Strangely Diabetic

Why They Scare Me

Scott — Fri, 17 Feb 2012 18:55:16 +0000

My last post was a very brief one about “Regrets” being an upcoming topic with Morpheus and how that scared me.

I thought I’d try to explain why. **By the way, writing this is making me very anxious which probably means I need to talk about it

I’ve mentioned before that I never really allowed my self to form distinct memories of significant events in my life, I mean seriously, why bother? However, I’m beginning to think it is more likely that those memories are there; lurking, hidden, just waiting to cut into me.

I think I will be ashamed of the way I treated friends and loved ones, of how I wouldn’t let myself enjoy the moment. Angry with myself for that.

And I worry that I will be able to control these feelings and emotions as these memories surface. I have no idea how or when they will and my reaction is completely unpredictable to me.

That is very scary to me.

Regrets

Scott — Thu, 16 Feb 2012 05:29:58 +0000

Regrets

This topic is coming soon in my discussions with Morpheus.

It scares me… Alot

One For The Parents

Scott — Tue, 14 Feb 2012 22:49:30 +0000

My last few posts have been a pretty down-and-dirty description of my sessions with Morpheus describing many of my buried and repressed feelings about the last 40-odd years with diabetes. If you haven’t read them, I’ll condense it down to a few sentences.

I stand here a failure. You see, when I was seven years old, I learned I had a disease and I would always have it, right on up to the day when it killed me, probably before I was 25. Well, it was 1970 and the “sugar diabetes” was all bad. I’d die, but not before I went blind, lost a leg and probably a kidney as well. My failure? Well, somehow I failed to die. I thought I had survivor’s guilt, seeing that I had survived basically ignoring the disease while so many did not. So many who had tried so much harder than I had. It wasn’t actually guilt though, it was shame. I was ashamed of still being alive, and I still am to some extent.

That whole thought process started when I was very young, trying to find a reason why this had happened to me. I ended up making it my fault because that was really I could understand at that age. My parents grew up during the Great Depression, so I was brought up with a “sometimes life is hard” mindset. It wasn’t that they didn’t love me or worry about me, but they weren’t equipped with the tools to help with this any more than I was.

So there I was, a smile on my face anytime anyone asked about diabetes like it was no big deal. And inside? There was a seething morass of anger, guilt, fear and apathy that soon took over my way of thinking, of living. Why Bother was born and has been a constant companion for all these years.

I kept myself isolated, distant from friends and family. Not even allowing myself to really form memories of special occasions. Trying to protect my children by being distant from them so it would not hurt them so much when I did die.

The years turned into a decade, then another, a third, a fourth, and now into a fifth. I kept on living. Kept on barely doing the minimum to even physically survive. Hearing the stories of those who had tried so hard, the children and their parents who had worked so hard.

And I couldn’t even die. It shamed me that my continued survival would hurt the loved ones of someone who had not. Someone who had just as much reason for living as I. I am ashamed that I have given people a reason to ask “Why us? Why not yours?”

I can’t answer that question.

I write these posts to tell a story. A story that never needs to happen again.

Parents, I know you love your children and would do anything in your power to take this from them and into yourselves. Unfortunately, you can’t.

What you can do is make sure that your child, loved one, or significant other knows that any feelings they may have about their diabetes is normal. There will be days it makes you angry, sad, scared. Even days where you go “That’s cool” because you met someone simply because they had a pump clipped to their belt.

Let them know it is ok to have these feelings and to talk about them. Help them learn that talking about these things is just as important as testing, carb-counting and dosing. Letting it all stay inside and simmer will lead to a future like my past.

I don’t think this is something you can force, you have to make sure that they feel comfortable talking about it and then they will. How can you accomplish that last part? I don’t know, that’s for you to discover.

All I can say is I know that my story is not a pleasant one for parents to read. And the things that affected me so strongly may not happen to you. However, just because it isn’t pleasant or may not happen does not mean you can be oblivious to the possibility.

The possibility is that the long term emotional and mental toll can be much worse than the physical one. And it doesn’t need to be.

**This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at **http://diabetessocmed.com/2012/february-dsma-blog-carnival/

Guilt or Shame?

Scott — Thu, 09 Feb 2012 19:14:28 +0000

One of the topics that Morpheus and I touch on quite a bit is guilt and its stepbrother, shame. I tend to think the difference is a matter of severity, i.e. shame is “worse” than guilt. I am guilty about all the things I am ashamed of but I’m not ashamed of all the things I’m guilty of.

When we talked a bit more about it, she was trying to show me that they are two separate things. I didn’t really understand what she meant until I read The Difference Between Guilt and Shame by Joseph Burgo, PhD. Shame is much more about “self”, I am ashamed of something that I did that reflects, at least to me, a personal shortcoming. Guilt is much more about how something I did affects other people, did I do something to make others feel bad?

