(photo by Nancy Wilson Fulton)
Patricia Debney was born in Texas and now lives in Kent. She is the author of two books: a collection of prose poetry, How to Be a Dragonfly (Smith Doorstop Books, 2005), which was the overall winner of the 2004 Poetry Business Competition; and a novel, Losing You (bluechrome, 2007).
Her short stories and poetry have appeared in various anthologies and journals, including New Writing, Tales of the Decongested, and the Forward Anthology of Best Poems, as well as online. She has written libretti for opera as well as for solo voice. She was poet-in-residence at the 2007 Deal Festival, and a judge for the 2007/2008 Canterbury Festival Poet of the Year. She has taught creative writing for over fifteen years across all levels and stages: for Arvon, adult education, in prisons, and in schools. She is currently Senior Lecturer in Creative Writing at the University of Kent, where she teaches on both the undergraduate and MA programmes. In September 2007 she was appointed the first Canterbury Laureate. She lives in Canterbury with her composer partner and their two children.
Waving and Drowning 
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April 25, 2010 at 2:53 pm
nicky
Just had to tell you how your article in Balance, struck a chord with me. My son (now just 18) was also diagnosed with type one at 13. He has struggled to cope and only three days ago had his first seizure. I cannot tell you how sick and scared i feel reliving the moment. why had it happened how could it have been avoided. And knowing that there is no definitive answer, there never will be because there are no set rules or reasons for this disease. The grief for the loss of an ‘innocent life’ never goes and was I always going to be the nag of his life or has diabetes just made me one. He is due to go to university this september and I cannot sleep thinking of who is going to look out for him and check that he is awake. We have been trying to get him on the pump…I believe now they are equipped with glucose monitors..and have a meeting this week to push more…but how long will it take for him to come to terms with a pump and will it be compatible with all the sport he wants to take up.. I have only just read the current section of your blog and you seem to be having problems but I dont know how long E has been on the pump. But its good to know other people are there…….
April 25, 2010 at 10:42 pm
Patricia Debney
Nicky, thank you. It’s so, so terrifying and difficult, yes. I’m so glad you’ve got in touch. E has been on the pump since June 09. He hasn’t had a seizure (yet? I hope never…) — how absolutely horrible for him and you. A pump is a great idea, yes — maybe get in touch with Tom H on the Diabetes Support Forum (also in the article) — he’s 19, at uni, and has just started on the pump…. The glucose monitors are separate but if you can get funding I would think they would be INVALUABLE while at uni…this is what we will be pushing for for E when he goes away too. At the moment though he doesn’t want to wear one — another thing in his 24/7 — although we’d be delighted if he did.
Please stay in touch. I’m not sure we can do anything but be here for each other, exchange stories and ideas, support each other, help our children toward healthy lives — and maybe ourselves along the way? We hope, anyway… Thinking of you.
April 27, 2010 at 3:31 pm
Sal Pepper
I am so pleased at last to have found someone to talk too through e-mail. My son has had Type 1 for 5 years, diagnosed at the age of 10. I didn’t know anyone with diabetes and had only stumbled on the diagnosis on a quick trip to the local cottage hospital as his eyes were blurry. No-one can prepare you for the shock, loneliness, or as it has been put, grief that you feel. A whole host of emotions and that was only me! My son as usual dealt with the episode with great maturity and immediately starting his own blood testing and injections.
My husband and parents were away, another child at home, two dogs and a full time job nearly found myself split in two.
As time has gone on we have adopted a routine to suit our family life and for Diabetes not to be a hindrance. My son does everything a normal 15 year old should do and eats whatever he wants with the flexibility of injections.
It is me that worries 24/7 and wonders how he is going to cope with each new phase of his life. I am already worrying like you about university and who is going to check on him when I am not there. I sometimes have to hide my feelings so as not to worry other members of the family. When I get overwhelmed I get cross with myself for letting it upset me but sometimes I feel so sorry for the life he has to lead. My son gets cross and says that he lucky it is only diabetes! which breaks my heart as he is so thoughtful for others.
