What they never tell you!

24 Oct 2023 Leave a comment

by cindythea in Uncategorized Tags: , , , , ,

July 4th, 2023- while the rest of the United States is celebrating freedom- albeit in the rain where I lived, I was well aware that at around 10-10:30 that night I would turn into the proverbial medical Gremlin with an anticipated surgery the next morning. Check in sheduled for 6 am, which meant waking up at 5:15 am-no coffee- no scone (as though I breakfast on scones in the first place)-nothing in my stomach-so much in my head. No make up (and I rarely leave the house without trying to look somewhat human), no reason to do my hair, all my jewerly placed in the heart-shaped bronze colored, wire, trinket container–There is a necklace that I never take off- the main pendant is a trillion shaped, celtic, trinity knot

that I pair with a tiny round diamond encased in the letter X, which signifies the birth of my first son, whose name begins with X. The main pendant was given to me by my then boyfriend ( now my fiance’) and I later received the matching earrings (both as gifts for a birthday and Christmas) I rarely take either of them off for any reason…..But on the evening of July 4th, they all lay in the botton of the jewelry box that my youngest son gave me- even that has significance- He won that in a White Elephant game at his great grandma’s house last Christmas, and although he knows my distaste of all things heart related- he kept that to give to me for my gift. He knew this particular piece would have special significance…..It came from my ex in-laws family Christmas gathering and from the home of a woman who used to be the only person I had that was closest to a grandmother- she was kind to me, accepted me, for the most part, at face value, laughed with and seemed to know me- I had never grown up with a grandmother- she was near and dear to me- and in the split I lost access to her, her kindness, and a relationship with her. ( you lose so much that people never tell you, the trade off can be positive, but the fall-out from losing some really important connections stinks.) She, like many within that family, want nothing to do with me- I think believing that I ruined their relative’s life- sullied a reputation, & that I was nothing to care about in the first place. That hurts, but I cannot control their actions or thoughts, (believe me, I have tried, in so many instances, to do just that.) and what they think of me is their narrative-not mine to own (and that is hefty stuff to acknowledge too!)

Waking the next morning at, yes, the butt crack of dawn, is/was not easy. For those that know me, I am NOT a morning person-I do not (and refuse to) pop out of bed, all wide awake and bushy tailed, ready to dance my way through my morning Zoomba class (as if), & have 5 hours of work in before a morning coffee break. I am quiet, slow moving, somewhat sullen ( ok, the sulky part of sullen works- not the ill tempered or depressed)- I fully embrace the beauty of an early morning sunrise-I just don’t happen to want to partake in lots of them. (Now, if I was in the mountains or the oceanside-that may be a different story) I was quiet-my to-be fiance’ woke me as I slept fitfully on the livingroom couch- (lest anyone assume anything different-I have my own, solo space in which to sleep-as does he) I could hear nothing from the boys’ room upstairs, so I assumed they were safely ensconced in la la land!

Arriving at the surgical towers, I glanced behind me to discover one of my closest and best friends walking to catch up with us- WHAT!?!?!? It is the middle of summer, way too early in the morning, and did I mention, she is a college prof–they get a little bit of time off (for good behavior) in the summer. WHO goes out of their way to appear & sit for hours during a surgical procedure–? A sister from another mister does that-one who loves unconditionally.

Pre-op, consults complete, consents signed, gowned, non-slippy sock adorned, I sit ready for another step in the healing journey. This time- after almost 2 years of consults, tests, injections, X-rays, MRI’s, I entrust my back and cervical spinal column to one of the best neurosurgeons in the region. I have to trust his expertise- his wisdom, his staff- I have to trust in the process & relinquish control- (for any that know me- that is something I do not do well) I have to have faith that all will be ok- and I have to embrace one of the hardest concepts to rise to the surface in this whole process- I have to embrace another step in the healing process.

Healing- that is quite the word. Of all the things I learned this past summer- this continues to stick with me- People’s actions- their words, and even inactions have far reaching implications. What we do (or don’t do- ) what we say (or neglect to say) matters- & the effect is huge.

So, here I am, almost 49 ( at the time of surgery), confronted with the knowledge that people’s actions from decades before was directly affecting & partially responsible for the present situation- that at this juncture I am literally, financially, emotionally, and physically paying for the actions of others (multiple others). Healing those actions is not an easy task- there can be surgical interventions, but it is likely that I will end up with more surgeries, & the fact that my spinal column & vertebrae is close to an elderly person’s is hard to swallow.

Healing- what does that entail? I will tell you- it’s uber hard work. The Drs., surgeons, nurses, techs can mitigate symptoms, but the real work is up to the body, mind, and spirit of the one who is under the knife & anesthesia- The real work is heavy lifting-it feels lonely, daunting, isolating, and yet- there is hope within it.

That pre-op room was full of it-hope. The room was full of anticipation-history-connection, and yes, love. Of all the tangibles in that room, love was the most prevalent. Accepting that is not always an easy task- You see, a lack of attention, a lack of concern & others missing things that put me in this position & while I could rest on trying to pin blame in multiple places-where will that get me? What good will trying to figure out the when, how, who, & to what extent the damage occurred? The truth is, I will never truly know. The situation is due to a myriad of issues- a perfect storm of situations collected over decades-and I am partially to blame

It is hard to type that- hard to admit that I have to own my part in all this. I missed warning signs- ok, I didn’t miss them- I recognized them & refused to do anything. I lived in pain- in misery-in a place I thought I deserved. I believed that it was my job to endure-to wrestle in silence-the punish myself, to lay out the martyr mat & walk it every day. I knew stuff was wrong-I knew that the hurt was excrutiating, knew (in my head) that I didn’t have to live that way, & maybe the avoidance of claiming that I could pursue doing something about it was my way of dealing. But, the body, like the mind, keeps the score. The body, at some point, will give in to the strain, break under the pressure-eventually, if it’s not attended to, it’ll simply shut down. Maybe, in some way, I was ok living the way I was, but there was something that was not content. Sitting in that pre-op room was/is step one to healing. I knew, my mind knew it, my spirit knew it, my body knew it! (that’s a lot of knowing its)

As they came to wheel me down to the operating room, I knew one thing for certain-the road to healing was/is right before me- the decision now was/is whether or not I can lean into what it means. My counselor often busts me by saying that I like to walk into the mukkity, paint it with pretty words, avoid moving through it, paint it with more pretty words, and then jump to a ribbon wrapped ending. The fact is, there is no pretty way around healing-not if I’m doing it the right way. Just as getting to the root of the problem is not easy & requires mulitple cuts & scars from the Drs., walking through it as the person, that’s another journey…….More to come.

A New Normal?

24 May 2023 Leave a comment

by cindythea in thoughts Tags: , , , , , , , ,

May is mental health month and it is an area of focus that is near and dear to my heart for obvious reasons. I have a son who wrestles with mental health obstacles, many of my family members and loved ones do as well. I battle my own skeletons of anxiety, dysthymia, and PTSD response. I spoke to a good friend last week after they read my most recent blog where I talked about my son and some of the struggles he has encountered in this, his first year in college. It was after that conversation that I felt compelled to keep writing, to attempt what I deem the impossible- to write unabashedly and transparently that which is on my heart in a way that invites others to find themselves within the words should they choose to do so. It feels impossible because I am a consummate perfectionist and creating anything that is less than the standard I set for myself (which in itself is almost unattainable) is unacceptable. That means that anything I write must be 100%, iron clad, perfect with impeccable grammar, a quantifiably large number of big words ( cause you know they make me sound smart) and created without error from the first draft-(after all, I am just as good as Hemingway, right–NOT!!!) The more I listened to their conversation, the more I realized that maybe what is needed is good ole fashioned realness-in its raw, gritty, often muddy, not perfectly tied up with a beautiful bow kind of insight. Maybe instead of glossing over that which hurts and trying to put a pretty pirouette on it, I could peel back the layers and walk the walk I challenge myself to in my head ( my head talks to me, like a lot!) Maybe there are others who are thinking similar thoughts, journeying through common grounds, and could use a moment of “OMG, that’s me!” So, yeah-let’s see what we can unpack here.

