(Or the Worst Autobiography Ever)

What a bind I feel in these days; yet also prepared, illuminated, and forewarned. The problem, in fact, may be that I know too much, which don’t get me wrong, in this case that’s a good thing.

For instance, I know how much time caring for a child with diabetes requires of a parent. The planning, the prepping, the management. We are fortunate in this last year I was able to dedicate a good part of the day learning all I could about diabetes and using that information to help us better conduct Lia’s care. The challenge of doing this alone must simply be immense. I can only imagine how much further along we are because there were two of us and at the time of her diagnosis one of us was working from home where the opportunity to self-educate is much greater.

But beyond the huge benefit to my being at home, I was not just sitting there waiting for something to fall from the sky that would occupy my time, worry and attention like nothing I have ever known. I was there to write books.

Writing has been a passion of mine for nearly as long as I can remember. When I first started out I would devour books on writing and later read with painstaking detail the biographies of my favorite authors hoping to find the secrets to their storytelling. Of course, there were none. Hard work and dedication, those are the secrets. But I learned that sometimes to get some place you really want to be, it helps to picture yourself there first. Such was my thinking when one day about six years ago, I came home from a day at the office and Franca asked if I knew anything of the Colombian writer, Gabriel Garcia Marquez. I didn’t and so she told me of how he had quit his job while on vacation, then he and his wife sold off many of their belongings in order to eke out a living while he focused solely on writing. What I had when she finished wasn’t a sudden epiphany but one that arrived over the next couple of days: For the years and years of my own hard work and dedication to pay off I would need to take some risk. So we adjusted our plans and set new priorities and eighteen months later I turned in my rung on the corporate ladder for a comfy writer’s chair and began the long, arduous, but enjoyable journey of channeling my passion for writing into paying work.

I could not have asked for anything better. Franca was teaching, the kids were in school, we had set aside savings to offset my loss of income. Finally, for the first time in my life I could just be a writer; and I did, scratching out two promising, albeit yet-unpublished novels, and in the process digging deeper into the crux of who I am that makes me a writer. It was the life I’d always wanted.

What happened next is no surprise. It is what this blog is all about, lives harnessed in mid-step, plans altered. When I think to four years ago and of my departure from the financial security of my job, I am reminded of the many people close to me who applauded my action, assigning it credits like courage and commitment and while I’ve never thought of it as that, more just a stubborn tenacity and a wife who generously allowed me to entertain it, now after what we’ve been through this past year with my daughter, I can tell them what true courage looks like.

And I can tell them, too, how difficult it is to live without making a shed load of money and treating this outrageous disease. It’s beyond hard, maybe impossible. I don’t know yet. Maybe there’s a way to do both and I just haven’t learned enough yet; and wouldn’t that be a wonderful lesson. But the burden of cost is one of my greatest fears, now and especially as Lia grows older. So much so that I’m torn between suspending this dream and focusing now on a new dream: doing all that I can to ensure that one day ten, twenty, thirty years from now when Lia is sitting in some office somewhere dreaming of some other life for herself and worried about the risk, she won’t be bound in her decision by the cost of treating diabetes.

4 thoughts on “Quandary
(Or the Worst Autobiography Ever)

  1. Firstly, your writing is heavenly, and I’ve never said that about anyone’s writing, except maybe Walt Whitman…

    I can understand why you worry about Lia and how diabetes costs might get in the way of her dreams. I feel like I was temporarily side-lined because of diabetes. I wanted to go to medical school but was not doing well with diabetes and soon needed to work for my insurance. Truthfully, I felt very unmotivated by the school system. They said, “you shouldn’t go for a medical career, your weakness is math and science”. So I hesitated too long but later figured out another great thing to do and this time I’m not hesitating. My dad flunked math and science through college until his second year when the light bulb went off and soon he was teaching math and science college courses to his peers and became what he always wanted to be-an electronic engineer. My sister is in college majoring in studio art, something many people keep telling her isn’t a good idea since she has diabetes. I’m so proud of her, though. She says that persistence in following the dream worked for my dad and is working for me (finally) and she says she’ll work it out, too.

    Your writing is really special and unique. I love your latest post where you are telling yourself to “buck up” and lead by example.

    The thing is, by writing about all this, you’re not only leading your family by example, but all of us.


  2. I have been thinking of this a lot lately. I majored in creative writing and have always loved to write. I’m currently a marketing copywriter (working in advertising). I’ve done a little freelance and I LOVE it. If I didn’t have to worry about needing insurance, I would feel more comfortable in pursuing freelance full-time. I know I can make it happen if I really want it, but the thought of having good insurance and being able to afford my diabetes supplies is my reality check. I understand the dilemma!

  3. 5 weeks into my new and first time unemployed status (by choice) and I can say…the financial reality is very hard to swallow. Had I stayed at work we would be comfortable and know that anything Ellie would need to better manage her diabetes would be obtainable. Now I have cut that security off. I feel awful about it…but I also know that I will find our path and have the sanity, time, knowledge and ability to help Ellie as she grows to manage her condition. I’ll be there when she needs me without a barrier of work or other obligation. She will have less responsibility now, the ability to grow with as little pain as I can offer her and then hopefully grow strong and tall with her own confidence to handle what is in her future. Ray and I would have never been able to truly offer her 100% financial security, whether I kept my job or not. With that reality, I offer our financial security to chance to ensure her emotional and physical security…That is the best I can do and I hope I have made a good decision. Only time will tell…and we all have time when we live in the now. You are a valuable writer, and I suspect that over the last year you have been a father to Lia (and your other children) that money could not buy. Thank you for sharing this post, it is what I love about your blog! Thoughtful and real.

  4. I hope you don’t suspend your writing dream…Steve. However, you are so terribly right. The “Diabetes Haves” vs. The “Have Nots” is a very real and sad thing. Hugs to you all! BTW, your writing is beautiful. I was NEVER good at writing…I do, however, enjoy the therapy of putting my worries, my adventures, and my feelings in words. I just wish I had “the gift”! Keep up the great work friend.

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