Shame, Disease, and Dad: Grand Canyon Ponderings

I’m a little homesick this morning, so it makes sense that I am going to turn to my constant companion that is with me everywhere: my safe haven of the written word. Somehow I always feel better after I have bled my experience on the page, and someone hears it. I think we are all like that. I am sitting in a cute little coffee shop called Brewed Awakenings on Route 66 in Arizona, just a few minutes shy of the Grand Canyon. We are supposed to have a Pink Jeep Tour at 2:30 today, but on the Groupon it says “pending” and I am not sure what kind of weather these guys operate in. I am also not sure if we have the appropriate gear. We somehow assumed that Arizona would be warm. We rented a convertible car LOL! It just so happens that it is snowing this morning, and rainy and wet, and is supposed to be this way all day. “You can plan a pretty picnic, but you can’t predict the weather.

It is however a great day for the permission to write. I have several things on my mind this morning, it’s exciting to see what I will untangle from them. The most prominent thing, much to my frustration is my Crohn’s Disease, and it’s close companions are shame, a certain level of confusion about validating my own experience with it (and in general of course), and this brought up feelings of my Dad, and about how I “lost” him again. Though you can’t lose something you never had, and that isn’t the correct narrative. I chose to eliminate any source that would shame me without looking or investing in me.

So Courtney and I went to a little restaurant last night, it was an interesting experience. There was one cook, and one waitress and they became slammed. The Yelp information made it look like an established and popular establishment. Overall it wasn’t a bad experience, though I would not get food there again. The beer was delicious and probably because we didn’t eat much with it, I ended up squared up with my disease again.

Over the years I have really tailored any drinking because I can tell my body has a very hard time processing it. I essentially got to the point where if I have even a few drinks I get a very bad experience with heart palpitations and tachycardia, and sometimes even atrial fibrillation. However I have been rolling pretty smooth in the land of disease, until I got bronchitis over a month ago now, and had to skip an injection. I’ve been struggling since then, in ways that I haven’t in 6 years. I dread the possibility of another difficult round with this disease or having to change my medication and play that “game.” And at the same time what did I think was going to happen. That I would just take Humira and never have an issue again.

I struggle particularly after being at the International Women’s Summit, where there is lots of talk of sickness in our bodies being a symptom of repressed feelings, un-lived potential, etc. I have always struggled with feeling I’m injecting myself with poison, that is experimental, and doesn’t my body know what to do to heal itself. And on the other hand my GI tells me that this thinking is unrealistic, and that staying on top of this disease in a top down fashion can give me a much better quality of life. Confusion.

How do you know what is intuition and what is superstition?

This is a very important question. We human beings have very superstitious ways of thinking, the way we connect the dots in our experiences. And this isn’t limited to “unhealthy” things, most people think in these ways.

So anyway I woke up last night shortly after falling asleep with my heart beating so hard it felt like it was going to shake me out of the bed. My beats per minute on my Fitbit were over 100. TERROR. I could hear and feel my heart beating in my ears. Seven years ago when this would happen I would go to the emergency room, only to be told I had anxiety. So I gave up doing that long ago, though now I have to be nervous I won’t get help if I need it. I’ve worked that one through with a therapist as well. I’ve tried to cultivate a sense of faith in myself that if it continued to get worse in a variety of ways I would seek help. Except who knows what kind of medical care is available here. I mean people live here right, there must be something. But I’ve been spoiled living only 20 minutes from Yale Hospital. Where bad doctors can exist as well, arrogance can be as dangerous as anything. But that discussion will lead us off topic, as if I ever stay on topic, HA.

So my episode. I take .25 of Xanax to head off any panic attack this can cause, and because I am superstitious of course I believe it will lower my heart rate. I mean relaxing a little can’t hurt in that department right? And then the bathroom things happen, sweating, erratic heart rate bad bad things is what we will leave it at. When that is over I am left shaking and sweaty and cold and aching. Pain radiating up my back. So many symptoms that they tell you to watch out for in a heart attack, because that isn’t stressful. I sit up vigilant lest I pass away in my sleep. I don’t wake up my wife, because that makes it more real, if she gets afraid I’ll read her fear and then really get anxious. So I work my way through it. Eventually I get it down to 90 ish, and I’m doing deep breathing, and making my trips back and forth to the bathroom.


