Some more thoughts on 30 Years in here

Warning: This is another anniversary post. Anniversaries are funny; they keep coming every year (if you’re lucky).

Also, Trigger Warning: Some mention of death, chronic illness, and abuse.

It’s hard to believe that it’s been 30 years this year.

It’s hard to believe mostly because it doesn’t seem like that long-they say “time flies when you’re having fun”. Consequently, it also flies when you’re living your life, busy, having fun, AND have a chronic illness.

Type 1 Diabetes affects millions around the world each year, but back when I was first diagnosed it was not that common. For a long time, I was the youngest person in my region to be diagnosed and survive, which is a strange label to have placed on you from the age of two on, but it’s what I was given to work with.

I’m a believer in the butterfly effect; one of those overly enthusiastic, “everything happens for a reason” people. And while I don’t believe in a vengeful God, I do believe that my chronic illness was meant for me; given to me for a reason.

I can look through my life and think of the negative things diabetes has provided. It was a source of agony as a child; personally and for my family. As a young child I was the subject of abuse at the hands of people my family trusted to care for me; I was nearly killed from that abuse when adults withheld food that I had already received insulin for. I lost friends who didn’t understand that you couldn’t “catch” diabetes and afraid for themselves, they didn’t want to be friends. I struggled with my weight, with my peers, with having to educate adults, having to advocate for myself medically; I struggled with guilt, fear, grief, anxiety, depression…the death of friends and the fear of losing my own life and limbs.

That said, I can look through my life and see far more good things. From that abuse, I learned about the importance of strength of spirit and the impact of kindness. I became a steadfast advocate for children and people with disabilities.  I developed my voice and my confidence early and found that I didn’t need to care what other people thought; life was literally too short for that. I learned that you can tell a lot about people from what they do for others in weak moments, and I learned that there are a lot of different ways to show love.  I gathered friends who, even when they didn’t understand, listened and cared and hugged me when I needed it. I got physically strong and by the time I was 16 I understood more about my body than most grown adults.

Now I’ve spent years digging into my own past, my own psyche, and healing wounds. I’ve dedicated my life to helping others to live their best lives; professionally, personally, and healthily, in whatever way I am able to do that best.

And now, now that I’m 30 years in, I feel like I’m starting a new chapter. As a child and teen, and even in my last 10 years of adulthood, I never really felt confident that I’d get here. I wasn’t sure I’d live this long, and I wasn’t always sure I wanted to. Losing people along the way from the same disease that I was coping with day in and day out was incredibly challenging. Deciding I was worth this much work, personally and for my family, was hard. It’s financially stressful, emotionally taxing, and physically demanding.

Then I hit 30 years old. I got married to my best friend in the world, surrounded by the many people who love me and two of the medical professionals who helped bring me to that moment. I got to thank those two medical professionals at my wedding for helping me get to this point in my story.

So what now?

That’s the question at hand. I admit as I come upon this 30^th anniversary with Type 1, I can’t help but be overcome with a combination of strong and deep feelings. I feel happy that I’ve gotten to do so many things in my lifetime and that I’ve gotten to spend so much time with people I care about. I feel relieved that I’m still in pretty good health overall and excited and grateful for future opportunities to improve and charge ahead. Some days, I feel like a strong voice in a strange storm; a gorilla beating on my chest and yelling, “Come at me Bro!” into the void at a pancreas that’s long dead inside me.

But I also feel guilt. I feel survivor’s guilt; I feel like that for every bad decision I’ve made, for every time I hurt someone else, or caused myself or someone else harm in some way, that maybe I don’t deserve to still be here. Honestly, I feel grief. I still experience grief at the loss of normalcy after 30 years, and I grieve how quickly this disease forced me to “grow up”. No second grader should have a grasp on their own mortality the way that I did, and I grieve for the little girl inside me that still believes in Santa Claus, but knows that she may not wake up in the morning if she does too many handstands and cartwheels after her evening snack.

And I feel uncertainty. I’ve often said I’m going to write a book someday entitled “I’m not supposed to be here”. Because by all scientific accounts, this was not an eventuality or even a probability. My sitting here, with all my limbs, with all my eyesight and original parts and pieces, was a possibility, but not a probability when I was diagnosed in 1991. I would be lying through my teeth if I said that in my deepest heart I believed it when I so confidently said I would live to be an old woman. But now…now that I’ve accomplished another milestone, I can’t help but think about what’s to come, good and bad, and what I’ll do from here.

A friend recently pointed out that I’ve lived my life at a drop dead run. I moved as quickly as I had to make the most of the time I had. I didn’t know how long I had, so I needed to fit in as much as I could. Thing is, I didn’t always plan for the future because it didn’t feel like a thing I had to worry about. If I got there, I’d come up with a plan, but I’d adjust as needed because it wasn’t likely.  Now I’m finding that I need to adjust, which could make this next part of my life the most interesting of all. I have all the time in the world (as far as I’m concerned anyway). I want things; things that take time; things that are worth waiting for that I didn’t allow myself to want. And that friends, is the most exciting part of this anniversary. Now I want stuff, and I’m going after it, no matter how many years it takes.

No one knows how many years we get in this life, or how many we get out of it. As I’ve celebrated this anniversary this past weekend, I’m drawn again to looking at the year ahead with optimism, anticipation, and even some trepidation.

Mostly, looking ahead, I’m excited for all of the things I want and a million more opportunities to help other people get the most out of their lives. I’m also looking forward to more of the everyday opportunities to live and enjoy life. I feel like that’s something everyone can benefit from looking into the years ahead.