My son John has had type 1 diabetes since age 4 – he’s now 15.
I noticed recently on the JDRF twitter feed about #NationalConversationWeek. This got me thinking about Stephen Hawking’s voice in the Pink Floyd song – Keep talking. The hope that he brought to millions of not only defying all odds, against diagnosis and prognosis, but of his positive visions for the universe and humanity. In this quote, I take personal hope that we need to “keep talking” (about a cure for type 1 diabetes):
“If human life were long enough to find the ultimate theory, everything would have been solved by previous generations…” Stephen Hawking.
Banting & MacLeod
Let’s talk about this – they helped to treat dying children with insulin, previously harvested from animal pancreatic supplies. These two prominent, hard working scientists worked endlessly on their mission to save lives. They were true pioneers. If they had not been so dedicated and focused, these children would have died.
Fast forward nearly 100 years and this insulin now saves billions of lives. Their breakthrough with this life saving drug was, none more than a miracle, in my opinion.
Does it make you think why then? Why did they find those answers at that point in time? And what are the new age revelations for our generation and that of our children?
As a flipside, it’s not all plain sailing – what about the side effects of insulin treatment – what about the realization now that intensive insulin replacement treatment can cause severe hypo’s at any time, bringing severe risk to our lives and that of our children. What about the toxicity of insulin? Bringing me to The Verve – The drugs don’t work. I understand insulin works, in that it can lower blood glucose – rather than regulate it.
How to help make life better/ easier? Radiohead – Fitter/Happier
The impact of technology now seems to be highly fashionable in the quest for monitoring and preventing side effects of insulin replacement. From glucose monitors to phone apps and constant alarms and interaction with data. Turning some of us parents into mini data scientists and predictive glucose trend setters – just look at the growing population of NightScout users and developers – using Open access to view glucose trends in the cloud, and view data on wearable devices – to constantly interact with dose adjustment of this drug. I can hardly avoid mentioning Red Hot Chilli Peppers – Blood Sugar sex Magik here can I?
I recently submitted my first draft of my Masters thesis on the topic of technology and type 1 diabetes, and I hope to continue my path of being a parent of child with type 1 and a researcher, with enough sleep and sanity and insight to be able to help those who need it most. But a lot of the time, I push against feelings of tiredness, helplessness at not being able to fix my child and forging ahead with a sense of hope and strength. I don’t know where it comes from to be honest because sometimes this shit gets so difficult. In quiet moments, in the car, or at the beach this song talks to me – First Aid Kit – Shattered & Hollow
Something inside of me this morning feels like a wounded animal, having opened my son’s bedroom door at 7am to find a trail of empty cans of full sugar coke cans on his floor, and him unable to waken from tiredness – having treated a hypo in the wee hours. Why didn’t he waken me? Is he too tired for school this morning? Should I let him sleep a bit longer – knowing fine well that in a year or two he’ll have left school and will be expected to drag himself out of bed, shattered and feeling like crap – to get to work or college or university! I should have been there for him last night, I should have woke up and treated his hypo, like I have for the most hypo’s in the last 11 years. Insert here – Fleet Foxes – If you need to, Keep time on me & Opeth – Burden. Two songs for the price of one here folks!
The mind plays wonderful tricks on us to keep us in fear of these hypo’s , these times when our growing, teenage children will venture into the world without us (that reminds me, should I order him some Medical ID bracelet, that I know he won’t wear).
Sadly, after such a long time dealing with my son’s condition, I have created habitual thoughts of fear. Fear of him feeling the burden now that I softly hand this over, bit by bit. Fear that people will judge him – what if he’s on a train one day, having a hypo and people think he’s drunk. Will they help him? Fear of him being sacked from a job because he can’t deal with the tiredness. Should I bring in a classic oldie here – Blue Oyster Cult – Don’t fear the reaper!
In order to get society to understand the relentlessness and tiring effect of managing type 1 and glucose levels everyday, it seems that we need continued press coverage to rise about the loud voice of mythology – “Diabetes and obesity on the rise” etc – this voice that has filled with nation with a belief that our children with type 1 diabetes had any hand to play in their diagnosis. It’s widely known in the diabetes community that type 1 diabetes is autoimmune, and cannot be prevented – but let’s talk about it on the street. Let’s see how many people know the difference?
I took my son to a chiropractor recently who felt she could manipulate his spine to help with his headaches, and back pain. When I explained he was type 1 – she said “That’s ok, isn’t it the other one that’s worse anyway?” My heart sank.
When I called a local boxing club for my son to join, the man said “his diabetes won’t be affected madam, he’ll be fine. He’ll be punching a lot for the first few weeks so he’ll be just fine”… Again, that sinking feeling.
If only we didn’t need other people to understand, but we do. We have to have our children integrated into society. A society which doesn’t really know how to help or understand what the heck is going on. I believe a lot of this is to do with the damage done by the media over such a long period of time. Presenters who never distinguish between type 1 “diabetes and type 2 “diabetes” when all they ever use in their language is the word “diabetes”. A blanket expression. For this reason, and many others associated with the plethora of injections we give our children (and the fact that he is also type 1) I nominated The needle and the damage done – Neil Young as my next song.
As I finish this little ditty, I reach out to all the other parents/caregivers who wake in the middle of the night, or who stand at the sides waiting with sugar (candy) in hand – just in case there’s a big, bad, hypo awaiting. I literally cannot listen to this song anymore without crumbling.
Candy – Paolo Nutini
“Oh, darling I’ll kiss your eyes
And lay you down on your rug
Just give me some candy
After my heart”
Do you have a song or a memory like this? Share with me. I look forward to hearing from other parents who cry at songs, who have quiet moments of contemplation with songs, and who secretly enjoy their child’s fascination with rap (that’s me).
To my son John “I let my tape rock , ’til my tape popped”.