trust the Lord to supply.

    Me: Good advice. I just really want out from under, to have space. No matter how illogical. And a bigger house is no longer any kind of a possible answer. Your camper trailer and new steps look so clean and so movable. I may have waited too long to try it but I do admire your way.

    Her: I wish you could be down here when you get well. My house is on wheels. We haven’t decided what to do with the house where we lived there yet. We could rent it out but there is too much in the basement and even our drawers and closets. Still stuff in the kitchen cabinets and drawers. Just need a week to sort and have yard sale! Maybe before the snow flies we will get a chance.

    Me: I have now had a shower. After waiting and waiting. My big flaw: severe impatience. Most of the time I do okay because I’m so very on my own in here. But now we have Catholic Mas (which was why the importance of the shower) so I will be better. You okay? Things slowly better here. I did the board transfer yesterday without help. Cut off some sweats to make shorts which make the slide easier. Don’t know why we didn’t do that sooner. Wish you were here. I’m still losing weight. I’d use Ensure if I could find soy free. Still can’t do dairy. Did fine at home and my helper brings my things here but still, 11 pounds in six weeks? Bed to be delivered Monday and x-ray Tuesday. PT is building leg brace for right leg. Must not and cannot fall again.

    Her: I sure would like to get my walker out of the basement. I hate the one I have. The wheels need WD-40. They go crooked and hard to turn. Hope you get along with the brace okay. Glad you understand you cannot fall again! Let me know about x-ray. They took blood this a.m., no results as yet. I’m so anemic, pale and lightheaded. Don’t know where my blood is going.

    Me: This is scary stuff. Tests and results, often wrong or off the mark. Things are improving here but I know how quick that can change. Prayer is all. Today is the Avonex side effects so I’m seeing a lot of old movies. Not even up in my chair. Did have renters plus old-time company from the country road. Talked a lot about mom and how she once came through a blizzard to stay with the kids the night their granddad died. The whole party line phone had heard the call for the ambulance and snowplow, but nobody else had responded. They said they never thought to ask how she got there through five feet of snow but then we agreed it was probably on a tractor, which my dad would have got out for her. That was them. Nice gift.

    Her: Wonderful memory. Thank you for sharing. Were they your neighbors that she went to be with the kids? How is the bedsore? They can be so hard to deal with. Hope it’s almost well.

    Me: Yes, old neighbors who came to visit. It was their dad who had died. Mom tried so hard to be friends with people but with some it was always still high school. Fortunately there were a few good ones who made the difference. I so hated seeing her hurt. The rental business was good for her, gave her a chance to show what she was made of. And me too I suppose. Even in a nursing home. (Though I have other talents. As did she.)

    Her: I know the rental business was good for your mommy. It kept her mind sharp. I look back so often and appreciate her and her good advice. She knew I respected her opinion over my own mother’s. I feel that gave us a special bond. I knew what she was made of. She would make me happy when she would get excited about the warm bean bag I put in the foot of the sleeping bag. She knew I wanted to help her in any way possible.

    Me: This is what’s so important about friends and extended family. We get more than the single unit we might have been born with. I’ve come to believe we meet people all along the way who qualify as family. We maybe didn’t know it at the time but see it later. I hope and pray God has it all sorted out. As to the bedsore I can’t tell for sure. They say it’s healing but it still hurts. I do move around a lot to relieve pressure even in bed. All these leg exercises keep on working.

    Her: I was sleeping so sound and then the usual, someone dropped something right outside in the hall. Had to be a board or whatever. Reverberated through the walls right next to my ear. I sat up and said a bad word. My roommate is so subdued so she is never surprised about anything, just rolls over. She will probably go back to sleep and never complains like me. I had two Vicodin at 11 PM and then when I asked for two ibuprofen at 2:30 AM the med nurse balked. I said just bring them. He and I have been around this bush before. I’m so glad I’m going home on Wednesday. Blood work came back good. I’m making blood again!

    Me: What I hate is when they just open the door at 4 AM, turn on the lights and walk in with towels or whatever. Oh did I wake you they always say. I am such a light sleeper anyway and can’t just doze off. Saturday even my good CNA forgot to get me up so I was in bed 36 hours. I’d have spoken up but it was my day for side effects. They literally did not check on me from 2 pm in the afternoon till 4 am the next morning. I just watched old movies and did exercises in bed but still, for $200 a day? Maybe they were just honoring my solitude. On Sunday I told requested a shower and a change of bedding and got it all, plus. But what about those who can’t speak up?

