This is an extract from an unpublished book that I wrote following the death of my older brother Stuart, who passed away four years ago. Stuart was my hero, and I hope this explains why…
Throughout my life I had been coming and going wherever Stuart needed to be, School or into respite at Lyndon House. His school was a very special place, all the children there had some sort of disability. The atmosphere was fantastic! Everybody was so friendly, so caring. Lyndon House was a place where Stuart would sometimes stay, for a sleep over. It was his respite place at the time, before he moved to Acorns.
We had been with Acorns for a number of years by this point. Not only did it offer Stuart his respite, but also a fun and active group for myself and Vicky to join in with. This was the under 12 group, and not before long I was going to be 12. I had met some friends in the group, James was one of them. He was a few weeks younger than me, but we’d both be moving up together. Moving up to the big group, with the bigger kids. This group is the BASIL group.
BASIL stands for: Brothers and Sisters In League. It is made up of teenagers, like me, who live through similar troubles with having a disabled sibling. Or for the unfortunate, a disabled sibling who has passed away in recent time. The atmosphere with the group is incredible, I knew everybody. Everybody had respect for me, the younger members looked up to me, and so did the younger ones. I never really understood that at the time, I still don’t.
At the end of the year, each member would contribute an article, poem or drawing to a magazine, named BASIL obviously. This would then be distributed through the UK to other siblings in similar situations to ourselves, and other companies/charities who offer or want to offer similar programs.
The people involved with this group are incredible. The volunteers treat you how you want to be treated. Like a mature adult. I’m not a kid, I know we are, but I feel responsible. Now that I’m one of the older kids in the group, I get the same respect as the volunteers. The younger kids look up to me now, and that inspires me to be strong. They have respect for me, things I say influence them. If a volunteer asks them not to do something, they might ignore it. If I say the same thing, they stop. Instantly. No questions, usually. I was in their shoes once, I think they appreciate it. I know I would have done.
That’s Acorns though.
My brother, Stuart, is somebody incredible. He’s a true hero, my hero. Somebody I look up to in every day situations. Why should I moan if my dinners cold? Why should I moan if I’m tired from walking? How dare I! He can’t eat food as we do. He has a tube that enters his stomach through his nose, which pumps a special nutrition through. As you eat a bacon sandwich with melted cheese and barbecue sauce? I’ve been walking too much. And? At least you CAN walk. I hate people who complain about little things. How dare you complain. I can live through racist jokes. I can live through sexist jokes, ageism or any other jokes. But jokes on disabled? Fuck off.
Stuart had this thing, I can’t explain it. It was a brother thing. He looked out for me, in our own special way. If I needed to, I’d find a quiet time where I could sneak into his bedroom and talk to him. I’d lean over the side of his bed, which was fairly high, and just say it. It’s perfect, how I like it. No silly petty remarks, nothing. He couldn’t talk. Some people say I used him, but I didn’t. He always replied. He replied with a chuckle, a smile, sometimes he laughed so hard all my problems just, well, went?
He let me know it was going to be okay. And look at him? He’s lying on his death bed, pretty much. Heart rate monitors firing away, pulse monitors and god knows what else. Oxygen cylinders standing tall to the one side of his bed, with bags of medication, draws full of medical supplies at the ready. Some of it got used, some of it didn’t.
While at school, I’d be distracted from home life with tones of homework, sometimes extra work too. Exam preparation and also music activities. Two lives, well three. Home, school and band. Except, band life at the moment was pretty average. Every Saturday was groundhog day in it’s own effect… Yeah. Turn up. Move chairs, and then the tables. Plug amp in, guitar. Tune. Wait for everyone else to be ready and play. Same songs, same order, same pauses, same messing about, same getting nowhere in life cause we’re shit. Pack up and go home. Yawn.
School was an awesome distraction, at this point I had just started my GCSEs, while also joining stage crew. This was always something I wanted to do, being the techy guy in shows. Yeah, the cool job. Walking round with expensive equipment with massive ‘STAGE CREW’ on your back. Yeah. That was my get out. The first show I did threw me in the deep end. I was ‘assistant lighting director’, following the lead from an older pupil who knew it all before.