The above quote comes to me after 2 weeks of soul searching as the result of interactions with a loved one and what they bring to the table in my world. I have spent years (ok decades), beating myself up for the stories of my past that are not lily white and purely perfect. I come from some tough stuff- I harbor some pretty deep hurts and tell myself some awfully damaging stories that are directly related to my family of origin and my adopted upbringing. I have told myself for decades that those skeletons from my past render me inferior to most people-that once they knew who I really was and the source of all the insecurities they would run screaming for the hills ( but the hills ARE alive with the sound of music after all….). I have looked in the mirror, loathing the image that I saw each day, wishing for a different narrative, hoping that one day the clouds would part and the sun would come streaming through to illuminate a new path. (insert Wizard of Oz Yellow Brick Road reference here) I believe (d) that the dysfunction I experienced and in some cases helped perpetuate meant that I was garbage and unworthy of love. In reality, things happened in my world- trauma (multiple ones) occurred and caused massive chasms of pain in my soul- some have lessened over time, some will likely never heal completely and yet others will rear their feisty heads at times and demand that I pay attention to them. What I am realizing is that those traumatic experiences do not have to dictate who and what I am-not to myself nor to other people. Biting that off and chewing on it is proving quite the task.

My friend and I spoke of what it feels like to be loved- to be truly seen, heard, and cared for just as we are- festering ickies and all- reactions that are sometimes unpleasant and all the things that make us who we are–the good, the not so great, and the downright putrid. We both expressed a massive sigh when we discovered that until the moment we were united with the person who can show us that kind of love-we’d both been holding our breaths so to speak and now- now finally we are beginning to know and embrace what it feels like to breathe- (did you know that consistent breathing is good for your health?- huh, who knew, right?) That we didn’t know what it was to kinda feel alive until such time that we in a sense found the “one whom my soul loves” What a feeling that is.

Words are vitally important to me-they, in my opinion, have the power to elevate and build or to topple and destroy. They leave a lasting impact and I often am analyzing for both their individual message and the collective communication they bring. I am hypervigilant (to an extreme)- and not just because I am a female and that tends to be an MO for many of us. I am hypervigilant due to a heightened need to be aware of my surroundings at all times. It is a state of constant tension-of being on high alert- ready to fly or fight any danger (real or perceived) that may occur. It is a massive trauma response and is closely tied to our friend, PTSD. It is absolutely exhausting–and yes I used the absolute there on purpose- it sucks. It turns normally benign situations into danger zones and conversations become filled with landmines that both parties feel like they have to sidestep in order to avoid a blow up- it twists reality into a writhing mass of insecurities that threaten to choke the life out of the good that is present (see the really cool snake reference there?) That vigilance causes me to question, doubt, OVER analyze, and negate that which is good-reducing it to a sodden pile of waste–then I think it is too squashy and grotey for me to pick up, so I run or I avoid or I deflect. I am a master at it-and it also sucks.

That’s the thing though-when people enter your life with a desire to do nothing but love us for who we are-something happens-something dislodges and things you never thought were lurking below the surface come rushing forth and engulf you in emotions. The person or persons who can handle that and love us through that are treasures indeed. I have such a person (and people)- and it is discombobulating at best.

“Love,” Andrew Lloyd Webber says, “Changes everything.” Oh my gosh, how true that is. Breathing-leaning in, acknowledging, and accepting that kind of love here on earth and even in the Divine can be such a difficult task-but oh, when I recognize it-I want to run full force towards it. My friend and I talked about how we view ourselves in the midst of such love-“it’s like I can admit that I like the person who is loved in such a way”. I am right now in conversation with 3 of my best friends, planning a trip to see P!nk in concert and I am flabbergasted that they want to include me-that they deem me ok enough to love and journey with on the daily. I spoke to another “sister from another mister” today about my own insecurities and doubts about myself and there was no judgment-no anger-they did not condemn me- I’m like- “what???” There is a significant emergency contact in my life who calls me beloved-believes I am beautiful in any light-delights in my weirdness, whose quirks don’t irk, and despite my best efforts to blow crap up-stands in the midst of rubble around us and steadfastly declares, “I am not running”

What the hell do I do with that? You may be saying-uh—-you accept it and revel in it. Careful, careful though. You see with all that goodness comes all sorts of bells and whistles that scream at me that there must be danger lurking somewhere-there is certainly a shoe about to drop (where ARE Dorothy’s slippers anyway?)-there is a constant feeling that what I am seeing and experiencing can’t possibly be real (who knew you could gaslight YOURSELF). Readers-this is sooo sooo sooo exhausting and inspires me to want to crawl into a hole and cry. I want to bawl for all the amazingness that I am experiencing as it is mixed with a fervent fear that I am about to lose it all and it will be all my fault. That one day my friends, whom I call brothers and sisters, loved ones I adopt into my fold, my darling significant emergency contact will all one day wake up from the hazy hallucination and discover that loving me is too much work-(that’s not a drug trip I want!) I ache for the years wasted in disbelief and self hatred, for the narratives that have shaped my self image and threatened to engulf what I know to be true about myself.

What am I trying to say with this blog? I think I am saying— I don’t know shit. I don’t know how to do this-I don’t know how to sit amongst the amazing and admit that I have to embrace the suck that this journey is taking me on right now. You see, because I have such incredible people in my life (and there are many-I can FINALLY admit that), I want to heal-I want to know what soundtracks sound like without the interference of constant static-I want to enjoy breathing-I want to explore needs, wants, desires, and figure out how to vocalize them. My own counselor is overjoyed at the emotional quandary in which I find myself-she believes this is where the truest Cindy will reveal herself ( and stop talking in the 3rd person) and show a transparent strength that has been sitting there this whole time-she believes my best days are yet ahead of me and that to get there I have to walk this most stinky part of the road- Loving others is easy-oh, so easy, cause I can concentrate on the needs of others and put them first. It is accepting the love of others that is proving so hard and so so so painful- painful enough that I feel almost consumed with how to perform perfectly so that I don’t lose any of it- and yet, there’s the rub ( and Shakespeare makes an appearance-Well, hello William). If I am insistent on performing perfectly I will lose it because there is no way I can be perfect ( knowing there was only 1 perfect person to walk the planet). I can’t get this 100%-and people don’t want that. People want the real-the icky squishy, vulnerable, and perfectly imperfect me so they can Velveteen the crap out of me. At least that’s what I want to offer others-and secretly it is what I yearn to receive for myself- What am I saying- I know what I am being called to be about and what I am being asked to embrace on multiple fronts and it scares the hell out of me- Yet- And….yet…….And YET—I want it more than I can articulate, I am not sure how to do this though and that is prolly the most scary of all.

Anyone else out there feeling like that? (cause it is such a relief to know I’m not alone–) (Insert “You Will be Found” from Dear Evan Hanson here—hahahaha earwormed ya, didn’t)

YOU, you are NOT alone! And maybe, just maybe, I’m not either.

How do you Measure, Measure a Year (RENT) ?

01 May 2022 Leave a comment

by cindythea in thoughts, Uncategorized Tags: , , ,

It is no secret that musicals tend to run on auto play in my head-well just about any song lyrics from my various playlists flood my brain at any given moment of the day. This time as I reflect on this of all days, RENT seems the most apropos.

The above picture is the exact same day 1 year later- In one picture I am posing for an award nomination that I received, and the other one, I was fresh out of a salon afternoon. Both instances I was in the same salon-doing my thing and letting them do theirs. The differences are stark- and they have not left me alone since I saw it. The fact that it was April Fool’s Day is also not lost on me. Huh.

Today, May 1st marks the 1 year anniversary that I moved out on my own, left a place that I had known for well over 2 decades. A place that I had helped create-fostered-thought was a haven–it was simply a location. 1 year ago, I packed what I was taking to my new home and set forth to create something new. My youngest son was with me-numerous trips had already been made and the furnishings were coming together. One of my besties accompanied me, loading what could not fit in my car-a car that my youngest now drives daily (that’ll mess with your head), and followed me out into the country.

