Out of Suffering

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I woke from a sound sleep. I was in pain. It was too familiar. I knew what it was yet in my thought process I needed to invent a myriad of other possibilities hoping it would disappear or morph into something more manageable. And by morning I was thinking I could deal with this level of discomfort if this was as bad as it was going to get. In hindsight, my tolerance and threshold for pain in all its forms seems to be limitless because I’m still here. Growing. Engrafting. Being.

I had things to do. I had to get my roots done and get my daughter to her piano lesson. Those were the essentials and pretty much all that was accomplished that day. It’s hard to remember now. I think my fever coma eradicated a lot of connections and memory. Or maybe the fuzziness is from head trauma since I passed out?

The pain, it was not leaving, it was deepening; reminding me I wasn’t getting off easily. Having another kidney stone journeying through my ureter uninvited and unwelcomed wasn’t something I could manage on my own. I relented in fear. I wasn’t afraid of the pain. I was familiar with what that felt like and knew what it would do to me. I was mentally pacing myself for the process. My issue was not having insurance. I’m not stupid. Stubborn? Yes. Is this where I should plug in don’t judge me?

I stopped carrying insurance because I was paying over six grand a year and not using it. Essentially throwing money away. My alimony income is finite hence the push to get as credentialed as I can because I’m going to be sitting across from some thirty something telling him or her how valuable my life experience is to them and that they should hire me even though the last time I signed a paycheck was when Reagan was in office.  I’m reasonably fit and make effort to maintain my health. I had minimal “coverage” through my undergrad school as a student, but that expired with graduation. So technically I’ve only been without medical insurance since June. I will be on my grad school’s required coverage in a matter of days so it wasn’t complete negligence on my part; more of just the way my life tends to unfold.

By day three, a Friday, I was getting anxious. In the medical and business world the weekend is not a good time to seek treatment. I knew I could play the system by going to the ER. They have to treat you even without insurance. But I knew I needed a CT scan before anyone was going to deal with me. I wanted to be treated with some amount of dignity I knew was absent in the ER of most major hospitals. So I surrendered to my circumstances and I texted my Urologist. That may come off as a minimalistic no brainer to you but for me, it took a lot of courage. I started out apologetically by saying I hoped I wasn’t interfering in a vacation or something, but was pretty sure the stones were active and that I was trying to discern whether or not I needed to be seen. I’m still suffering from put yourself last syndrome and I don’t want to bother anyoneitis. As it turned out, she was in the Caribbean.

In my August 2005 kidney stone attack I was rushed by ambulance to the hospital. By then I’d already endured several hours of agony, had turned blue, passed out and I don’t really know what else happened. This was after my morning run and my Kashi breakfast. So not fair. It was a rapid onset and yes as they say the pain was worse than childbirth because kidney stone pain is relentless. It doesn’t rise and fall and let you catch your breath. There is no reward at the end that makes the effort expended worthwhile. For me it was not knowing what was wrong with me that made the anxiety as consuming as the pain.

They told me my stone was a big one, a centimeter and not likely nor advisable to pass. I had Ureteroscopy surgery to break up the mass. It wasn’t completely successful so I had to be scheduled for lithotripsy surgery. I left with a stent in and the lovely little apparatus to strain your urine through. I was somewhat uncomfortable from what I remember. I was still bleeding from somewhere and doubled over in pain while at the Rolling Stones Concert that same day I’d been discharged. We had 9th row seats. That’s something you don’t pass up. I didn’t make it through the entire show. I was more concerned about being vulnerable to jabs and shoves if the crowd erupted into a mosh pit. I had the lithotripsy surgery two days later. My urologist was good to me and took out the stent on her day off because true to form, my schedule didn’t allow for illness or down time. I was starting Massage Therapy School and could not take the time off.

So here I am eight years later. I’ve been home for a week after my healthy vacation with family, which consisted of exercise, good nutrition and rest. I’m anticipating the start of grad school and wanting to tie up a thousand loose ends and then~whammo. I’m forced to put life on hold, a hostage in my own body. Only now, I’m both divorced and widowed, insuranceless and friendless, living on my homestead, climbing out of a black hole from several years of trials and loss. I don’t live in an estate anymore, I don’t have the army of support I had then. And I’m removed from civilization.

