Sunday, May 31, 2015

Hope.

I’ve been away.

The Diabetic Life has laid dormant inside of me while I’ve been swept up in other things.

I don’t put the hours in worrying anymore, and I certainly don’t work overtime to make sure basals are succinctly dialed in like I used to.

There are only so many minutes in a day, and I have the immediate need to graduate early so I can move across the country, and get married, and start my career. Other things have taken precedence, so I’ve reverted to inevidable "Diabetes autopilot." Even though Diabetes is still a very important part of our lives, it isn’t the most important part of our lives, and it certainly isn’t where it needs to be on the priority list.

Basically, it has been: They are alive at the end of the day. It’s a win. 

We are surviving, not thriving.

Tonight though…

Tonight.

Tonight I attended the JDRF Hope Gala in San Francisco at the generous invitation of special friends. Listening to words like “hope” and “cure” and “breakthrough” and promises for change stirred up the complacent advocacy particles that have settled deep in my soul. The juices began to flow, and the floodgates opened.

I am a D Mom.

My kids need a cure.

I never allowed myself to believe in one fully. Mostly because I believe it's important to be content with the cards we are dealt now.  But tonight the man that is the head of the encapsulation team looked me personally in the eye and said, “It’s coming. For your children. It will happen.” And when he showed me cells on his cell phone bursting with the ability to produce insulin, it was like I was witnessing the impossible…and then…believing in it.

And as the bids came around the room, one in particular for $100,000 (yes I hugged their neck,) the gratitude ran so deep it was hard to contain it all inside my frame. Because even if there never comes a cure, these people were there tonight working for it anyway. Working hard on behalf of MY boys, for a future that I wasn’t brave enough to envision, but they are stubborn enough to fight for in spite of my complacency. They fearlessly move forward raising money to fund research for change, and many of them will until the day they die, or until the cure does come. It was humbling to witness such generosity, some people whom have no familial relation to diabetes.

My heart runneth over.

Tonight, driving home from the gala, I made the decision to allow myself to hope, and not let myself, or my boys, settle for a future of “same ol’ same ol’”

Now here it is, almost 2 am and I find myself coercing fruit snacks into my sleeping 11 year old's mouth. My boys need a cure. If there are people in the world willing to work towards that end, I will be honored to stand next to them and dream with them. Hope with them. Lead with them. Fight with them.

It was an honor just to be in the same room with them tonight.

My name is Meri Schuhmacher.

And I’m all in.


Sunday, May 17, 2015

You're a Fat F@#! and You Give Diabetes a Bad Name!

When I was diagnosed with type 2 diabetes, it took me some time to become aware of all the various resources that were out there for me. There were various mainstream informational websites, and a few personal blogs. I didn't even have an inkling that there were exclusive forums for people with diabetes, until I found a reference for one in a blog.

So I joined the forum, excited to meet other people and see what it was all about. It opened my world to a whole new level of knowledge I had not been exposed to through the mainstream informational websites, and it made me consider so many questions related to day to day living with diabetes. At the time, I was struggling with other life challenges, as well: I had been struggling with underemployment, lack of medical coverage, and a lack of food, so the forum provided for me a place to come, get some encouragement, and escape reality for a little while.

While I made many valuable friendships, and met folks who helped me realize that I'm not alone in my path with diabetes, I also met a lot of jaded and hurtful individuals. And I was very much not prepared for that. Sure -- there are always trolls and mean persons on every corner of the internet, but this was different: these were people who exclusively hated me and held me in contempt for having the 'wrong' type of diabetes. And that was something I could not understand.

Now, I am well aware that I may not have the most easy going personality -- but this problem was beyond my having ever joined this forum. A simple search through their archives, and one could find thread upon thread of vitriolic, incredibly detestable hate-filled fests against persons with type 2 diabetes. On top of that, administration seemed to care little about monitoring this type of bullying, and called it "constructive dialogues that needed to be had." It was frankly, quite off-putting. The forum quickly became detrimental to my health, contributing to feelings of shame, self loathing, and depression. I felt myself addicted to it, as someone who's addicted to the person who has become their abuser. I was glad when I was finally banned -- a woman took to insulting me after an innocent reply to a post, and when I replied in self-defense mode, she conveniently deleted hers... It was hurtful, and I felt very much betrayed. I still do. But it was for the best. There were people who only pretended to be my friend, and after I was gone, completely stopped speaking to me. Just like junior high. The whole thing was gross.

