I am an advocate for people with diabetes. I am one because I have a child with type 1 diabetes. I did not choose to become one, but rather was compelled to become one after my daughter was diagnosed just a few weeks past her second birthday. It is my passion now.
Type 1 diabetes isn’t just a disease for which there is no cure. It is also a disease plagued by misinformation, stereotypes, stigma and blame. Many people still believe that you can get type 1 diabetes by eating too much sugar. The majority of people with type 1 diabetes will tell you that they have had to battle these misconceptions and stereotypes at some point in their lives, or have been the victim of judgement and ridicule. And many parents of children with diabetes have found themselves in situations where they have had to explain to the ignorant among us that they did not, in fact, indulge their child in too much candy or let them play video games rather that go outside for exercise, causing their pancreases to punish them for an unhealthy lifestyle because of poor parenting.
It gets old. And it can, at times, be hurtful. But it is what it is. Ignorance.
Now, as a nurse, long before I had children, I have had under my direct care, elderly patients who have battled type 1 diabetes for many years. They beat the odds and survived into old age; for, to be diagnosed in the 1920’s or 30’s with this disease likely meant a considerably shorter life expectancy than an individual diagnosed today. But they often didn’t come away unscathed by this ruthless disease. I have had amputees under my care. I have assisted a blind woman with her activities of daily living, her sight stolen by diabetic retinopathy. I have dressed toes, blackened and necrotic due to advanced peripheral vascular disease secondary to type 1 diabetes. I have arranged transport every week for a patient with diabetes for their weekly course of renal dialysis. And I have terminated that transport when the same patient made his decision to stop renal dialysis because it had become too exhausting to endure, knowing that this decision meant he would not live much longer.
I have seen far too much to be afforded the comfort of ignorance and denial about what my little girl could face at some point in her future.
My beautiful Jenna.
I also know that today, because of better therapies to treat this disease, the chances of our children with diabetes having to endure these horrific complications are reduced significantly. But they are still a risk. My little girl has spent the past three and a half years with a medic alert bracelet on her wee wrist; three and a half years of this disease waging war on every organ and system in her body. Three and a half years isn’t a long time, but when you consider that she has had diabetes for 70% of her life already and when she is twenty years old, this disease will have been chipping away at her health and longevity for over 92% of her life, it doesn’t take a nurse to realize her chances of developing complications are not minuscule, even with diligence and modern medicine working for her.
From my perspective, there is nothing funny about the complications of this asshole of a disease. Even before I was the mom of a child with type 1 diabetes, or even a nurse, I never really got the humour in making fun of people with disabilities, diseases or special needs. To me it feels like the humour of bullies.
So you’ll forgive me for taking exception to this “harmless” little limerick written by a very popular and well liked humour blogger
Normally, I let stuff like this go. I’m not one to speak up and open a can of worms that would cause me to have to defend my hurt reaction to ignorant people who are only too content to remain so. But for my daughter’s sake I saw an opportunity to raise some awareness and perhaps change a few hearts. So I penned a letter to the author of the blog:
I’ll be honest, this is the first time I have visited your blog. I found a link to your most recent post on my Facebook feed. I’d be willing to bet it is also one of your shorter posts, which makes it interesting to note that it appears to have generated such a long comments list.
I am the mother of a five year old little girl with type 1 diabetes, diagnosed at the tender age of two. Clearly, you are an intelligent woman who writes a popular blog as you have a whole slew of people, your readership, who have your back. They have fiercely come to your defense when some people took exception to your limerick. And I do have a sense of humor. Really, I do. And I am sane. And I have no stick up my ass (as far as I know). And I can laugh about certain things pertaining to my child’s disease. When you live with a chronic condition every minute of every hour of every day for three an a half years, you learn to laugh about certain stuff.
