Why did the insulin die in my pancreas?

Imagine being 8 years old and diagnosed with Type 1 DIabetes.

Imagine being admitted to hospital with DKA time after time because insulin therapy and living with Diabetes were the least of your worries.

Imagine living in a town with a population of 100, hardly a dot on a map, and innocently revealing your sexuality to your family, and therefore the entire community.

Imagine, at 13 years of age, being viciously attacked and assaulted in broad daylight, leaving you hospitalised and in sheer agony?

Imagine being taunted and stripped of your dignity too many times to count when your weight began fluctuating through puberty?

Imagine if you became estranged from your family,especially when you need them the most?

Imagine moving with four hours notice to a capital city to commence boarding school, struggling with your sexuality,not to mention out-of-control blood sugar levels, and feeling abandoned and stranded by your family?

Imagine, developing and defeating a four year battle with self-mutilation and bulimia nervosa, or in this instance, diabulimia.

Imagine if you had to spend six months recovering in rehab.

Imagine if you were already suffering from diabetic complications.

Imagine if all of the above were true?

Here is the true story of a 26 year old man, whom I have had the pleasure to speak with over the past few weeks. Despite his many devastating life experiences, he is a remarkable human being who has become a credit to a society that gave him little in return. 

Leith has agreed to share his story with us, hoping that it will help others who are suffering from issues that he has lived through and survived. Some parts of his story are difficult to read, or even comprehend. However, he is alive, well and looking forward to the future.

His bravery, courage and frank discussion of his many challenges made for outstanding conversation. 

Here is his heartbreaking yet incredible story. 

Leith! Thank you so much for agreeing to share your life story! I feel so privileged that you have chosen to share such personal events with me! 

My pleasure, Kate. I only hope that someone who is googling “Diabetes and bulimia,” “Diabetes and gay support.”  or “Diabetes and complications at an early age” finds your website and reads your blog from cover to cover as I did.

What part of Australia are you living in, Leith?

 I live in Mt Gambier, located in South Australia. It’s a gorgeous little place, ideal for “starting afresh.”

I really don’t know where to begin, as there are so many issues to address!

“Tell me about it! Know any Oscar -winning screenplay writers?”

Can you describe what happened in the period of time surrounding your diagnosis?

I was attending a state school in South Australia, and I was always the loudest in the class, and I always had the other kids in hysterics. Life was wonderful then… I always had an eye for fashion and dressing the girls’ up and tizzying their hair. Looking back on it, even though I had a girly voice, looked like a girl, laughed like a girl, I thought that when “the change” came, (that being puberty,) that some miracle would  occur and make me “a man”, just like my Dad. 

Then, one day, I realised that I had the most unbearable itchy private parts. It got to the point that I didn’t care if people saw me scratching furiously. I would race home from school and dive into a freezing cold bathtub. That was the first telltale sign. Then, I would go to bed as soon as I’d have dinner, and sleep right through the night, and I often awoke lying in a sticky, cold puddle. I couldn’t work out why I had started wetting the bed again. Mum was sure that it was something to do with hormones, but she took me to the doctor anyway. He was just as hopeless as Mum. He said that I was suffering from symptoms of stress, as I had lost almost 8 kilograms very quickly. Yet I was chugging back coke and water, litre after litre. It was all so mysterious to me at the time. Then one day, Dad wanted my help to pick up leaves. I said that I couldn’t get out of bed. He yelled again, and then came storming into the bedroom.  I must have looked crook, because as soon as he laid his eyes upon me, he yelled out to Mum that we needed to get me to the doctor straight away. I  had some blood tests done, and the hospital staff soon had me in Intensive Care, Mum and Dad were looking on anxiously and my siblings were outside, crying their little hearts out. They were scared that they were going to catch “it” too. A paediatrician came and sat on the bed and told me that I had Juvenile Diabetes, as it was known in the day. I didn’t cry, but I was saddened at how distraught my family were. As soon as I had insulin, I felt better within an hour.

I have seen children develop diabetes at the last stages of childhood. Were you angry that you had no say or choice anymore in regards to this new, regimented lifestyle?