I remember driving away with such a mixture of feelings. I knew that I would never return to this location as a family member-part of a unit. I knew that I had no right to expect that and out of respect I have maintained those boundaries. Knowing that I would be there as a guest of the home hurt. I knew what went on in those four walls-I knew the people inside, knew their habits, their schedules, their idiosyncrasies. I knew I was leaving the comfort of what was known and starting something new. I was scared, I was terrified, I doubted my decision, I doubted me.

I felt massive levels of shame- and guilt. Mostly I felt ashamed. I felt that way for so many reasons. I was walking out-walking away from something that I knew was imperfect, but it was known. I was leaving 2 sons that I had seen day in-day out for the last 17 years…I felt like part of me was ripping apart at the seams as I contemplated life without their noise and mess around me 24-7. I felt so much shame at not being able to piece something back together-to give it one more shot. To be honest, I didn’t have 1 more shot left in me-my physical body and my emotional well being were screaming at me that is was time do something or others may be left holding the pieces. The heart scare was enough to awaken me to time. It is oh, so short. Having to go through those tests, hearing the doctors tell me that if I was going to have a problem, this was the one to have-enduring episode after episode until resolution happened was terrifying. But, it woke me up. I remember being the in ER and the lead Dr, ( I had worked with her often as a chaplain), look at me and ask, “A little Ativan to take the edge off? Our pulse is still 175, you’re not leaving here until I see it at 100 at least.” I actually told her no, that I could do it on my own-that I had this in complete control. OBVIOUSLY I didn’t-I had been brought in with a pulse rate of 255 ( I guess that’s a little fast). Obviously I could not get this under control on my own-but damn I was bound and determined to maintain that stubborn, stiff upper lip, ask no one for anything attitude that has bound me in titanium for 47 years. I was not going to break for anything-I vowed that I would never break.

I broke.

In fact, I have been breaking for a year.

I drove away from the house, steeped in shame, doubt, fear, and unconfident.

I look at the 2 pictures posted above and I am shocked by the difference in them. They are like 2 totally different people. Sure, the smile is the same shape, the eyes too, still gots good hair (thank you to my amazing stylists). There are other elements that exist in the picture on the right. The woman on the left looks ok, but it appears like she is going through the motions-the eyes have no luster, no life in them. The face is strained-what emotion is in there is for show-to let people on the outside know that NOTHING is wrong and NOTHING will penetrate titanium-that I can do all the things on my own.

The woman on the right-the smile is open-engaging-dare I say happy? The eyes are more alive, they contain more energy, they invite a person to come along for whatever ride we’re about to take-together. The face-albeit with more wrinkles than I would like, is relaxed, contains some character. You may wanna hang with this one- For the first time I am willing to admit that I DO hang with this one.

I never wanted anything to do with the many facets that are me. Driving out to my new home a year ago, I knew that I would be left alone with one person and one person only-me (well me, and my best boy OLIVER, the PUG). Did I have the courage to sit with her, dine with her, care for her, and rest with her night after night, alone? Did I want to? Could I stand to be with her and all her stuff?

As I watched people unpack my home, placing items in cupboards and re-arranging furniture, I felt such immense sadness at what I had left. I felt horrible that I could not give my children a perfect story, a fairy tale ending where no one got hurt. I knew others would be left in the house, dealing with their own stuff and it hurt to know that I had caused part of that.

People left, the house in the country got quiet, really quiet. Out in the country, you have space and time does seem to stand still. My son went in to the other house in town and I was left to my own vices-and to discover where he had put most of my kitchenware. I was alone, with only my thoughts, emotions, and days to fill on my own.

That first night was so quiet-so was the next one, and the next, and so on. A year later it is still so quiet. But I do not fear that quiet as much as I did those first couple weeks. Weekends, when they aren’t jam packed are solitary and often inspire me to feel a certain amount of loneliness. And, not gonna lie, the nights are the roughest-when you are working on something (in my case writing or reading) and you have a thought and you lift your head to share it-there is no one there to hear it. I used to visit my son’s rooms each night, hug them tight, and whisper, “You are beautifully and wonderfully made. And I love you.” It was our thing-my way of connecting with them and I no longer had that. That gutted me-still does. I often watch, search, yearn to see on my phone that moment of connection and often have to choke back a moment when it doesn’t come-and then the joyous smile I have when I see the opposite happen!! They remembered! They read my text! I matter! I AM important to them!

Even though I would tell them good night, I would then walk down the hallway, into my room, sit on my bed and be there- alone. You see, you can be surrounded by people and still feel alone. I was feeling that and my face and my demeanor and my room showed it. My room was a scattering of mess. In fact, I rarely entered the living room for any length of time-unless it was to pick up or whatever and I often remarked that there was not one thing of mine in that room-nothing in it that indicated that I was there-I had never noticed it-never noticed how small I had made myself–how many layers of titanium I had built to wall me off from the rest of the world. I had never noticed how many bricks I had added- I had not broken because I couldn’t feel anything. And no one could get to me-but I dearly wanted people to come in-I just wouldn’t let them.

Today, a year later-and it’s been a year. The boys come and go-sharing time in and out of town. That is still hard to get used to-but I know they are ok. I miss hearing their commotion-dearly miss talking to them in the morning-I did not realize how much I needed or wanted those connections at night and in the morning. But, they matter. They matter because they make me feel like I belong to someone, that there is a tether between me and them and though the outside world exists and still turns, there is a home base for all of us. They matter because it’s important to tell the people in your world that they are important to you-it is something I am teaching them–when it happens, I am on cloud 9 (whatever that means). When it doesn’t and I go holidays or weekends without hearing from them, I feel this immense void-like a part of me is hollow. I know that will subside, that there will be days, weeks, and months in the future that I will not hear from them. Today, though, I need that connection that lets me know that for now, we’re ok-maybe even more than ok.

Today, a year later, I can honestly say the process of melting titanium is taking place-it is painstakingly arduous. It hurts worse than any pain I have ever experienced. There have been issues and situations that have come about in this last year that have driven me to my knees-knocked the breath from me, and catapulted me into memories I thought I had boxed neatly and shelved. I can say that I am breaking-breaking molds that I hid behind-narratives that I play ad nauseum, theories that I have fostered, beliefs that I held onto with everything that I had. Those are breaking free and it often leaves me feeling naked and vulnerable and that screams at me that that is weak. Vulnerability isn’t weak-it’s hella strong! I am learning that and I am admitting to you, dear reader, that I suck at it. I am constantly asking myself if I am doing it right so that I don’t mess up-OMG it is exhausting. It means looking at situations head on and asking myself why I am having the reaction I am- (enter CPE training here) and what can I own versus what is for others to own. That is hard, especially for this people pleasing, over functioning, empath.

Today, a year later, I have discovered a village of people who are FAMILY! I may have been part of separating one family unit ( and I miss those relatives dearly), and motivated a new definition of how we do it, but it’s being done. I have learned that despite my smart kid in the class mentality (and I LIKE it that way!), that I DON’T KNOW JACK….I am coming to grips with that knowledge and I can’t say I revel in it. I have seen incredible acts of love and kindness and I have seen people and situations ripped apart-and each level me as I feel them intensely. I have experienced love and acceptance from people who barely know me, but convey such care, love, and regard for me that it often brings me to tears. I am recognizing so much that was never on my radar-so many ways of doing and looking at things, that I am often left baffled and wondering if I am doing it right. That’s where grace enters. There’s always grace-I am learning to extend that my way-there’s lots of layers to this writer that have yet to be uncovered and each of them needs TLC and a whole lot of grace.

On my counselor’s floor a week ago, I uttered some of the most honest words I had ever said in her office, ” I don’t know how to do this.” I really don’t.

Today, a year later, while breaking up is hard to do, time heals and new ways of relating take shape-or not in some cases. What is happening is the chinks in the titanium armor are elongating, giving way to revealing the squishy-the smooshy. I am not always sure I like that and I often retreat back in, hide out, and deflect to concentrate on others-to love on them, to compliment who and what they are-to build them, because it’s easier to do. It’s easier to flip a compliment than to say thank you and let others know how much their insight means to me-it’s easier to believe that they are lying-that they don’t mean what they said, that they’re just being nice-that’s BS! And, I am learning that.