It wasn't all a loss, however. Some of the people who I had friended decided to find me and friend me on other social media outlets. They missed my insights and my writing, and encouraged me to blog; they were instrumental in me even starting this blog. Many of them are still my friends till this day. I value those friendships very much, and my life is richer for having them.

But... after leaving that forum, I found that this terrible hatred, and vitriolic scene was not just a problem exclusive to them, but instead it was a part of a greater online diabetes culture. No matter what group, page, or discussion you joined, there would always be discussion about persons with type 2 diabetes being to blame, being fat and gross, having a 'different disease that is not mine and needs to be renamed so we're not associated with them because they gave it to themselves,' not having 'real diabetes,' not being important or deadly, and not to be considered as allies, but as people who have ruined things for 'the rest of us.'

Frankly... I've never been hated so much by someone for just existing. Not even as a Latina woman, in a predominantly Caucasian state; not even as an obese woman by persons without diabetes!

I quickly became very resentful of these people. I sought out many arguments purposefully, and tried to argue it out with as many of these haters as I could. In my mind, I saw them as immoral, awful people, who needed to be put in their place. I saw the culture of rampant discrimination, bullying and persecution, and I just had to get on my little crusade to fix it. I sought to try to force people to see that type 2 diabetes was very much misunderstood, and that they needed to see this for themselves as much as their own type of diabetes was misunderstood. I argued, and I got on my soapbox, and I ran myself ragged.

Some folks were on my side and argued for me, and even wrote extensive blog posts... and some other folks were not. Some other folks were more lukewarm: they could sympathize with me, but they still wanted the 'comfort' of relating to others about how much they resented my own type. I felt like these folks wanted to eliminate us, like a kind of ethnic cleansing: obliterate us from existence, so they could get justice served for their own misfortunes. We are 'the punching bag' for their child, or their spouse, or their whoever having gotten their type of diabetes.

It's become very challenging for me to not reserve a well of pure hatred for many, or most of these people. But slowly, and with time, I've come away to a different place when it comes to the conversation... I can't have anything but sympathy for these folks.

You see, the feelings, hatred and vitriol -- though hurled at me and others living with type 2 diabetes -- have absolutely NOTHING  to do with us... and everything to do with those who hurl them. They do not say a thing about us; they simply speak of unmet needs, of emotional trauma, of personal agony and challenge, of isolation and lack of recognition.

None of this has anything to do with me. It has everything to do with:

  • The stress of living with a deadly chronic condition, and a lack of acknowledgement of this reality by friends, relatives, the media, and the medical community;
  • The frustration of living in a world rampant with ignorance about diabetes in general, but especially about any other type that isn't type 2;
  • The lack of psycho-social support and mental health available for people living with diabetes;
  • The often inevitable feelings of seeing oneself through the lens of a victim's narrative because it's really hard to rationalize to ourselves the WHY we (or our loved one) got such a sucky hand in life (a subject that could well fill another blog post, on its own);
  • The feelings of a need to 'make things right,' and avenge the lot in life we got (or our loved ones) by attacking others that society has told us 'gave it to themselves,' so that we can feel better that we were 'innocent' (as if those others were guilty, somehow) ;
  • The desperation of not being able to find healing for ourselves, or for our loved ones... often, the desperation of complications, or a lack of research and a cure;
  • Simply... the pent up agony and anxiety at not being recognized on almost any outlet, ever... even as rarer conditions get at least some moments in the limelight.
I have distanced myself a lot from many of these conversations, and forums. I went off to make my own diabetes support group where this type of vitriolic atmosphere is simply not tolerated. Where a culture of being one another's advocate is encouraged -- because we're all we've got. Outsiders are seldom interested in any diabetes, of any type. Period. It's up to us to educate ourselves as much as we pretend to educate others. 

But just because I've surrounded myself with love, and support -- and rewired the conversation -- doesn't mean that the hate fest doesn't live on outside of my bubble. Oh, it does.

So a couple of nights ago, when I was misguidedly arguing with a friend over an idiotic political meme (as you do) and they lashed out at me, declaring that I was 'a fat fuck, who gave diabetes a bad name,' I didn't even blink. They proceeded to unfriend me, and thus ended a long friendship... But I knew the insult had nothing to do with me. I knew the person had waited long and hard to find an apt moment to hurl the insult at any person with type 2, and therefore, stab life right in the groin. I knew the person had been struggling long and hard with some pretty scary complications from diabetes... and needed something or someone out there, to pay for it; to be their punching bag. I knew they were writing their own victim's narrative. 