    Her: That is it! I think about them all the time. This home runs on short staff about 70% of the time and to get anything done is like pulling teeth. I’m so sorry about you going through that. What were they thinking? I got here on a Thursday and thought I’d of had a shower scheduled Monday, Wednesday and Friday, or Tuesday and Thursday, but by following Wednesday I decided I’m having a shower. Got all my stuff and headed to the shower. The mechanic passed me and said you need towels so he turned around and got me three towels and wash cloths. Then one of the CNA’s came by. She helped me in the shower and I promised to wait for her to go get another patient to shower her. She did the other woman and got her back to her room and then came back for me. Lovely time. I’m on the schedule now.

    Me: Keyboard just quit in mid message. I’m so glad about the blood work and you with somebody who wants you home. The rental business is not quite the same thing. And to be honest that house has never been my home.May do better here with PT and help. Am very apprehensive about falling again. This time was such a shock. But PT is building a leg brace for the unreliable right leg. It’s $1500 if the Doctor refuses again. But I don’t care. I need help. Am feeling real cornered. At least I am doing that the board transfer better but nothing feels good or safe. I pray but that’s all I have. So glad for you in the shower. Such a simple thing and it means the world.

    Her: So right. It doesn’t take a lot to make me happy. I am so very blessed to be able to ambulate with only the walker. The wheels tend to go where they want. Wish I had my other one from the basement. The four wheeler with the seat. I really don’t feel too safe when the wheels are rolling left and right and I’ve caught my foot on the back leg more than once. It’s scary. I think WD-40 would fix that but no mechanic on Saturday and Sunday.

    Me: No mechanic here without a doctor’s order. No van driver. Hospital Van too busy without doctor’s order. At least they’ll take me to x-ray on Tuesday. But today may be our last warm day and PT at least will let me outside. Carrier will hear from me today about reactivating my smarter phone, even though I am very attached to little blue. It will be nice to have all the big features working. Do you know when you go home? Everything here is maybe, we’ll see. I think they think I’ll be back. Doctor says next time it’ll be a hip. Wish she hadn’t said that. Wish my stomach wasn’t hurting. I try to eat more and crowd the hiatal hernia area, which hurts. Am trying to stop this steady weight loss before the doctor demands another gastroscopic exam. What a nightmare. The one thing about going home is that I can heal stuff like that on my own. Takes a while but nut butters do it. I have them here but can’t get it rolling. Yet. Sun is starting to come up.

    Her: Did Doctor say that to you? What an awful thing to say to you or anyone. My gosh. You will get stomach under control when everything settles down. You are a take control kind of woman and you can do it. My oldest and wife just spent a week in Hawaii. Sent me pictures of the water there. That is one thing I added to my bucket list, to see that turquoise water and white sand beaches. A hammock and I die happy. Time for therapy. More later.

    Me: I think my brother thinks it’s good for me to have something to do! He does care but in his own way, on his own terms. I’m grateful he’s at least his version of friendly to me. He wasn’t at first. Mom knew and kept hoping we’d come to be friends and we sort of have, by way of the business, but I do know how quickly that could turn. My real family is Jesus.

    Her: I’ve always liked your brother and believed he seemed to be comfortable around me when there was just him and me. He was never comfortable if another person was present. Just the way it was. Isn’t life odd. Just think how our lives changed by the choices we make.

    Me: I could change things if I chose, yes? I know that and still can’t. It’s kind of like I have to be “called.” Which is how the Church puts it. In order to leave I have to have a God approved place to go. And how do I know where that is? I wait. I wait and pray. And now it’s two more weeks for the boot cast and leg brace and a few days more to learn to use them. Maybe walking, may be just for bed to commode. Someday it will make sense.

    Her: You are the bravest person I know. A plan to get from the bed to commode. Don’t know if I share this with you or not. What some take for granted others are praying for. Makes me stand back and take a look at my own nest. How could we do that with so many people? By always looking at what others have and wanting the same or more. God forgive me. I get out of here today! Don’t know what time but just like the government, you hurry up and wait. Am going to make my rounds to say goodbye.

    Me: Wow, today. I’ll get there too. Helps me to make the seriously best use of my time when I do get home. I will be going on lots of drives! And I’ll try not to anguish about probably losing my license next May. Five years since you and I went to get it renewed! Onward. My goal is to just accept what is clearly God’s will. My best to you and thanks for those wonderful nights of texts. I feel as if we did share a room. Please keep me updated on this next transition. And thanks for your friendship.

    Her: I plan to keep you updated and the same for you. That has been my goal too, to stop complaining. I guess I haven’t reached my goal yet. I’m still complaining. I want you to know, I truly value our friendship. It doesn’t matter if we just text each other or it’s been months we both seem to bridge the time and friendship flows through. I only have a few people I can say that to. But for now I want to get out of here.

                                                                        SUMMER