So.

Today, a year later, I continue to break.

Shalom,

cah

18 and Life to Go~

22 Mar 2022 2 Comments

by cindythea in Uncategorized Tags: , , , , ,

ENHANCE_NONE

” This time no one’s gonna say goodbye
I keep you in this heart of mine
This time I know it’s never over
No matter who or what I am
I’ll carry where we all began
This time that we had, I will hold forever” Criss Darren Everett

These lyrics came back to me yesterday, on my son’s 18th birthday-as he stands on the precipice of a new chapter beginning in a few months, I felt all the feels at his most recent med check appointment with his psych Dr. My son signed off on a medical release which allows his father and I the right to still be involved in his care as he moves into adulthood. It was a bittersweet moment as I sat, listening and planning my son’s future-a future where I can no longer call the shots-a future where I loosen control and see if he can fly.

I am terrified. I am terrified to let go-terrified to loosen a grip-terrified to step back, and terrified to feel. For the last 18 years a little boy has depended on me to supply so many of his needs and as he ages these instances he needs me are fewer, but are more important- they are bigger. For the past 12 years, since the summer he was 6 years old and my deepest feared suspicions were confirmed, I have lived and breathed in the midst of what is best for him-his needs and his future.

I remember clearly the moment when I knew something was amiss-I knew that my son was hurting in ways that I could not reach. Something had gone terribly wrong at his summer care environment-so wrong that I had to file a report at the behest of mandatory reporters-so wrong that, to this day, he cannot remember, and that’s ok. At the height of the most turmoil, he snapped. His anger, hurt, and rage spewed forth in a temper tantrum of mammoth proportions. At one point I peeled him off the wall as he climbed up to tear down the blinds in his room and wrapped him in my arms. Stumbling backward toward his bed, I held him as he growled at me, hit me as hard as he could, and screamed obscenities. As I held him, with his back against my chest, he pulled his head forward, reared back, and threw his head backward, square in my face. He heard the thud and saw the blood from my nose on my arm and he laughed a low, guttural sneer of derision. I wrapped my arms tighter around him, rocked him back and forth, and sang quietly to him. His body was so rigid, hot, and sweat covered-and slowly relaxed into my arms. Mocking gave way to soft sobs as the energy drained from him-I knew. I knew my son needed help that I could not provide.

Weeks later the long road to tests, appointments, and questions began. It culminated in the moment that my baby boy, 6 years old, took off after his father because the DVR had cut off part of a program without him being able to watch the ending-moments later he stood in my bathroom, laughing over a container of pudding-and a spoon.

I loaded him in a borrowed jeep-braved some treacherous weather and walked him into the admittance floor of Avera Behavioral. A week later, a triple diagnosis and then some was reached-the ADHD was obvious-the cycling mood and TIC disorder co-morphed with high generalized anxiety added to an emotional cocktail of crap. This is the first time I have ever typed that it was a complete cocktail of crap–it sucked- it still does. I remember that week so distinctly-I remember him calling me in tears because his floor was watching Old Yeller and he couldn’t take the heartache.

My baby, my first grader, embarked on a med journey that was a roller coaster of stops and starts-of iep meetings and accommodations, of countless emotional outbursts, and dreams dashed. He had wanted, from Day 1, to serve in the Air Force and fly the planes. It was all he talked about-his nearly savant like memory could (and still can) recall every detail of every fighter plane, book, documentary, and article and he had to let that go-and I had to watch him do so.

I watched as classmates called him every name in the book-listened to his anguish as locker partners kicked his books down the hall and laughed as he crawled to pick them up- heard others tell him he was unwanted-weird, that he didn’t belong-and that the world and his school would be a better place if he were not in it. The emotions rose to the surface so many times-and there were instances when I intercepted veiled and obvious threats which meant additional trips to his counselor. No one knew the nights I sat outside his door-listening to the sound of silence, no one knew how many times I snuck into his room to check to make sure he was still breathing-making sure that none of the tears that stung just behind my eyes landed on his pillow or his cheek as I leaned down to hold him every hour. No one knew the prayers I uttered.

And, no one knew the rage that I fostered in my own heart-rage fueled by guilt, fear, and regret. I wanted my healthy, vibrant, engaging little boy that had captured my heart the moment he locked eyes on mine, seconds after he was born. And, there were times that my rage got the better of me-when words spewed forth like so much verbal vomit unleashing the venom at these diseases and its impacts on his life. I wanted so much more for him. I still do.

There were so so so many times that I didn’t know if we would get him through-I didn’t know if the meds, the counseling sessions, the outpourings of love would be enough. I didn’t know as we sat through meeting after meeting, whether the grades would be there-if the scores would reflect his ability-if college was even a possibility.

And yet–he did it! 18 and yesterday on his birthday he sat opposite his psych Dr., the same one who has been with us since the beginning-called him on some of his crap and held him accountable. He placed the ball in my son’s court and challenged him to get his head out of his ass. He’s gone to Prom-qualified for Nationals in Speech events multiple times, is the go-to percussionist on the school’s drum set. Now I watch as he drives back into town to pick up his girlfriend, clad in outfits that he chooses complete with a black fedora and a smile. I marveled at his poise when, on his birthday, he toured the university he will attend in a few short months and met the highest leadership people on campus. He was confident, articulate, engaging, and real-he was my Bug. I choked back tears most of the day, observing my baby boy walk into manhood right before my eyes as he caught a glimpse of a future awaiting him. All of this exists as I gaze at above picture-taken just before we went in for his last and first med check appointment-his last boy and his first adult visit simultaneously. And, I am proud of my son.

And yet, I continue to choke back sobs as I bat down the fear that eats at my guts-fear that I have not done enough, that I have not prepared him for the next chapter, that I have not filled his toolbox with enough tools to do the job. I choke back regret for words and fights where I could have damaged his psyche in ways from which he would not recover-I choke back my own impatience-my loss of dreams for him-for the anger at having to accept my baby boy’s condition as lifelong- he will always have to take meds-he will always battle the demons, the statics, the interferences, and the lapses in observation and emotion. I can’t take any of it away-and that hurts something terrible. I want to give him the world and I can’t. I want to restore to him the dreams he’s put away, to rewind the clock and give him the friendships, party invitations, and connections that could have been his-but I can’t. And accepting that is so so hard-and relinquishing the reigns to him is doubly difficult. But, I have to have faith in this wonder boy of mine-and he is, wonder-filled.

I have to have faith that he is in the right place at the right time doing the next right thing. I have to believe in the work we’ve done and his own tenacity to carry him through to the next chapter. I have to let go-and that, well, those words are the toughest ones to write-and to see on the screen as I swipe at the tears I don’t want to fall. Luna, the cat, just heard me sniff and hopped down off her perch to stand on the couch next to me and trill- I think she knows. Because in the midst of all this wonder and goodness-I feel alone-and small and scared and hopeful and confused and a little like a piece of me is disappearing and I don’t know what to do. I feel old and a little girl all at once with no real answers to the pile of questions on my heart.

