Slender threads

Until last Thursday, TD had long, long hair.  She cut it short after much anticipation (and some angst) and gave the pony tail to CANSA - the Cancer Association of South Africa.  They make wigs for people who lose their hair during chemo treatment.  She has wanted to do this for a couple of years now as a thoughtful, personal response to people living through cancer.  Most people  have been touched by cancer in some way - through a family member, friend or colleague.  Awareness about cancer and its treatment is growing, in part because the media have demythologised it, but mostly because people are less afraid to talk about it and more open hear what treatment is available.

Other equally potentially deadly diseases do not receive such attention.  Why do some illnesses still have stigmas attached to them, sometimes even blame.  Why are people quick to judge others who are ill, why do we even have a label called "Lifestyle diseases"?  Much publicity around diabetes  seems to have an admonishment with it.  A radio advert running on our airwaves at the moment says something like: "Do you have a glass of orange juice for breakfast, and energy drink on the way to the office, cola with your lunch?  Do you know you are setting yourself up for diabetes type 2?"  The advert is from the government justifying the proposed sugar tax.   People look at TD and assume unhealthy eating habits caused her pancreas to stop functioning.

Another illness that people don't want to talk about is depression.  Despite alarming statistics - about 7 out of 100 people suffer from depression at some time in their lives - it is whispered about with eyes averted as if it is something to be ashamed about.  I was thinking about this because depression, like cancer and diabetes, can be life threatening if not treated.  A week ago, a class mate of TD took her own life.  She was only 14.

We need to talk.  We need to destigmatise ALL illness.  We need to be more compassionate, less judgemental. We need to be kinder  - to others and ourselves.

Life can be a slender thread.  We can be hanging on,  hoping the thread holds, hoping others see that it is fraying.  Let's use our slender threads collectively to create a interwoven rope of support.

I hope whoever gets the wig made from TD's hair magically absorbs the love and support which comes with it. Every time I look at TD, I see strength and compassion and great beauty in her short hair.  And I want to hold her tightly and keep her safe.

Dear parents of T1s

We are not alone.  We are surrounded by people who care and can help.  Sometimes it seems that all our energy is concentrated on keeping our T1s safe and on the glucose straight and narrow, worrying about numbers and diets and uncontrollable stresses.  We get so focused on that, that we forget to pay enough attention to our own worlds.  Speaking only for myself here, I know that is not healthy - for TD, my family or me.

Everyone is part of a community, whether we acknowledge this or not.  Sometimes it is easy and people surround us, enfold us and support us. Sometimes it requires some effort on our part and we have to seek out communities where we can be supported.  None of this comes easily to me. I am used to coping.  I like to be in control to a large degree.  I like to be calm.  Nothing about children coping with T1 allows for these things.

When TD was in intensive care in hospital at diagnosis, we (husband, son, myself) were on autopilot.  You know how it goes - you cope because you have to, you deal with things as they get thrown at you.  It is a hyperalert state.

Into this world walked  P and her 9 year old daughter. We had met once before when they had just moved to Cape Town and a group of moms and school kids were enjoying a sunny day at a park.  She is Godmother to one of TD's friends.  We had met  before her daughter had been diagnosed with T1 six months before TD's diagnosis.  And she had come to tell me that I would get through this, and her daughter was there to show TD that she would be ok and they were both there to tell us  we were not alone.  This was a huge gift.  In the weeks and months that followed P helped me through with kindness, her vast knowledge about diabetes, and with friendship.  I am so grateful.

Other support comes from complete strangers: people far away in online communities who offer support to anyone needing it. (A big shout out to the TuDiabetes community!)  Friends, family, counselors all form part of the safety net.  My friends - who check up on me, drink tea with me and listen to me probably aren't aware of the huge role they have played.  Don't be shy to ask for help - it doesn't mean you are not strong, it means you are human.

There is a wonderful saying in my country: "Umuntu Ngumuntu Ngabantu"  Roughly translated it means "A person is a person because of people."  We are all in this together. Community is our strength. To all the people who make up the jigsaw puzzle of my life - thank you.

Introductions and Normality

Just to be clear:  TD stands for Teenage Daughter, NOT Teenager Diabetic.  I know this blog is about the joys and challenges of parenting a person with T1 diabetes, but it occurred to me that this gives such a small picture of our lives.  TD is so much more than a diabetic teenager.  Diabetes does not define her.  It limits her.  It hurts her.  But it is only a small part of who she is. And so, with her permission, I thought I would introduce you a little better.