Had they done all the right things, some might ask? I don't know. Does it matter? Do they 'deserve' their pain, somehow, if they had not? I think we've ALL done all the right things, and all the wrong things at one point, or another. At the end of the day, frankly, diabetes doesn't care whether you 'gave it to yourself,' or not. It has little empathy. In fact, it has none.

I simply don't get angry anymore. Instead, I love these people, and I let go.

Once one understands the mechanics of what's at play, it's easy to let go and forgive. It has nothing to do with me, after all, and it never has. I respect the walk of my fellow friend, though it's not my own. It's not my duty to make these people feel better about their own type of diabetes by letting them belittle me... no. 

But I understand, and thus I let go... For in unfortunate choices, or through hatred, and in pain, people are still human. They still deserve some dignity and some humanity. So you let people go, and you hope they find some healing. You hope their lashing out at you helped them, somehow. You hope they find their peace.

You let go of all the folks that do not build you up... so they can find whatever it is might build them up. We're all (though sometimes reluctantly so) in this together... So, off you go. 

Friday, May 8, 2015

What are D-Moms made of?


We are a complicated concoction.  

D Moms are made of Glue:  We hold the entire family unit together.   Our children's challenges stick resolutely to us as we work to find solutions and wash away the unpleasant sticky residue of diabetes.


D Moms are made of Fire:  The bad blood sugar day our children had yesterday?  We burn it away into ash and begin the day anew.  Every day is the rebirth of new numbers.  The old worries are burned away and in its wake come new saplings of hope.


D Moms are made of Ice:  We can numb the pain...the sadness...with our love, our bear hugs and our empathy.


D Moms are made of owls:  At 2am we can see the smallest speck of blood in the darkness of our child's bedroom.   We are wise enough to make life saving decisions in the dead of night.  We bring food and drink to our child's cozy bedside nest to keep them safe.


D Moms are made of wind:  We are invisible as we check a blood sugar while our child watches their favorite show.  Other than the breeze from our departure, our presence is undetectable. 


D Moms are made of crystal balls:  You ate that plate before I could see it?  70 carbs.


D Moms are made of dark chocolate:  We may have a bit of bitterness buried deep inside us, but the notes of smooth sweetness comes through more than anything else.  We are pretty comforting to have around.


D Moms are made of Cheetah: We are fast.  23 blood sugar?  We are up and to the snack cabinet before you can even blink.


D Moms are made of Diamonds: We shine through the hardest times.  We can stand insurmountable pressure.  That twinkle in our eyes when we look at you?  Nuff said.


D Moms are made of Bologna:  You know when our children are high with large ketones and we say, "No worries!"  We are really good at being calm and making you think that everything is ok, even when our insides look like an active pinball game.


D Moms are made of Bob the Builder:  Can we fix it?  YES WE CAN!


D Moms are made of encyclopedias:  Information?  We have retained it.  We are the go-to information source for our children's health.  We are the experts.  Yes...you can site that.


D Moms are made of butter:  We melt easily.  Give us those eyes and yeah...you can have that cupcake.


D Moms are made of steel:  We can be bent, dinged and manipulated...but we will not break.  We support the skyscraping circumstances with ease.  The world on our shoulders?  We can hold that.


D Moms are made of tears:  It is our breath of life.  Releasing the tears is the only way to keep the delicate balance within our complicated eco system of ingredients. 


D Moms are made of crock pots:  In the morning we cook up life by throwing together love, kindness, routine, determination and loyalty, and then letting it simmer all day long into a feast for our family by day's end.


D Moms are made of swords:  We live to conquer.  We were built to defeat what stands in our way.  Don't mess with a D Mom on a mission.  We will cut you.


D Moms are made of silver:  We may look frazzled and tarnished sometimes, but give us some TLC and we will shine so bright you'll need sun glasses to take us in.


Sure...we are complicated.  How can one exist by being fire and ice?  Butter and steel?  


It is a delicate balance...one not everyone can negotiate.  


That is why we were given this calling.


We are D Moms.


It is our job to make it work.


Happy Mothers Day to my fellow D-Moms-in-arms!

 
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