Tag: #highlysensitivecrohnie

Posted on

Dear John ….. a birth and death… full circle at the Grand Canyon.

Wow so because I am going to post this letter I went back and revisited it. First of all this letter was written February 22nd 2016. It feels like lifetimes ago this happened. We reconnected on June 12, 2010, had a relationship via e-mail, never saw one another in person, until around January of 2014, and around that time I was at the height of discomfort with my disease and seeking understanding and lashing out at the things I couldn’t make sense of. It was around this time he cited that I was exhibiting frightening mental states on a public platform, and reminding him of my mother. And that was it for us. I didn’t have it in me anymore to be abandoned again. I chose not to abandon myself and my needs in the name of reducing anyone else’s discomfort.

I lost a relationship that I had always dreamt of with a father, I called off a wedding to a person who was the safest place I had, her and her family. I risked harming my children, and miles and miles of criticism from others. I was more alone than I have ever been in my life.

One of the things I didn’t realize until re-reading this today is that it was something in the book Big Magic, by Elizabeth Gilbert that helped me write my way to my own closure. This morning as I am reading some of the things that felt so amazing to hear from him, and then some of the things I wrote, and some as we fought, it tears the wound right open.

John Rexford Wilson (my father) died on December 28th at 11 am. He died from tuberculosis at 70 years old. He did not believe in the healthcare system. My brother stated they would be scattering his ashes at the Grand Canyon, and that he would keep me updated. He didn’t. I was not included. Once again the illegitimate. But in the end I chose to let go of him or my ideas about him, and any relationship we did form, because it was the healthiest thing for me.

My mind is trying to tell me now as I read the few nice things he said to me (the things I would try and gather the crumbs of to make something whole that didn’t exist), that maybe if I wasn’t so difficult I could have maintained a relationship with him until he died. We could have left on good terms. Time and time again I see people as this their biggest fear when it comes to not abandoning themselves. But what if we have a negative interaction and then the person dies. Well that is exactly what happened here. But only if you focus on the time we were in contact. What about when we weren’t? Wasn’t that his responsibility? Wasn’t he the parent? He just spoke so pragmatically about it all, about how men are and in those days. Like no big deal. Like it wasn’t a big deal to me. He didn’t allow any space for my feelings, and this is why I’ve dedicated my life to trying to allow space for people’s feelings, and to have enough room by doing my own work to be able to do this. It has taken lifetimes of healing.

It is so interesting that all of this comes up for me at the Grand Canyon. I never even thought of this. It all just came together right now. And about how I just met Elizabeth Gilbert and thanked her and why I cried so hard when I did.

Here I am at the Grand Canyon, where my father’s ashes are possibly spread, and feeling all of these things, that I didn’t know where they were coming from.

Here it is, full circle.

Dear John,

 

I was reading the end of Elizabeth Gilbert’s book “Big Magic” this evening. The section on Trust. Where she speaks of the difference between martyrdom and the trickster and how to find “lightness” in the pursuit of your passion versus a commitment to “being the tortured artist”. I for very many years had been committed to my suffering. It is the only way I knew how to be until I didn’t. I have contemplated greatly over the subject of “too much introspection” and your words on the matter, and your feelings. I have gleaned a lot from that in terms of finding balance in my own life. I wanted to thank you for that. I even use it with my clients in private practice. It is true you can overthink. However I happen to appreciate the way that I think things through and it has served me in my pursuits. 

 Today I completed the first day (my orientation) at Wheeler clinic. I was recently hired as a senior clinician, heading a team of people in efforts to ease the transition of foster children who have struggled exceptionally into their new homes with their families. This is my first “big girl” job with a real salary and benefits and all of that good stuff. At 35 this is my first time knowing what it feels like to not struggle financially and to feel secure. In addition to this over the past couple of years I have done some amazing self work in leaving old wounds behind and finding a “lightness of being”, one that I never even imagined could exist. I feel as if I will finally write the way that I have always known is in me, I just have never trusted myself enough. Trust has not come easily for me. One of the most glorious parts of getting to talk to you was recognizing the writer in me that I believe came from you. I believe I have lots of parts genetically that came from you, and I am grateful for them. 

 In addition to the new position I have my own private practice that is thriving and for being a clinician fresh out of school I have a lot of people referring to me, and the consistent feedback is that I am helping people move further in their journey toward growth than they previously have been able to do. It is rewarding and I never would have gotten to this space without the entire process of self-doubt, fear, and a  degree of introspection (not to be confused with rumination). Without that whole journey I would not be at the space I am in now. I was thinking about this tonight, and my heart got heavy. It got heavy because you’re missing out on all of it. This is not even the most important part of the greatness that I have created in my life. My children. I have 3 intelligent and phenomenal human beings that I helped create and they are beyond wonderful. Everyone feels their children are wonderful, as well they should, but these kids are so special. They bring so much to the world with their kind hearts and very bright minds, and that is just barely scratching the surface on them, and again you’re missing out on it. Then I thought to myself this is probably mostly a projection and not a reality because its all subjective to each person’s own human experience and I doubt that you feel or realize that you are missing out. Not because you don’t have the capacity, you most certainly do, but more because of your commitment to the choice you have made and as you told me at the time you were not interested in rehashing any of the past but only to move forward. I desperately thought I could be willing to take any amount of being allowed to know you no matter what the cost to me. But the process by which all of my feelings existed is natural, wondering about a great many things that I never understood is natural. It is not only natural but also warranted without it causing shame to me or that my process is invalid. 

 Of course I hurt. Of course I wondered why we were not in touch, or how you didn’t wonder about me and how I was doing. Of course I wondered if it was that necessary to never have contact with my mother again, to pay the ultimate price of not also being able to know me. Especially since those things never needed to be connected, they could always have been independent of one another, thought maybe that at one point felt impossible, or maybe that never mattered anyway and it really is more of just a choice of yours. Of course I wonder all of these things without it being shameful or wrong. 