Some things you will already know from previous posts - like how strong headed and certain of the way she wants things (OK - stubborn)  she can be at times.  You will also know she inspires others with her bravery, tenacity and resilience.

She is a quirky, creative being.  She finds happiness in drawing, in playing music ( she plays the piano and the double bass - nothing small about TD's ambitions or instruments!) and in writing.  She is passionate - about human rights, about gender issues, about freedoms.  She is funny, with an off beat sense of humour, and an excellent sense of comic timing.  She reads.  She loves cat images on  the internet.  She plays Settlers of Catan with the family using cunning strategy.  She likes history, and is good at maths. Most of all, she is a good friend - loyal and kind.

I started thinking about all this after reading a thread on the Tudiabetes website.  The thread was called "Can T1s have a truly normal life"  The two sides of the argument seemed to be :  Yes, diabetics are just the same as other people, and No, diabetes affects every part of daily living and you are doing a disservice to children telling them they are normal, as they aren't the same as everyone else.

I have strong feelings about this subject. There is no such thing as "normal."  Everyone has restrictions in their life.  Maybe someone is too tall to be a ballerina, or has a visual impairment so cannot be a pilot.  Some people are restricted by economics, some by low self esteem.  "Normal" is a veneer people put on top of character in order to blend in and feel acceptable.  It is, in my opinion, a mythical, unattainable and reductive goal.

 

Yes, TD now has restrictions.  She cannot eat carbs without injecting insulin, she cannot be a pilot, she needs to test her sugars many times a day,  and she probably will be too tall to be a professional ballerina.  Everyone adapts:  she will too. 

She can't make up her mind.  Maybe she will be an architect.  Or study political science.  Or write a book.  She is fourteen - lots of time for her to decide how she will use her talents in this world.

Until then, she will, like a lot of teenagers, keep tabs on all the cat memes on the internet.  Like all other teenagers, she will challenge her parents, and debate almost every decision.

And like most other teenagers, her room is a mess.

Acutonics and herbal tonics

About six months after TD's diagnosis, my husband and I made an appointment with a doc who had first trained in Western medicine, studied further in Chinese medicine, and now chooses to practice the latter.  We wanted to find support for TD, and I, in particular, wanted to explore any helpful avenues.  He spoke to us for over an hour, explaining the Eastern model of health to us; how the body reacts to its environment, how we can influence which parts of genes we can activate, the role of both conscious and unconscious stress on the adrenal and hormonal systems.

He doesn't use the word "disease" for diabetes - rather he sees it as an imbalance.  He taught us about the Autonomic Nervous System that controls the flight/fight responses, and how relaxation is needed for even every day functions such as digestion, and the Peripheral Nervous System which deals with such things as heartbeat, pancreas functioning, learnt behaviours...

(I really hope I got this right.  PLEASE please comment, suggest or correct me if I have misremembered or misunderstood.)

TD has - unfortunately for a diabetic - a strong dislike of needles. So, although Dr P thought acupuncture would be a supportive form of treatment for her, he suggested acutonics.

Acutonics uses tuning forks with different frequencies to create harmony (or disharmony.) These forks are banged on a piece of metal and then placed on the acupuncture points on the body.  Dr P also put TD on some herbal supplements, as Chinese medicine believes that taste addresses different needs in the body (think of wanting curries and soup in winter, salads in summer etc...)

We told TD's endocrinologist all about this.  She is the person we trust with TD's diabetes management.  She is supportive of complementary medicine as long as it does not interfere with treatment of diabetes.  Both doctors agreed that it could do no harm.

So we made frequent, then less frequent trips to town.TD would chat to Dr P for a while, and then go into the cool, quiet, tranquil treatment room for acutonics.  The combination of the soothing environment, Dr P's gentle manner and listening ear, made the whole process one of deep relaxation and a feeling of wholesomeness.

We tried this, and the herbs, for a few months.  As TD got more used to the treatment, its calming effects seemed to lessen.  Dr P wanted to move on to needles and full acupuncture, and tried a few.  But TD was having none of that, so we stopped going.

This was a costly business, but I do not regret it at all.  At the time, we needed to be able to relax a bit, and this was part of the journey.  Finding a relaxing space to chill out for an hour twice a week, weekly or fortnightly, was good for TD at that time.

Have you tried anything similar?  Please comment if you would like to - I would love to hear a ping from the universe!