Here I am, moments before the procedure I said I would never had. I am smiling because 1.The nurse was able to put in a really nice IV and 2. I have this really cool heated blanket on that blows hot air through the whole thing. Small pleasures. So I am home, with a bit of an infection so I am on antibiotics once again. I am still in a period of shock, and overwhelmed by all the tape and tubing that has suddenly become the reality of my life. Grief of change, loss of the plan for my life, another wave of the realities of MSA flood over me. This month's Spirituality & Health magazine has a column by Geri Larkin, author of Close to the Ground; The Seven Factors of Enlightenment. She talks about learning to lean into suffering. "Until we realize that there is simply no escape from the pain that life brings and that all we can do is sit in the middle of the fire, we only pile suffering on top of suffering. Resistance is like that. So we lean in. And suffering dissipates."
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Living with terminal illness is like being hit by a series of huge waves. Life goes along day by day; I begin to think I have a handle on how this disease works and BAM! Something knew. Having MSA sometimes feels like some deviant gnome with sharp scissors is living deep in my brain; ready to cut the next connection to some important body function. This gnome has been hacking away at whatever the cord that connects my brain to my bladder for some time. First I had an occasional accident, which I chalked up to just getting older. So I began wearing pads and began a serious exercise program of pelvic floor exercises, guaranteed to do the trick. So when that didn’t work I began all the tests with an urologist, including a test that includes electrodes, tubes, wires, a male x-ray attendant, and a bucket. I am not kidding. Many medications followed more pads and finally a sacral nerve stimulator that actually worked for a year before the deviant gnome finally managed to disconnect my brain from my bladder. Diapers ensued. I have been told that in the world of adult incontinence they are called by the brand name Depends. They were somewhat dependable until the gnome found yet another small connection to snip. So Wednesday I am having a “Supra Pubic Catheter” put in. This is permanent, unless Jesus himself comes down and yells surprise! This was all a joke! A tube will be placed in my bladder and out my lower abdomen, hence the supra “above” the pubic-bone name. The catheter then flows into a bag, attached to my leg in something that looks like a holster. I imagine robbing a store by grabbing the bag and yelling stick em up! They would probably give me the money just to get me out of the store. Once again I will go up to Seattle for a day long procedure, including having to have a nearly impossible to place I.V. Last time I had two anesthesiologists using dueling ultrasound machines looked for one tiny vein, while the nurse quietly checked out my ankle, finally finding a vein and getting the I.V. in before either doctor could even find a vein. You have to love nurses. When I first was diagnosed with MSA, before that naughty gnome got to my ability to balance, hold a cup without shaking and caused me to pee all over the place I made a list of things I absolutely would not do. I just could not allow my family to care for me all hooked up like that. For example I would never have a tracheotomy, or a feeding tube, a pacemaker or a supra-pubic catheter. I was convinced at that future moment in time, these things would be deal breakers and that I would end my life before allowing these things to happen to me. Today I spent the morning with my whole family at our annual Easter brunch. I have many cousins who were there, cousins with new babies, kids who have grown a foot since last Easter, kids I couldn’t even place the family is so big. My brothers and sister and all my wonderful nieces and nephews were there, and of course, more babies. As I write this all three of my grandchildren are playing in the backyard, reenacting their favorite movie Frozen on a trampoline. I could have missed that. In the middle of this next big wave I am surrounded and held by those who love me. My husband and daughters, my grandchildren and friends. And I come up for air long enough to recognize that I can still be here, still engaged with a tube in my belly, or for that matter any number of wacky things I swore I would never do. My dear MSA on-line friends, people with MSA and their caregivers wrote in response to my asking the question “When is it enough?” From a caretaker I received this note: “I know my mother felt like a burden to her family for having to depend on us all completely for her care. But this is how I felt about it; yes it was very hard work and there were times you thought you couldn't take anymore. But I wouldn't change that time with her for anything in the world. She was taken far too soon as it was at 63. So anytime that we had left with her was priceless. I look at it this way, when your daughter was a baby, she was completely dependent on you for her care, and even all the ugly phases of that... as we all know, taking care of