 I could sit and tell you all the wonderful realizations I have had and sell you this idea of everything you are missing out on, but ultimately that process is about me and nothing to do with you and how you feel. The fact remains that I would try to be impressive to you in some ridiculous effort to feel loved. It’s what I’ve done with everyone I have ever come across to try and earn their affection with my merits and my effort. An exhausting pursuit to be sure, and also that has nothing to do with real love. Real love allows space for all of the parts of someone to come fully into their being in whatever process is needed. That is the kind of love I needed to find to become comfortable in my own skin. I had to stop searching for it from a million different resources that looked like a well in the middle of a desert, only to be dry at the bottom when I lowered the bucket. Ive been doing that process my whole life when all the while just over the next hill was an entire ocean. I am sailing right now and smiling and my heart is still heavy that you’ll never be on this boat with me. For whatever reason that is. I won’t tell myself its because I was too sensitive or I was out of line by expressing pain in any way shape and form. I won’t deny myself those feelings they are mine, and they are valid. But what I do take back is any amount of making you wrong or hanging onto any anger. I release myself from that prison. I don’t need to understand. I wanted to see or know or be a part of your process or feelings or anything with you. A romantic notion to be sure that is again more about me and my heart and the way that I work, than it is about anything I have missed out on. I am not missing anything and I do not need anything. I want to share my thoughts and my mind because it is the truth of my feelings and for no other reason than that. 

 As with most things in my life I moved very quickly through being terrified having Crohn’s Disease would turn me into my mother, or that it would ruin the rest of my life. At the time it felt like a death sentence, at the time I felt afraid and alone. I see that person now and only have compassion for her, a compassion that it appeared at the time you were not able to find. I would like to say i would just move forward and embrace your pragmatic probably well-meaning advice and renounce taking what happened so personally, but again that would deny myself the natural process I was having, and it would allow me to accept a relationship that was also unhealthy, one that was based on the convenience of you experiencing an aspect of me without knowing much about the real story, like reading only a chapter in a book and making a decision about it’s value. In real love we don’t get to weed out the undesirable aspects or parts of the story and keep the ones only that we want. If you need to chalk me up to emotionally unstable by association of your experience with my mother, if that is the process which you need who am I to stop you. 

 Amidst the wreckage of all of the old versions of me and many dysfunctional relationships has emerged a person who is powerfully influential to the world. A person who refuses not to feel every inch of everything even when it burns. I am a writer and I choose to only be grateful for getting some of that from you, but the credit for getting to the place where it can begin to come to life is all mine, and at least I get to know that. I get to know that. I will always wonder about a great many things with regard to you, but everything that truly matters is within me and I am ecstatic for this existence that I would not have without you. I can thank you for that regardless of what feelings may come and go. 

 

Thank you,

 

Christina 

 

Posted on

What ever happened to Lisa?

grief2

I’ve fashioned myself into the therapist, and left behind the survivor. I wanted to move past, beyond, ever away from my own trauma. It is only recently that I realize how much it is still with me today. I am reading the article “Touched by Trauma” in the most recent publication of Counseling Today.

I tend to move so quickly through life that I see the magazines on the desk, but rarely read them. Why wouldn’t I read what others are saying in my field? I wonder if I avoid it because of realizations like the one I have had just now? It can’t be that though, because I read many many books and articles on such topics, but I tend to ignore magazines, perhaps I regard them as more a waste of time like tabloids, People Magazine, and Entertainment Weekly.

Perhaps I am so hyper aroused all the time that I can’t focus for hardly a second. Perhaps this is not your garden variety ADHD, and something a lot more sinister. That requires a lot more attention that I have ever given it, because then it would become more real. And the fear is always that suddenly you will fall apart, or become swallowed by the associated feelings. They are too big, and there is no way to properly control how much of it you feel, when you are recalling. 

I never connected how much my Crohn’s Disease is probably an effect of my trauma. Instinctually I know, have read and seen how much cortisol, the stress hormone is bad for you. The article says, “Counselors also need to be mindful of the accumulative physical toll of long-term trauma. Research has shown that experiencing trauma- especially when it is prolonged and repetitive- rewires the nervous system in ways that cause hyperarousal and persistent anxiety. This continuous stress causes the body to release cortisol, which can cause chronic inflammation. Over time the inflammation leads to negative health effects. To help counteract this cascade of neurological and physical damage, practitioners can teach clients skills for calming their nervous systems. The treatment should be tailored to the individual client.” 

I’m still peeling back layers of my own abuse. 

When I read this I made an immediate connection. I have been inundated with physical health issues for the last 10 years of my life. I had problems as a child, asthma, and I’ve always identified as a hypochondriac. I was in and out of the hospital often. For awhile youth and enthusiasm to get away from my painful past kept me busy and disassociated from physical symptoms, but as soon as I realized I was not in the right marriage for how I was made and who I am I began to have a lot of problems.

It all began with heart palpitations. These sent me to the Emergency room several times, it actually took me years to realize, or have suggested to me that I could have anxiety, and it was not done kindly ever. It was more like I was too sensitive, making a big deal out of nothing. Anxiety was suggested to me as a personal flaw, not something that required further inquiry and comfort. 

Right now my family is out in the living room playing Trivial Pursuit. I can hear them and they are having fun, and to be fair so was I until my stomach began to bother me and I had to excuse myself. Once I read that and made a connection I went away to the place I so often reside, somewhere in my head trying to figure it all out. I’ve made the mistake of trying to figure it all out at once, because then the idea is perhaps I could be free of it. What it? I didn’t know what to call it. When we don’t know a language for something we tend to automatically internalize some fatal flaw within us. 

I just had a severe ringing in my ear, it happens sometimes, it came on suddenly. I have read more on symptoms and health than the average person probably ever will. My first thought as it happened was that my blood pressure is at some bad level and something is going to happen to me. I probably think about myself or someone I care about dying or suffering some terrible fate no less than 100 times a day. I can’t ride in a vehicle without jumping at any unforeseen occurrence. I am only now at 38 years old connecting so many of these dots.

I am able to do so because of this career as a counselor. 

