When Doctors Lose Hope

Doctors aren’t miracle workers. We want them to be and we want, or all too often need, them to be

the source of our hope. Perhaps it’s unfair to put that kind of responsibility upon them but where else

are we supposed to put it. 

I’m lucky enough to have a rheumatologist who actually cares about my wellbeing but today he was

at a loss as to what we should do next. As I am writing this, I am sitting in Starbucks with huge

plaques of psoriasis on both my forearms. I’ve caught the women to either side of me staring at my

arms. My hips are both on fire today, a leftover symptom from when I went outside my comfort zone

and attended a Vancouver Canucks game. Two of my fingers in my right hand are causing me more

trouble than they ever have before. It is clear that my current Taltz regiment is, at the very least,

inadequate and far more likely to be losing its effectiveness all together.

Don’t get me wrong. I know that I am lucky to be living in a country where pharmacare covers the

cost of Taltz in the first place, with each injection costing well over $1500 CDN, and that’s atop the

specialist and general practitioner appointments, as well as the monthly blood tests which are also

covered. However, when all that effort leads to no results it’s difficult to be thankful for very much. 

And perhaps that’s what makes this all so hard, no forward movement. Hell, I don’t think I’m even

holding in one place anymore, instead being dragged backwards no matter how hard I struggle. So

when the doctors are giving up on hope for you it becomes impossible to keep looking forward

because you’re constantly checking over your shoulder for what hellishness is behind you. We will

all face that moment in our lifetime when we have to accept the eventual decline and failure of our

bodies, unless of course something tragic robs you of the ‘opportunity’. I had hoped, in 2012 when I

asked for help, that there was going to be some possibility of forward momentum for the foreseeable

future. That positive outlook lasted at most for two years until I hurt my knee once again and was laid

up, had to stop running and eventually walking.

After that moment, my entire life has been in a backwards direction. I failed my way out of school. I

put back on all my weight. My mental state has been in steady decline, despite the occasional bump

of a good day a couple times a year. My financial situation is about to take a huge turn for the

worse, with my income dropping as much as 40%. I eat and drink because those are the only

reliable things I have in my control which I know will give me an all too short feeling of contentment,

even knowing the incredible guilt I will feel later that day or the next. 

I am alive today not because i fear death but because of what my suicide would do to my mother.

Not even the prospect of finishing and compiling my book is a reason to keep going. Where do I go

from here that isn’t backwards into the mire of loneliness, addiction and utter morbid gluttony?

x

Tears flowed and pugs gave hugs.

My mother and sister came for a visit this afternoon and brought Larry, my sister’s pug,

to spend some time as well. We talked about what I’ve been doing to pass the time,

my new diagnosis of BPD and what was going to happen when I’m sent home on

Monday. Larry, of course, wanted to be the centre of attention, and insisted on being

atop the picnic table we were sitting at. My mood was rather somber despite the

welcome visit and Larry must have sensed this so he walked over to me at sat right

in front of my face. He then turned slightly sideways and put his head on my shoulder,

giving me a hug.

I placed my arms around him and we sat like that for about 20 seconds, allowing my
sister to take this excellent picture. When he backed off he stood up and his tail curled
up, just like a happy pug does, and he gave me a kiss before walking away, happy that
he’d gotten the attention from me that he was looking for. 

It’s hours later and I still can’t believe that happened and each time I think about it tears
begin to well up in my eyes. If you look at the picture you can almost see that he feels
sad for me and knew exactly what he was doing and I’ve never needed or appreciated a
hug more than the one my sister’s dog gave me this afternoon. Wil Wheaton often half
jokes that we don’t deserve dogs and after what happened today, I’m inclined to agree. 

Compared to that hug, all the time and hugs I got from my mom and sister seem to
matter just a little bit less than I thought they would at the beginning of the day.

642 things - Eating oysters

642 Things to Write About

The thoughts of the first man to eat an oyster.

How the hell do I get these open? That damn bird was just eating these out of the shell but the minute I touched it, it snapped shut. At least I didn’t get my finger caught again.

Maybe I should cook them first. I’ll chuck a couple into the fire to see what happens.

Hmm, that seems to be working. Good god! That’s what they look like inside???? I’m not sure I can do this, but I’m so hungry. It looks like a freaking alien.

642 things - Wedding vows

642 Things to Write About

Write wedding vows. The bride is thirty-five and it’s her first marriage. The groom is forty-eight and it’s his third go round at the altar.

