I’ve pinched myself a million times.
Literally. There’s welts and bruises.
And I still cannot believe it is true…
Me, the gal with Type 1 Diabetes and a bunch of mental illnesses, was asked to come and sit on a panel, next to several awe-inspiring folks, and share my story. The story of how I lost time each and every day because of the anxiety attacks injecting myself caused (thanks needle phobia). The story of how my insulin pump took those attacks away and provided me more time in my day. The story of how I navigate this world and my connection to a man responsible for helping to save millions of lives.
It all came about so quickly, and for that I am glad. Had I more time to let my acceptance of this request percolate the less chance I would have had a successful follow through.
You see, I am a terrible traveller. I prefer to go places by car, specifically my car as it provides an emergency getaway.
Flying to another continent, over an ocean, is not something I had given much thought. In daydream sure, but it never left the surface because I never thought myself capable. And not at all because of diabetes, just because of me.
In fact, T1D was way down on the list of things that I was worried about. I casually packed the things I needed and didn’t give it much thought. To be honest, it was a relief to have my ‘Betes Brain functioning on a manageable level. Especially considering all the other consuming thoughts.
In addition to speaking (something I’m pretty good at once I’ve mentally set myself to it), I was having my picture taken and appearing on film. Two things I seriously dislike. Two things that cause for an eruption of emotions. Two things that trigger some of the darkest thoughts…
All I have ever wanted is to help people. To offer my experience in the hopes someone else can bypass some of the bumpy roads I’ve travelled. But sometimes helping people can be far more complicated than we think, and sometimes helping others requires you to get a little help yourself.
From the moment I was diagnosed with Type 1, I have tried to find a way to utilize my connection to Banting to help others living with diabetes. And I had hoped by doing that it would also allow me to help those struggling with mental illness.
But the opportunity evaded me. No one seemed to care that I, a gal with T1D, was related to the very man who (co-)discovered the drug I need to live. Surely that should create a chance to help. Right?
My diagnosis came on the cusp of change. Not just for me but for the world. We were on the edge of a new reality. One full of social media accounts, influencers and hashtags. And though it was visible on the horizon, we weren’t quite there yet. And I was from a time where all of that seemed somewhat fantastical.
So I accepted what was put before me. I accepted there was no place for me in advocacy. I accepted it but I wasn’t happy about it and then banished myself to a very isolated existence with my diabetes. For a very long time.
Fast forward. After reluctance and bad luck co-conspired to keep me from switching to an insulin pump, something changed. Now I had a wonderfully amazing new tool in my arsenal. And a company that saw value in my story. They asked me to share my experiences and offered my the chance to help others who may struggle as I once did. Taking injections isn’t easy. It is actually quite counterintuitive if you sit on that thought for a moment.
So, let’s sit, shall we? You are charged with the task of acting like an organ and keeping yourself alive, but in order to do that you are supposed to take a sharp object, loaded with life-sustaining liquid, and jam it in to your body…not necessarily an easy concept to swallow. Or execute. Throw a fear of needles in the mix and it is a recipe for disaster, poor management. Or death.
When I received the invitation to travel to Barcelona and speak, I was blown away. I could not properly digest what I had just heard and asked them to repeat it. Even when the details starting coming through and I had it all there in my inbox, it didn’t ring true. Even after I signed the contract and received the tickets, I still questioned their decision to ask me. And then I panicked.
I couldn’t fathom it. I couldn’t figure out why they had asked me. I couldn’t rationalize any of it and then I second, triple, quadruple guessed everything. Surely they had be mistaken. Part of me even questioned if this was some cruel joke.
There was absolutely no way that this girl was capable of effect change or offer help to other people. But I also recognized the opportunity to step (WAY) outside my comfort zone and prove to myself that I was able to do something. So I did.
Preparation for my trip went relatively smoothly, all things considered.
I am always prepared diabetes-wise. In fact, most folks who know me joke that whatever bag I have with me is the diabetes equivalent of the one carried by Mary Poppins. I constantly bring along “too much” (is that even a thing, too much?) and generally have more than enough to share.
I am also hyper-vigilant when it comes to preparation of any kind, I’m a chronic list maker (heck, even my lists have lists!) and double, triple, quadruple checker. Travel insurance, timelines, and other similar administrative particulars all fell into place quite easily.
Then came the packing. Well, the preparations for packing.
And this was the part I was dreading the moment I was invited to attend. I knew I would need proper attire, not just for the event but for the photoshoot. And every time I thought about it my insides twisted up, leaving me absolutely gutted and questioning why I had ever agreed to it.
The grownup temper tantrums were out in full force. The week before I was set to leave I ripped my closet apart, disheartened and discouraged by all it was lacking. In a pile on the floor was not just my entire wardrobe (which no longer fit) but my dignity and my Dexcom sensor (as if losing the battle of the bulge wasn’t enough, it was all driven home by my fucking arm getting stuck in a jean jacket sleeve that ripped my sensor off as I struggled free) too.