I can still help people, in fact I am very good at helping people, AND it distracts me from my many anxious thoughts. This dispels the myth that you have to be fully healed in some capacity to be a healer. You just need to be healed enough to not unintentionally harm others. You have to be aware, and a good deal of the way towards acceptance of self and others, otherwise you can use someone else for your own needs. 

It has never occurred to me before this article and this point to be upset I have this disease, and a weakened immune system due to the trauma I have endured. I have worked so hard to keep myself separate from my beginning. I moved across the United States to get away. Another life and another me. I disconnected myself from it so much, that when I had a difficult time maintaining relationships all I experienced as a result was shame. There was no one to help me connect my triggers, behaviors, and anxiety related impulsivity, attachment fractured impulsivity. There was no one. Mostly I have lived marinating in shame and self-abuse as a means to shame myself into a new way of being. it never worked. 

I have so many thoughts to untangle about this. But the one this evening most prevalent is what in the hell happened to my mother and to her sisters to cause the type of toxic sibling rivalry that permeated my childhood. Who was the evil villain and how evil were they? Who is at the root of this, and how much damage has spread through the family tree? They worked so hard to look different than whatever hurt must have occurred, but my childhood felt terrifying in a variety of ways.

I have tried to minimize. I have tried to make myself responsible. I have tried to convince myself that it’s me who made all of this up. It’s unbelievable even to myself. I want to say I dramatized it. How can I trust any of those memories after all. But some of the memories I do know for sure. I know the gist. I know how I felt. And I know what I struggle with today…. and most importantly that this is not my fault. 

I can’t even say that and feel connected to it. It feels dramatic. My intense feelings have always been shamed. ALWAYS. By family, friends, and loved ones alike…. validation is not something I’ve had much of. I’ve often wondered why nobody saw me, why they didn’t notice a good heart, with behaviors that didn’t make any sense. So many people rarely look beneath the surface for answers. 

Where was that one person to come forward and help everyone make sense of it? 

People suffering from complex PTSD without being noticed are wounded warriors with no decoration. They have no percentage of disability, no purple hearts, and in fact are mostly invisible until they find their way into a Counselor’s office. Probably they will spend most of their life plagued by terrible thoughts that something bad will happen either to someone they love or to themselves. Running horrific scenarios through their heads. It will be difficult for them to travel or live any kind of a normal life unless they are disassociated enough to appear functional, but inside is a whole other story. 

My daughter came in to be snuggly and I was intense and in my head as usual. I want to erase this out of frustration. It will be seen as deep and dark, and no one wants to be seen like that. The kind view is no one should have had the experiences that cause them to feel this way on such a regular basis. With your kids you are supposed to be the parent, and present, and none of this is really something they can understand. So I only appear like I don’t care, or I am not present, then I feel guilty for being this way. Then I am shamed by my ex-husband, society, parents of the partners I dated before I connected any of these dots. Seen only for my behavior and my flaws. 

I want answers. I want to know what happened? I want to know if it’s fair to be estranged from my mother to protect my mental health, or if she too was a victim of some trauma I don’t know about and something could be done to heal it. The hope is always there that something could be done. With me healing was possible. What is the difference? Is it in the wiring? Could she have been wired from birth for narcissism, or was she so damaged a health self could never emerge, and if that is the case how can I make sense of any fairness behind all of my feelings towards her.

Where can I place this accountability if not always in myself? What if she never stood a chance? I never did either, but somehow I thrived and turned things around. Is the difference between us the severity of experience or the wiring?

I need to know. 

I don’t want to know.

I need to know.

I don’t want to know.

I distract by staying in the present, but we are never free from trauma that forged our entire nervous system.

I am a prisoner inside my own body is the dark side.

And I am a warrior of light and a protector.

If that isn’t confusing I don’t know what is.

Posted on

Ivf Retrieval Day

It’s retrieval day!!!!

It has been feeling like the (an) end to this journey, but it’s actually just the beginning.

It’s the end of hormone injections and the related symptoms, and the end of a great many questions and nervousness. The end of three failed iui treatments and all the associated emotions. And yet it’s the beginning of an even more intense period of waiting for phone calls from the lab on the development of our little one (ones).

It’s beginning again down a road into a dark forest and not knowing what’s on the other side.

Will we get lost in there? Another gigantic disappointment, another cycle to wait and more hormones before a frozen transfer if this one doesn’t stay? How much of this roller coaster can we take? It’s been such a wild ride. But for the first time in my life even amidst sometimes crushing disappointment nothing feels like life or death.

I never even pictured having another baby, ever.

I spent most of my life worrying I didn’t deserve, nor was I up to the task of the first three. So to find myself standing here, calmly walking toward my next dream with confidence and joy. It is a dream like no other. I’ve already won the lottery, and written the best seller, and recognized my singing voice on stage in a moment of sheer shock and gratitude. Finding my love already feels like all those things mixed.

It has changed me so profoundly I am becoming rewired.

So many of my anxieties are calmed. And this isn’t a momentary high from idealizing something that turns out much differently. This is the real deal. Steady on my feet and walking headfirst toward another amazing dream, one I never saw.

It’s not very often life surprises me.

This is because whenever it did when I was young, and that was often, those were not good surprises. I became hyper vigilant and carefully in control of each happening to avoid further pain. But that has its side effects. And finding this love has surrendered me back into a childlike dreamer I was always meant to be.

I’ve turned my Stephen King movie into a John Hughes one. Sorry Stephen I love your work, I just wouldn’t want to be in one…. again.

And I used to be too fragile to be in the creation of a dream. Any setback would crumble and tumble me, and lead me down a path of dark thinking and misery.

Now I am finding faith and a well balanced way to view reality.

So it’s neither fantastic or terrible, but a mixture of both of those moments on a steadfast bridge of love.

I have a family of best friends on there with me, and I’m finally adjusting to life in partnership and belonging that I couldn’t feel I deserved before. Now I am accepting this as my life, and everything that comes with it.

So here we are…. I’m about to be a “nearing 40” new mother. Here I am, the happiest I’ve ever been.

At another new beginning….with knowing there will still be so many more.