As the day progressed I knew I needed to take action. I made an appointment with the Urology group. I had to see the doctor who was on duty. I needed a CT scan and was able have that done in the same building. I had to decide which credit card I was going to put it on. $900, plus the office visit fee. My cortisol level was climbing because I am just a couple more months from being on task with paying off debt and it seems like there is always something to derail that goal. I mean I’ve gone to great lengths to save where I can. I stretch out my root job appointments and commit chemical malpractice on my hair to save money.

I was getting ready to leave for the appointment with my arsenal of credit cards in hand when I got a call on my land-line. I rarely if ever answer that because the only people who call on it are business related. I only have it for my security system. But for some reason in the middle of my turmoil I felt I needed to answer it. That was confirmed when I heard the caller ID say North Carolina. My mom lives in NC. I could feel my pulse quicken and my throat tense.

But it was my step-father. He went through the polite formality of hello while we both knew he needed to get to the punch. We don’t talk or call each other… unless. I asked what was wrong. There’s something that happens as soon as you know your loved one isn’t dead. You immediately muster the resolve to brace yourself for what you don’t want to hear because you know what’s to  follow is still bad.

Hearing my mom suffered a heart attack and stroke and was paralyzed made me envision her as one of the many patients I worked with in nursing homes. One of the bitchy nasty hostile ones who would scratch me and try to smear their feces on me. Her carotid artery is 98% blocked. She is a ticking though erratic, time bomb. I know full well what her future may look like. A part of me will have to deal with the reality that my mom, who has never been here for me, will be even less available now. My pollyanna dream of some sort of reconciliation or semblance of a relationship is shot. I hung up and tried to pull myself together and shrug it off since that is a battle I surrendered to a long time ago, or so I had thought.

The flood of tears came. I couldn’t hold them back. My first thought was that I couldn’t even call anyone because no one cares about her. My two brothers hate her. I wouldn’t know how to reach them anyway but that wasn’t the issue today. She has no relationship with any of her living siblings. And my cousin, who she once took in, has no love loss for her either. I’m it for my mom.

In radiology I waited in the overcrowded waiting room trying to be grateful because I was discounted a percentage for paying up front. My radiologist was real. I could tell because I was able to pick up on her energy. I spilled my reader’s digest version of my scenario and asked her if she could shoot my ovaries too while she was at it because after eight pregnancies I know they are in revolt.  I’m certain my uterus is on strike as well. I suspect ovarian cancer, but that’s for another story. I was grateful to have an authentic exchange with a real person amidst the craziness of my life. It gave me hope to continue on and go upstairs.

In the Urologist office upstairs every socio-economic demographic of class was represented in the waiting room. There was a sweet man in a wheel chair with an aide waiting for a transport company to take him to what I assumed was some sort of home. I was preoccupied with what his life might be like. He stood out to me. His warmth and his positive energy struck me. He was probably someone often overlooked by many. He was so personable and intent on making contact with everyone. He included me in his chit-chat with the other patients. When I pulled away by taking out a book he commented that I must like to read. He did too.

The doctor on duty told me that I was indeed passing another stone. This one was about 5 mm. He said I was scheduled for surgery on Monday and I’d need blood work done down the hall. I interjected with my questions. Wasn’t there something I could do at home, what if I could pass it? He said the stone still had a long way to go. He handed me a packet with a few pills in it and said he didn’t want me to get an infection. There were no labels or instructions for dispensing them. He exited saying if the pain subsided I should call early Monday to cancel but I might need lithotripsy as well so I should keep my schedule open.

I was supposed to go sailing Tuesday and Wednesday.

In the middle of my melt down in my car in the parking lot I got a call from the surgery scheduling people at the hospital. The woman was very empathic. Someone from the Urology office must have warned her about my emotional overload because she knew about my mom. Then she dropped the bomb. Didn’t anyone tell me I needed to have someone pick me up from surgery? I thought I’d be  able to drive myself there and back. I could get a cab there but that wouldn’t fly for the ride home. That was when bitter reality set in. I live in a rural area that everyone else considers the boon docks, so far away. I don’t have family close by. My cousin just moved out of state. I don’t have close friends. I have acquaintances but no one I felt comfortable enough to ask, “Hey would you mind ripping up your Monday commute to head to Hartford and then out by the airport and sign off responsibility for me after you’ve worked all day just to bring me home?” No I couldn’t do that. I don’t have that luxury anymore. My divorce extinguished those who I thought were my friends. My relationship with my now deceased fiancé and subsequent move finished off the others. Of my life-long friendships, one I let go of because it was a toxic relationship. My last surviving friend is literally that. She is now living with emphysema and on oxygen. I couldn’t ask her either.

