changes

I suppose it's time for a new post. I don't want to write anything else on hearing, but unfortunately it is my new reality. I'm beginning to understanding how much a small change in the body can create big changes on how life is lived and perceived. I've never had a handicap before, and I'm sure as the world goes, this is nothing. I'm learning how to live in a world that sounds different to me now. It's hard to believe how exhausting a lack of hearing is. Isn't that weird? It's hard to be in public. I can't take anything for granted. I'm not sure if what I'm hearing is accurate. The distortion of sound makes it so hard to tolerate being in ordinary places where there are lots of people, like the grocery store, a mall, the driver license center. I'm looking forward to having an MRI done.

A small change...it has sapped my energy and taken away my enthusiasm for ministry. I can't stand difficulties, people arguing, things that don't just work out. My patience is extremely limited. I don't have a normal appetite because I'm taking prednisone. I'm tired and have to nap after doing easy errands.

This isn't a litany of complaints (could have fooled you!!). It's things I'm learning I've taken so much for granted. Simple things. Things that were nothing to me. They aren't nothing any more. What if I was in a wheelchair? Continually forced to sign, to write notes, to live without hearing at all? What if I didn't have all my limbs? So many things can separate us from the "ordinary" world. I seek the quiet, activities that don't involve sound. I guess it works for me, being that I love to paint and draw, and write. Where is this coming to? I have to fight for what I have never had to before. Will things change? They already have.

on hearing, finale

It's early Wednesday morning, and I'm reflecting over my Tuesday. I went to an ENT specialist who pronounced a diagnosis for my sudden, profound hearing loss in the left ear. I have a sudden, profound hearing loss in the left ear. He told me it's an actual syndrome. Something went wrong in the inner ear, something that probably cannot be pinpointed, though I'm being tested to rule out lyme disease, venereal disease or a problem with my brain. I have to tell you, hearing that was rather disconcerting, though I knew if it was not an outer ear problem, there's only one direction to go. It was lonely sitting in a sound-proof booth with headphones on, knowing as the seconds went by with no beeps sounding in the left ear, it's bad. I'm functionally deaf in that ear.

So the doc and I sat at a table and discussed the problem and treatment options. The aforementioned testing needs to be done. I'm going for bloodwork tomorrow and an MRI on Saturday. The only medication proven to help in 2/3 of cases is the steriod prednizone. There is a 30% chance I will never regain my hearing. I looked around the incredibly busy office, with folks coming and going, a woman on a cell complaining about the wait, the endless drone of talk shows on a constantly running tv, the women in the cube anwering phones, pulling charts, talking to patients, a jumble of meaningless sound with loud punctuations, and I felt the wind of my competence knocked out of me. I had to get away from the sound. I needed silence so much. I needed to be alone.

I cried first, and sat in my car for some time, not moving. Then I just had to. The tears didn't end for a few miles, but it was time to hit the gas and spring into action. I had prescriptions to fill, phone calls to make, e-mails to send out and ear plugs to buy. I need them to be in public. I took my daughter to see her man, Johnny Depp, in the latest Pirates installation, and would never have stood the yo, ho, ho's without a plug in left ear to stop distortion of sound that loud. I guess I did the Sue equivalent of getting a make-over and buying new clothes to chase the blues-I went to Lowes and bought stuff for my studio and the house. I did about $300.00 in damages. Ok, that made me feel a little better, but is not a good long range plan for coping! It all looks great, BTW.

The depression, the whys, the uncertainty, will not end in a day. The prednizone may or may not work. I might get better, I could get worse. I can still hear. I sat down to my keyboard, tentatively and fearfully, wondering how well I could hear myself still play and sing. It's a tad muffled, but I can hear the music, praise God. I also shared with two praying friends about a heroine of mine, Joni Earickson Tada, who was left a quadriplegic after a diving accident. She learned to draw with her mouth and what remained of working shoulder and upper arm muscles. She was 17, beautiful and athletic, but at the time a ship without a rudder. She prayed for direction and shortly after dove into a too-shallow body of water. Joni is now middle-aged, an unprecedented life lived for the glory of God in the midst of suffering. May I do as well. The story is not over.

