Thursday, April 28, 2016



   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

    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 24th 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.


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