Posted on

My breaking writer’s block, and my broken body

I am relieved to find that as I began to read this morning, all of my own words began to take precedence over the page. A lot of times that’s how it happens. I’m also a little surprised because I feel too weak to even write. Reading felt somehow more resigned from my usual 1000 watt glow. Just after I wrote that line I felt immense gratitude for my mind and my self. Not everyone has this drive. There’s a dark underbelly to it though, and that’s a whole separate blog post, that isn’t quite ready to emerge from the Koi Pond that is my mind. Picture an over populated one with the fish frenzied and panicky and you might have an idea.

I had a Crohn’s attack last night. I have to get this out first so I can move on from it, otherwise it will impart a tone of sadness or less sparkle to my post, and you, the reader won’t know why. It’s been so long since I’ve had one I almost forgot I have this fucking disease. I think the fact I am able to forget for periods of time is a genuine blessing, and I also attribute it holistically to the peace and happiness I have found in this half of my life.

The attack goes like this this time. They can be different, and come on without warning. I typically limit myself to one drink these days as alcohol works very poorly with my system. This fact makes me feel socially stunted in certain ways. I’m at times jealous of my pals that can “have another round”, and not pay some price. But I’m finally getting over my id, and being able to accept my special instructions. I used to get really down about it. Severely worried I could turn a fun evening or getaway into a pity party for me, and inconvenience people by needing to leave quickly and without warning. I’m overwhelmed easily enough in those situations, without my body rebelling against me as well.

I had a cavatelli pasta with lobster in an old bay cream sauce. I also mixed some of my friends salad with it, because it was just sitting there. She was selling solar at the dinner table, and I was reading a debut blog post that I’ve been anxiously anticipating. Not the present dinner I would, normally go for, but I match affect almost naturally at this point. And there was live music, so struggling to hear one another was annoying me anyway.

The salad was probably the nail in the coffin. But I’ve realized by this point it’s not fair to me to try and figure out what I’ve done wrong in the scenario, sometimes I’m just fine. But any creamy sauce mixed with salad usually marks death, but I had been spared for so long that I forgot. I had one martini with lots of food drawn out over the whole evening. So when I became very dizzy when I got home, I couldn’t understand what was going on. My heart began to race and I thought maybe it’s just exhaustion let me lie down.

Next thing you know it’s 2 am and I wake up with my heart beating around 120 bpm, feeling like my stomach is simultaneously on fire, and also being squeeze and writhing like a boa constrictor trying to make its way out. I break out into a sweat all over. I barely make it to the bathroom, and while I’ll spare you the more gory details, the fact that much of anything can come out of one human made me actually feel like I might die. I felt as if all of my insides were being purged, not just the contents of my bowels. It hurt so excruciatingly badly that for a few moments I debated calling for my wife (what only to disgust her and embarrass myself, what could she do anyway), calling an ambulance, and then went down the path of wondering what they could do or would find. It started to radiate all through my back, aching, twisting, and the sharp chest pains that used to send me to the ER.

After a bout concluded and I was given sweet relief for a few brief moments, my heart rate would be down in the 70’s and I would begin to shiver violently. I got back in bed with my wife, she was loving, covering up my cold parts and becoming comforting, rather than annoyed she was dead asleep. She is a blessing. She asked if I was ok, I said no, but I refuse to begin panicking because once that starts it’s really hard on my body. So if I got her all up and concerned I would feel even more anxious.

I was hoping I could settle into a coma induced rest after that. A sweaty, tangled, dehydrated mess, thrashing between hot and cold. But then I heated up again and felt as if my face was burning, and my heart was high again. It was time for round 2, 3 came later. And by the time I went to sleep I know I was dehydrated enough that IV fluids would have really helped. I used to feel safe at the hospital and like they would be kind and comfort me. After so many experiences and them not believing you (before diagnosis) I’ve had such poor treatment at times, that I will be on deaths doorstep before I go.

As predicted I woke with a monster headache, squeezing and pulsating behind my eyes. And a weakness that could only be described as feeling like a corpse that has been summoned on All Hallows Eve. A lead block could have become mobile easier, but nevertheless I am a slave to my writer’s mind which wakes promptly around 6 am and will not stop yammering until I get it something to do.

So here I am in my beloved bath. I was very careful this am and even thought of skipping it, as losing even sweat at this point could probably put me in a life threatening situation. So the water is tepid, and I pre-gamed with slowly introducing fluids, a banana; a couple crackers and a Tylenol awhile before. My head is still pounding, but after being through hell much of the night, the water soothes my screaming joints, and cleans the stress and suffering off.

This seems so unfair my inside self throws a tantrum, the outside self unsure she can even make it out of the tub, let alone move or make her head throb worse. I should only feel like this if I were irresponsible and drank a ton and am hungover. Who gets the hangover without the party. The self pity is a seductive mistress. If this went on as it did before diagnosis for weeks, and any food became Russian roulette, perhaps it would get me again. But it never helps. I’ve learned I just have to care for my body better and be kind to myself when this happens. To not become enraged at the time it took from me, especially in recovery. A vibrant hyper strong woman reduced to barely being able to pick her head up.

I just go back to how blessed I am in life and love, and believe it will pass, rather than running all the scenarios and what if’s as I used to. This one snuck up on me so stealthily though. I am sad and hurting, while also trying to hold to the determination I have, and joy I feel writing. I must give myself permission to lay my truth on the page, and not believe that I needed to be able to whip up something witty and charming, to be able to take up space in the world. To not fear others as me seeking pity. I am seeking solace in the act of writing. And if one soul finds this kind of determination inspiring then amazing. If not I still have these thoughts written down so I can see myself in a compassionate light. I just want to hug her, and this was not always the case.

You see here is what’s been happening in my mind and my heart. First, I didn’t know I would spend most of my post on this, I expected to gloss right past. So this post shows me how much room my feelings around having this disease need, and how cathartic to write my truth as I’m experiencing it.