I wish you well with your son and university
April 27, 2010 at 9:40 pm
Patricia Debney
Sal, so moving. Yes yes and yes. Keep in touch. It’s hard when our children seem braver than we are. I feel like this all the time. I think we want for our children what they can’t know about yet…and so we feel it. Whereas they take one day, one week and one year, at a time.
Sigh. But you sound okay Sal, despite it all. How can we ignore this? We can’t. You cry, and get on. But please remember that — lordy! — we all know what it feels like. We all must be so different, but we feel in some ways so much the same. Of this I am sure.
Take care. Stay in touch. And good to hear from you.
xxoo Patricia
April 27, 2010 at 11:10 pm
CAROL
jUST REPLYING TO NICKYS COMMENTS. MY SON IS 21 AND HAS BEEN TYPE 1 FOR 7 YEARS. I CAME TO THIS SITE THROUGHT THE ARTICLE IN BALANCE, BUT RELATE TO NICKYS PROBLEMS. MY SON HAS SUFFERED 2 SEIZURES IN THE LAST 4 YEARS AND I RARELY SLEEP A NIGHT THROUGH, CHECKING HIS SUGARS AT LEAST ONCE IN THE NIGHT. I WORRY WHEN HE STAYS OUT AS LIKE NICKY ,WONDER WHO WILL LOOK OUT FOR HIM. I TOO RELIVE THE EPISODES AS THEY WERE SO FRIGHTENING AND AM ABSOLUTELY TERRIFIED OF THIS HAPPENING AGAIN. DIABETES IS SUCH AN UNPREDICTABLE ILLNESS. MY SON DOES NOT SEEM INTERESTED IN HAVING A PUMP EVEN IF HE WERE OFFERED ONE, WHICH DOESNT SEEM LIKELY AS HE DOES NOT MEET THE CRITERIA. IT IS INTERESTING TO KNOW HOW OTHER PARENTS HANDLE THESE SITUATIONS, AS WHEN YOUR CHILD BECOMES AND ADULT YOU DO NOT HAVE THE SAME CONTROL.
April 30, 2010 at 8:05 am
Patricia Debney
Hello Carol
Good to hear from you. I really don’t know what to do about this fear — we all seem to have it to some extent. My son has not had a seizure (touch wood) — but I am terrified of finding him in a situation like this…
Keep reading. Please know that you can always come here to ‘meet’ others with teens with T1. I’m wondering if people would like a page on this site for parents to chat? Everyone seems to have gravitated to this ‘About’ page — maybe I should leave it all here? But the teen demographic doesn’t have a home anywhere else, and maybe carers of teens need a place which is out of the limelight of the larger forums? What do you all think? I’m also happy to leave this as is of course…
Take care.
xxoo
April 26, 2010 at 8:12 am
Clare Hamilton
My daughter screamed when she saw your family picture in Balance as she talks to E on Facebook! Also, just to remind us how small a world it really is, I recognise you from Kings Rec (we once had a chat about the school disco) and a friend’s daughter knows your daughter… don’t know anyone (yet) who knows your husband though…
Cora was diagnosed at age 4 and a half and is now nearly 14. My grief and anxiety do not go away and have increased with puberty. Her cries of denial, anger and ‘why me?’ are often balanced with ‘I’m actually very lucky, it could be worse’. Blood sugars do yo-yo and weight is another issue and it is very hard to find the correct insulin/food balance. She has asked to have a pump so we are on the list and I will read your blog for any info.
I will say Hi when I next spy you at Kings. Beautiful day for the beach hut!
April 26, 2010 at 9:37 am
JACQUI fRENCH
Patricia, I have just seen your article in Balance and it brought home all the feelings fears and grief I felt when my son was diagnosed at the age of 10 (now just turned 16) I’m afraid they have never really gone away. This I have always felt is a failure on my part as a mother and someone who is normaly very realistic about what happens in life.