I’ve written before about how I’ve felt guilty that I survived when so many others haven’t. Others that seemed to be working so much harder at survival that I was.

After reading that article, I don’t think that I’m guilty at all. I think I am ashamed. Since I was supposed to die before I got through college, it was a failure on my part that I didn’t. I am ashamed at how my survival, with such little effort, has hurt others. Made them angry and ask “why him?”. Hurting others is something I don’t want to do and it is definitely a personal shortcoming for me if it happens because I “failed” to do something.

Fucking red pill…

Patience

Scott — Thu, 09 Feb 2012 18:30:53 +0000

** Before I get started, I wanted to share an anecdote with you about something that happened on the way home from my session with Morpheus that I described in Oh Bother… I left the appointment in something of a daze and and stopped to get a Diet Coke (of course) for my 45 minute drive home. I managed to get my head on somewhat straight and as I started the drive home, Welcome To My Nightmare by Alice Cooper came up on my playlist. I smirked at that as it was ironically timely. However, I seriously began to wonder when I pulled into the parking lot for my next appointment and that same song started playing again… I think it has become my unofficial theme song for this whole mess!

You know, I’m finding some of the things about therapy kind of odd. As I am trying to change how I perceive myself in relation to the world, it often seems that there are two of me in here competing for space in the old brain pan. The Bother Brothers (Will and Why) seem to be butting heads.. Get it? Butting heads? In my head? I made a funny!

One advantage that Why has is that is where my “gonna call it like I see it and eff the torpedoes” attitude comes from. Why has such little regard for what people think of him… err me, that he will pretty much say what I am feeling about a situation; regardless of who may get pissed off at my humble, yet always correct, opinions. Morpheus tells me that is what gives me a strong patient voice and I don’t want to lose that ability. The trick is learning how to use it as a tool as opposed to a lifestyle.

Doing that is going to require Will to step up to the plate a little more often and I need patience as my mind sorts out this sibling rivalry. One of the things we discussed last time, is that I need to be a little easier on myself as this change occurs. I’ve been bunking with Why for 4 decades, so adding Will as a second roommate will take some getting used to. I sometimes give advice to others that that begins with “Take a breath”, I need to start following that advice.

Patience with myself… I’m not sure I have the patience to wait for that to happen.

If You Take Anything Away

Scott — Fri, 03 Feb 2012 17:27:18 +0000

For the last few postings I’ve discussed counseling sessions addressing issues involving depression, guilt, diabetes… well, just life. I’ve discussed a lot of things that I think people are uncomfortable with, in particular the stigma of depression.

I’ve noticed a several things since I started writing these recent posts. In particular, the number of views these posts generate are much higher than I normally see. This tells me that there are a lot of people interested in these issues either for themselves or someone they love. There has also been a significant shift in my readers. Last month, a full 50% of my readers were new visitors, indicating that I’m reaching a different audience. I’ve also noticed that when I add the #mhsm (mental health social media) hashtag to the #dblog (diabetes blog) tag, the number of retweets decreases, which is why I think I’m touching on some very uncomfortable waters for some people. That’s OK with me.

My journey to where I am today is different than yours has been or will be. The things that have shaped and formed me are different from the things that have forged you or a loved one.

In the DOC, we like to say that we love to to talk with others that “get it”. And we do. But still, we can’t completely understand because we are different people with different perspectives, experiences and opinions.

But you know something, if we both realize that? That we can’t completely understand? That is something that we truly have in common. And it is a wonderful place start learning from. It allows us to learn from each other, playing our strengths, weaknesses and experiences off the other person. Being able to apply our combined wisdom to each of our situations.

Everyone, parents and caregivers especially, if you take anything away from the entries I’ve made recently, take away that, while my experiences aren’t pretty, yours don’t have to be that way.

If there was one thing that I could change so long ago, it would be finding peer support at a much younger age. When I was diagnosed at a young age, I just wasn’t old enough to really understand that diabetes wasn’t my fault. By the time I was, that “it’s my fault” was a Truth carved in stone.

If you find yourself struggling; frustrated, angry, sad, depressed realize that is ok. It’s normal for all of us involved with long-term health issues to go through phases of burnout and exhaustion. Find someone that you talk about it with, you can make it through this.

Take away that none of us need to be alone in this. That together, we can help each other more than we even realize.

Take away that it’s worth doing.

Oh Bother…

Scott — Tue, 31 Jan 2012 19:49:12 +0000

Morpheus had asked me to imagine a life without guilt and I was totally unable to, it was like looking at a blank wall; no way over, under, around or through. Thinking about it more, I’m not even sure I can consider diabetes and guilt as two separate entities any longer. As we were discussing this, she said that “blank wall” was a sign that we had touched on something important.