Truth be told whether it’s wanting to make sure I’m determined, or whether it’s another aspiring writer’s courage, it looks like my current writer’s block might be broken. Maybe yes, maybe no. The block itself I am recognizing has been caused slightly by the all consuming nature of trying to conceive. That’s actually what I meant to write about. How I can hardly think or focus on anything else. How even if we don’t talk about it, or take the advice of others “just don’t think about it”, wouldn’t that be nice.

It hangs in the air as if it’s one of those machines that freeze everything, but myself and my wife. Our journey is in movement, and the rest of the world is frozen. And I can’t move or breathe until we get that positive. And I can’t even know how I will feel, how she feels, how my family feels, because we are experiencing a great in between right now. Right in between a before and an after.

But you know where I’m not anymore? Purgatory.

I’ll be happy everyday for the rest of my life for this new in between. And I’ll take what comes, with as much grace as my fragile human heart can muster, including the ambiguities of this disease. Because love is my lighthouse, and no matter how rough the seas are, I can always find my way back to my heart now. We are not separated.

Posted on

PTSD, Stephen King, aspiring writer, and FEAR(S) running wild….

I think I’m getting sick. Ugh. My head is all fuzzy and fluffy and I just feel a genuine sense of being ill at ease in my body. There is a lot of pressure in my head and my ears keep popping. Yesterday between Clients I battled a migraine all day that finally won by the time my time was my own. I couldn’t get comfortable and hardly slept. Remnants of the migraine have threatened to come back today. I am not sure which is more responsible for my nervousness about something feeling “off” in my body; my Crohn’s Disease or my PTSD. Often my thoughts tend to find themselves preoccupied with thoughts of death. The better my life gets, the more at peace I am, the more these little monsters gnaw. My theory is that the writer in me as Anne Lamott says;

“The climax is that major event, usually toward the end, that brings all the tunes you have been playing so far into one major chord, after which at least one of your people is profoundly changed. If someone isn’t changed, then what is the point of your story? For the climax, there must be a killing, a murder, or it can be a killing of the spirit, or of something terrible inside one’s soul, or it can be a killing of a deadness within, after which the person becomes alive again. The healing may be about union, reclamation, the rescue of a fragile prize. But whatever happens, we need to feel that it was inevitable, that even though we may be amazed, it feels absolutely right, that of course things would come to this, of course they would shake down this way.”

is always trying to come up with a dramatic and unexpected ending. I mean isn’t there another way to do this without my immenent demise. Come on brain get on my side already.

Perhaps it is the inevitable part I mean. Why am I always trying to write a tragedy or the emotion I want the reader to feel is what coincides with the heroin’s end just as life get’s easier for her, just as she can have peace. It is as if peace was that unreachable, as if it was never hers no matter how hard she worked. She struggled her whole life to reach her dreams and bask in them for just a brief second before her end. Why is this the ending I keep seeing for myself? Why does anxiety rule so much of my land? It is exhausting. If I am the creator then why does the story feel like it’s trying to take a life of it’s own. I have a hunch that it is my existential roots rearing their pragmatic heads. I know, have always known that there are no guarantees and that “life can change on a dime”. This last line being in my head I can quote to having begun to listen to 11-22-63 by Stephen King. I am about 36 minutes in.

It’s an interesting tale of how I came about to be reading Stephen King in the first place. Let’s see my first knowing of him at all was when I worked in video stores (circa 1996) and would see movie covers for Carrie, Pet Cemetery, and KujoActually to this day I have never read or seen those movies. I think I read the Tommy Knockers during my young traveling days when I moved from Medford Oregon, to Moses Lake Washington (where I would give birth to my first born). I never even saw the original IT movie, while most of everyone I knew had. Several years ago to the movie Stuck in Love was recommended to me (I am trying to remember my whom, it was Ash I think ironically enough, that is a whole other story). Anyway in the movie one of the characters gives his girlfriend the book, and they share an intimate exchange where he says that she will cry in the end. Cry I thought? I thought this was a horror novel. It was enough to pique my curiosity. However due to my appetite for life and my many varied interests I still have not finished that on audiobook or paperback, yet I have finished The Dead Zone, Bag of Bones, am about 1/2 way through Lisey’s Story… and I have seen the new version of IT. Later someone I am a big fan of, brought Stephen King’s Memoir On Writing to my attention. It has one of those jacket’s that is soft and buttery to the touch. Of course now it is all worn from carrying it everywhere. I blew through the first half all about him specifically, but I couldn’t bring myself to finish it. This unfinished book is because it was so dear to me and so good I couldn’t bear to have that feeling of loss when it was over. So it remains unfinished. I don’t know if there really is a mystical meaning to this madness of reading a little of this and a  little of that, and the timing of when things cross my path, or if I just need to get my ADHD in check a little better. As I am writing a thought just crossed my mind, mine is a lot of acronyms for anybody to live with; ADHD, PTSD, HSP (highly sensitive person), IBD (inflammatory bowel disease)…. hmmm. Being sick scares me extra because of taking Humira and having a compromised immune system. I am waiting as usual for the story to take a turn that somehow feels due (again why I don’t know) where I end up having a real and true scare with a hospital visit and an infection I can’t seem to fight, like they warn in the fine print of the brochure. Why do I feel like a ticking time bomb? Why does it feel like I am due for a bad bout of things, and all the stories about these possibilities are regularly run pieces in my mind?

Some information about PTSD and feeling dread that the future may be shortened.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4166378/

Sig is driving me crazy. He’s in tasmanian devil mode and it feels personal, as if my attempt at writing while already not feeling well is being utterly sabotaged. As I roll my neck and close my strained eyes, taking in a deep breath and attempting to block it out. Just as I do he ramps up and barks as loud as possible and smashes into my laptop. One of my least favorite parts of not feeling well is the irritability that goes so against my natural enthusiasm for life. I can’t stand feeling on edge to the point I grit my teeth hard just to maintain control. All of my muscles tighten. My already high priced small window of attention sits like a train that has been de-railed. Frustration sets in. Heartburn blazing through my esophagus threatening to burn right through. Sometimes I feel like I might go up in flames. No one is home right now which amps up this anxious feeling. If someone was home then they could at least find me if my now 2 day long stint of a head filled with pressure turns out to be more serious. What is the acronym for hypochondriac ? Add it to the list.