I felt like my mother. That’s the worst possible thing in my world. In black and white my situation looks a lot like hers from the outside. She is a woman with no friends who isolated herself and pretty much said F… Y.. to the world, I don’t need you. In contrast I don’t know anyone who hates me, and contrary to her lifestyle, I have tried to maintain the relationships that matter, yet my circumstances mirror hers too closely for my liking.

People loathe her. I know who she is, who she isn’t and who she was, but I still hold out respect for people just because they are human. We are all fallible. She is my mother. I don’t feel like she did much mothering with my brothers or me, but I have managed to hold on to some of the good I was able to find in her. I used to joke because selfishly I was relieved my dad died instantly from his heart attack. With him in Florida it would have been very difficult for me to care for him if he had a long term illness. I knew I wouldn’t be so lucky with my mom. She will hold on and fight forever. She has amassed ample resources and insurance to maintain her island status especially at the end of her years. I’m sad to admit that I’m breathing a sigh of relief that she has serious health issues before my step father because if he went first, I’d be left to deal with my mother. I know I can’t take her on. This woman has her head stone erected in place just waiting to etch in the date of death. The story she’d like us to believe is that she didn’t want to put me through trauma of making decisions when I would be emotionally compromised. That sounds commendable, but the truth is that she doesn’t want my step father buried next to his ex-wife. Even in death she’ll be calling the shots. She isn’t expecting me to intervene in her care. She wouldn’t allow it.

I knew I was desperate when I contacted my ex-husband because Mr. Fix It or Forget It would offer some solution and I needed one.  I had to tell him I wasn’t going to get my son for the weekend. Ours is a strange relationship after thirty plus years of battle. It’s quite humbling to have to resort to depending on him in instances like this when in relationships he doesn’t have what it takes. He’s usually good at grounding me in base emotions. (I’m being sarcastic here.) When I hung up with him I tried to collect myself for the commute home, then it hit me. I remembered and felt the pain.

Once home I busied myself with household tasks and collapsed on the couch and wondered why the MD hadn’t given me anything for pain.  I live on Motrin and Allegra on a daily basis for my perpetual sinus issues. I thought I’d pull out the big guns and try Advil PM since I knew I needed to sleep. Yeah right.

I went to bed in sweat pants and long sleeves. And so began what I call my fever coma. I vacillated between profuse sweating and chills for days. I didn’t do anything but shudder and keep my eyes closed. I only got up to pee. Thank goodness I only had five steps to the commode and the path is committed to memory even in complete blindness.

At some point during the night I got up to refill a water bottle and in my feverish stupor passed out at the threshold of my bedroom door. Should I have known that since I hadn’t walked that far in a couple of days maybe the odds weren’t in my favor? I was woozy and nauseous and had to brace myself along the way. I knew I had to strategically support myself in intervals just to get to the refrigerator, but rational thinking wasn’t my strong suit just then. Breathing, sipping and shuddering were all I could manage.

I kept thinking about passing out. I thought you sort of knew when it was happening like when you’re dizzy, but you don’t. I just wanted to get back to my bed. I felt my face hurt and I think I felt insulted or offended by that. Then I felt my face on the floor and at the edge of the carpet and knew something wasn’t right. Then I realized the rest of me was me on the floor. I felt around with my hand and found the carpet. I figured I should go in that direction. My bed was on the carpet. I crawled back to my bed. A tidal wave of a rush overcame me. The sweat trickled from my matted hair and ran down my face. I could taste the salt in the droplets. I couldn’t open my eyes. My college age daughter has since informed me that she could identify since passing out is what she considered a good night of drinking. Sigh. I can’t relate. I never had the typical childhood or college scene. I’m not regretting that.  I’m just reminded of God’s sense of humor with that child. I used to pray for people like her and keep my children from them, now I have one of my own.