Only thing, he was ill the week before the show. I had to take over the lighting rig for the show, take charge. I hadn’t even used a lighting desk before, but I soldiered on and kicked ass in this show! It was actually pretty cool! I was the only person in the control box for this show, with a glass pane between me, sound and the stage, which was at 90 degree out. In other words, I couldn’t see the stage, instead I only saw the wing. Stage right. Really helpful for a beginner lighting guy.
I tried to fit in during the first production. All the cool and popular kids were in it, acting of course. On breaks during rehearsal, I would try and grab some conversations, however that was rather unsuccessful. Being the techy, I’d often have to run round the hall patching up a microphone. I didn’t want to, but I had to. I had to learn, this was going to be an important lesson in my life, I had to work hard. Being in stage crew wasn’t a club, it was a lesson that was going to benefit me for life. Two years of shows.
Elsewhere in school, people began to make new friendships. It was GCSE time, I began to notice who was splitting off. The old crowd with Anna had already abandoned me after the trouble which resulted from the break up. Was she seeing my mate? Was she not? Why? Nobody was allowed to say anything, and most of all, the girls cut me out. That made it very awkward for the guys, who had closer friendships with the girls than I, so I was back in square one. Need to find a friendship, stage crew was there, but not always.
I could go home, talk about my day with my parents, my brother. I’ll talk to him, telling him about how I set up this and that for the big show. He loved it, his grin would speak the words he wanted to. This was also the time that Stuart left school and moved to an adult center up the road.
For him to truly benefit from this place, he had to have a new nurse. Unlike the previous nurses, this was one who could work with adults. Stuart was at that age now, he was a man. In the real sense. His nurse was Charlotte. Young, beautiful and dead nice. She really was.
On the way home from school, I’d help them both get Stuart into the car. A difficult job for them, but one I could manage. We have a van. A big, green and very noisy van, specially converted to carry a wheelchair. I’d lift the tail gait, pull down the ramp and help mum push the wheelchair up the ramp, with Stuarts weight too. The wheelchair was heavy enough as it is, with all his equipment on. Stuart weighed a fair bit too, yet he was so small?
I’d then life the ramp back up, in a folding motion. It was difficult on the arms, if you weren’t careful you could pull a muscle. You would then have to jump up and reach for the tail gate to close it all up. Now, you couldn’t leave Stuart’s wheelchair as it was, it had to be tied down. In the floor of the van, hooks would pull up which would attach to the frame of the wheelchair, holding it secure. This stopped him from rolling about while traveling, but made it awkward to get round.
That’s something that shouldn’t really be a problem, because really, why would anyone be walking around the van while it’s driving? Oh. That’s right, sometimes we did. Sometimes we had to. There was one occasion, or maybe a few where I’d have to get round him during a drive. One moment in particular, while Stuart was really exasperated, uncomfortable. We were ten minutes until home, where he could come out of his wheelchair, and lie on his bed. He really needed to get out of his chair as soon as possible, but with only ten minutes to go, he could only hang in there.
Ten minutes. He couldn’t last, his heart rate monitor began to alarm. For a few moments we carried on as usual, gripped his hand, began to relax him etc. Wasn’t working. The machine was strapped to the back of his wheelchair, next to the tailgate. There was myself, and my mum. Less than ten minutes away from home, and all he needed was to get out of his wheel chair. The alarms had gone on for too long now, I whipped my seatbelt off, and raced round the van to the back to check the readings on the monitor. I had to. His feed pump began to sound too, the alarm explaining that there was a problem in the tube, telling us that the food was being pumped, but blocked. Shit. Keep your cool, I paused the feed pump while checking the heart rate monitor, which was showing that his heart was racing. Not surprised, over a hundred beats per minute. This really wasn’t good, we had to bring it down, he had to relax.