Well this took an unexpected turn. Tomorrow is a badly needed day off, though as of late taking care of the dogs is actually as bad as two toddlers, and the kids actually help with this a lot. I think it’s time for a vacation. Sounds like it eh?

Something always seems to prevent me from the well intentioned writing that I just keep getting closer to. I refuse to give up on this dream, no matter how difficult finding the space to nurture it may be. This past couple of days though it’s been physical aspects that stand in my way. In those moments I feel robbed unfairly of something that is supposed to rightfully be mine. Something I’ve worked incredibly hard for.

These are some of the scattered, painful, frenzied up close things. When I step back for perspective, what I see is someone who only spoke wistfully of writing (as if she dreamed of being someone else) now about to complete her 40th blog post. I see someone who couldn’t sit still long enough to read one book, having finished about 5 already this year and well on her way to several more. I see someone who while running a thriving private practice and learning about business ownership is still making daily steps to nurture her dream. This is how I battle the not feeling well. I keep my focus on my dreams. I dream of my first novel in print, what it will look and feel like. I dream of having a Stella with Elizabeth Gilbert and that she will endorse my book. I dream of being able to afford a life that is even more my own so that I have time to go to a cabin by a lake and be with my thoughts and allow them space. If you could literally see the dogs going nuts right now and how hard I am working to get the rest of this out, it would be comical really, or sad. For now I am going to curl up with Eat, Pray, Love the movie and try and rest my weary body. Try to beg for it to heal and let me have an energy filled day tomorrow so I can pursue my artist’s date and walk, and so I can find magic among the mundane.

I wanted to write a post about the debate I am having with myself over whether or not to take Martha Beck’s Write into Light course. I think I am running out of steam (patience), and will have to save that one for tomorrow hopefully. For now here is some information on the course.

http://www.writeintolight.com

Brilliant light and love to all….

Christina

Posted on

The all consuming nature of chronic illness

It’s been a weird couple of weeks. I wonder if it’s something in the Universe and others have felt this way as well, or if it’s just unique to me? I feel like when I haven’t written (on here) in awhile, I need to find my way back to my writer self. The muscles groan and protest, as if they are saying “you can’t just come and go as you please and expect us to function, this is a commitment. That’s how it feels anyway.

I’ve been consumed in not feeling well lately, and exploring the emotions that arise here. Lots and lots of anxious thoughts, and worst case scenarios. Probably not helped by the fact that I recently saw a campaign to raise money for a woman with stage 4 lymphoma. The woman was someone who traveled in circles of friends of mine at a significant time in my life. During my newly being “out” as a gay woman phase. I knew people who dated her. I hadn’t thought about her since. And here she is with a wife, two adorable children, and cancer.

As humans we protect ourselves in a variety of ways. One of those ways is a powerful, fully operational form of denial. It is constantly present. This idea that could never be you. The less degrees of separation bordering you from a truer realization or your fragility, enter more anxiety. I often function by thinking thank goodness that isn’t me, and quickly busying myself with a protective layer of every day life that holds no room for morbid thoughts. But I am the type of person who possesses a keen awareness of the whole truth and nothing but the truth, as much as my human mind can comprehend. Often I wish I wasn’t, because then my mind would not be able to drive me as crazy with its frenzied thoughts of madness. To live fully is also to be mad I think. Mad with desire and mad with fear. Because if you know how much true beauty there is to be had in even the simplest of moments, you also know how fleeting those are. Always outracing an invisible force, that only I seem aware of. Or only I appear willing to acknowledge, and when I talk about it frankly I know the darkness in my thoughts frightens others. It’s like we know but don’t say it. You’ll jinx it. What superstitious creatures we are.

The first of the not feeling well began with some odd pain in my upper back, and extreme fatigue. I remember laying with my partner and feeling the first 2 fingers on both my hands be sort of numb and tingly. This driving me crazy of course, firing all my alarms there’s something wrong here, and the story tells if worse horrors then a flare up. It always does. I couldn’t get warm to save my life. I’m often cold. As all the weird feelings took their turn on my body I steadied myself in her arms. A safe space. Thank God for my safe space these days. It’s the only reconciliation I can find for knowing that my days are numbered. All of ours are, and someday maybe, like my grandparents, we will be resigned to checking the obituaries page daily and reading aloud to one another about the latest friend who has passed away.

The episodes include flushing. A delightful thing that is triggered by being over-tired, alcohol such as red wine, and sometimes stress. It feels like you’re on fire, mostly just your face. Hot, head achy, and dizzying. All you can do is lay down, maybe and ice pack and wait to it to pass. Often this is followed by a bad stomach and then elimination that leaves you shaking and freezing in an exhausted heap after. Either too hot or too cold always, the days you feel good being remarkable in their noticeability due to rareness. During times like this it’s a guessing game of what yuck Unidentified symptom will be the flavor of the day, and how you will keep the silver linings ever present as protective cloak. After only so many days you feel your spirit being eroded away at, and the irritability sets in.

Being overwhelmed happens so easily when you’re trying inside your head to manage your invisible symptoms so no one worries or feels sorry for you. Trying to feel normal. If you fall into the trap of thinking about them too much, or too much validation you run the risk of letting it take over your spirit. I refuse to do that ever. But then I think of how draining this is, and cannot imagine fighting cancer to keep my life. It’s hard now. I fear I would not be up to that task.