on hearing, part three

It is early Monday morning, in which I woke up from a fitful and sweat-laden sleep. I came downstairs to the computer and a cup of Starbucks, and to pray. The amalgamation of thought, prayer and computer exploration, plus the memory of my Sunday, continues on hearing. Sunday dawned one of those perfect, spectacular, early summer days, humid and sunny, but not too, full of fresh trimmed lawns and fiercely blooming flowers. I woke feeling a little better and took my morning walk. The bird trills were not as distorted and reminiscent of breaking glass in my left ear, but still did not register properly. Yet I felt buoyed and wanted to attempt church. So off we went. We were late, but found seating, and came in to midst of a crackly reading of announcements, and to worship. I tried. We started off with America, the Beautiful, and continued with some real favorites. But as every note passed, the sounds became more and more crumpled and sharp in my ears. It took all I had to stay and concentrate on what was being sung, which normally is one of the most enjoyable experiences in the week. I quickly exited when the last note was sung after a good sermon, exhausted.

The day remained a beauty, but my mood and mind only registered the gathering clouds of depression and doubt. My usually sunny daughter was not in a good mood either, and that made it so much worse. A call from my mother-in-law requesting a joint visit to the grocery store sort of capped it all, like fake fingernails on a chalkboard. I told her I'd call her back. I tried to sleep, but found no relief at all. Then I remembered something my 12 step sponsor told me after my fourth-work on honoring the roles of mother and father to find healing. So I called my MIL back and agreed to take her without complaint as an expression of honoring your mother. I further considered this and realized, I'm not honoring my Father in this, either. My focus has been all on myself, my suffering, what I need, what I want, my own faithlessness. I know I have a legitimate right to feel all of that, but then it hit me-I'm doubting His love. That is the greatest dishonor to His title, the title scripture says every earthly father derives his from. As the day wore on, I continued to consider this, realizing I had basically dissed my doctor's course of action, gotten somewhat upset because I was prevented by two chaplains from doing what they felt was too much in the prison-I have not honored authority over me. That didn't cause my lack of hearing, but my lack of hearing revealed a deeper lack. The sermon was on Moses, and his rash action trying to rescue his people before God was ready to. It was disastrous. I also realized I doubted my husband's regard for my situation and continually harbored a bad attitude all weekend.

So back to tonight. I woke once again realizing my prayer life and reading have been paltry lately. If you really love someone, you'll do what they ask. I went on the computer and ordered some books to help me consider the human condition and God's workings, Dag Hammarskjold's Markings, and a contemplative read. In the midst of my search I came across atheist Christopher Hutchinson and one of his books trying to discredit faith and religion. As I read the reviews of his book, I realized this man fails in his attempt simply because he does not even entertain the reality of faith at all, nor that there might actually exist a loving God. To read this made every instinct inside counter with what I know to be true. A friend sent me examples of British chalk artist Julian Beever's incredible illusionistic works drawn on sidewalks. They appear so real, people on the street actually walked around illustrated holes in the ground. It looked true, but in fact if someone had stepped on the drawing, they would realize it's a fake, an illusion. My prayer was an attempt to "step on the drawing", the drawing of life as a meaningless exercise in futility, not proceeding from anything other than protoplasm and back again. To me that is the illusion, and a very dangerous one. Life has meaning, tremendous meaning, suffering has purpose, love does truly conquer all. To assume it does not takes more faith than I possess. So my ears aren't that much of a problem after all. Oh, my daughter noticed my distress about the grocery store and volunteered to accompany me.

on hearing, part 2

I'm day four into not being able to hear out of my left ear. I can tell you this, it's exhausting. Being robbed of a sense, or the owner of a distorted one that causes continue static and white noise to the brain, is intolerably nerve-wracking. I'm cursing that overly-cautious "not my family" physician for not giving me a course of antibiotics immediately, because I'm also starting to feel poorly and very tired. I had my carotid scan done yesterday and was told if something was life-threatening or serious, my doctor would be called immediately. So I guess there's no danger of my ears or arteries blowing up. I suspect I'm sick and the sickness manifested itself somewhere deep in the sinuses. The ears were just a weird and atypical starting point. So it appears that possible a garden variety sickness will be costing me 5 days of misery and hundreds of dollars if I do have a hearing test and exam done by a specialist who is not on our insurance provider list. If you think you are going deaf, what's a couple hundred dollars anyway?