Over the past year Toby has been extremely difficult over his diabetes control, (having prevoiusly been excelent) with sudden growth, puberty , new school ect the challenge and fear has yet again raised its ugly head.
We are also trying to encourage him to go on a pump but it falls on stoney ground and there is no room for discussion. Hoping to succeed before Uni.
Friends tell me this difficult time will pass but in the mean time as a mother you feel out of control and only hope he comes out the other side without doing himself too much damage but the internal heartache goes on.
This is the first time I have ever commented on anything so I think you have obviously hit a chord and I will follow your success rate with the pump. Goodluck. Jacqui
April 26, 2010 at 2:28 pm
Linda
Dear Patricia,
I also read your article in Balance with interest and empathy. I felt the desire to write about my younger sons diagnosis 3 years ago when he was 11, but lacked the skills to dos so effectively. I am more of a numbers person! I am sorry I couldn’t share my experiences with you. I too cried a great deal when I was on my own at the begining.Our diabetes nurse suggested that I was grieving for the loss of my healthy child, but I also think I was crying for myself if truth be told. As my job at the time required me to be away from home, I decided to wind down my consulting business and be at home. I could not envisage guiding a nanny through the necessary care when I had no idea what would be involved.
I had been wondering what the future might hold for him at university or whatever he choses to do, but recent events mean I will have experience of this sooner than planned. Six weeks ago my elder son, who is 17 and due to go to university next year was also diagnosed with type 1. The tears are back with a vengeance but I am not quite sure why this time. Hopefuly the next few weeks will see us all move forward, but I am not sure whether I will ever stop blaming myself for their lack of health.
April 26, 2010 at 4:57 pm
Patricia Debney
Hello Clare, Jaqui and Linda
How diabetes seems to bring people together!
Clare, I do remember you! And I knew that E corresponded with someone at the girls’ school, but didn’t know her name. How wild. I’m glad they are in touch. He knew she was keen for the pump, for instance…! Yes let’s make sure to touch base whenever and wherever. Always good to know of each other’s existence.
Jacqui — and actually everyone else too — I can so relate to your feelings. Not that E is there yet, and I hope (against hope) that he magically avoids this hiccup, but the sense of being in some control of things for your child is so important. I would hate to give that up. Saying that, already signs of E taking on his own decisions are here: he doesn’t want continuous glucose monitoring, despite our asking him to have it. He often overrides a suggested bolus — he feels he knows himself, but I think too also feels he has the right to determine it. Quite right. But hard to balance with good control, of course… We are lucky that his growth seems to be coming at a time when he still is compliant, or at least still talking to us. He is shooting up now. But yes, the swings are diabolical, and worrying. Waking levels have not been in range more than once or twice now in two weeks. And yet even the level of the high is so variable…Argh.
And Linda: I feel just heartbroken for you. I can’t believe it. Yet I know it happens. Having my other child diagnosed is a huge, huge fear of mine. I feel that this would do me in. But of course it wouldn’t and can’t. I’m sure you’re right: we grief for the loss of our children’s innocent lives, but also for the loss of our *own* innocence. I really feel that no matter how many things we’ve gone through in our lives — for me, quite a few traumatic things — nothing can pave the way for the whole idea of ‘forever’, and the big, crushing disappointment in our lot when something like this happens. It’s not selfish — it’s natural. You have every right to ask ‘why me’ and ‘why my family’? It’s bad luck, unfair and so heavy so often. No one would wish for this, and no one who experiences it would ever expect those feelings to go away. I’m so sorry the worst of it is back for you. All I can do is say it again: I’m just plain sorry.
You know from experience that things will lessen, and that the rawness will ease somewhat. But there’s a lot of despair attached to chronic conditions, for everyone. Depend on those who can help and support you. Let them do so. You will be able to return the favours in time, and naturally.