After the couple of draining days follows a moment of hope, a good day. I bask in it, soaking it up to carry me through the rest. And then the back injury, ironically it happened when I wrote my last blog post. Sat too many hours in a tall kitchen chair without lumbar support (apparently). Because when I got up my back was sore and I couldn’t figure out why. But with as many ailments I thought par for the course and carried about my day. What was supposed to be a quick trip to The grocery store to drive my son to work, became a nail in the tire and 3 hours at a shop with bored twin teenagers. We ate McDonalds, gross no wonder I’m sick 😉 it was 16 degrees and the only walkable distance to bide our time. By the time I sat and got up a few dozen more times into that evening I was nearly paralyzed. Could not walk without agonizing pain. Since I’ve also been down this road I called a physical therapist I know and trust and got in right away. This story could become so long… so let’s just say I finally won the round for much needed pain medication. I may have won the round, but it feels like I lost the game. Going on two weeks of limited everything. Co-pays, heating pads, one wrong move and spasm again after so much hard work… the back let’s up and I get 1/2 a good day and the migraine strikes. Pulsating, furious, making me nauseous. I take the migraine medication and feel weird like I may not actually be breathing, like my heart may have stopped altogether, like if I go to sleep I may not wake up. All this has been in between work and life and dogs and snow and ice and teenagers.

So here I am today at the beginning of two much needed days off, and I’m so afraid they will need to be spent resting, because the migraine remnants have left nausea and a sapped spirit in their wake.

Amidst all of this writing is my breath of fresh air. This is me when I can find hardly the will to do anything still fighting for what I love. I have wanted so badly to write, and yet my mind has been consumed with pain. It’s nearly impossible to think when your body is racked with one symptom or another and you’re just trying to catch your breath in between. This is my way of honoring my experience. When I see it on the page I judge myself. I sound so dramatic, it’s not as if I have stage 4 cancer. This perspective becomes a slow dance with denial, so I can live as fully as I want to. I was blessed with an iron clad will. My gift from the Universe. It must have known I would need it. I choose my reality regardless of my circumstances. I have chosen for it to always be this way.

This is an experience I am having currently with chronic illness. Right now it refuses to be ignored, and constantly sucks at my writer’s soul. Stay tuned because I refuse to give in. Stay tuned because between the night sweats, pain medication roller coaster, confusion of “the correct approach at healing”…there is wisdom between the lines, and between the symptoms.

Posted on

My Journey with Crohn’s Disease

I write this first and foremost for those who can relate. My fellow IBD warriors, and I write it for myself so I may find some catharsis.

-To Deny my Own Experience was a Part of my Survival-

I have Crohn’s Disease. I was diagnosed in August of 2013, one year before I graduated with my Master’s Degree from Southern Connecticut State University. The journey leading up to my diagnosis is a memorable one. I was constantly going to the hospital for heart palpitations and chest pains. Sharp sharp chest pains that felt like the ending of my life must be immenent. If I walked short distances or even began mowing the lawn my heart would beat so hard I could hear it in my ears. The other thing I remember was the extreme fatigue. I felt like a lead block, and that even moving across a room or getting up from a seating position felt like a huge task. I had attacks where my face would get very red and hot and feel like it was on fire. My hands and feet would often tingle or go numb. My head would also throb and I would just feel absolutely awful. My heart would race and I would turn clammy and feel panicky. I thought these were panic attacks until I realized after I went to the bathroom the attack would soon after calm and I would be left freezing cold, lips purple, and shaking like a leaf… barely able to hold my body up. I would have night sweats and migraines. What I would later realize was a depletion of B-12 would create an anxiety like you cannot imagine. I wouldn’t even go somewhere if I didn’t think there was good medical care nearby. I got to the place where I almost wasn’t even living anymore. I had an important therapeutic journey that I hope to make a post about, that helped with this.

Now is any of this sounding like Crohn’s Disease to you? I did not have frequent bouts of diarrhea. Though I will say the way it does effect me is when I am flaring and often with no rhyme or reason things “go straight through” if I don’t get to a bathroom immediately I definitely will not make it. There is no “holding it”. And in fact much to my great embarrassment I didn’t make it last week at my office during my last client of the day. I literally had to say I had to go to the bathroom 10 min before the ending of the session and I had been putting it off thinking it was almost done. Needless to say this situation ended up extremely uncomfortable. Mercifully there was not another person afterwards. It isn’t only my ego that is wounded during an episode such as this, these attacks come with extreme abdominal pain and exhaustion afterwards.

I had gone to every doctor imagineable: Neurologists, Cardiologists, Orthopedics (oh I didn’t mention the extreme joint pain), Naturopaths, General Practioners. By this time I was beginning to question my sanity, and was often treated like a hypochondriac. One of the worst aspects was is in my natural make-up it is very important to me to not be a burden and to “tough things out” so I denied my experience even to myself, and I still do this. I am in deep denial of my disease. This may be the most difficult aspect. And up until this point it has been easy to deny because after many nasty medications (including steroids), Humira put me into remission in 2014….. until now. The beast is rearing its ugly head again, and this will be an entire journey of emotions to manage it I feel. You see I have a relationship with this disease.

Let’s think about this word for a moment DIS-EASE. Whoever coined this term is absolutely brilliant there is no better way to describe. Feeling all of these odd little symptoms, even if it isn’t an issue of some extreme suffering every second, is distracting. This is probably one of the most painful parts for me. Someone who already has a hard time focusing then has this on her mind as well. It feels like it immobilizes me, taking over my mind space as if an alien has invaded and I am no longer my own. THIS is the most painful part for me. I become distracted and lost inside my head and my pain. Trying to be strong for everyone, not wanting them to worry about me. Trying to stay positive and have a good attitude, because that is the only choice. And when I crumple with exhaustion…. I have the awareness of how unpleasant I become. It is heart breaking.

Today I am writing about this because slowly, ever so slowly, the symptoms are creeping back up. Now since I was diagnosed I went through a whole wave of emotions. Relief I wasn’t crazy was quickly replaced by terror of the true reality. My mother has Crohn’s Disease and I watched her bleed constantly, have surgeries, vacillate between heavy and so thin you could see her spine. I watched her blow up like a balloon on steroids, and then shrink like a skeleton. I watched her suffer. And this whole situation becomes the most confusing because it was always her reason to never become a mother. She never became a mother. I think at this point in my life I know that she wanted to if she could have. I do not think she was capable. But for so long I thought it was the disease doing this and I felt so strongly that I wanted to care for her and fix her. Thus a lifetime of confusion of learning how to be cared for, and that I deserved that, and sorting out where Crohn’s Disease and mental illness collided and divided. Sorting through the mess.