It was nearly too much for me. Why would they want to put me up on stage? This horrible, haggard mess of a woman. Why would they want to snap my picture? I look nothing like all of the popular “diabetes influencers” – I’m nearing 40, I don’t wear makeup, there’s certainly a grey hair or several poking through, my skin is a mess, my teeth are not perfectly white, and I do not have a svelte figure or good fashion sense. I’m just me.
Clothes shopping is my worst fear. On a good day I seriously dislike it. Navigating it in this new body has been a tremendous struggle. But I managed to find a few things, after a husband imposed trip to the mall (again!).
My next move was to compile a list of every single item I would need/wear for every single moment of the trip. And while I still second, triple and quadruple guessed myself, my wardrobe was, in the very least, prepared. On paper.
Exit Stage Right
The first round of pictures and filming went well.
At least according to the folks snapping and filming. I have never seen a picture of myself that makes me feel comfortable and deliberately never asked to see any of what they took.
I was greatly comforted by the inclusion of my husband, who had joined me on this journey. His presence puts me at ease. And while he has been unable to lift my self-confidence (though not for a lack of trying, he is truly lovely and always encourages me) in our nearly two decades together, he can always make me laugh.
When I met the other panelists I was immediately intimidated. Not because they did something to make me fearful, but because they were all so tremendously inspiring. So maybe that intimidation came from everything they had done? Not only were these folks fellow T1Ds/Podders but they were absolutely incredible!
One gal, a British actress, who has written a play about living with diabetes. And has recently published a children’s book. She is incredible, vivacious and charming.
Another advocate, a sweet girl from Germany, who travels and speaks out, all while educating. She runs a blog, telling tales of her life with T1D as a plant-based person.
There was a lovely Austrian gentleman with a great story, and other tales of adventure. He has an infectious laugh and a wonderfully positive outlook.
Then there was another young gal, from the Netherlands, with a tremendous online presence. She is an outspoken diabetes advocate and public speaker, and just such a bright light.
Finally, there was a lovely young man, from France, who travels and cycles the world bringing inspiration with him everywhere. He too is a published author.
And then me.
Like where do I fit in to this mix? I am a homeschool mom, who dabbles in creative ventures, struggles with mental illness, aspires to be an advocate and dreams of becoming a published author. I am no celebrated public figure or internet influencer. I just have a whole lot of bottled up ambition and nothing to show for it…
Sitting in the presence of those remarkable souls, I was awestruck, but also frightened. I was terribly worried I would embarrass the people who had asked me to come, worried they would all see how little I have to offer.
And I was petrified of the fall out from my unmasked failures.
**Full disclosure: at this point, while typing yesterday, I received a phone call from my husband. He was in a car accident on his way to his first day of work since our trip together to Barcelona. My apologies if the rest of this post seems disjointed.**
From the Darkness
It’s funny what a terrifying experience can do for you.
No matter how much gratitude I have for the opportunity to travel to Spain, to speak about T1D and needle phobia, to interact with all kinds of different people, to have my story told in print/film, to spend time with my husband on a (mini) honeymoon we never had, it must be said that the entire experience terrified me. Everything about the trip set off nearly every trigger I have and threatened to send my anxiety out on a bender.
Coming home from the experience scared me too.
I have no way to know how it will affect my mental health.
Well, that’s not necessarily true. I know it can really only go one of two ways. It will either build me up and motivate me to push forward or it will consume me with those “less than” thoughts and send me back in to isolation.
And the shitty thing about it all is my lack of control.
There will be those people who optimistically say, “pick happy, take this wonderful experience and run with it.” Because I can’t just pick happy. There will be others who quietly try to encourage, telling me I’ve done a great thing and there is more to come.
But they are wrong.
PDD is a tricky sort of critter. So don’t let it fool you. Yes, I smile and laugh. Mental illness isn’t always something you wear on your face, it isn’t always visible. Instead it buries itself deep inside you, beyond the realm of logic and reason. And from there it taunts you.
My own recollections will be riddled with holes, holes left by all the good things that happened. And while I know they were there, they will eventually fade only to be filled by feelings of unworthiness, then patched over with all of those unmasked failures.
And it isn’t a game of should have, could have, would have. It just simply is. Those are my struggles. That is the way my brain works. For better or worse.
But sometimes, just sometimes, there comes a bit of light…
Secretly, between you and I, I know what will happen. I will bank that experience, add it to my collection. And quietly foster it with love. I will never let it be forgotten or feel unimportant.
But I will also never truly believe it to be real.
**Note: the focus of this post was my mental health, my thoughts and feelings about the experience. There is another post in the works that will focus on the experience from a T1D position, what the panel discussed and all that other stuff. Stay tuned!**