The next day my other adult daughter came up. She made me a smoothie, made me laugh and changed my sheets. I made myself get out of bed and try to get some sort of nutrient content in me. While she sat on the couch yapping, I felt semi coherent and present but not fully. I was able to engage in conversation but I felt disconnected like I was having an out of body experience. I even looked at my phone, but didn’t have energy to do more than that. I was still nauseous and feverish and barely functioning.

I didn’t know if the fever was from the kidney stone moving or what, but I didn’t have flank pain anymore. It had been replaced by body aches and a massive head and neck pain and pressure.

I cancelled the surgery. I could barely get up and walk to another room besides the bathroom, and my head felt like it was in a vice. The sweating and chills kept me horizontal and with my eyes shut for another day and night. I felt like I’d aged a lifetime, my muscles were atrophying. I understood why an elderly person needs to rest after doing the most minimal task.

The next day I took a shower and got dressed; a major accomplishment. I even made an appointment at the medical group where I’d had a physical done for school. I was leery of the drive. I mean I hadn’t been upright and coherent for more than twenty minutes at a time in a several days. I didn’t want to endanger myself, or anyone else.

The office visit wiped me out. Thankfully I had dressed in leggings and long sleeves because the temperature in there made me feel like I was in a refrigerator. I had to lie down in the exam room. I was in a fetal position and teary when the PA walked in. I didn’t care. He asked how I was feeling and I just looked at him and asked, “really, do you want to know? Look out because I’ll tell you.”

I told him that in a matter of a few hours I learned about my mom and was scheduled for surgery and that ever since, I‘d been in a fever coma. When I told him about my no insurance woes he remarked he didn’t understand why someone like me wouldn’t have insurance, since I was attractive. That didn’t make sense to me. I think I was still suffering a time delay effect because it took a minute to register. I thought he must have meant to say that I looked smart.  I replied by saying I was smart, just not always practical.

He diagnosed me with the flu and said that the kidney stone had probably moved or I’d passed it. He was more concerned with my current status with my head/sinus/ear issues that have plagued me for several years. He showed me the billing code and ended up charging me the least amount he could without being fired. Then he gave me his card and told me to call him because if we could work out health issues that didn’t require an appointment over the phone, he’d be willing to do that to help me out. What a deal.

Yesterday I woke and finally felt like my body and mind were in synch operating in unison again. I felt hunger and had an appetite to taste food again. I stretched and moved my body beyond mere necessity. I haven’t done much of anything except to organize an area in my kitchen. That took all of ten minutes. I did get back online and plugged into the things that had evaporated in my health hiatus. I listened to music, and I knew I needed to write.

My first venture out was my favorite type of venue, a small intimate concert. The fact that this was a Christian concert was comforting. I needed a spiritual fix and part of me needed to take baby steps and to be inside a church enveloped by Christian people and music. Inside those walls I can let tears fall and not be conspicuous. So many spiritual life and death issues have been weighing heavily on my heart. I’ll need to work out the issues surrounding my mom and how this turning point in her life will affect both our lives.

It’s when life comes to a stand still that I’m reminded of what I value and my thought pattern is redirected. It is through suffering that I am most appreciative for the simple aspects of life I’ve taken for granted. Not being able to do anything but be conscious of my pulse and breath was sobering. Much of my experience lately has been drawing me to be present, in the now.

I’m thankful to get out of bed on my own. I am grateful to have an appetite and taste buds and the ability to keep food down. I was reunited with my dental floss and was giddy. I delighted in doing my dishes. I took stock of all the visual clutter around my home and while it has been burdening me because of the emotional drain in getting rid of it, I choose to see all of it as a lot of life lived and an abundance of blessing. And if I let my thinking evolve to the bigger picture, I’ve survived another nasty battle. I have relative health, enough resources, a home and family and opportunity.

But more importantly, I know what it feels like to be without insurance. I know the fear of needing medical intervention combined with not wanting to go into debt to receive it. I know what it feels like to be completely alone and desperate when you can’t even get out of your own way. I know what it feels like to be betrayed by your own body. And I know the dreaded ambivalence of waiting for the dawn while uncertain of whether or not you want what may come with it.

I continue to grow stronger because I’ve been down and out. I’m grateful this latest hurdle is behind me.