So my relationship with Crohn’s Disease is a tricky one because it is also an emotional trigger for me. This being another one of the most difficult aspects. 

So today I sit and write about this topic close to my heart as this will thrust me into another period of growth. I will be tasked with handling the emotions and the physical aspects of this. A benefit of this coming back the way that it is is that I can finally know it wasn’t just stress, I couldn’t probably just fix it naturally (though I debate this a lot), it isn’t something I have caused myself or somehow my fault, and it is VERY REAL. There was some confusion with my diagnosis. I was in my Treatment class, one of my last in my program at Southern, and having the sharp pains. I ended up going to my doctor who pushed on my stomach and I nearly jumped off the table. She thought I had appendicitis and sent me to Advanced Radiology. Already feeling sick I had to drink 2 large bottles of barium 🙁 ICK. I walked around for an hour trying to distract myself: listened to Tina Fey Bossy Pants on audiobook. I can still remember every single thing about that day. Each moment. I remember the sounds, sights, and smells. I remember everything floating through my head as I walked around and around the building outside to keep fresh air and keep from throwing up the solution. I got a call a couple of hours after the test and they said that they couldn’t be sure but they think that I have Crohn’s Disease. I had 7 centimeters of blocked and inflamed terminal illeum. This is where my DIS-ease resides, right where I absorb my nutrients.

My GI later called me back and said that all of my tests came back acute and not chronic so that perhaps it wasn’t Crohn’s afterall. I was so relieved. She later reneged this and said that given my history and results of my colonscopy I definitely had it. This small piece is very important because once I was feeling better I tended to be concerned that I was taking a medication that could kill me, and cause all sorts of other things, and what if I didn’t have it? I still can say I have been unsure. At the time I was having a lot of stress in a relationship, a lot of stress with trying to balance school, work, and internship. A lot of stress as a parent. A lot of stress financially. A lot of stress overall. So I was SURE that my stomach issues were caused by stress and once I got healther mentally that perhaps that was the main key. It obviously is highly correlated with Crohn’s.

So here in the present after 4 hears on Humira (which terrifies me) I am beginning to flare. I have little symptoms still. Sometimes I’ll wake up with nausea or be extra tired. I used to be afraid they would become a flare, but then I realized, or now I realize for sure they were not. Because present moment finds me knowing in my body that I am flaring. I went and saw a movie with my person a couple of days ago and had an attack. My heart rate nearly 100 bpm while sitting in the theater, just sitting. My face red and hot and painful. I tried to hold ice on it for relief. It was not very easy to concentrate on the movie. There is no warning on these attacks they just come, and they suck the life out of any activity.

I woke up this morning feeling totally wiped out, every single part of me. My joints feeling swollen and in pain, my head throbbing behind my eyes, and just icky overall. It is so disheartening to a determined spirit. However I am a fighter. I have always been a fighter. And the second I become engaged in a session in my office doing what I was made to do… for those hours of the day I forget how badly I feel. I am so very fortunate for this. I have created a career for myself that so naturally commands my spirit and presence to attention that everything else becomes smaller. Even my DIS-ease. I refuse to be defined by this monster that rages behind every activity and dream of my life. I REFUSE.

So here I am today on the brink of what could be a very exhausting journey to relief again. Though I am delighted to have a career that does this, by the time I come home I crumple. My life does not have room for this. I don’t want to be irritable and cranky with those I love the most. So then comes the next aspect of the fight. Figuring out the best treatment. There are so many overwhelming questions, and the stakes are high. Do I go up on my Humira to weekly (this terrifies me)? Do I start steroids (also not something I want). Do I attempt to kick this as naturally as possible? This is romantic and I like the idea, but the effort it takes is unimaginable, and my GI would argue. My inclination is natural and holisitic, but my natural background is Western Medicine and it tends to be what I lean to trust. While you can read beautiful articles about how people have healed themselves (see Dane Johnson I’ve been admiring him lots lately and my person did get me all the ingredients for the elemental shake), my GI warns she has seen many of those appear as if they are doing really well for a long time, and then end up with a colostomy bag. A deepest darkest fear…. so I have to make big adult decisions, ones that effect my entire family, and ones that can leave my life hanging in the balance.

All of this is primarily invisible to the average witness of my life. This is why folks to be careful the things we say to others, or the judgements that we make. I am quite sure I am the mom who is talked about for taking more resources than I give within the PTA and in the soccer clubs. When I lose lots of weight due to being sick, well meaning folk congratulate me, having no idea of the daily battle I am fighting. Note: I no longer pay someone a compliment on their physical appearance, unless perhaps it’s you have beautiful hair or something. Never about their weight though. There are million other compliments you could find about their personality.

Having a disease like this changes the way that you live your entire life. I already felt like I was trying to outrun the clock on my available years to produce work that touches the lives of others. Now this process is just accelerated. So in my personal world I have little time to keep up appearances in any way possible. I am already exhausted I cannot be further exhausted by concerning myself with surface level interactions, or being concerned with what others think. And yet…. as a highly sensitive person I will always be aware of each of these things, be aware I live very differently (or it seems so) than others. I am aware, but I literally run out of the resources to give to anything that saps my energy that is not terribly important. So I live in a different and new way. In this way I am thankful for my DIS-ease, because it allows my life to be more rich in genuine interaction.

I live to turn my pain into my passion, and to share with others who are seeking this how to work towards it. Here is another piece of my story. I hope that you get something out of it.

My greatest strength is those that love me so well. It is during this time I think often of my friend Danielle, who came with me to many of my tests, and who was a rock during my time of intense FEAR. She is always close to my heart even far away. Her love for those close to her practically seeps out of her pores, and during this time it was a warm blanket for my soul. I can’t imagine having gotten through that time without her.  It is my wonderful person and my family that keeps me above water, when the weight in my heart feels like it will sink me. I am grateful every single day.

Oh and practical helps are long epsom salt baths with aroma therapy, ginger tea, hooded sweatshirts and comfortable clothing, and snuggles. <3

Christina