20 Years Later – Still Struggling, Still Learning, and Still Finding Meaning

20 years living with type one diabetes.  Just going to let them sink in for a moment.

20 years ago I nearly lost my life due to this disease when it pushed my blood sugar level to 1,500 and hospitalized me for an entire week.

20 years of insulin injections, finger pokes, blood sugar tests, and counting carbs among many other diabetes management tasks.

How does one even begin to reflect on what has happened since that day?  A day when a doctor walked into a hospital room and told me I was diagnosed with a disease called type one diabetes.  A disease that would require needles and insulin and injections on a daily basis.  A disease that could lead to kidney failure, blindness, amputation, and even death.  And the worst of all… a disease that had no cure.

Nothing has changed!  Well, that’s not entirely true.  A lot has changed.  But nothing with type one diabetes has changed.  Sure, technology has improved greatly in the last twenty years.  I went from four to six insulin injections to day to using the insulin pump.  And the glucose meter doesn’t take as long to count down to reveal the blood sugar level.

Type one diabetes, the condition in which my body does not produce insulin, has not changed a bit in over twenty years.  That means in the last twenty years there has not been a break from living with this disease.  No remission, or it went away for a little while, or you can come back in a few months and start insulin again.  Every single day we are tasked with managing this painful, annoying, frustrating, irritating, and even exhausting disease.

I still struggle… I do.  I struggle sometimes more on certain days than others.  But, how can I not?  When you have to inject yourself with another needle, eat something quickly to stop your sugar from dropping, look around for a finger that doesn’t have as many marks from previous blood sugar tests, counting in your head the amount of carbs the food at dinner is before eating, and having to detach and reattach the insulin pump over and over again… and so on and so forth.

The struggle: what it takes to keep living this life with diabetes, the fears of what this disease could do to you, and the constant acceptance that until a cure is found that this is the life I have to continue living.

It truly never ends.  So of course the struggle is still there.  I hate saying that I struggle.  Truth be told, I should actually say it more often.  Sometimes the longer you go living with a condition it seems as if you are supposed to be the expert and know how to handle everything without a hitch.  And it’s not like years of living with this disease is going to change the condition… but it did change ME.  I struggled a lot back then.  I struggled the moment I woke up in the hospital bed.

Twenty years later and I’m still struggling.  But, I don’t struggle as much.  Back then, I hated my life every single day.  I hated diabetes with such resentment.  I hated everything it took to manage diabetes.  I hated myself.

There’s no easy way to put it.  When you are first diagnosed it’s hard to see anything good about what just happened.  It is hard to find that silver (sugar) lining in a life with type one diabetes.  To be told this is going to be a part of your life each and every single day and that it comes with some significant responsibilities makes it hard not to hate everything about it.

And that struggle carried with me for four years of hate and resentment.  Struggling to the point where thinking of the remainder of my existence this way seemed almost unbearable.  And that struggle led to a suicide attempt shortly after.

As time passed and I made changes within that ultimately changed the struggle I battled daily.  The burden of living with diabetes become increasingly manageable.  I used to hate diabetes and myself a thousand times a day.  Then, it became a couple hundred times a day.

Eventually, a few times.  Low and behold it would be maybe one time a day.  All of the sudden it was every couple of days.  20 years later, I don’t hate type one diabetes, and most importantly, I don’t hate myself.

I still struggle with fears related to my diabetes.  I don’t talk about those enough either.  It’s hard, because with a chronic condition with no cure it’s not like you feel very motivated or enthused to erase those fears when they are still a possible part of your future.

I fear dying alone in my sleep from a low blood sugar.  I fear going blind in the future.  I fear having kidney failure.  I fear living the rest of my life with tubing attached to my body.  I fear nerve damage that could lead to possible amputation.  I fear death may come knocking again when it did twenty years ago.  But, I learn how to deal with those fears.

I’m still learning.  I know more about diabetes each and every day.  Crazy, right?  I learn more about something that hasn’t really changed much.  I learn more about life with diabetes.  I learned a lot about it when I decided to start running and made my way from a 5k, 10k, half-marathon, full marathon, and ultra-marathon.  Do you know what’s it like to try and manage your blood sugar while running up to 31 miles?

By the way, what better way to celebrate 20 years than running 18.6 miles in the Nevada trails? Because that is what I did to celebrate!

I learn a lot about myself.  I still do.  I catch myself still blaming diabetes at times.  It’s easy.  It can’t really blame you back, but it gets back at you when you have to inject yourself again or check your blood sugar.  I learn about addressing my own fears related to diabetes.  Over the years you learn more about yourself and how you manage your diabetes than you actually learn about diabetes itself.

I still find meaning in a life with type one diabetes.  Finding meaning was really crucial.  Without it, I don’t know what I would have eventually done.  I know Life on Insulin would have never been published and I know there’s no way I would be a counselor today if it wasn’t for the fact that my health problems and view of myself led me to getting help in the first place.

To this day I still search for meaning behind having this disease, even after twenty years, and trying to understand and discover how it is going to play a role as I journey on another year down this path.

Every time a year passes and I mark another “diaversary” I often look back and reflect on what life may be like for me without having type one diabetes.  In my early years I would think of how great it would have been to never be diagnosed with this pain in the ass disease.  But, as the years continue I see more and more of who I have become because of living with type one diabetes.

I appreciate life a lot more because it pushed me to death when it entered my life and when the struggle became so unbearable I almost decided to end my own life.  The thing that brought me closest to death has helped give meaning to life.

I don’t know where I would be if twenty years ago I wasn’t diagnosed with type one diabetes – but most importantly, I don’t know who I would be without it.  And for that reason I will still struggle, still learn, and still find meaning to a life on insulin.