Here’s the thing: What we live with? Parent’s of children with type 1 diabetes? It is something that breaks our hearts every single day. We watch our children go through a fuck of a lot. EVERY. DAY. And another part of our heartbreak is worrying about what their futures hold for them. Will they one day need toes or feet removed?…below knee or above knee amputations? Will they go blind? Will they develop hypertension, cardiac or kidney complications and the list goes on. So it is a lot to ask of people who are so emotionally invested in this disease to “lighten up”.
We also deal with the misinformation and judgement every single day. People asking me if my child drank too much juice as a baby, was overweight, or was given candy. And what is most heartbreaking about that is knowing our children will be out there dealing with this same misinformation and ignorance on their own one day too, much like the adults with diabetes do who took exception to your limerick.
I know you meant no harm in what you wrote. I don’t think you are a malicious person in the least. From reading a few other posts on your blog, you have your own crosses in life to bear. You’re no stranger to life’s shit piles. And you have chosen humor to deal with it. But what if it was your child with the chronic condition? What if your child had a disease that could do all that stuff I mentioned above and more, even IF you did everything in your power, every single day and night to try to avoid it? Can you honestly say you would have no problem whatsoever with a “harmless” limerick like that?
Perhaps we are a little hyper-sensitive. But you have no idea the fears we have for our beautiful children’s futures, both near and distant. They are fears that I keep hidden away. To let them exist at the surface would cause me to be a non-productive, despairing mom. I couldn’t function. Your limerick, took my breath away when I first read it. My heart went into my throat. It felt so cold and heartless. It brought to the surface all those fears and what-ifs I have as the mom of a child with this horrible, relentless disease. That, I guess, is my problem. But I think, if people consider this situation in the context of something that brings as much fear and heartbreak to them as my daughter’s diabetes brings to me, people might have more understanding as to why your limerick hit a nerve with some.
I guess what I am trying to accomplish is an increased awareness. I don’t expect anyone to recant their enjoyment of your limerick. I understand that not everyone has as much sensitivity to the plight of diabetics (both type 1 and 2) as those of us who live with it every day. And I am aware that some people with diabetes enjoy this kind of humor. But there are a great number of us who’s breath is taken away by something this callous – who’s hearts leap into our throats – even when the horrible, frightening reality of what we live with is presented as a “harmless”, clever limerick.
Thanks for the listen.
I didn’t expect much to come of my letter. I knew going in that it would likely draw more negative attention to me and my sensitivity than I was comfortable with and likely prompt some people, namely her fans, to launch an attack on me for being too PC and touchy.
And it did.
I had made up my mind that the most positive thing I would likely get out of this was a cathartic effect–a release–and that would just have to do. I did not expect Jenny, the author of the blog, to write a private email to me apologizing for the hurt her words caused me.
But she did.
She was kind and understanding and I got the sense that she was allowing me to see her serious, sincere side as she made an attempt to right a wrong. She too is a mom, after all. She explained that her brand of humour isn’t for everyone, but it is her way of dealing with the hardships and battles she has endured in her own life. I was truly touched by her sincerity. But she made it clear that her response to my letter would not be published on her blog as that was “…a place for laughter, not debate.”
It’s just too bad not everyone was laughing.
I know that this disease isn’t my disease, it is my daughter’s. And I know Jenna may grow up to find this sort of humour amusing. That’s fine. That’s her choice. I don’t know that I will ever be okay with it, though. It’s just not in me. It feels wrong, callous and hurtful. And right now, while she is only five years old, I will do what parents have done since the dawn of time and advocate for her until she is old enough to advocate for herself.
Another good thing came from my comment and it came in the form of a comment I received on my blog. It is Laura’s comment – the third one down.This really warmed my heart and validated my hurt and the hurt all parents feel in the face of ignorance and hateful judgement directed toward our children with special needs, whatever those special needs may be. Laura got it. And what’s even more awesome, she had the balls to write to me publicly and say so.
All in all, I feel like speaking up was the right thing to do and something pretty awesome came out of it. And at the end of the day, a few more people out there are a little more aware of and sensitive to what people with diabetes are up against.