(hers) My sweet. I have sat over this piece of paper for hours, striving for the words to explain how much I love you, how much you mean to me and I don’t think they exist. From the moment you first looked at me I had dreamed, desired for this day to come and here we are. All that we have been through has prepared us to recognize in each other the things which we need to fill the hole the Lord provided and I know that he walks beside us every day, ensuring that we are on the right path, together.

(his) I was tempted to make a joke here, just to make you smile and look at me with those eyes. 

Instead, I just want to say that I will always be with you. I will always take care of you. I will always hold you when you need comfort. I will always stand behind you when you need support. I will always be there when you need me. This is not my first time being in this place but for the first time in my life I am certain of where my life will lead, and that marrying you is the greatest thing I could ever do. I will love you, forever.

Splat

“Do something each day that scares you.”

Today will be a day of things that scare me.

I’m sitting in A&W, not my comfortable Starbucks, trying to write and it is loud. There are 30 seniors in here enjoying their morning while I am trying to concentrate. I hate it here. It is triggering my anxiety.  I should have just stayed home. The only thing I can write about is how unable I am to write about the things I need to write about. Sitting here scares me.

After this, I have an appointment with my doctor to have him look at a strange thing growing on my leg. It’s not a cyst, it’s not a zit. It’s a lump, an irregular lump that is weeping. It’s everything they tell you to worry about when they warn us about skin care and warning signs of cancer. I’m scared. Of all the ways to go, cancer is not the one I want to face. I will NEVER allow myself to get to that point. I will take care of things on my own before I would ever let that happen.

After that, I have to talk to my friend about being my power of attorney and making end of life decisions. Having just watched what happened with my uncle and his family, I want everything put down on paper, in nice legal ink. My family may not like my decisions but I don’t really care. How my life ends is the ultimate expression of bodily autonomy and I’ll be damned before I let someone else make that decision for me. I trust my friend. Of everyone I have talked to about what I really think about my life and where I am mentally, it’s he whom I trust the most to carry out my wishes. I am not, Lieutenant Dan from Forest Gump, begging to fulfill his death destiny. Fuck that. I will take control of my own destiny. I have been a slave to what the world has put me through for 45 years and I refuse to allow my life’s end to be something I have no control over it.

Having said all that, knowing my luck I will die without even seeing it coming.

“Watch that bus.”
“What bus?”

Splat.

Leave it to my life to remove the one time I try to take back control.

I am not a megaphone

Borderline and leaving religion have both taught me certain things. One place where these lessons overlap is the idea of who gets to define another person beliefs or values.

I watched for years as one church would call the members of another church out as "not true Christians." This still happens. A great example is when I hear people say that Catholics are not real Christians when it's obvious that they are. They may not agree with another person's beliefs but since I can't tell from the outside who is a true Christian and who isn't,  I take them at their word that they both believes they are and are trying to be with total sincerity.

I see the same arguments going on within the feminist community, where some women say that, for example, dressing in a sexy manner defies what feminism is about while another will claim that it's exactly what it's about. Some claim that a woman choosing to wear a burqa is anti feminist while women having the freedom to make that choice for themselves is exactly what feminism is about, freedom to choose what to do with their own bodies.

I don’t claim to know if both or even neither is right. I agree with many "feministic" ideals and have, at times, disagreed with what some feminists have claimed I had to agree with. This never sat right with me. I try, I really try to support women's empowerment but it seems that no matter what decision I make, there are issues which seem to make me a feminist to one woman while not a feminist to another.

Today, I was called a non ally to the LGBTQ+ community because I didn’t understand a trans woman's point of view. This has happened before, when I have asked for a clarification of something which was said to me. I have been told, multiple times, that to be a true ally I must subdue my own voice and simply amplify the voices of trans people.

But I am not a megaphone. I am a thinking, breathing human as well and I would never ask another person to subdue their opinion by simply stating that mine is correct because its MY opinion. I cannot bring myself to silence myself and throw away my critical mind. I question everyone and everything I don’t understand. And anyone who has read anything I write and post here knows that point goes for things I believe first and foremost.

I don't deny that those people in the LGBTQ+ community have led lives I don’t understand.  In fact, I say that I don't see how I possibly could. All I can try to do is empathize with their marginalization, sympathize with their predicament and try to get others to open their ears. One of the few things I have hope for is that there will come a day when none of this is even an issue anymore, simply because we all accept each other for we are. Although I will never live to see it.

