Traveling with Diabetes
November 27, 2013 – 3:18 pm | No Comment

I’ve travelled several times each month this year and it’s given me some lessons:
I’ve learned that I get motion sickness on planes and cannot travel without taking Dramamine.  I tried to forego it once and …

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Home » Diabetes Advocacy, Diabetes and Parenting, featured, for type 1 and 2 diabetics, For type 1 diabetics, headline

The Case for Diabetes Cure Hope

Submitted by on March 6, 2013 – 3:04 pm3 Comments

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It takes bravery and guts to hope.  It’s a leap of faith.  There’s a vulnerability in it.  I love those qualities in people so I always encourage myself to feel hopeful about things.  Even if I’d rather put myself in a more protective state and cross my arms, shake my head, and tell myself that hoping is for ignorant suckers.

It’s not.

It’s beautiful and scary and takes patience.  I also believe it sets a very particular vibe that positively touches everyone and everything around it.

This week we heard two news stories come out about diabetes research.  I find them both uplifting because it gives me the feeling that we’re moving in the right direction, that we’re learning more things, and I’m reminded with this news that researchers are working on figuring diabetes out.  All that encourages me.  I’m doing my part by taking care of myself, and they are doing theirs by making strides in research-it’s excellent teamwork.

If I put myself in the frame of mind of a person whose child has type 1 diabetes, and I can’t feel what they feel, only I try to imagine more or less- I admit I feel an overwhelming sense of urgency and desperation.  I have a child that’s very allergic to some common foods and I see that as much easier to handle than a child with type 1 diabetes.  And even with my situation I feel desperation.  I’m anxiously awaiting relief of my way of life which includes more fear, home cooking, and limitations for my daughter and our entire family than we’d otherwise have.  I’m working on this.  I’m constantly trying to keep fear in check, to recognize that home cooking is healthier and cheaper anyway, and trying to see that limitations are only what we view them as.  In other words, I don’t live by the ocean and as a result, don’t get to see it often.  But I don’t view that as a limitation, it’s just the way it is.  Well, we don’t eat out due to allergies and it’s just the way it is for us.  The real tragedy in our case would be lack of food or epi-pens in a time of need.  So perspective and gratitude is huge in our day to day happiness.

However, type 1 in children is a complicated beast that puts a child in danger 24/7.  Is there anything else like that for a child outside of other serious conditions and extremely harsh living environments?  What I’m saying is that the seemingly irrational fear of parents of children with type 1 is something that really deserves our understanding, patience, and compassion.  Hope in their hands regarding a cure for type 1 diabetes is a very fragile thing.  And I’m just saying that I recognize that and cannot judge that position.

On the other hand as someone who made it through childhood with type 1, I feel much less fear and desperation for a cure for myself and unchecked I actually feel a tinge of pride and arrogance about how I’ve made it without a cure and all while being told every five years that the cure was right around the corner.  What did that do to me?  At first I felt like a ragdoll in a child’s hands.  Then I allowed it to give me a little bit of a shell.  A rigid, chilly shell.  But over the years I’ve let that go because like I said earlier, it’s a beautiful thing to feel hope.  I prefer being soft, pliable, open, and able to adapt to change.  I hated how at 13 years old, I felt embarrassed to show positive emotions because of how that emotion could turn sour all of a sudden and someone might witness that and I’d publically lose face.  I secretly preferred and longed to get myself back to a time when I would hear happy news, smile and leap for joy and then have my hopes dashed and suddenly pout and sigh from a sense of loss but soon get over it.  Am I saying I’d like to be like a child again?  Kind of yeah.  I watch my toddlers and am constantly amazed at their range of emotions in such a short time span.  They feel what they feel when they feel it.  Then they let it out, let it go, and move on.  It’s healthy and sweet and vulnerable and I admire and cherish this about them.  I also can’t help but notice that most children do this and it’s partly what allows them to generally learn so quickly, be so happy, and forgive so easily.

So for those of you with a bit of snark about the news that seems blown out of proportion or who feel that you’ve lost all hope and trust because of past promises about a cure, I understand that, too.  But, I wish for you to let go some of the pain from the past because well…it seems like a miserable weight to carry around.  Hope is light and energetic and doubt and sarcasm seem like the opposite.

No matter what, those of us with diabetes have it right now and that means we have to deal with it.  It begs to be managed and so our best bet is to live in the moment with it.  Not easy, I know, but what’s the alternative?  After all, nothing about having hope means ignoring reality-that would be more accurately described as delusion or assumption or arrogance.

But allowing hope to help us through our reality, well that’s it’s greatest purpose isn’t it?

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3 Comments »

  • Sarah says:

    Excellent.

  • German says:

    Hope- you never give up! It keeps us going; requires persistent action: make things happen!

    Great post Sysy!

  • A friend! says:

    My late mother was, sadly T1D, so I’ve always had a bit of an interest in the slow progress toward a “cure”. I know people have felt disappointed in the past – but, I think “interesting” things are starting to fall into some sort of shape. Two names to watch “Orgenesis” [T1D] and “Mesoblast” (T2D) AND…wait for it….”Mesoblast” again for all D’s for complications – yes, no promises, but “interesting” things are happening – do your own research to your own satisfaction!

    Go Orgenesis…..
    Go Mesoblast…..

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