Still I'm not sure, and that is what bugs me. It bugs me further that it happened on a holiday weekend. It was so difficult in the prison this morning. The place was so packed out we couldn't keep an eye on everyone all at one time, and the undercurrent of chatter plus an air-conditioning system strained my hearing to the max. I tried to participate, and then come home to a busy day. But I wound up on the couch after planting flowers. I wanted to do so much more than that, and if tomorrow and Monday aren't better, I guess I needed a rest and this was the only way to slow me down.

I have little patience with this, and perhaps that's the lesson. I think of friends I've known for years, since they were my age, now who suffer with old age pain and conditions that aren't going away. I should be better, if not in a few days, hopefully by next weekend. But I can't imagine not being better, or getting worse. I just can't imagine it. The noise of being at Friday's Celebrate Recovery meeting was almost impossible to sit through, and I love those meetings. I got a break from doing the music, which was fortuitious because I couldn't have anyway. I couldn't hear myself sing. I think of our Serenity Prayer, which I prayed twice in as many days, "God, grant me the serenity to accept the things I cannot change (even temporarily!)..."

on hearing

An odd thing has happened to me, totally unexpected and without apparent factors or symptoms leading up to it. My left ear to a great degree, and my right a little, are blocked to the point I have significant hearing loss in the left. When I walked into work yesterday, it felt someone stuck two balloons in my ears. I had been having pulsing in the left for several days, but no sinus issues, no swimming, no cold symptoms...nothing. No pain, thankfully, or maybe not so thankfully. If there were pain it probably would have been the routine ear infection I suspected. It seems the worst words you can ever hear from a doctor are, "I can't help you". In my case, that was followed by, "we'll schedule you for a carotid artery ultrasound, and give you the number of a specialist". The end result is, I can't hear like I used to.

Being the drama queen that I am, I imagined the silent movie reel worst case scenarios a fearful mind can dream up. I go completely deaf and have to learn sign language and carry a little note pad with me everywhere, hastily scribbling my witticisms to the rest of the hearing world. I need life-saving surgery and lie on a bed with an angelic countenance, telling everyone goodbye if I don't pull through. I suffer for the rest of my life with pulsing and ringing in the ears in sainted martyrdom. Why is it that I have a hard time immediately grasping with my faith muscles, believing in a good outcome, certain that whatever comes God knows and is in this, and I will come out a better person?

I'm not experiencing unhinged fear, just the controlled and "constantly reminded something may be totally wrong" sort. I can go through my daily routine, but the bothersome sensations and anticipation of bad news chains both feet. I have to get back to hearing of the spiritual kind, and listen intently. Nothing can stop my inner hearing except concentrating way too much on the outward. I'm trying not to. And I find I must follow the advice I just wrote to two separate people-experience all the emotions connected with an issue honestly, and then surrender everything to God, and, healing is a responsibility. What do I really need here (hear?)

prize fight

The book I'm reading now is one that came out in the 60's with a host of others dealing with the subject of mental illness, drug addiction and suicide, formerly taboo subjects, especially involving younger people. I read "Go Ask Alice", "Lisa Bright and Dark", and several others while in high school, but "I Never Promised You a Rose Garden" was one I did not read until now. What a shattering revelation. I must assume the author either fought the battle of mental illness the young woman in the book did or knew someone who did. There were so many things that stood out to me immediately as I read and continue to read. One is, that people who fight this fight, far from being weak or lacking in courage, are the most courageous and the strongest individuals on the face of the planet. It's like living in a mental boxing ring, just trying to keep on your feet in the midst of life, with punches from overbearing emotions, deep fears and confused mental processes hammering away, voices calling that don't belong, every change a fierce and furious struggle to work through. For the ones who have fought these battles ceaselessly and keep getting up, I want to be there to help you stand. I see it in the prison, peeking out from addictions and the inability to separate fantasy from reality.