I can only do the best I can. I want to listen to the stories.  I want to give people a leg up when I can and the fact that I'm a cis man, which limits my ability to do so from an understanding place, is not my problem.

The message I got told me that by doing a daily Pride post in the way I am comfortable is inappropriate, demeaning and making it all about me.
Well, you know what? To a certain extent it is but that's because this is my voice and my IG account and my blog and my brain doing the beat inducing can.

I will happily link to blogs i find interesting and informative,  regram posts I see which speak to me or I think may speak to others. But this is my voice and I'll be damned if I let anyone tell me I don’t have the right to use it just because I'm a straight white man. That's now how you get allies. That's not how you identify enemies. That's how you create apathy because the person being attacked will eventually tune out a message which could very well have taught us all a valuable lesson.

I'm sorry for this rant but I had to let it out somewhere.

Be well everyone.

Lies, addiction and choosing to live

One of the near-constant plot threads throughout the series The West Wing is alcohol addiction. There are many episodes where the Chief of Staff's alcoholism is the keystone of everything going on. In one episode in particular, “Bartlet for America”, Chief of Staff Leo McGarry takes a drink for the first time in years but doesn't stop with just one, because alcoholics don't have a drink. They have drinks. And they don't do it in front of other people, they do it alone because they are ashamed and afraid that no one will understand and that they will be seen as weak.

The DVD commentary for this episode was done by series creator and writer Aaron Sorkin and the actor who played the Chief of Staff, John Spencer. Both of these men have dealt with addiction in their lives so it is from experience that they can discuss the shame of the lies that come with trying to hide such a sadly integral part of their lives. Spencer also discusses the incredible amount of freedom that comes with finally telling the truth.

While I did use alcohol as a self medication and I definitely abused it at times in my life I never had problems choosing not to drink the way that an alcoholic does. If I decided I'd had enough, I would just stop even if that meant leaving alcohol in the glass in front of me. And yet I can totally understand what these men are talking about as they discuss the lies which they told to hide their addiction and the freedom that one experiences when they finally are able to tell the truth, without the fear of judgement from the people around them. I spent nearly my entire life lying, trying to protect myself from the illness that was desperately trying to destroy my life not knowing that it was the lies that was allowing that destruction to occur.

I've known for years how important this freedom is to me and how central it is for me in trying to function on a regular basis. Life would be a lot easier for me to deal with if I went back to the lies. I could probably even lie myself into believing I could hold down a job but the appearance of healthiness would be short-lived. It doesn't matter how well you lie to yourself and others, the truth will eventually bite you hard enough to stop you where you stand, often when you least expect it and when it is the most damaging to your life and relationships.

I catch myself lying from time to time, a reaction to a specific moment, a form of puffery subconsciously intended to make myself seem more important or more liked to the person I'm speaking to. I work hard to catch myself when I do this and if possible admit to the person I just lied to that I did it. Only recently did I understand where a part of the impulse comes from.

There are tens of thousands of characters in fiction whom we love and cherish who are known for turning their lives into a series of blown up adventures, exaggerations on what really occurred. The other characters think of them as only telling tall tales and because we all they know they lie, they don't believe them and can see them as charming and endearing. Anyone watching an episode of How I Met Your Mother knows this. The character of Barney Stinson is well known for his ability to manipulate people by exaggerating the truth, especially the opposite sex, into getting what he wants. However, from a third-party point of view, watching it in a  television show may be funny, charming and almost lovable but to the characters inside his life, the reality is he would probably be insufferable, never trusted, and alone if it weren't for the ladies he was able to manipulate into going home with him.

I know that there are people in my life now often uncomfortable with the fact that I no longer lie, as strange as that sounds. Because I tell the truth they are exposed to the thoughts which I deal with on a daily basis, hearing about my illnesses in a blunt unshameful manner, and telling them how I really feel about myself. It hurts me to know that telling such blunt truths around them makes them feel this way. Yet I do it because it's not only the only way for my relationship with them to survive, it's the only way for me to survive. Like an alcoholic, if I was to feed that addiction again I have no idea where I would end up but I do know that I would hurt every single person who cares about me in the process. Strangely, Aaron Sorkin hinted at what that aftermath might look like.

Early on in the series, a secretary who had grown up with an alcoholic father asks the character of Leo what would happen if he took a drink. Leo responded, “I don't know. But probably a nightmare the likes of which both our fathers experienced. And me too.”

My greatest fear isn't how much I may hurt people if I take my life and leave this planet. My greatest fear is how much I could potentially hurt them by finding the courage to stay.