an infant is demanding too... but would you trade that for anything? Your love for her overlooked anything demanding that you may have had to go through during that time. It is the same feeling for us caregivers. Our love for our mom/wife/grandmother is what carried us through that time and we WANTED to care for her. We wanted her here for as long as we could have her. As taxing as that time was for us all.... I would not hesitate to do it all over again, to be able to spend that time with her again. Let them love you.” So I am scheduled for Wednesday to have a procedure I said I would never do, and I am happy about it. The big waves continue, but I am getting better at this soul surfing. The story goes that in the mid 60’s my Grandpa Bill financed a tavern for his son Bob. Grandma Lu seems to have been left out of the loop, as this transaction came as a bit of surprise to her. Now I am not sure if the purchase of our cabin, Granny’s Pad, transpired as a direct retaliation to the tavern, but however it happened, my Grandma Lu bought a cabin on Hood’s Canal for her three daughters. I remember my first visit to the cabin. It was the summer of 1965. We drove down Highway 99 to Highway 101, then through Shelton and right along the Canal. The first water we passed on the right became known as “Not It”. What we were waiting for, “It” was the first place you can see the canal along Hwy 101. That was “It” and it meant the cabin was near. My brother Randy and I knew all the landmarks along the road, because the first to see the sign to turn would call “I got it!” and that meant they got to use the little boat first. Driving to the cabin this last week, in 2013, I again had the feeling of returning to my spiritually special place. I thought “I got it!” as the sign came into view. The cabin itself is simple, two tiny bedrooms, a small kitchen and an open living room and dining area, with a deck that went out over the water. Remember that this story has three daughters. As we entered the cabin the first time my mother shows me the bedroom to the left, that is Aunty Ta Ta’s room (eldest); the bedroom to the right, that’s Aunty Trudy’s room (middle daughter); and my room is right here! My mother proudly points to the space between Trudy’s room and a small bathroom, big enough for a double bed. Anyone who needed to get into the one small bathroom had to go right past the bed. That is the birth order of the girls, Ta Ta, whose real name is Catherine, I am named after her, Trudy and my mother, the baby of the family. I think the arrangement is perfect. This arrangement of rooms remains today, even though all three sisters have passed over. So the ownership of the cabin has gone from the three sisters, to two daughters each in Ta Ta’s and Trudy’s families, and four siblings sharing our mother’s third. That is eight owners. All decisions and money issues around the cabin are decided by the “Rule of Three”, weeks are shared by threes, money is shared by threes, and decisions are all made by the Rule of Three. Things get done when it is necessary, eight owners have different ideas about what is important, or worth money and time so it boils down to one of us finally just doing it. Everyone is usually pleased by changes and upgrades, unless they are not, but anyway it goes, we work it out. The thing that everyone agrees upon is that Granny’s Pad is our special place. In a small cove with a group of cabins all in a row, ours is right on the water. The tide comes in and out, lapping against the bulkhead, surrounding three sides of the cabin. In the winter, my favorite time to be at the cabin, the high tides used to completely surround the cabin, forcing us to park our cars up on the Highway and wade in. I remember those flooded days as so still, not a sound or wave spoiled the expanse of water that spread past the cabin, up to the little road and across to the stream. Salt water meets fresh. Those floods don’t happen as often anymore, some remedies have been made, very technical, a large berm of gravel now sits in front of the stream, keeping the stream and the canal from the great conjoining. I had my first romance at the canal, the handsome young Shannon whose family had a cabin in the next row; I learned to ski and swim really well, my father taught me how to eat raw oysters and make a bonfire. He used to say if anything ever happened, like the Big One, we were to try hard to get the cabin. At the cabin we would be safe. At the cabin, nothing not even an atom bomb could hurt us. I still carry that feeling of feeling safe and protected when I am at the cabin. My father told me I would be safe there, and I believe him. Those where the days of no sunscreen, so we all stayed sunburned from June until school started. I took several boyfriends to the cabin, but one stuck around. Chuck became my husband, and I think he really married me for the cabin. Time goes so fast, soon we started bringing our baby girls, Sarah and Heather, who along with their cousins, all grew up combing the beach for all the treasures we could find. Giant moon snails, ghost shrimp, there never ending generations of tiny crabs. Now my daughters are grown and their children are enjoying