I am a bit more seasoned and that’s a good thing, right?

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Newtown, Their Faces and Their Names

Now that we have the faces and the names of those killed in Newtown, I am stilled, stirred to the memory of my experience at the Holocaust Museum in Israel. There also, my heart and my mind could not contain it’s entirety. I couldn’t take on the depth and magnitude of the travesty. My mind could not bear the burden or absorb the whole of what I was exposed to there.

Time has eroded clarity of all that my senses took in, but what does remain too close to the surface is the gripping anguish that engulfed me as I moved through the children’s memorial; a narrow corridor of darkness.

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The only light; the images of their faces.

The only sound; the recitation of their names and age of death and where they were from.

I thought that maybe the reason that memory is strongest is because I was thousands of miles away from my own children and the thought of outliving them unconscionable. But Friday morning I realized why.

Life was stilled. Lives were eradicated from existence and generations lost.

Now from so close to home, Newtown, we have their names and their faces and the bits and pieces of their lives.

The children.

The teachers and other administrators. The nurturers who led by example. They were protectors of their children. I have an adult daughter. She is a music teacher. Her students are also her children. She is equally devoted and protective of them as she is her own son. I think many of us can attest to a great teacher who has impacted our life or that of our children.

The adults killed at Sandy Hook Elementary School, their valient sacrifice and dedication to their students also reminds me of another exhibit at the Holocaust Museum. The statue of Janus Korczak.  The statue sits surrounded by pebbles. Visitors can place pebbles on the statue in memory of the children.

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The Korczak Square recalls the bravery of Jewish/Polish educator Janusz Korczak. During the Holocaust, Korczak refused to abandon the children of his Warsaw orphanage, perishing alongside them in the Treblinka death camp. Located in the square is the statue “Janusz Korczak and the Children” by sculptor Boris Saktsier.”

 

In Sandy Hook, visitors are leaving flowers, candles, balloons, teddy bears, Christmas trees and toys these children should be receiving in life, not death.

I have not lost anyone to homicide. I do not understand the pain of the survivors of these 27 souls. But I do know the grief of suicide.

When researching the difference between suicide bereavement and other forms, suicide was often lumped into a category of traumatic death which included homicide and that of parents who have lost children via trauma. This is when I learned that our language doesn’t have a word for such a tragedy. I resisted the label of widow and technically don’t qualify by the letter of the law. Yet in my heart I do. I needed a word to cling to. I suspect these parents who have lost their children unnaturally do as well. Friday, I researched again and found a mom who lost her son, who found the word ~vilomah~ which means an unnatural order of loss. I sat with that word for a while. It may suffice for those searching for a label. The more I thought about it, I came to think that maybe the reason we don’t have a distinct word for such, is because there shouldn’t be one, because as parents we can’t even compose a word to give death to the life we create.

I have learned that sometimes grief is like water. Constant, capable of changing shape and taking on many forms. In my experience grief doesn’t leave. It is like an ocean. Sometimes, I can stand at the edge on the shore and while I appear to be rooted firmly in place, the pull of the tide is taking grains of sand underfoot from my stance. I’m forced to move. Sometimes depending where I am on shore, the water barely reaches me, making its subtle presence known only as the salt water foams around my feet. Other times, the waves knock me down like a relentless tidal wave, pulling me under, disorienting me. I resurface and want no more of it. But traumatic grief becomes engrafted into your DNA. One is forever changed and you learn to live together coinciding with grief and the love we have for those we lost to horrific death.

Tomorrow, we won’t have the luxury of a weekend to grieve with the media and all the other trappings of tragedy. In time, the candles will be extinguished, the teddy bears gathered up and people will have to go back to their lives.

The families, parents and siblings have to buy coffins and cemetery plots. They will have empty beds in their homes and unfillable holes in their hearts and lives. They will gradually learn to live without their loved ones. Their need to grieve will live on as will the spirits of those who died this Friday. Remember their need to grieve.

I pray that Newtown will find a way to memorialize their love of these precious souls taken before their time.

Please also find room in your heart to remember The Lanza family who lost their mother and son. Adam was also a brother and a son. I believe his father and Ryan have lost their son/brother twice, first to mental illness and then to a senseless death.