For myself, it has taken a lifetime of "getting up" and purposely choosing difficult battles to finally learn how to separate out the voices that don't belong, to understand I'm a worthy human being apart from anything I do or what other people think of me, and to finally overcome living my whole life based on the expectations of others. No one can tell me what I need to be but me. How often I heard, why don't you play with other children, why do you spend so much time alone, why can't you be like......fill in the blank. I need to be alone sometimes. Let me decide that. I'm just starting to understand what needs are true and what needs spring from things that aren't real.

I don't know where I'll wind up, but I do know I can live my life with integrity, and further, there's a reason for the suffering and struggle. Those who never struggle will never really be sure of themselves. If what I have been through helps one other person in life to make it, and if that person happens to even be me, I'm glad to be who I am.

back to school?

It's strange how things work out. I have a possible job opportunity that requires me to go back to school to get a bachelor's degree. I just need the piece of paper, and would not thought of going back had this opportunity not come up. I've been questioning friends and praying it over, and it looks like I'm going to shoot for a degree in psychology. I also would never have thought of that field, until now. Further, another friend asked me if I had read a particular book, which deals with a young girl's fight out of madness. As I am reading this book, I begin to recognize patterns of behavior and thought that are not unfamiliar. I read things I've experienced, though not on the same level, and things my son has experienced. I already think like a person in the field and who has suffered struggles with borderline emotional and mental issues.

I'm nervous about getting into something that could be such a huge commitment, but something deeper inside tells me I need to. My personality and giftings run so powerfully in this direction. Being that I already have a job possibility, that is not the first concern, and it would have been had that not been the case. What is happening here?

If confirmation is happening, I need to pursue it. I thought for sure my art was my destiny. It is part of that, but not the whole picture. I can't even see more than a few lines right now. But that's the way faith is. Pursuing begins to make the invisible visible. So I guess it's back to school (again).

visitation vivisection

We travelled to Somerset yesterday. As ready as I was to see Brandon and as calm as I could be, it still was hard. I guess the talk of bearing crosses in life applies no matter how much I want this. I can never escape the niggling unease of it all, the wrongness, the "this isn't how it was supposed to go", the interruptness of it all. I wanted to peace, I prayed for peace. Other people prayed for peace for me, and there were shining nuggets in the dirt. We got photos taken by a new machine that was installed in the dayroom, and much giggling and silliness happened trying to quickly pose the group of myself, my husband, my mother-in-law, daughter #2 and Bran in the few minutes you had before the shutter snapped automatically. I love watching Brandon swing into conversation that invariably includes hilarious impersonations, asides, quick jokes and family intimacies-he's like a missing puzzle piece in the picture of our lives, and he fits right back into place when we're together. I know it's also true for the families around us sharing hugs and sodas, playing games and trying to suspend the awful reality for just a few hours.

My thoughts rambled and rattled as we clattered home over highways and through small towns on the way home. They rolled slowly up the emotional rollercoaster and flew down without any control, swinging wildly from one thing to another, in and out of dazed sleep and jolts of wide-awakeness. I had to shake myself into the oncoming present of being home again without him, dealing with the things I had to put on hold as we planned to go and spend the day. The interruption ceased and life was flowing back in the faster we wheeled down the exit ramp to route 11.

We got another letter from Bran before we came, and I suppose I'll include a few snippets as I'm here in front of the computer screen, back home again and trying to stumble through my Saturday with some coherence. I just got home from the local prison and my Saturday ladies. I remind myself that without Brandon I wouldn't have my "Saturdaisies", and my partner's comment as we left them, "I feel so good after we've been here". So do I.

Here's Bran: "This week, Monty Python and the Holy Grail was on our movie channel. It's been a couple of years since I've seen it last. I made sure to catch my favorite parts, The Knights of Ne, the rabbit at the cave (Run away! Run away!), and Lancelot's assault on the wedding. Ok, the whole thing's my favorite part. I laughed until there was pain."