the cabin. Last week, in the middle of a rainy March the children played out on the beach, back in the forest and at the small bridge they call the “Troll Bridge”. They went through several changes of clothes in a few hours and then joined us in the steamed up cabin, table set for dinner and plates piled with fried oysters and steamed clams. Our grandson Oliver takes great pleasure in dissecting his clams as he eats. What’s that part Grandpa? That is the clam’s stomach. What is that green inside there?; as he opens the stomach up on his plate. That is the food he was eating, grandpa responds, not even glancing at Oliver’s plate. Oh, that’s cool, and he eats the clam bits. I felt something hard as I bit into an oyster. I pull it out, and there in my hand is a perfectly round tiny pearl. I take a second and just sit in amazement as the canal once more reminds me of life, and the endurance of family, the resilience of the body. Oliver now has the pearl in his “special area”, really an altar on his top bunk. All his special things, Legos, rocks, shells, transformers, all the things a young boy holds dear. Several years ago my friend, Dr. Seji Iwata was visiting from Japan. I drove him out to the Canal; we saw eagles and elk along the Hama Hama River then went to the cabin for oysters and sake on the deck. It was freezing cold, the tide was out. I began picking up oysters from the shore. Once he realized that the “rocks” I was picking up were oysters he began gathering large handfuls. We simply opened the oysters and ate them raw, with a drink of very cold sake. A moment of being with a good friend, the tastes of the sake and oysters and the sun that day is one I picture often as my version of heaven. Both winter and then early spring brings an amazing array of shorebirds, eagles, gulls, seals and sea lions. Occasionally whales swim by. On a sunny January I find myself snuggly wrapped in blanket on the deck, a cup of coffee warming my hands. I lay still on the recliner and just breathe. Cool air, warm sun. I can hear the sounds of the birds that I love so much. I have both giant and pocket size binoculars, and a spotting scope. I document in my bird book then bird, the date and location. Most of my shorebird entries say Granny’s Pad. Lying in the sun, eyes closed, I repeat my list: Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue Herron; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting. This is the place, at the cabin of the three sisters, in the place of romance and parties, of children and grandchildren; being warm on the deck; the water lapping; walks in the woods, of crisp cold oysters and sake on the deck in January, driving in late on a snowy night and needing to turn the electricity and heat on quickly, I say, "it's freezing in here!". My bird prayer repeating; all of these memories fill my mind during the times that I am in pain, or preparing for surgery, or having yet another round of procedures that hurt so bad they don’t even try to lie by saying “just a poke”. Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue hereon; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting. My story is of the Canal, the memories of being there with friends and family, seasons passing, my bird chant, life itself is stronger than any pain, procedure or medical condition I endure. I know who I am, I am Lula’s granddaughter, whose youngest daughter is Margie; and I am her daughter. I have a cabin, a small tiny bit of heaven on Hood Canal, and it sustains me. Life keeps happening, even when you are dying. And yes, I know we are all dying, but when you have a disease that has an UP TO NOW 0% survival rate it just seems to me that I get to say it with a bit more pizazz. I am hoping that those of you who are reading this really understand that I have no intention of dying, well maybe at 99, after a really big party where we will rock out to Queen, Little Feat, Lady Ga Ga and whoever else might rock my rocking chair. I still have all the symptoms I have had, but I am really sick of being sick and have decided to rejoin the living for as long and as well as I can. To this end I am coming off of medical leave as a Practitioner and have joined the Council of CSL Olympia in charge of Ecclesiastical Affairs. The Practitioners are all a part of the Ecclesiastical leadership of the Center, an important role as we begin our “open pulpit” process, as we search for our new Minister. And I am going to Hawaii in May for a week. I have no idea how this will work. When I first got sick my idea was that when things got really bad I would go to Hawaii and just follow one beautiful colorful fish after another into the great beyond. After speaking about this plan my family has some concerns about me going. I have made a solemn vow that when and if I ever get to the point that I am done, I will let them all know, so this trip is not something for them to worry about in that regard. My concerns about the trip are more around the going on the plane by myself from Seattle to Kona without a major mishap, getting in (and out, remember my solemn vow) of the water; and just putting on a swimming suit (dressing myself can be somewhat of a challenge) and the