As I look at the lyrics above, my son, his smile, his heart, his spirit fills my mind-I know that I will carry these experiences for a lifetime and that they have shaped the woman I am today in countless ways- Never in my dreams did I think I would parent a special needs child-one so gifted and conflicted at the same time-Never did I think I could do it- but here we are-

With his 18 and LIFE to go…..(the journey continues)

Fog, like Pea Soup

16 Feb 2016 Leave a comment

by cindythea in depression, Uncategorized Tags: , ,

I drove into work yesterday in some of the worst fog I have ever encountered. It was thick, oppressive, massive, and isolating. It made me think of recent news of a former student tragically completing suicide this past weekend. I know many in their family, I have taught and had multiple connecting points with them and their siblings. I feel privileged to have taught them in some capacity over the years. Driving through the fog, they taught me.
Many will look at a person’s decision to complete suicide as one of the most selfish acts someone can commit. I used to think that. I don’t anymore.
Take fog. Depending on the time of day and the density, it can be all-consuming and frightening–there are also some moments of serene beauty.  As I drove yesterday, I could not see a hands distance from me on all sides. While there may have been, (and were) people traveling the same road beside, in front of, or behind me, I was oblivious. I could not see them, and they could not see me. Normal non-verbal communication that happens with drivers was not seen. Normal signals such as lights, slowing down or speeding up, or a lane change were lost. Eye contact and the bevy of non verbals (yes, even flipping the bird) were gone. In that moment, I was alone. But, I wasn’t. There were others out there, traveling the same stretch of interstate, similar paths and goals, different destinations. I felt alone.
In the case of suicide, this description fits. It’s a dense, all-encompassing fog that breathes heavy, clouds the windows, casts shadows on what we think we see, and impairs our judgment. When the light breaks through, it is blinding in its intensity and after our eyes adjust, we loosen our grip on the steering wheel, turn up the volume on our Spotify playlist, breathe a sigh of relief, set the cruise and motor on.
Being consumed with the painful fog of suicide offers no relief. I say pain here because I believe that is what it is . Wait, I don’t believe it. I know that’s how it feels. I know this pain.
You see, when we encounter moments of intense pain, we will go to any lengths to alleviate that pain. That’s why we have an incredible drug problem out there. People are trying to survive through immense pain. Note that I said, survive, not thrive. When the pain is so crushing that mere survival hurts, a person will do just about anything to find relief. That’s not selfish.
Take a migraine. For those that suffer, it is extreme. I’ve even driven myself into clinics and endured shots to the skull for relief. When it hurts in every fiber of your being, alleviating pain is not necessarily selfish.
Likewise, a person watching a loved one in that much pain will do almost anything to help. We know how helpless we feel when we can’t take the pain away from someone…any parent knows this. Imagine the pain of a child in almost any circumstance, I can guarantee you that most parents feel that pain more intensely than that child and come almost unglued with the want to rid them of it. I have seen my sons’ in moments of pain, their howls of agony rip at my soul. I want to help them and in some instances, I can’t. This is one of them.
In the moment when pain is at its most acute, there is nothing else a person can see or feel. They are not thinking about anyone else, not because they don’t want to, but because they CAN’T. When I am in a migraine cycle, I cannot function for or on behalf of anyone else. I may have the thought that I feel bad for not functioning,but rational thought of taking care of anyone else is gone. This is not to say that I do not love in those moments. I am simply unable to see or feel anything besides the pain and a quest for relief. Relief of pain is not selfish, it is natural and necessary. How we go about that is the slippery slope.
In the moment that a note, email, voicemail, text, or Facebook post is written claiming that we would be so much better off without their existence, there is absolutely no thought to the repercussions of that action. Pain has clouded the mind and fogged judgment so severely that rational thought and action do not exist. All that remains is what the mind and emotions are screaming at that person and all they want is peace.
I am NOT condoning this action. I am trying to grasp hold of it myself and wrestle it to the ground. I want easy answers and they don’t exist. I see others in pain and I want to help relieve it and I can’t. Only the person walking in that pain can and that’s where it’s hard. At the end of the day, I can hurl every strength, show of support, courage and love to a person and I still have no control over their actions. NONE.
That hurts. That’s scary. That’s real. And. it. Sucks.
I know this world. I’ve seen it, mucked around in it, examined its possibilities, attempted to taste its fruit to find it bitter and rancid. My experience is not yours and yours is not mine. But, I have to keep reminding myself that even when I feel isolated and am fumbling in the pea soup, I am not alone. There are others in their cars, on their journeys, similar to mine. I have my own road to take and a destination that belongs only to me, just as they have theirs. They can’t fix me and I can’t fix them. As I remember moments when people wrested bottles from my grip, I recall the deafening scream of silent pain that wanted freedom, that wanted the fog to lift so that I could find relief. Luckily, pain did not win. Tormented plots and twisted thoughts eased and the clouds parted. The fog lifted. I am lucky.
I am lucky because I understand. I am lucky because today I breathe life. Many are not and have not been so lucky and I mourn for them. I mourn their opportunity, I mourn their life. I mourn the level of pain that dictated this as the answer. I mourn because the work continues. But, I also rejoice in a deeper understanding of really dark and twisty places that do not have ready answers. That sounds weird. I rejoice in a constant quest for more understanding and more places of intersection so that I, and many others, do not have to feel so alone.

Carpe What Huh?

12 Aug 2014 Leave a comment

by cindythea in depression, Robin Williams Tags: , , , , , , ,

The recent death of Robin Williams shakes many of us to the core, but to the core of what?  What is at the core that rips us of a blanket of security that shields us like a blanket.  I look at the quotes which have been posted, I posted right along with them.  It was not until I was in the safety of my car this morning, did I pause a moment to mourn.

What?  Why could I possibly have to mourn in the death of a star with whom you have never met, yet was soooo impacted by his story relived on the movie screen.  When we laughingly toss  Carpe Diem around believing somehow we have our crap together. How am I supposed to seize the day when I dread going to school?

What, you?  You have so much going for you>>>>   Ah, you don’t remember or encountered me during some of those hellish years.  I remember I used to walk around the block that our elementary was located.  I remember so many trips around there, singing and talking to myself.  I spun the pourings of my heart, of how I knew that I would never be accepted and that I was somehow “weird”.  I knew from a young age that I would never go to prom, (I wasn’t) or to be asked on a real date (it never happened).  I knew in my heart what I thought was real, was in fact real.

I hated everything about myself.  I used to look in the mirror and tell off the reflection that stared back at me.  I hated her.  I wanted her vanquished, I wanted her dead.  Yup, I said that.  I wanted her dead.

That is so hard to write, some believing that at almost 40 I have it together..I don’t–none of us do.

Honestly if you had told me to Carpe Diem in high school and much of college I would remarked some deprecating slam and “beat them to punch”  I knew they hated me, why not beat them to the punch and throw out the comments as bitingly as possible.  If I could turn it so the response was mine, they could not touch me.  Sure.  I beat em to the punch.  You know what happened?  No one, I mean NO ONE wanted to hang with me.  High school classmates would never invite me to their homes ( that changed a bit my senior year..they were wonderful peeps to me)  Collegiate theatre majors dubbed me weird and cautioned anyone who might be a friend that I was not someone to be accepted.  This did nothing but make me hate that girl in the mirror even more.  Trying like hell to see at least 1 production in which I was cast…it never happened.  I still feel the pangs of hurt and rejection in both those scenarios

I remember my junior year especially, it was a  fairly good year.  I faked most people out and those I didn’t I severed those relationships with a biting  remark that left them shaking their head.  I lost many a friend, I still mourn those people.  Senior year spawned hell in every sense of the word.

I did not qualify for Nationals like I had the year before–gotta do it one more time–  In January I lost the one person I had looked up to and idolized from day 1.  They washed their hands of me, refused to acknowledge my existence.  They were friends with my friends ( the same ones I had severed ties) .  They were so damn talented it sickened me…I knew I would never reach that pinnacle of greatest.  But, damn I tried hard.  With every fail, with every second place finish I hated the girl in the mirror that much more.  I scored up a stash of blades, I wanted to be gone…I stashed them and there are still scars that dot my right and left arm.  I am ambidextrous you see.  I could go both ways.  I had bottles of sleeping pills–I worked at a grocery store, no one thought anything of the purchases I made.  Hell, no one thought much about me anyone..I knew it and it hurt like crazy….still does once in awhile.  I remember the night I had not qualified, almost but not quite.  The general smirk of the one who had seen my victory the previous year now watched me lose.  That one stings badly.  That night I also received a letter from the state college to which I had applied.  It was a letter negating my acceptance into their college.  The work that had to be done just to get me there….Finally a scholarship in theatre was awarded so that I could attend…See, if a dept. offered an incoming freshman a scholarship there was little else the Adminstration  could do to negate it.  In hindsight, I think I got it for the sake of another freshman coming in, talented and pretty–so pretty.  I never ever fit the bill, no matter how I tried.