She then asked me something that stopped me cold. I had to ask her again what that question was, I had totally blocked it out… almost instantly. Yes, I checked my blood sugars, they were fine. I couldn’t blame a low blood sugar for a little short-term memory loss.

No, the question cut me to the core, I was instantly anxious. That tingly kind of anxious, like a panic attack or adrenaline rush. I don’t even remember the last time I felt so anxious. I had to ask her again and as we chatted more, I had to ask her a third time. It was a question that I did not want to acknowledge.

She asked me why I was bothering to go through all this.

And I was unable to form a thought, to speak a word. I couldn’t even remember what the question was. It literally took me two days after the session to remember the question and then I had to leave myself a note so I could write about it.

Even now, as I am thinking about it, I am extremely anxious. She told me I could leave the problem there, in her office, until next time or I was ready to talk about it. I did that for a couple of days, but it kept nagging at me, wanting my attention. I’m trying to give it some now, but all I can really do is describe my reaction to it, the anxiety. I still can’t really seem to see a path through that blank wall.

I’ve written before about having a “Why Bother” attitude. Literally, why should I bother with much of anything?

Morpheus helped me see that I had made a choice (I was tempted to use a capital C there) a few years ago. It was a difficult one, not the easy path, but the right path to take. It has taken me this long to finally reach a fork in that path. One signpost points to my safe “Why Bother” path that I have followed and cloaked myself in for as long as I can remember.

The other signpost points down a dark, scary, unknown, rocky trail. It reads “Will Bother”.

A Life Without Guilt

Scott — Tue, 24 Jan 2012 03:18:37 +0000

One of my questions of the week from Morpheus was “How would I act without guilt?”.

I’m not sure… I’m not sure I’m to a point where I can even conceive of that, almost as if it would a total flight of fantasy. You know, it’s almost like asking me how I would act without diabetes; what would I do with less stress & worry and all the extra time, lifespan, and disposable income? But not quite…

I think it is possible for me to let go of the guilt I feel. A lot more possible than a cure, at least as how things stand now.

I just hope that I can honestly do it. I am able to game most, if not all, of the multiple question, multiple choice psychological questionnaires (that whole photographic memory thing).

I hope that I don’t let myself game this.

A Disturbing Search

Scott — Fri, 20 Jan 2012 18:09:17 +0000

I’ve thought for a long time that every diabetes diagnosis & treatment regimen should include counseling right along with the medications and the medical professionals that will come and go during our lifetime with diabetes. In fact, that should be the case for any chronic or life-altering health situation.

I’m doing that now and I’ve put myself out here as someone who is clinically depressed and diabetic. Granted these postings mostly help me, but I also hope that my discussions can help people know it’s OK. It’s OK to seek help when you or a loved one has diabetes or any other chronic condition for that matter. Non-health related life-changing events can also use some help sorting out now and again. That’s OK.

Because, dammit, life is hard enough and diabetes is another layer of stress, anxiety, fear, anger, frustration all rolled up in a little thing we call our lives.

It’s OK.

I’ve always felt as a diabetes advocate I have a responsibility to tell it like it is and to show that you don’t need to be a “perfect” patient to have a long, fulfilling life. Depression has always sapped that “fulfilling” portion of my life and that is what I want to change now.

Putting it all out here about mental health is uncomfortable, not merely because I am searching for and looking at things that I spent 4 decades hiding from. And it’s not merely because I am discussing some things that are very personal & private to me in a very open space. It’s not because there is such a stigma associated with mental health.

Without really intending to, I seem to have moved into a mental health advocacy role as well. And that’s truly uncomfortable because someone, someone I may influence, found my blog using the search phrase:

decided to let diabetes kill me

That’s not OK with me. I wish I had a way to reach out through that search phrase and find that person. Try to tell them they are not alone, that what they are feeling is normal, and hopefully help them find what they need. If you are reading this now, please talk with someone, anyone, even me. Because it is OK.

I had kind of liked how I was writing about all this, it was helping me put some order to the jumble of thoughts and emotions that are part of this journey. That search phrase is making me question my approach though. I guess Morpheus and I will have a topic of discussion next time.

And that’s OK too.

Stop SOPA and PIPA

Scott — Wed, 18 Jan 2012 15:42:29 +0000

Please click thru to read Gizmodo’s great explanation of what the House bill SOPA, and it’s Senate counter-part, PIPA, are. They are incredibly dangerous pieces of legislation to the freedoms that we currently enjoy on the Internet.

After reading about it, please click over to Google’s Take Action page where you can sign a petition showing that you are against this assault by the US government, pushed heavily by the MPAA and RIAA.

There is another site with even more information at Stop American Censorship, check it out

* image credit: Gizmodo http://gizmodo.com/5877000/what-is-sopa