"I got a letter from Ma and Becky the other day. I sort of cocked my head at the idea of pierogies at a Cajun joint. I'd probably be thinking the same thing: "well, I know these
are safe." (Pierogies are a Polish dumpling found locally in NEPA , not generally served in Cajun restaurants in Philadelphia-Sue) There was followed up by a curious story of a far-away land of mythical tiny pants. Very strange. One of the few times I was in New York ("New Jork" depending on who you talk to) I saw a guy caught in traffic bolt out of his running car and grab a hot dog. Since, I've wondered about the killing I could make selling fast-food to people in traffic jams. I'm tellin' ya, a motorcycle with a broiler side-care=genius!"

That's my boy!

Mother's Day

Mother's Day was yesterday. There were alot of feelings going through my heart all weekend. I miss Brandon. I've done well for the past few months, but it has been almost two months since we could visit him, and I feel his absence so much. I went into the local prison on Saturday to help with the female inmate 12 step program, and my partner could not stay. I was already hurting inside and tired, and was relying on her to run things. But that did not happen, and 18 women came down. Somehow I was not afraid. The presence of God was there, and I felt nowhere was I functioning more as a mother than in this lonely place. It was an odd turn of events and suddenly I realized this is where I needed to be.

The night prior was prom and my youngest daughter was gone all day Saturday with friends. We had planned to go to dinner Saturday night instead of Sunday, and I didn't want to go without Becky, but the hours went by and she didn't check in and didn't check in. My heart began to sink at the prospect of having dinner without her. Finally a call came and I felt much better, but realized how much my emotional life revolves around my children, present or absent. Beck and I spent several hours on Sunday together, for which I was glad, because while she's not a disobedient kid, she's very social and rarely stays home.

Sunday was quiet again after our time together and dinner, and I stayed in by myself to watch tv. I watched the old black and white movie, "I Remember Momma". I guess I needed a good cry. It was sort of painful to watch an intact family, mother, father, sisters and a brother, interacting in a normal fashion, loving each other, being sensitive and celebrating each other's lives. I scarcely remember any such thing. My own mother is long dead. My dad is gone. My girls are flying the nest and my son is in prison. I suppose even among the most fractured situations the spirit of family prevails. I did see myself in the mother and the eldest daughter in this movie. I spoke with my first-born after the movie and somehow the day seemed to end in peace. The human family, God's plan, always finds a way.

neverending, cont.

I kept the last post up for a week because I can't get away from the thought process. Something else that love is, and I'm not good at, is honest. It isn't afraid to get angry, to demand, to tell the other person true feelings, fears and things that may not be the most comfortable. It is rooted in trust, and the to the degree we trust, we truly love.

I guess I realized this when I got angry at my son for something he wrote, got angry at another dear friend for something HE wrote, was grieving over another situation and something else another close friend wrote. When I think of love, I think of warm fuzzies. But my son joked in a letter, he would have sent a Mother's Day card, but all the commissary had were cards that said "Sorry For Your Loss". At first blush it was a joke. But something inside stung, hurt and then made me furious. I understand why my son did it, and it was funny at a certain level. But I cannot hide the pain I feel at our separation, and I've been especially feeling it these past weeks again. A friend wrote a blog that deeply convicted me on a level I did not want exposed. He didn't aim it at me, but it hit the mark and stuck. I guess a stranger may have done the same, but a friend hits alot closer to home every time. A situation I'm dealing with regarding another individual is causing me great pain, not because I don't care, but because I care so much. Circumstances have dictated that this will be something only enjoyed at a distance and admittedly I want more. I feel useless and frustrated, angry at my inability to control the pain, wanting to be mature and understanding, but not there yet.

Why do we spend so much time over something that can potentially cause so much pain? To love is to invite pain, period. Pain is the sign of a healthy body and a functioning immune system. The contrast of pain to well-being signals the body's need for care. I have to remember that. I'm a healthy individual if I experience pain. And in time, and in healing, love finds it's true path.

the neverending story

I'm wondering today, what does love require? I hear and read the word so often I'm not sure I know exactly, or maybe I think I do and then a relationship comes along that makes me question myself. I want to love. I need be loved. Everyone needs it. The scripture say God is love. Love is a Many Splendored Thing, Love is the Answer, All You Need is Love, Where is Love?, I Will Always Love You....what is it, how do we get it, how to we give it? I don't know sometimes.