I was actually. I was horrid to my parents and my family. I used to lie to my parents and tell them that I had had my insulin, and then get up in the middle of the night and stuff my face with food. I ended up in a coma when I was 13 as I had led my folks to bellieve that I had everything under control. I just didn’t wake up one morning, simple as that. I was dealing with other feelings at that stage, I knew that I was attracted to other boys, and I also knew that there was nothing that I could do to stop it. Believe me, I tried everything to make myself straight! It was so easy to not care about my diabetes at that stage, ot wotty about how sick I felt, because I felt so horrible within myself that I didn’t care about diabetes or the repercussions of not taking insulin or gorging on midnight feasts!

You revealed your sexuality at a very young age to your parents! How did they react?

After Mass one Sunday, I told Mum and Dad and the kids that I needed to announce something. They all sat around the kitchen table, their eyes fixed upon me. I remember saying, “I’m not normal.” Mum came fussing over and looked me in the eye and said “Diabetes does not mean that you are not normal, Leith!!” I said, “Yeah, I know Mum, you didn’t let me finish…I have a crush on Mr Taylor at school, and I dream about spending my life with a man.” My brothers and sisters all laughed themselves silly, Mum clutched her quivering chin, and Dad had his arms folded across his chest, like he was trying to keep his heart from jumping out of his ribcage. He looked distantly out the window, and said nothing. Mum said, ” I think we better check your level..” I let her do it, just to prove that my blood sugar was ok. Dad whacked his fist down on the table, and demanded that the others’ stop laughing. He sent them all outside, and he said to me, ” How can you possibly say such a thing? You’re only 13 years old!!!” I told him that I had always known that I was “different” than other boys my age, that I always had little crushes on soccer coaches and teachers and priests. He got up off his chair and said “Well ,no bloody wonder Satan punished you by giving you this wretched disease. Do you know what it has done to your Mother and me? And now you go and do this to us? Get outside. I can’t stand to look at you. You ungrateful little bastard!”  I walked over to the door, Mum was on her hands and knees, crying, trying to stop me. She kept on saying, “It’s just a stage…it’s just a stage….”I  broke free of her grip and went and climbed a tree and watched how they all reacted. From then on, it was like my parents had three children, not four. I was the “oh..and Leith.” 

You were severely bashed and assaulted a few weeks after you came out to your family. Do you remember what provoked the attack and what happened after?

I had 6 broken ribs, a broken coxyx, internal bleeding, and a perferated spleen, as well as horrendous facial injuries. All I remember is walking home from school, and some young apprentices (16-17 years old) who worked at a garage in town called out “Poofter..go home!” to me. I ignored them but their tone was serious enough that I quickened my pace. They kept yelling out, and trying their hardest to get me to turn around and react. Next thing I could hear approaching footsteps running towards me. I felt a blow to the back of my knees, which made me fall to the ground instantly. Then I was helpless. I couldn’t protect or defend myself. I lay on the ground and prayed to the God who everyone said now despised me. I waited until it was over, and the brutes had skulked away, and I went into immense shock. It took 30 minutes for somebody to bother to call the ambulance, despite the attack occurring in the main street. My blood sugar had dropped so low, that I fell unconscious on the ride to the hospital. Firstly, the community knew me as “The Boy With Sugar,” and now I was known as “The Devil’s Spawn.” Fortunately, somebody recognised or remembered that I was diabetic, and I was rushed to emergency and put on a drip, and then underwent surgery as my spleen had ruptured. My parents were called, and told that I had been in a “scuff”, and that I had a few broken ribs. Mum came to the hospital and was told that she couldn’t see me as I had just came out of theatre. She had no idea about the seriousness of my injuries. Charges were never pressed.

I am struggling with anger and tears, Leith. You were 13! Only 6 years older than Lance!! How was your recovery?

When I was first released from hospital, I was given my medications and my mother formally discharged me. She drove me home and I was welcomed home by my siblings, (all who were forbidden to see me, despite being in hospital for 3 weeks,) and I saw my father look up from his paper as I clambered out of the car. I was very weak and was in agony from the pain of broken bones that could not be plastered. I had internal bruising also, so it was only for my mother that I could force a smile. She nursed me back to health, a Christmas passed, and then my 14th birthday. I didn’t leave the house except for specialist appointments. One day when I was feeling like I just might be on the road to recovery, Mum came into my room with a pile of suitcases.

Is this is when your parents organised your immediate departure from your home town, and your enrollment in an All Boys Catholic Boarding School in Adelaide- approximately six hours away?