That night I went outside, sat with my big Labrador (who i had spilled most of my life) and held the massive bottle of aspirin in my hand and the sleeping pills in another.  In a fit of anger, I downed a good share of both of them….then fear hit.  An all consuming fear spread over me…..I still do not know what caused me to throw them up–you see I was a talented Binge and Purger, I knew all about taking care of unwanted food—you throw it up.  There were members of my family who watched me do this…it was not to first time…I lost a lot in those years, years I will never get back as hard as I try.

You see, to declare to a person, Carpe Diem…well, that hurts in a place so deep and dark they can’t explain.  How can I seize the day when I so hated and loathed the person I saw staring back at me?  How can I be  joyous when I hated going to school where there are relationships were cut to the quick so that no one would even talk to me…You see, I did it first before any of them had a chance…I held that manipulation like a banner—ha ha ha ha,  I hurt me first before you even had a chance to…ha hahahahah.  The thing is, I wanted them to hurt as much as I did.  Silly me, it hurts worse than I can imagine.  Sometimes the dark rears its ugly head and I wrestle with depression, loneliness, hurt and self hate.  I often see that girl staring back at me.  I see her amid all the good and wonderful people in my, in those who were watching from afar…(they know who they are), amid a successful career and the beginning of some great connections and respect.  I look at her and wonder…what the hell are they thinking…me?  I dunno.  The dreams that I hold are so jam packed with concepts of redemption and reconciliation are as near and dear to me as breathing…..the writing, the speaking, the moments to speak for those who can’t.

Carpe Pencil?  Seize the pencil?  Write the words, speak….ah, if only I were not so terrified of the person I see in the mirror.  There parts of me that grieve–losses in family, friends, opportunities–(prom–you who giggle probably had a date and the stories from them) I don’t and I knew it all the way back to 3rd grade.  Could I rewind the clock?  Many times I say yes ( and tell the one in the mirror to go to hell, I scream it and pray it transcends to the whole of me), then again I think of all the students I taught, the people I speak with, and those who allow me to journey with them—showing me a glimpse of their reality.  Not sure where I stand ( no pun at all Captain)…that is an ever present fight.

Today instead of Carpe Diem, I challenge us all to say Carpe Rogare!  Seize the Question–How are you,and wait, wait, wait for the answer.  You may be surprised at what you hear.

 

Shalom my friends

I am an Addict

02 Jan 2014 1 Comment

by cindythea in Uncategorized Tags: , , , , , , , , , ,

There is no way to sugar coat this reality.  I am a drug addict.  I am not ashamed to admit this, but am not addicted in the way you may be thinking.  I am addicted to drugs, that is the truth.

I have taken anti-depressant medications coupled with anti anxiety meds for quite some time now.  As anyone who takes medications like this will tell you, sometimes it takes a bit to get the dosage and the combination correct.  What worked months ago, may not work in the present, for whatever reason.  Constant awareness of body and mind has to  be a top priority as well as continual conversation with the doctors in charge of care.

It became clear this past fall that the meds I was on were not doing the trick.  In order to make a move to a more stable med regimen, I needed to wean off of one med in order to take another one.  There are a number of meds that cannot and should not be quit “cold turkey.”  Extreme care and caution has to be taken to make sure that there are no big time reactions.

Cymbalta is one of those meds which cannot be quit rapidly…one that has to be monitored with dosages lowered at a rate that the body can handle.  No matter how slow you go, the impacts are still there.

I had been on Cymbalta for quite some time and really had no idea how I was supposed to feel.  I felt no different than any other day.  The decision was made to do some tweaking…first I had to wean off of it.

I have never thought myself addicted to anything, not really.  I mean I like my Diet Coke, but I choose to drink that.  If I decided to stop, I could and would.  This was a a purposeful removal of something the body was using and something the mind knew it needed.  Whether it was working to its highest level is inconsequential.  The body had it, needed it, and wanted it.  To deprive the body of this would prove harder than I expected.

I was instructed to wean off at a slow pace, but was also warned that some days would be tough.  Oh my goodness.  Never have I felt more at a loss and on the edge of a dark hole than I did at that time.  I felt constantly agitated, irritable, on edge, borderline bitchy all the time.  I could hear myself saying things, thinking this was not me saying these things, and I could not stop.  I screamed in my head…STOP STOP STOP, this is not you!  Then I would feel bad for saying and doing things I could not control.  There were times I could not stop the thoughts in my head…could not tell whether I was coming or going or how I was going to feel hour-by-hour.

Physically I felt worse than I had in a long time.  My stomach ached all the time, headaches were worse than ever, nothing tasted good, I did not want to eat, could not sleep…the list was endless.  I look horrid, I acted worse.

As my body continued to release the medication and my body attempted to reset, the cravings kicked in full force.  These were not food cravings.  These were the intense desires to feel leveled out..to feel normal-at least the normal I felt when I was on the drug.  I would hold the remaining pills in the bottle, my hand shaking, willing myself not to take one….I attempted half doses….and yes.  There were times I told no one and took one to make it through.  I felt guilty and sneaky for doing so.  I hated the fact that I could feel so out of whack by the removal of one med. I was angry that my body needed it, my mind demanded it, and it felt like I was powerless to stop what I was feeling.

After the physical, the mental mess I was in was not something I anticipated.  I could not form a coherent thought and did not want to.   I wanted to scream and yell and throw every kind of temper tantrum known to man…and in some ways I did.  There were times I did not recognize the person looking back at me, I know others felt the same.  knowing that made me hate myself and how I felt even more.  I could not control it.  I craved to feel level.  So, I caved.  I gave in…then some light broke through.

I was under the watchful eyes of my doctor, her staff and nurses were incredible to me and for me.  They kept close tabs on me, asking my symptoms, let me talk some frustrations out and told me that I would get through it.  I wanted to quit many times.  I wanted to swear and tell everyone around me that I didn’t give a damn about anyone and I would say and do what I wanted.  There were times my skin itched, my mind ached, I could not tell if what I dreamt was real or hallucination….it was hell.

A couple of people finally asked what in the world was happening.  I had told no one except my dr what was happening.  I broke down and told them I was going through a med withdrawal and I could not tell when it would be over.  They looked at me with such relief and concern…I did not expect that response.  I expected them to hate me, I certainly did not like the person I was becoming.  Out of care, they asked why I had not said something before, why did I think I had to go through it alone?  Why did I possibly think that no one would care or want to help me.  Instead of making me feel small and weak, they were there to bolster me, to lend me their strength and love.  They loved me no matter how nasty I became.  In fact, they showed me more grace, knowing that what was happening was temporary.  They checked in on me, they asked questions, they did not leave me alone.  I made it through.  I could not have done it without that collective care.

Sooooo many people do not have that.  I have never been addicted to alcohol or other recreational drugs, painkillers, gambling, or other addictions.  I do not know what that feels like….but I do.  I do know what feeling deprived of something the mind and body needs to feel normal…or at least the normal I understood.  I know what it feels like to be alone, or at least feel like I am alone.  I know what it feels like to sneak around, to have almost every waking moment consumed with how I could get a hit.  What could I do….how can I get it…will anyone know if I sneak one?  Will it matter?  Maybe this is not that big a deal.  Maybe they are wrong, maybe I do need this.  How can I possibly be addicted, that happens to “those” people.

Those people, indeed.

I was sooo lucky.  I had people, when I let them in, who rallied in and around me and saw me through that time.  There are tons of people who suffer silently, never saying a word and beat themselves up for what is happening.  They continue muddling through.  Or they refuse to admit that there may be a problem, unable to take steps to remedy it.

I was so lucky.  I do not know what it looks like to battle an addiction that has been there for decades.  I  do not know how it feels to try and try again…hoping that this time it will work.  I do understand how quickly an addiction takes hold, how strongly it grips mind, body, soul.  I know what it is to feel powerless, succumbing to something stronger than myself, forgetting that I am stronger than this drug.  I do not know what it means to sacrifice everything and lose everything to keep a norm.  I am so thankful I have not had that experience.  My heart breaks in a new way for anyone wrestling with any kind of addiction…it does not matter what it is.  I know what dark and twisty feels like and I know what it means for people to pull me through.  I am lucky.