(I’d also strongly suggest for anyone who’s interested — go onto http://www.diabetessupport.co.uk. I think this forum is invaluable. So active, so warm and supportive. Check out the General Messageboard, the Parents section and the Newbie section. You will find at least two others there who have joined because of the Balance article, with teenagers who are at times not doing so well. You will also find several families there with two T1 children.)
It’s so good to hear from everyone. This is precisely why I wrote the article and am going to write more. Dealing with all this can feel so, so isolating. It did for me, anyway. I’m so glad to meet you all, and hope we can stay in touch.
All best wishes.
May 3, 2010 at 12:29 am
CAROL
Hi Patricia and thanks for your reply,
I think that its a great idea to have a page where parents of teens and above can chat. It helps so much to talk to people in similar situations. When your child is small, you do have a measure of control, then suddenly into senior school and from there on it can become a battle. You still go to hospital appts etc, but are constantly told that your son is an adult and has to manage his diabetes himself. In theory that sounds good, but you never stop being a mother , and the worry doesnt go away just because they are older. I related to so many of the feelings you wrote about in your article, but I never expressed them to anyone because you feel you have to be strong and cope with things. I am a realistic person with everything else in life, but not a day goes by , even after 7 years , that I wish this illness didnt exist. Not very realistic, I know!
May 3, 2010 at 8:20 pm
Patricia Debney
Hi Carol
Okay well I think you might be right. Nothing to lose, anyway. I’ll make a page for parents/carers of teens — it’ll take me a couple of days! And what I may try to do is shift this all over there…Hmmm..! Don’t know if it’s possible.
But I can really see the value. People can visit the blog and also be in touch with long term type 1’s elsewhere — like on the diabetes support forum, which I love so much. I’m sure that long term type 1’s are perhaps THE most useful people for our teens to be in contact with…
But for us, perhaps we do need something which isn’t directly connected to an organisation, but is a place to go. We can try it, anyway.
Anyone else have thoughts?
xxoo
May 5, 2010 at 11:01 am
Lyndsey Kte
Hi
I have just read your article in balance. My son was diagnosed last summer at the age of 14 with type1. At the time he was relieved thay had found out what was wrong with him as he had been feeling really ill and was very lucky he hadn’t gone into a diabetic coma at the time. At the beginning he was great did all the injections and blood glucose testing and I was so proud of the way he was handling it all. It is a different story now though! He hates his diabetes, doesn’t want to talk about it with anyone. He is not managing it very well and his blood sugars are all over the place. He knows all the consequences about not injecting correctly but nothing seems to convince him.. I think he is in denial and hates me reminding him to do his injections, blood sugars etc. I have had to step back and just let him get on with it as it was causing so much grief and arguments. His consultant has said that is what we have to do but as a mum it is really difficult.
May 6, 2010 at 8:17 am
Patricia Debney
Hello Lyndsey
Good to hear from you — but sorry things are so rough. It just seems so unfair that on top of the usual teen stuff, our teens have to try to negotiate doing the ‘right’ thing with their diabetes — when for most I think, the desire in their lives overall is to question what’s right and who they should listen to…
I’m sorry.
I’m going to try to set up a casual page for parents of teens on this blog. But I’m also now wondering about asking if my son wants to set up a teens with T1 facebook page. It makes sense to me that lots of teens won’t talk to parents and consultants. But they might talk to each other? My son is in contact with several T1s via facebook — local folks — at the moment. I think he will be open to trying to start a group.
What do you think? Could you all get your children to at least check it out?!
Take care Lyndsey. You are doing the right thing by being there for him through think and thin, and trying not to judge. He will be grateful for this, as hard as it is for you.
Also, I would recommend checking out the diabetes support forum that many on here and I belong to. I often think that long-term T1s are the best help for our children and us, given that many of them have gone through exactly the same thing.