Yep. Mum had name tags sewn into all of my clothes, and had a suitcase dedicated entirely to my new school uniforms, still encased in plastic. She told me that I wasn’t to make a fuss, and that it was for the best for everyone. She packed a notebook, pens and stamps and told me to write to her when I could, and “that it would be for the best if I left my name off the back of the envelope.” I tearfully nodded, and was given four hours to pack any things that had significant importance to me. I took a photo that was taken before I “destroyed ” the family . Despite their feelings of revulsion, they were always so very important to me.

Day 1-Boarding School. Did “they” know everything about your hospital stay?

Yeah. I had a housefather come and sit me down on the bed for a chat. He told me that I could go to the sick bay whenever I needed for pain relief. I was astounded that my parents’ had neglected to tell them that I had been a Type 1 Diabetic for six years. The staff had no idea. Luckily, I looked after myself when it came to my blood sugar, but since the attack, I didn’t test nearly as much as I used to. I had grown used to feeling hyperglycaemic, and landed myself in hospital after my first week at boarding school with DKA. I just stopped giving myself injections. I was in a daze. I was used to being in a school with Grades 5, 6 and 7 intergrated, and I had been thrown headfirst into this new world, with kids’ that seemed like they came from another planet. Diabetes became the last thing I thought of. I was still in a reasonable amount of pain, and adjusting to the fact that I had to shower with the people in my dormitory-it was totally acceptable to be naked in front of my housebrothers, something that my parents were totally against. I was in hospital for 4 days, when an endo came and spoke with me. He told me that my Diabetes was in very bad shape. I had a HBA1C of 12%, and I hadn’t adjusted my insulin dosages since I was diagnosed. He was appalled that I was under the impression that I thought it was ok to give myself insulin when I felt like it. He was the first person who made me realise that I had to take care of myself, otherwise I could face serious consequences in the future, or die from lack of insulin as a 14 year old. It was a very big realisation for me.

Did you keep your diabetes on the down side?

My House father used to keep a bottle of jelly snakes besides his bed in case I ‘went funny’ in the night. Not one other person in the school had Type 1 Diabetes. I was the only one-so I decided that I would keep it to myself, along with the school Nurse and the boarding staff. They did make a conscious effort to look out for me. When I was in hospital with DKA, I was put on a different insulin, and a new dosage. I was constantly ravenous. I couldn’t stop thinking about food…my pockets were lined with lollies, and I dreamed of cream buns and stodgy boarding school meals; at least they filled me up! I now knew the horror of frequent hypoglycaemia, it was an experience that I wasn’t used to. I used to wake in the night with the linen soaked, and my hair matted to my forehead. I could never work out where I was, or what to say, so I just used to open my mouth until I heard a sound loud enough to wake people up. The brain is useless during a severe hypo! My House Father would sit with me and give me cordial and lollies until I would collapse with exhaustion and a pounding headache.

Did you enjoy any part of boarding school?

I wasn’t popular by any means. I was always the last to be chosen on teams, and I seemed invisible in my classes. I actually had an aptitude for cooking, and the Home Economics teacher boosted my confidence considerably by praising my Devil’s Food Cakes and my Beef Stroganoff. However, my blood sugar was constantly plaguing me, everytime I felt like I was maybe enjoying myself, I would feel myself starting to slip into hypoglycaemia. The school nurse knew NOTHING. She didn’t know how to help me in the least. She did do something useful one day and got me an appointment with a GP. I told him about what was happening, and he told me that I wasn’t eating enough. At this point, I was a normal, healthy weight for my age. Three months later, I had gained 15 kgs. That doctor really knew what he was talking about. The hypos had stopped, and the cooking that I was reknowned for and that I would once share with my fellow dorm mates, I would sit in the Home Economics room and devour a meal for 12 by myself. I spent any money that my Mother sent me on chocolate or treats. It wasn’t long before I couldn’t do up my school trousers. I couldn’t button up my shirts. I had more chins than a Chinese phonebook. I had love handles, and back fat. My House Father kindly contacted my parents and told them that I had just gone through a massive “growth spurt” and that the school would be sending them an account for new uniforms. I was a walking butterball. I wasn’t ignored anymore either. I was the brunt of fat jokes. I would be exhausted from walking from class to class. Again, I ended up in hospital with DKA, as my blood sugar was so high. This time, I was in a coma for 4 days. My parents were called, but they didn’t make the trip. My House Father would sit with me whenever he had a chance. The entire school prayed for my recovery. Thanks to the DKA, and 4 days of fluids, I managed to shift a lot of weight. I had just turned 15, and suddenly, I realised that I liked the way I looked without my Sara Lee rolls. However, my love of food had me constantly in battle with myself. I wanted to look thin, but I wanted every crumb of a family sized Caramel Tart. Unfortunately, I couldn’t have it both ways…My weight and blood sugar fluctuated, as did my moods, my grades and my energy levels. That’s when I discovered the cheats’ way out.