I am also lucky to know this side of me.  I am thankful to catch a glimpse of what a world encased in addiction looks like.  It is not a place I would wish on anyone.  It is not a place anyone would want to camp.  It is not a place that people hope to get to and remain, no one wants to lose control of themselves.  I think most of us would just like the chance to escape or dull a pain that exists, for whatever reason.  I think many of us wonder what it feels like to feel good…laughingly, lovingly, ridiculously good.

I do not have the answers, but my eyes are open, my mind is cleared….I understand…if only for a moment.  I will remain today and always, Addicted.

Hush hush

01 Jan 2014 2 Comments

by cindythea in Uncategorized Tags: , , , , , , , ,

It has been 3 years since I heard the door close on a children’s behavioral unit and left my son there for assessment and diagnosis.  It was the singularly the most scared and vulnerable I have ever felt.  Even though I knew these doctor and nurses well, I had been working with them for half a year as a chaplain, I could not control what went on behind those doors.  I was powerless.

Many of us feel the same way.  The diseases and illnesses that attack us every day sometimes render us powerless.  One thought continues to plague me though.  I have watched as tons of my friends, and as I age, tons of my classmates battle the ravages of cancer….an all consuming claim on mind, body, and soul.  I watch as people I know fight and fight, and rally, and win.  God Bless them!

I have also watched as tragedy upon violent tragedy happen across the US in our public places—schools, malls, movie theatres.  The list seems endless.  I have watched as the number of people without homes increase, I ask myself why.  I watch the news as violent events happen and the first comment made is “oh, they must have some kind of mental illness”  I have watched as people will do things which people do not like.  The response is almost always, “oh, they must have some “issues””

Wait!  How come no one treats other illness as a hush hush swear word?  It’s not as though depression is on the same level as “The name which shall not be spoken”  By the way, it’s Voldemort.  See, I said it and the world did not come to a screeching halt.  Good thing!  Whew!  I thought I was a goner there!  😉

Seriously though.  I want to unpack this concept a bit.  We are so accustomed to hearing of the battles of the seeable illnesses.  As well we should.  The fight is real, it is fierce, and requires everthing of the person diagnosed.  They are not the only ones diagnosed and fighting, it permeates the whole household.  Ok.  If that is the case, let’s transfer that to the illnesses which are not as readily seen.

The rate of persons diagnosed with a mental illness is skyrocketing.  As I pen this I imagine all the instances mental illness   to the top of a list.  How many of us become agitated when the weather turns gloomy for an extended period of time?  Seasonal Affective Disorder… Do any of us suffer anxiety over speaking in public, taking tests, heights….?  Those are better known as a phobias–psychologically defined as a type of anxiety disorder.  This applies to almost every one of us..me included.

I write this as I watch my oldest son twirl a piece of hair on this forehead as he turns circles on his knees in the middle of the livingroom floor.  Reminds me of the old days with a sit and spin…..only this will go on sporadically for hours, just after he attempts to wrestle our pug—resulting in a scratch on his armpit, which will enrage him….what he will not be able to realize is that it was the wrestling with the dog which brought about the scratch in the first place.  He will not clue in to that.  I watch him everyday.  There are days I cheer as loud as I can (silently) that we have had a good day.  There are other days that I hang my head in near defeat…wondering what more I can do….what I could have possibly done…..if there was a way I could take this from him.  I can’t.  I have my own to manage…..

The frustration, if you will, is when horrible things happen (and they are horrible) and we jump to a conclusion of a mental illness which HAS to explain the whole situation.  Wow!  I was not aware we could do that unless all of the research has proven without a shadow of a doubt, that a mental illness is the sole reason.

Take ADHD.  My son is diagnosed with this.  If you do not believe me, spend a weekend with him without his medicine.  You will be exhausted after 2 hours….guaranteed!

I live and love for this kiddo with all that I am.  He drives me nuts…or rather his illness does.  I can never determine what will set him off in a flurry of activity….I rue the days (many of them) where he is up at the crack of dawn, running around the house screaming because he has too much energy and he does not know what to do.  Mornings are hell.  I do not say that lightly.  His ability to transition and focus his energy makes organization difficult.  Mom does much behind the scenes to smooth over anticipated rough spots and tells no one the worry she holds as report cards or conferences happen each school year.  I cringe when I wonder about his friends at school. Some understand him, embrace him, others claim he is odd and weird, and wash their hands of him.  I cannot control that.  Nor can I control the unspoken hurt I see in his eyes when his younger brother is invited to outings with his own friends…and he is not.  Mom again does much behind the scenes to set up play dates so the situation is a bit easier.

Take the family who struggles with Autism.  The hurt, the frustration, the fatigue, the vigilant watch for a change in communication.  I have watched families lock arms and walk boldly into what that diagnosis means.  One of the awful realities is that often families feel like they have no one to turn to.

The isolation, hurt, frustration, the hope and strength it takes to move forward is incredible.

Ask any of those famillies…ask me if I ever believed that my son would ever hurt anyone—illness or not. When we cannot find an immediate answer to a tragedy, it seems unfair to pin it on one of any number of “explanations.”  Reminds me of the lyrics from “Kill the Beast” in Beauty in the Beast.  “We don’t like what we don’t understand, in fact it scares us.  So, kill the beast.”

I think back on that night 3 years ago and the heartache I felt as I left that hospital.  I watch the facebook posts of fellow parents, some I have met, some I have not, who are bravely walking in worlds which have no road maps.  There is not an easy solution, not a course of meds or surgery which can work in tandem bringing about an end or remission from something.  It is there….everyday no matter the day, holiday, or special event.  What surprises me is how few support methods are available for those in the midst of walking in these worlds of mental illness.

Sit down with a parent of an autistic child, a child with ADHD, bi polar, depression…the list grows.  Sit down with a family of an alzheimer’s relative.  Ask them how they feel watching and waiting, hoping and praying.  Ask them the questions, hear the answers.  Ask those who can articulate what having that illness means…ask them about their world…what does it look like, feel?  What do they hear?

The double diagnosis my son has scares the heck out of me every time I go back to a med check.  In a giggle the psych dr told me last time, “we knew he was one in a million….he is just that.  Every time we think we have it explained, he throws us another curve ball.  He will rival every box we try to put him in, he will never fit a true diagnosis.”   That is great and scary at the same time.  My son is one in a million….yes, yes he is.  There are times, like right now…when I wish he would fit neatly into textbook diagnosis.  It would provide answers and a more complete path of treatment.

For now, we move ahead, thankful that so far we have only had 1 hospital visit in 3 years.  If there need be more, I will not hesitate.  I will never stop advocating for him and others with mental illness.  I will never stop looking for ways for families to seek comfort and strength from one another and others shouldering the same burdens.  I will never stop, in the non-profit in which i work, look for options for those with diagnosed illness to find other options of walking through their illness.  What about the impact of a teaching garden to reduce stress and anxiety—re-focusing energy or providing hands on work which aids communication and learning?

I write each year around this time to honor him….my son, the light of my life–one of 2 reasons I am a better person.

shalom,

Surreal

08 Sep 2013 2 Comments

by cindythea in Uncategorized Tags: , , , , , , ,

I have been thinking about death lately.  Now, don’t give me the eye roll and think, oh great, here we go.  Stay with me on this one as I brainstorm some ideas with which I am wrestling.

In the last year some pretty special people have either passed or are in the process of passing.  I am not sure why I cannot say with certainty that they died.  It feels almost like a sware word, or like on Harry Potter, the name which shall not be spoken.  I began thinking about my life, the fact that I recently turned another year and what that means.  I also thought about the process of transition from here to the next.

Now, I have taken my grief and bereavement classes and achieved the requirements for pastoral care and counseling.  They never really prepare a person to walk through that journey with another person.  So I thought about what it must be like.  The idea is daunting to say the least.  I mean, one minute you are there….doing whatever it is we are to do.  Then the next moment, what?  Is it like instantaneous?  Is it like the blink of an eye and then a transition occurs?  I don’t know.  I would venture to guess few, if anyone, can answer that question.