whole bathroom thing. Luckily I am traveling with a dear friend who loves me unconditionally and who has already experienced traveling with me. I know whatever happens, even if I have to just hang out and eat tropical fruit in the amazing house she has found in my favorite part of the Big Island, Hawi, so be it. Life is very good. All of this sounds like I am alive and kickin’, but there are a few exceptions. I am unfortunately moving into the next phase of bad bladder issues and I am scheduled for more fun with my urologist. Let me just say that Botox apparently has many uses besides frown lines, and I am about to experience an alternate use. MSA is a weird disease that does not follow a clear course, and with my main symptoms being autonomic nervous system that really means all bets are off. Everything that is automatic in the body can be affected, stem to stern. Today it is the stern that is causing me troubles, well, plus the walking thing, but I can use my wonderful Luggie roller to go pretty much anyplace but up steep hills. And thanks to my husband Chuck I get a great push now and then. The point is, I keep going. So I am still sick, but I really, really want to be well. When I have a good day I will agree to anything. Bad days are just that, bad. My choice is to really live big on the good days, knowing bad days will possibly come, but I don’t want to preplan for those. I go for as much as I can, knowing that I am surrounded by those who love and support me and who also know I can have a bad day now and then. My guess is that everyone goes through something similar to this. So whatever your thing is that causes you to feel like you need to hold back on your good days, knowing a bad day could come, this is my advice: RISK IT. Risk everyday; say yes to things that scare you and say yes to things that could end up potentially break your heart. If you do not live like this you really can say you are dying.
I lost consciousness during the movie Monument Men, my response was in no way a comment to the excellent movie with John Goodman and George Clooney. Thank you to the nurse who stopped to help, you could have walked past but did not. You are a spirit lead healer, blessing to you. I also understand a whole bunch of medics arrived to assist me. Thank you for choosing a profession of assisting others in need, our entire community benefits from your choice to be in service. Whoever it was who kept pinching my sternum, although I could not respond then, now I am ready to say OUCH! Chuck took some pictures at the ER, I was sorry to hear that he did not have pictures of the whole movie theater/medic scene, come on, I have a blog here! Next time camera first, 911 second. I am sure the staff of the St. Peter's ER have to deal with family members who want to be with their loved ones and would just be in the way, but stopping my RN daughter with information about my unusual medical condition from coming in, or at least speaking to a staff member was bad form, leading me to consider a long involved TATTOO with all my medical information. The ER staff and doctor with no information to go on did a great job caring for me, ruling out all the life threatening things I could have been presenting with, unresponsive, cold and without feeling in my arms or legs. Best of all they let me go home. It had gotten dark and snowed while I was in the ER, the air was fresh and crisp, Heather and Sarah helped me as Chuck pulled the car up to the door. I am still recovering a week later; my guess is that my arms and legs, failing around willy-nilly got banged around a bit. I still cannot lift my right arm and have pain in my shoulder. Since I had a replacement joint, there is not an easy way to figure out what is happening. Because I draw or felt every day this is a problem. I am trying some left handed drawing and like the loose style this creates. In the moment, I have no fear. I the moment all there is only love. "I wasn't sure we would be bringing you home this time mom", my beautiful daughter says as she sits on the end of my bed this morning. Life is so precious. Once again I am being bombarded by very helpful people who are sure they can cure my illness if only I would “try hard enough” and “put the time and energy in to my healing”. I must somehow want to be sick if I do not take their advice. I started with an idea of carrying around a water gun so I would not have to answer, just aim and fire when I am asked again if I have tried an all juiced vegan noni diet. This might not be the crowd you hang with but I live in Olympia, WA, the capitol of alternative everything. (You would not believe how much pot I have been offered, with the idea if I could take enough I could be completely cured, or more likely I just would not be able to tell…) A special squirt gun blast went to the person who said that everyone is going to die, so I should just stop fainting and just don’t thinking about it. (Squirt Squirt) For you following my progression on my blog from really nice pastoral Cathy to swearing, in your face, just say what I mean and get ready to be bossed around if you are attempting to provide healthcare. My squirt gun days are over, too sweet, a bit of