Blog week Monday: What gets me fired up about diabetes its care, and issues about misconceptions?

Blog week Monday: What gets me fired up about diabetes its care, and issues about misconceptions?



I suppose we all have a list of what get us fired up about diabetes.  Mine is oh let’s say about, I don’t know maybe 10 miles long? I know there is really no point in anger, anger is counterproductive, anger is self-defeating or anger is pity turned inward. I get it. But oh I get so angry about this disease. I get angry about watching what I eat, how I play, when I work, taking blood sugar going low or losing my freedom. I hate all those things and yes on successive days I get pretty fired about one or all or some dumb combination of these things.

I used to dream of the days (or remember them mostly) when I was 16 and the world looked like it would be mine. Pre diabetes, pre shots, pre testing, pre caring what I ate and when. I can barely remember that world today. Today that world is lost forever. It was nearly 40 years ago and while I still have some glimpses of it, I realize it is gone.

So what am I angry about? After what I just wrote you will likely be surprised. It seems like I am so self-absorbed how could I think about others? But what I am angry about are both past and future. In the past I am angry that this dam able disease took the life of my mom. I am so angry that for a little over 28 years mom suffered with the fact she could not test her blood sugar, that she cried when her glass syringes broke or that she lay motionless at age 48 as my dad and I had to decide if she should be put in hospice. I hate that the reason she was in that position was that diabetes, kidney disease and nuropathy robbed me of seeing her grow old. That her fight was so personal and painful that losing her seemed almost a relief. I hate that when I told my grandma that we had to place mom in hospice, that grandma said I had betrayed her and my mom for ending the 20+ year fight to live.

I hate that my sons never knew a day without diabetes in their lives. They had to know how to give apple juice when I went low, worry about their dad or care about something called complications. I hate that my wife of almost 37 years never knew married life without chronic disease hanging over our marriage. That she works, worrying while I stay at home and think about reasons to touch base that she will know I am ok. I hate that when she came home 4 days ago she found me passed out my blood sugar 37. I hate that the last thing I remembered that day was 4:00 PM when I tested my blood sugar.

If all that hate is not enough I hate that my grandchildren or their children may someday face this awful disease. I hate that they may find how difficult this disease is, how life changing it can be, and how ugly it can get. I hate that I have worried for my wonderful son’s day in day out for over 30 years and now my grandchildren. I hate that if any of them ever have this disease, it will be me, all me who passed it to them. I hate that someday I may have to look at them and say I am so sorry, just as my mom told me she was so sorry. I hate that someday I may have to tell them I prayed every day for 35 years that they would be spared and yet those prayers were not enough. I hate that even if they are all spared that someday as sure as I live, one of their descendants will have this disease and no matter who their ancestors are, when one of them get the disease, it will be my doing that gave it to them. How else can you feel except that you have passed it along?

So with all that hate and anxiety, how do I go on? Well I also hope and I have action. First and foremost I follow my mother’s wisdom and I volunteer for diabetic studies, and clinical evaluations. Why, because prayers do work, but so does action. Action like being in the phase 1 pump studies as my mom was. Action like testing my sons and grandchildren to spot diabetes early if it comes at all. Action like learning about this disease so I can help myself. Action like loving them more than I love life itself because someday they may need to know that despite their diagnosis they are still loved even if they don’t feel worthy. Oh and I laugh. Because laughing in the face of such pain makes it smaller, and less threatening. It breaks the grip it has on my life.

But most important the one thing I do to save myself form all this hate is telling my sons and grandchildren the truth when they ask, but reminding them every day of a more important truth. That truth that they can do anything, and that they need to set their sights high. I tell them be more than you think you can be. Nothing can stop you I tell them.

The thing I hate the most about diabetes, is that I might be telling them (especially the little ones) a lie. In today’s world something can stop them, I hope it never visits and if it does I hope we have advanced far enough to make it a moot point. My hope is that I have done enough it is after all the greatest hope I can hold on too. Not that it can be defeated for me, but that diabetes can be defeated for them. It is the hope my mom had and despite the 5 year cure, it is the hope I hang on too. Not for me, rather that it can be defeated for my children and grandchildren.

-30-



rick

Views: 127

Tags: Phillips, dblogweek

Comment by Clare on May 12, 2014 at 10:30am

There's a lot of hate in this rick. But what I took away more than the hate is the hope. I don't have grandchildren yet but I feel your fear and guilt at having passed on the "diabetic DNA" to your sons and their children. I am the only PWD in my entire extended family so the onus would be completely on me if my son or potential grandchildren were to get D. But I have a lot more confidence than you do that we will see a cure in our lifetime. My parents were told there would be a cure in 5 years as well and while obviously that has not happened, I am encouraged by some of the recent research and work being done on the immune system. But until there is a cure, I will do my utmost to learn as much as I can to live well and thrive with D. I'll participate in clinical trials and advocate for myself and PWD. I will show my son a confident, self assured mom who just happens to have D.

Comment by Emily Coles on May 12, 2014 at 1:53pm

The rage in this blog hit me hard, Rick.  It's palpable, and alarming, and I SO appreciate it.  Positivity is great, of course.  Recognizing what diabetes has taught us, how it makes us stronger, etc. is crucial, in my opinion, in order to have a good life with diabetes.  But to me the real truth is that we find and create those positive things out of shear determination to find something positive, because in truth this is a hateful condition.

We get a pile of pooh, and with it we create beautiful sculptures :)

Comment by Kathy on May 12, 2014 at 1:54pm

Great post Rick. And you, my treasure, are a beautiful friend.

Comment by Colleen in NH on May 12, 2014 at 2:48pm

Wow...

Comment by Erin on May 13, 2014 at 10:24am

I'm having a hard time putting my thoughts about this post into words. Every word you posted rings so true for me. I am angry. All the time. Anytime that my son drinks even a little more than normal, I have my meter out and test him. He's only two and already knows to be afraid when I grab his hand and have a lancet in mine. I'm angry that he has to know that. I'm angry that that's the first thought that pops into my head. Thank-you for posting this. I've never been able to put it into words myself so thank-you for doing it for me.

Comment by Trudy on May 13, 2014 at 11:24am

"...I hate that my grandchildren or their children may someday face this awful disease. I hate that they may find how difficult this disease is, how life changing it can be, and how ugly it can get."

These words resonate with me, but I find myself reminding my grandchilden to watch for the symptoms of Celiac Disease, which also takes a toll on one's body. Rick, I think this blog holds more passion than I've ever read before in a blog. I can only say that I do try to find some hope as well as hate.

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