I think about those moments where an accident occurs and upon reaching the scene, and knowing there is nothing that can be done, what does that instant moment look like?  I believe there is a life and a destination when we leave this place and time.  I  do not believe that we are random or out of reach from a Creator who has a Divine plan.  I believe that something awaits each of us, something magnificent and unimaginable.  It is almost too much to consider.  In the situations where a long and painful illness occurs, is that last moment steeped in understanding and an absence of pain?  How does one know that this is IT?  How do we know that the transition is approaching, medical assessment aside?  Is there a definite sign?  Is the person passing accepting, much more so than those present?  What is their knowledge of that moment?  Is it resignation or a release?

All this thinking has me contemplating life as well.  In a surreal way I have, at times, come to a real understanding that I AM HERE.  I exist.  I have height, depth, movement, thought, and capability.  Not by mere coincidence I am here in this time and this place.  No one thinks the thoughts I have, the moment I have them. As individual as an eternity of snowflakes, so am I.  That is mind-blowing.    I have touch and an awareness of all my senses, I have not been created an animal, incapable of works, emotions, dreams, and actions.   I hurt, emotionally and physically, I walk, talk, interact, sleep, eat, drink, any number of menial tasks.  Are they really as menial and insignificant as many of us believe?  I think of those who are not able to perform the simplest of action or thought.  What does the world look like?

If I am as individual and un-reproducible as I believe, what is my obligation in this time and in this place? How does one embrace a life of lived fulfillment and not existence?  How is that possible?  If it is one steeped in existence, was that a moment in history missed?  Is my definition of a life lived exceptionally limited by my small world and after life knowledge?  To expand that would require?  Am I willing to jump into that mix and explore the necessity of our impact on one another and the world around us?  Am I willing to think of the legacy I choose to leave behind me, or am I content to remain quietly moving from place to place until the inevitable happens?

I don’t know, I pray this is not morose or depressing, but an invitation to thought and contemplation.  These are not questions with easy answers, nor are they ones that I can answer for anyone else.  As I rejoice in memories of those who have died (ouch) and those who are actively dying, I think also of the meaning of the here and now and what lies beyond what we see.

shalom,

cahl

 

I was READY….to quit.

07 Jan 2013 Leave a comment

by cindythea in Uncategorized Tags: , , , , , , , , ,

As a little girl I was allergic to EVERYTHING!!!  I mean everything made me sick.  Sugar, milk, citrus, and most spices sent my stomach into fits of pain and bloat.  While all of my classmates celebrated birthdays with great cakes laden with tons of multi colored frosting, I looked longingly at huge slices of cake and tall glasses of ice-cold milk.  Both items would have sent me over the edge and seen me visiting the bathroom each hour.

I snuck it when I was a kid, even retreating to the basement to drink a shot of pure syrup out of the bottle.  I got in major trouble when I was a kid and my parent’s found out, it is a little funnier now that I am older and can picture my sons doing something similar.  I think that most of the time I was not sneaking goods out of some evil plot to undermine my parents, I think I wanted to know what it was like to eat and taste like everyone else.  I got so sick of diet candy, many of which contained some dye or sweetener that I could not stomach either.  The sight of diet pop==TAB cola made me want to yak a good yak.  I had uncles (my uncle walt) especially, who would throw me a treat at special holidays once in a while–usually my mother saw what it was…hours later as I was sick in the toilet.  To say that I was stubborn and unwilling to listen was an understatement.

All through school I watched what I ate, what time I ate, and how much.  I got so sick of peanut butter sandwiches that I cannot stand the sight of them to this day.  Remember they would be only peanut butter no jelly.  My fruit and veggie intake also had to be monitored because too much citrus or too much ruffage caused even more problem. Dry cereal took the place of dry toast, and hot dogs and hamburgers were eaten with no ketchup.  I grew used to this, and sometimes my parents would make something special.  I craved rice with raisins and cinnamon.  Today, I would rather have a meal of “real” food than a bunch of junk,  to eat a donut in the morning is almost unheard of in my world.

After years and years of battling I got pretty good at predicting what I could and could not do.  As I aged and stress levels increased I noticed some other issues arise.  With the more stress, the more intense the pain I carried.  The more worried I became, the more intense and sick I felt.  My stomach became a barometer for what was happening in the environments around me, and for many many years it has been hell.

Tension and stress gave way to acid creeping up my stomach into my throat and I choked back chunks daily.  This got worse and worse until doctors discovered that I could lean over and cause acid and reflux to rear its ugly head.  My first colonoscopy was at 25 when I ended up in the Spencer, IA hospital for a couple of days.   Procedure after procedure I endured…radioactive eggs, barium drinks, more radioactive eggs, CT scans, more endoscopes and colonoscopies than any person should endure.  I endured.

In the last 3 years I have seen almost 20 polyps some of which have been cancerous, many pre-cancerous.  I have awakened at night in pain, refrained from eating because I was in pain, and undergone a laparoscopic nissen and the removal of my gall bladder.  Whatever organ which is not necessary has been removed, except my appendix.   Up until the last month, I believed my life was sentenced to this roller coaster called my stomach.

You see, not so long ago I sat with my adopted file and it spelled out in great detail much of my early life, including how my biological parents interacted with me.  The file described a pre-mature baby who had really bad gastro problems from birth.   The implication was that there was not adequate pre natal care and improper feeding taking place.  There was also mentions of bottles of beer being fed to me as well as bottles of straight formula given to me as a newborn.  This caused so much internal damage that we believe it will take a lifetime to recover-if ever.

Knowing this information, coupled with my track record had me so depressed and downtrodden.  I felt like I would always battle to feel level.  I was ready to quit.  I dreaded every doctor appointment, had seen too many ER visits, and found most pain medicine made me sicker.  I hated get togethers where good food was on display, I ate but within 20 minutes I would be sicker than a dog and regretting that I had eaten.  I lived this way, day in day out for 38 years.

Until now.  I found  a gastroenterologist who told me that he would not stop until he had come to the bottom of the pain (no pun intended).  No one had ever treated me like that before, no one had promised to care for me until the pain was gone.  Every other doctor looked at the symptoms and treated them, making me endure procedure and haphazard guess, none of it alleviated the pain.  I cried at night, dreaded every meal.  Now that I am in a drug test where it appears I have received a drug which has cut down on the pain and other unpleasant side effects, I can think of more than where the closest bathroom is.  I can see beyond the last meal I ate to thinking about how to feel even better.

I did not care, really, until a couple of weeks ago, what my future held.  It felt like each day was more of the same and the colors were always grey and dreary.  Never did I feel like running down the hill, grabbing after the sunshine and laughing.  Today, I feel a bit differently.  I am just under halfway through the drug trial and my pain has decreased from a solid 8 to a 1 or 2 and the number of bathroom visits down from 8-9 to 1 maybe 2.  This is monumental in my world.  This is freeing in my world.

The effects of all the damage may not be gone, I will have to watch the inflammation and scar tissue for the rest of my life.  There will never be a time when I won’t have to have endoscopes and colonoscopies, I will have to watch them carefully–constantly aware.  Today, though I received my next dosages of medicine.  I am more hopeful than I have ever been.  In fact, I made a decent batch of banana bread and am looking forward to eating it.  I want to eat it.  I am thinking about a work-out regime not for 2013, but for me personally.  I want to feel better, I want to feel more physically strong, and if the insides are healing, I want the outside to match.  I want to experience what WHOLE body and soul healing looks and feels like.  For the first time I am willing to consider what tomorrow looks like…I have never lived like that.  I never wanted to think that there would be a tomorrow.  I was ready to quit…to embrace the rest of my life in a dark tunnel where everyday looked exactly like yesterday.

I don’t want to live victim to a past, a present, someone else’s reality, or a pre-conception of things being one way because they have always been that way.  Damage may have been done, but I do not have to exist victimized as a result of other’s actions or inactions.  I can live–I can live healed.  I am not sure what that looks like, but in the days and weeks to come I intend to explore that idea…I invite anyone and everyone to come along on the journey…if you have ideas or comments….please let me know.  Let’s do this together…let’s live this journey together.

Shalom,

cahl.

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