In fact, I’m going to put up a thread on that to try to see what to do…
All best and keep in touch.
xxoo Patricia
June 10, 2010 at 5:06 am
Kate
Greetings, Patricia –
I found Waving, Drowning while searching for diabetes blogs, and it’s one of the most visited diabetes blogs on the web. Congrats!
I’m writing because I work for a new web site called healthetreatment.com. The goal of Healthetreatment is to enable individuals to share health and wellness knowledge so that others diagnosed with the same or similar conditions can learn from their experiences.
Here’s how the site works: visitors to the website take a brief survey that allows them to measure their symptoms and treatments against other people who have the same condition. By taking the survey, a catalogue of symptoms, treatments and causes for their condition is created from the responses.
At this time, we are trying to gather data from people with diabetes. The survey only takes five minutes and is completely anonymous. The results of the survey will benefit everyone by sharing the most effective medications, lifestyle changes and alternative treatments for diabetes.
Would you be interested in helping others by taking the survey?
The link is http://www.healthetreatment.com. All you need to do is click the “start the survey now” button.
Please let me know if you have any questions.
Best,
Kate McCulley
Patient Advocate, Healthetreatment.com
August 4, 2010 at 7:05 pm
Eleri
Hi,
I’m 18 and was diagnosed with type 1 about 5 months ago. If I get the results, I should be going to uni in September. I’m wondering what exactly a seizure is, is it a severe hypo? I feel as though I really should know this. Also could anyone explain the particular benefits of a pump at uni? A consultant told me that I would only be put on a pump in the future if I had really bad control.
Eleri
August 4, 2010 at 8:21 pm
Patricia
Hello Eleri
Welcome to this site – but I’m sorry about your news. You have a great many thoughts and questions; I would strongly recommend you going to http://www.diabetessupport.co.uk and having a look through some threads: there is a great pump section and also info on hypos etc.
A seizure as a result of a hypo is reasonably rare I think but may happen with a severe one.
Generally, you sound in need of support -Tom H on the site mentioned is at uni and newly on the pump, so he’d be good to contact.
Please stay in touch. All best wishes,
Patricia
October 23, 2010 at 4:09 pm
Rebecca Ireland
Hi Eleri,
I am 21 and also a type 1 diabetic. I have had diabetes for 13 years.
A seizure is a severe hypo, but not everyone will suffer from this. When my blood sugars go extremely low (this hasn’t happened in quite a few years now), I have a fit, I never ever remember this happening, but I know as a child this was extremely difficult for my parents to treat, especially if there was only one of them around when it happened. Having to hold a child/teenager down, whilst trying to inject the glucagon, must be hard!
I am getting my pump on January 11th 2011. The benefits of the pump are tighter control, better HBA1C’s, which will also make you healthier in the future. I don’t have bad control, but I have problems with sugar levels in the morning, and I have tried for 2 years to solve this with injections, and I cant, so my Diabetes Support Nurse, recommended a pump for me. If you are definitely interested in a pump, push your consultant for one, its your health and your future!
If you want some more info, http://www.diabetessupport.co.uk have a pumping messageboard where there are questions all about pumpers, and many pumpers you can ask questions!
Hope I helped 🙂
February 26, 2011 at 11:56 pm
Vik Bennett
Dear Patricia – I have read your blog with tears and fervent nods, since my son was diagnosed With T1 diabetes at 31 months, last August. Then, just recently, a mutual friend (Patience) suggested I make contact with you, to invite you to be part of a poetry project I am doing, to raise awareness and funds for diabetes (I am a poet, writer and small press publisher/creative instigator of Wild Women Press and Blissfool Books). I would very much like to make contact about this, and all the rest. Meanwhile, thank you. With wild wishes, Vik x
January 5, 2012 at 7:28 am
Patsy Giffith
The new Zune browser is surprisingly good, but not as good as the iPod’s. It works well, but isn’t as fast as Safari, and has a clunkier interface. If you occasionally plan on using the web browser that’s not an issue, but if you’re planning to browse the web alot from your PMP then the iPod’s larger screen and better browser may be important.