This is when you began binge eating/purging?

Yes..I had no one whispering in my ear telling me sly little tips either. I managed to keep “my secret” for four years. I acknowledge now that I went through periods where I starved myself too. So you could probably include anorexic tendencies in that list also. Even after my diagnosis, the assault, getting kicked out of home, and accepting my sexuality, I could still have people in fits of laughter with one sentence. I felt like I was a survivor, and that I was mentally strong. However, after I had the mammoth weight gain, and I began coming up with any excuse to rush to the bathroom to cleanse myself of food, I felt like I was an empty, worthless person. I felt like I was a failure to my parents, to the people who had invested time into my wellbeing, and mostly to myself. I remember enthusiastically volunteering to help the Baker unload his truck every second day. Besides hundeds of loaves, he had iced finger buns, meat pies, sausage rolls…I was truly happy as long as I had my mouth wrapped around something disgustingly unhealthy. It numbed the inner turmoil. However, as soon as the last bite was injested, I was overcome with repulsion and disgust. I learnt to purge on command, I didn’t need to use my fingers anymore. I always carried breath mints with me, and I had perfected the art of avoiding vomit splatter. I was a fantastic bulimic. I never felt suicidal, but I felt tremendous relief by cutting myself with a razor blade. I used to use to flesh on my thigh, so as not to be exposed. It is impossible to explain to someone why I did it, it just seemed symbolic..like I was ‘releasing’ all of the pain I carried around with me. The problem was, I started to want to do it more, and more.

When did you hit rock bottom?

It became evident to the School and to me that my family had slowly phased me out..even Mum had stopped writing now. The school fees were always paid, but I always spent the school holidays with one of the the priests. Everyone at school had worked out for themselves that I was gay. I looked gay, I walked gay, everything about me screamed gay. It wasn’t such a big issue as their was other boys that I knew were “in the closet” that I had grown to form friendships with, however the boys from rich families in the city would empty my locker and hide my books, hide my sports clothes and replace them with girls’ clothes, and mouth degrading, filthy words whenever no one was watching. At that point, I didn’t care. I had bigger secrets to keep. I remember after a huge bakery binge, I walked into class late. I apologised to the teacher and took my place. One boy said , “Awww, GEEZ man, you have the most disgusting stench coming off you..” The class laughed, the teacher gave me a concerned look and I hurriedly got my books open and pens ready. Throughout the class, people would sniff loudly, and pull their jumpers up over their heads. Cracks were beginning to show. My teeth were also discoloured from all of the gastric acid that had corroded them over the years. I had perfected the art of smiling so that my affected teeth weren’t so visible. I actually had buckets of vomit hidden in my closet, that I would dispose of when everyone was asleep. I went to such extreme lengths to protect my dirty little secret. Being gay and diabetic was child’s play compared with this… One morning I was told that I had an appointment with the endo. A taxi was waiting for me, so I hurriedly rushed off without checking that everything was “just so” before I left. I had blood tests done, and a chat to the endo, who asked me if I was experiencing any stress, as he commented on my weight loss and poor colour. I quickly shook my head and pushed the blame onto exam pressure. He looked suspicious, but didn’t say anything more. I returned to school, and attended my classes. As I took my seat during my last class, my House Father appeared at the door and asked if I could be excused from the lesson. We walked silently to my dormitory. I knew I had been exposed. He had found my stash of lolly wrappers, empty soft drink bottles, piles of stained clothes in garbage bags, food diaries that I wrote how much input/output I had for each day…and an unemptied bucket. I was so ashamed. He made me stand on the scales-I was 60 kg and 5 ft 11 inches tall. I was positively skeletal. I had that covered too, by wearing layers of bulky clothing. I was numb. Tears ran down my House Father’s face, and he began to pray. I wondered what was going to happen to me. He told me that my parents had been called, and that I would be spending time in a “hospital” for a “rest.”  I saw my family for the first time in almost 4 years, they looked at me like I was a stranger. Even Mum seemed icy towards me. I took my place in the “family” station wagon and was driven to a Psychiatric and Rehabilitation Hospital. My father carried my luggage in and filled in the paperwork. He walked away, and turned back. His last words to me were “Well. You’ve ruined our family again. The shame you have cast upon us…the shame.” I sat on the floor and cried four years worth of tears.