I think about everything that has transpired in the last week and about the people I spent my time with. Many of the relationships I'm involved in now are relatively new, but I have older ones, too. I spent time with someone who has become a dear friend and 12 step sponsor. She probably knows more about me than most folks, and is willing to give her precious time to me just to listen. I write to a childhood friend I've known for years. Our relationship has changed over the course, but we seemed to have returned to the bliss of childhood as our children are now grown and we've become hopefully a little less uptight. I spent time with my youngest daughter making a duct tape prom dress and being her body guard while she took photos in a junkyard for her art class project. I met with a business client and talked about her inlaws, of whom I painted a portrait. I returned to a beloved instructor to visit and talk, and realized how much I've changed since he taught me to paint. On the same day I shook hands with an extremely gifted, up and coming artist from whom I bought a gorgeous painting. I hope to get to know him better and encourage the gift. I received a treasured letter and heart-melting card from someone who has become a most dear companion in just 8 months. I spent time with CR friends and was packed in a van with six of those great brothers going to a seminar in Philly on Saturday. (Of course I wanted wring necks after I stumbled out 13 hours later!). I grabbed moments with my husband while navigating all these comings and goings, as only a long-married couple can.

What are some of the earmarks of this four letter word, which is that to us as often as it is bliss. It isn't an emotion. It generates emotion, but real love is a choice. It's a choice to value people. It is given and received between two. We are to love ourselves, but that command is given in the context of loving our neighbor as...the highest form of love is unconditional. It requires nothing in return and does not diminish the giver to pour it out. I have to say, this kind of love requires God. I cannot love without His love poured into me first. That isn't a nice sentiment. It's the bold-faced truth, because I choose as often not to love. Scripture also says, we love because He first loved us. Yes. Love bears in mind the highest purpose for the beloved and acts accordingly. It can mean we face deep hurts, terrible separations, loss, heartbreak, unfulfilled desires. But I've reached the conclusion that I'd rather face all of that than to walk away untouched by such a beauty. One Man did that and wound up ripped to shreds on a cross. But that is never the end of the story.

performance art

I find myself wondering why the approval of others is so important to me. I'm not sure I entirely know the answer to that question, though working through co-dependency issues circles back to why I'm motivated to behave in certain ways, and that is a large part of it, or used to be. I need the pats on the back, the "good job", but is that why I do what I do? It has taken me a conscious and focused effort to be released from what scripture calls "the approval of men". Yes, I surely need some indication that I'm doing well or making other people happy if that is my intention. But my own path cannot be guided by the way others react to what I do or don't do for them.

It has been hard at times, really hard. I feel empty if I'm not doing. Doing for someone else, that is. Why can't I be content to do for God and myself? Much of my growing up experience taught me that good performance makes people happy and is rewarded. Causing problems, questioning the status quo, refusal to perform for it's own sake, not getting the grade just to get the grade-those things are bad because they cause other people to be disturbed or angry.

Over the past few weeks I've gotten honors and accolades for my artwork that in the past would have served as a tangible proof or reason for doing the type of work that I do. I have had to be willing to release the desire for awards and shows in order to give myself time to grow and learn. Admittedly, nothing makes me happier than getting an accept notice in the mail. I love that, absolutely love it. But it's a hollow thing if the effort is directed at receiving the piece of mail and not at putting together a body of work that consisently reflects my own creative spirit and character. I also did a double portrait this week that I think did reflect that. Not everyone will care for the expression or style. But I see growth in my painting.

It's harder still when it comes down to relationships. How do you love and regard someone and not get tangled up in trying to hold on to them with stuff? True maturity and trust in a relationship doesn't require that, but I often grieve for the passionate desire to please and care that seems to burn off and disappear into a friendship when it deepens. I feel almost resigned, and yet at the same time, how wonderful to not be a slave to another human being or make them feel suffocated by your own apparent needs-which really aren't that at all. It's like needing to throw away what attracts you to another person in the first place to let it be real.

It's taking time to get used to this. We're so conditioned by our culture to be performance oriented. It is taking me time to accept the idea that I don't have to. I can choose to, but if performance to someone else's tune is what is needed to be successful or loved, it really isn't worth the dance.