a joke. So here is the real answer to people thinking I am going sweetly into that good night. I have had 60 years on this planet honing my skills as a Cultural Creative. I am a strong and courageous woman. Every event in my life, every decision I have made, all the writing and all the art I have done; both published and squirreled away in old journals bits; I am well educated in the very subject of Mind/Body/Spirit connection education and I know without a doubt that all of my life experiences have imbued me with exactly what I need for my healing. I am a keen observer of life; of children, birds and animals, and living my life in the open hearted and graceful way have all lead me to where I am today. My life experiences are not the cause of my disease, but they certainly are how I have become the clear, focused, loving, funny and clever woman I am today and all of who I am is the direction from which my healing occurs. I have set up the perfect PhD program in advanced understanding of Body Mind and Spirit connection, I have no doubt that I will receiving exactly what I need to know for true cure, not healing. So Mr. Gluten-free fruitcake with a short stack of colonics, go handle your own body/mind classroom and stay the fuck out of my healing space. I am still going to hold onto my squirt gun for the short answer. Squirt Squirt. In grace and ease, Cathy Today I received a call from a woman wanting to schedule an appointment with me for Spiritual Counseling. I have had a private practice, taught workshops and classes in intuitive and healing arts since 1990. I have advertised, promoted myself and done all the things one does to build a practice. Like trying to slow a freight train, the information that I have closed my practice takes much longer to slow down than it did to start up. Because I am still trying to find the right way to answer why I can no longer see clients I have tried the following reasons:
Closing my practice and getting disability was not my first choice, but referring to answer #2: There is a high likelihood that even if I could get dressed for an appointment, I just might faint, covered with sweat, part way through the session. Oh, and I would have to push my little “She has fallen and can’t get up” button. I gave applying for disability a try; after all as a sole proprietor I had diligently paid into the system. And they promptly turned me down. What?! Oh yes, I remember now. Several years ago, when I actually had this fast tracked disease but had not been diagnosed, I applied for disability. After careful consideration the judge noted that I had listed my profession as a “Spiritual Healer and Teacher”, which to him seemed down right suspicious. He announced that I must really be a psychic, and everyone knows that a psychic’s job is to fool people. So he threw out my testimony, and any testimony based on what I had told my doctors. I must be amazing because I apparently have fooled all my doctors into thinking I am actually sick. This was all explained to me by a Social Security agent, that because of that decision I was not eligible for disability, but wait! The good news is I can apply for my regular Social Security when I turn 62, in two years. Note the irony here. So here is the part where I complain that one very incompetent doctor in Seattle decided to take me off all my medications to see if any of those could be the cause of my symptoms. It took a month to titrate off them all. Over the six years I have been looking for a reason for what I called my “fainting goat syndrome” doctors have ordered many tests and tried all sorts of medications. Some of those actually helped. Why you ask would this doctor think the medications, or my heart, or whatever else he could think of, would be causing the symptoms of Atypical Parkinson’s Multiple Systems Atrophy? HE HAD NOT READ MY CHART AND HAD NO IDEA THAT I EVEN HAD A DIAGNOSIS. (Yes, I am aware that all caps equal a rant.) So, let’s figure this out; two days of Chuck needing to take off from work, two trips to Seattle, two appointments to a doctor I was referred to by the neurologist, my wise and brave decision not to follow through with the two days of testing at Swedish to check to see if this could all be my heart (not the first dog and pony show with that, and every time the same tests show it is not my heart) and a month of a “drug vacation” from medications that actually were helping me. Yep, I am coughing and choking, hurting, not sleeping, depressed, experiencing flair up of my Irritable Bowel Syndrome because he did not read my chart. Now how much did those appointments cost? So tomorrow it is another day off work for Chuck, a drive to Seattle and an appointment with my neurologist to most likely figure out a plan to titrate back on the medications I just went off. No moral lesson in this post, I will end with assistance from Sister Mary Margaret’s special autocorrect, that duckin’ double duck everything, and tomorrow is another duckin’ day. As of this posting I have given up the fantasy of someone reading from my blog or journal at my memorial service. Some lovely prayer or thought I carefully transcribed as part of my journey, so sweet and insightful.