Keeping in mind, that you had been through so much and yet you were only 17 years old, it seems like diabetes always came last in your list of priorities. What eventuated when you finally received proper medical attention for the first time in nine years?

I was in a room that was beside the nurses’ station. It had a window with a venetian blind. I would see a different set of eyes peek through every thirty minutes. I had blood taken, and was introduced to my psychiatrist, and an endocrinologist from a hospital in Adelaide. I was put on medication that kept me planted in bed. All I did was eat my meals (carefully prepared by a dietician), shower, and sleep. I could sleep for almost 36 hours. It was like my body was catching up on all the stressful situations I had put it under. When I came off the medication, I had a visit from the endo. He was kind, and empathetic. He told me that I had caused a lot of damage to my digestive tract from years of stomach acid eroding it away. He told me that despite my low body weight, I had horrendously high blood pressure. He handed me a mirror, and showed me my teeth, and pointed out the gingivitis that left my gums scarlet and swollen. I had to have 6 teeth extracted as they were rotten to the core. He said that they had to come out, as I had absesses on them, and that any infection was potentially dangerous being a diabetic. He told me that I was severely anaemic. He told me that my cholesterol levels were also abnormal. He showed me the scars on my leg, now healed and clean, but still a reminder of painful times.The biggest kick was that I was excreting protein in my urine. From years of blatant neglect, one kidney was larger than the other, and was only working 75% of its capacity. I was monitored closely, and had nursing staff administer my insulin for me, morning and night. I had staff watch me eat my meals, morning, noon and night. I underwent counselling about my sexuality, and the torture that I had put my body through, 3 times a week. After 6 months, I was 78 kilograms. I felt spritely and full of energy. I had no urge to harm myself. My gums were a natural, fleshy pink colour. My iron levels were normal. I felt assured about who I was. I knew that I was a gay man. I accepted that I was estranged from my family. I went to live with a retired priest and finished my last 6 months of Grade 11 by correspondence. Finally, there were no more dirty little secrets. I had made a commitment to myself to look after my diabetes, too. Being in hopsital made me realise just how much I had endangered my health.

So, who are you now, Leith? Are you happy?

Yes, I am very happy! I am 26 years old, and still have my battle scars from those days. They remind me of how far I have come. I finished Grade 12 eventually, and entered the hospitality industry. I now own a successful Bed and Breakfast with my partner, Davon. I have made contact with my siblings-we see each other frequently. Sadly, Mum passed away, and Dad lives alone, full of anger and hatred, and ironically enough, was diagnosed with Type 2 Diabetes 3 years ago. He recently started on insulin. I send him a card for his birthday and Father’s Day, but they are returned to me unopened. It doesn’t stop me doing it though. It seems like a lifetime ago since I was at boarding school…I still see a therapist, and I am well aware that I can still relapse at any time. I try to keep things as consistent as possible in my life. I still have dreadful blood pressure, and I started on an insulin pump last year, which has taken so much of the hard work out of Diabetes. For today, I am happy and grateful that I made it through some awful times. I think it is really important to realise that just because you have Diabetes, it doesn’t make you immune to having issues with your body. I encourage all parents to speak openly and frankly with their children when puberty arises. Diabetes can be very difficult to tolerate when there is so much else going on in your body. The desire to be perfect equates to being “thin” these days. Thin means popular, successful and beautiful to impressionable teenagers. A few extra kilos renders you in the “loser” category. I am starting Uni next year and I plan to become a social worker. If  I can help one person escape years of self loathing like the ones I threw away, then I’ll feel like I’m finally at peace.

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