I wake up this morning feeling like I was hit by a truck, pain radiating up through my kidneys, bags under my eyes. Here I am at the Grand Canyon, and I want to BE fun. Notice what we do? I’m not worried about how I am feeling, and that I deserve to feel better. I am worried I will ruin someone else’s time. Because I know she will be disappointed if we stay in. I know the disease deserves our anger here, hers and mine. Not me. And I never know if I really have to or not. I never know when to push myself to just keep going, or when to validate this thing I don’t want in the first place. My dark passenger, Crohn’s Disease. When I put it like that I am grateful it is not the urge to murder anyone. This was a Dexter reference if you didn’t know.

So when I am grappling with shame and doubting my own experience, this time I am looking to the origin of it. When I got diagnosed with my disease I was so unseen in so many ways. It wasn’t anyone’s fault. After all I didn’t know what to do either. A dear friend of mine had rekindled a relationship with her father and I was wondering if that couldn’t be the same for me. My father stopped talking to me around the age of 12. There was no explanation he just disappeared. I suspect a complicated relationship with my mother and my grandparents, and a lot of confusion to blame, but it was never my fault, and yet I am the one who paid the ultimate price. He made a choice. There is still so much I’ll never know about that choice, so many unanswered questions.

So when I found my 1/2 brother on facebook and was able to look him up and we began corresponding via e-mail I was overjoyed. It felt like falling in love. He of course became romanticized even more so than the average parent in such a situation would because anything was better than the situation I grew up in. He always got the hero role by default almost. Because his energy felt more sane from what I remembered, it felt more normal than what I was going through at home. But as it turns out he was intellectual, and quite pragmatic to a fault. At first I appreciated these things, but as we moved further and further there was no empathy for my experience there. He stated he did not want to re-hash anything of the past only to move forward in relationship, this clearly had nothing to do with my needs, but then again it never did, did it? That was the first flag. But then I thought ok well I can work with that as long as I get to know him. I would do anything you know to have a relationship with a parent. Plus he was so smart and so worldly and doing such neat things. He was living in Xico Mexico at the time and writing a blog about life there.

We struck up a writing relationship. I was smitten. I couldn’t wait for an e-mail from him, and what was even better his take on me being gay was that evolutionarily this was the more intelligent thing to do. He said men were assholes mainly, so he was glad that I was with women. Another interesting perspective. Not one I expected, but I was so hungry for acceptance at this time. He even posted a picture of my daughters on his blog. We belonged! He was willing to own us as family is how it felt at that moment. I felt a taste of acceptance and belonging, one I had yearned my whole life for. He didn’t post a picture of my son, or of me, or anything else. I recall hearing about him that he was a womanizer etc, he appreciated beautiful things, cars, women etc. But I don’t know how much deeper his integrity or his heart went than that. He did stay with his wife (my step-mom when I was little) Anita, for the whole rest of his life. So that’s a sign of health one would think, but then again, people stay together all the time and are not necessarily healthy.

Here is what I do know. When I was lost and scared, riddled with physical symptoms and diagnosed with Crohn’s Disease, and in a relationship that didn’t feel particularly loving in the ways I was needing at the time (due to my behaviors as well)…. he said to me “daughter your posts as of late tend to exhibit some frightening mental states not unlike your mother”, and our relationship was over at that point. I cut it clean. I felt no warmth or empathy from him. I just thought I might find it there. It was like a mirage of an oasis in the middle of the desert, and to realize I was sucking in dry sand rather than water. My heart had to break again. The loss of him, or perhaps only the idea of him, to have a father, and then to lose him again. I then vented at him all the things that were hurting me. All the unanswered questions that burned at me my whole life, that I had to carry around. His responses were scathing and only burned more.

Then I got an e-mail from the brother I told you about that he died (this is 2 Decembers ago now). He was 72. I was only vaguely regarded with any information of his passing, even when I asked if perhaps I could attend the services for my own closure. I think his parents didn’t even know about me, and much of the rest of his family. I know I wasn’t given any empathy. There was only shame. SHAME SHAME SHAME.

This morning I saw a post from a friend reaching out on Facebook, and it made me think of people’s statements about whether people should or should not post about their lives on there. What an arrogant statement. Who is someone to know what another person needs. Perhaps in that moment facebook is all they have in terms of nurturance, and one person saying they are there for them may make the difference between life and death. How do you know? Is it really so shameful for someone to vent their sufferings in a public space? I think we need more of this, not less. We need less of the shaming.

Anyway I am going to add an additional post with my final letter to my father that he never read because I knew I was writing it for me, and I knew it wouldn’t be appreciated or received by him, and would only give another opportunity for me to be harmed. So I wrote it for me. It was a huge part in my growth. The decision, MY DECISION that I didn’t choose a relationship with him, rather than feeling abandoned or not chosen.

My letter on the next post….

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