I have officially moved into the no-more-nice-girl part of my process. I swore up a storm, proclaimed my doctors to be all jerks, and that there was no reason to go to physical therapy or to the YMCA to build up my endurance for some sort of triathlon death march. I have vacillated between crying at a video showing the back of a bus carrying the Sea Hawks to the airport, to posting a harsh criticism of a local florist’s misuse of the term “topiary” on Facebook. I tried really hard to share how I was feeling in an e-mail to my friend Dolly Mae, to become even more enraged that somehow Sister Mary Margaret has gained control of my spell check. My deluge went like this: Duck all of this – those ducking duck duck… I have held this picture that each symptom comes with its own gift, yet to be unwrapped. I am still waiting for the big a-ha that will come, on why having a cold or being stressed over needless medical tests, caused me to lose the privilege of big girl panties, only to regain my pantie prize as I started to feel better and figured out I could just say no to testing. I will leave out the too obvious about just being pissed. One of my “gifts” that await the gem that will come is one called “emotional incontinence”. I pried open the lid for a quick peek. Of course it was filled with ducking duck duck duck. Oh, by the way, I will be interviewed on Hay House Radio on Friday at 1pm. It is supposed to be about my book, Letters to Anna, but it ended up a real duck fest. I will download the interview to my webpage so you can listen in. Life is good! Some years ago, in a time of magic much like now, I lived in a house that was near a lake. I was a young mother then with a toddler and a preschooler. As I worked around the house on a particularly beautiful spring day, I heard a strange sound coming from outside. I went to the front door and there on the stoop stood a duck. Although to my knowledge I had never actually conversed with a duck, there I was. Her quacking and clucking gave way to understanding of why she was there. She expressed her displeasure for having to seek out human help, but a stronger interspecies tie of motherhood had drawn us together. At her urging I followed her around to the back of the house. "See, there they are!", mother duck exclaimed. "I don't know how this happened!", she said, "they were with me one moment, and the next, well, there they are!" Sure enough, there they were all right, ten little ducklings, squawking and hopping madly, stuck down in the crawl space beside the house. By this time quite a crowd was gathering. Children from all over the neighborhood rushed to the scene, all wanting to see the baby ducklings up close. This further flustered momma duck, and I shooed the children back to the fence to watch from a respectful distance. The children thought nothing of me conversing out loud with a duck, perfectly natural. There was a busy street between our house and the lake. I was afraid if I just took the ducklings out they would never make it across the road. "I'm going for a box", I told the momma duck. Returning with a box from the garage, I carefully picked up each baby and placed them into the box. The babies yelled "momma!", and momma yelled back "It's all right, she's trying to help!" "OK, they are in the box, now show me were to go", I said. Momma duck was off, first flying, then walking directly in front of me, quacking out "this way!", and "just a little farther", and exclaiming that we would be there now if only I could fly. Down the street in procession we went, momma duck, me with the box full of squeaking babies, and the whole group of children, both walking and on tricycles singing "We’re taking the babies home!" As we all carefully crossed the street and headed up the grassy hill leading to the lake, momma duck told me this was far enough. I put the box down and tipped it over so the baby ducks could hop out. They all ran straight to their mother, where she kissed and scolded them saying, "now stay close, don't wander about!" And off they went, momma duck leading the way and all the ducklings in a line behind her. The children and I watched as they disappeared down the hill. We turned and headed back for home when there above our heads circled mamma duck! "Thank you! thank you!" and off she flew to rejoin her babies. Spring surrounds us now. The promise of renewal unfolds around us. This is a time to breath deeply, become aware of the small details in nature and rejoice in relationships with others, even those who appear quite different from us. Spring is the time to open our hearts wide, and honor Spirit flowing through everything, connecting us in a way so even humans and ducks can speak to each other. We are all one. May you be still enough inside to hear a duck at your door. Blessings. Cathy Pfeil |
Cathy Pfeil
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December 2019
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