Only five minutes away now, his heart race was still increasing. I climbed over to be in front of him, gripped against the back rest of the drivers seat and the wheelchair, trying to relax him. His heart rate was slowing, I could feel it. His breathing relaxed, he was sweating though. Not long to go, he was strong. Held in there, his alarm stopped. Everything was good, almost. Still should not have happened in my opinion, while I was gripped to his chair now, both hands. Feet embedded in corners I had somehow found. To keep my balance while going round bends. It’s different from being in a car, it was a van. I was also standing, facing backwards, in the middle. I went over to check the monitors again, flashing lights everywhere, numbers, letters. Everywhere.
Home. As soon as the van had stopped, we raced to get the ramp down, the door open and Stuart down on his bed. He was under his oxygen while I put the ramp back up, and soon he was okay. Just another one of those moments, by this time, we were quite use to having little scares where he could end up in a worst state.
There has been times where we’ve had to pull him out of a fit in the middle of shopping centers, Charlotte too has experienced that with him. He kept her on her toes, like all of us. You could argue he was a normal older brother too. Laughed when you got told off, stopped you going to sleep, waking you up.
At school, my GCSE’s were picking up. I had my first exam in a few weeks, and we had to prepare for it. Math it was. First week of November, okay it was September, but in relation to the hours we had in the classroom, it was nothing. It was all so soon, I found it hard to keep up, really hard. If things stayed the same though, I could maybe pull through it, keep strong. Then there was a gap before the next exams after Christmas. Just this month had to be stress free at least, could it be?
Don’t joke.
My new math teacher began dishing us homework and extra revision, obviously. But it was around the time that something changed in Stuart. I couldn’t tell what it was, but he changed. Something was different. Something was really odd, and I was a little scared. I couldn’t ask my mum or dad, I don’t want to suggest anything, Vicky would be scared by any thought I was thinking. What was happening? This can’t be ‘it’, can it? It didn’t feel like it, can’t be. No, I was being silly. Stuart’s a fighter, always has been! He’ll pull through, anyway, it could just be a cold.
Science was beginning to get difficult, we suddenly had two exams in January, not one. Twice as much work in preparation, so now we had to begin twice as early. In other words, we had to start now. Math and science on the go. Should I mention French? I failed the subject, but then again, I studied it. My French speaking exam was soon, apparently we had to revise for it, it was in October. While I couldn’t give a shit, I still had another teacher who thought their subject was the best. The most important. It really wasn’t, an excuse to pull me out of stage crew more like.
It went from nothing, to everything. No warning, no introduction period. As if somebody said “you’re gonna spend six weeks on your arse doing nothing, then I’m gonna cause your school life and home life to demand everything you have.” Oh, why thank you all-mighty.
At home, Stuart was becoming restless. Like that one time in the car, where his heart was racing. Only, he was on his bed this time. On and off oxygen every once in a while. It was for a week. I’d often walk into his bedroom, and find dad doing his bit to calm his heard rate down. It wasn’t working, his heart rate lying down was in triple figures. Is that really normal? Stuarts heart rate was always different to everyone else’s, it would be faster when he’s awake and lower when he’s asleep. He would regularly stop breathing in the night too, and his alarm would be a constant reminder.
Monday morning was difficult. Going to school. Math, science, and double French all in one day. Could it get any worst? As routine, we picked Stuart up from the day center on the way home from school. This time, I was left to do the straps on the floor of the van, while mum had a quiet word with Charlotte. They stood for a while talking about something, All was good, Stuart had a smile on his face the whole time. Nothing different, his heart rate was fine, no problems with his feed. All good.
The rest of the afternoon was fine, even through dinner. It was going into early evening that it began to kick off again. Slowly it would begin to rise, until the alarm went off. Yet Stuart was chirpy, enjoying it all. Loving the attention. I had to concentrate on my school word. Math, science and French. On top of that, I had to practice my guitar for a gig at the Triplex Social Club next month too!
Tuesday was the same, but I could feel something was brewing. There was a silent atmosphere around the house, it followed me to school too. PE was difficult, I couldn’t do it. What ever it was, I couldn’t do it. I kept my kit in my locker, and said I had forgot it. It was only my second time, I would get away with it. Plus, my new form teacher was the head of PE, and he liked me. Easy. It worked, except I had no excuse for math. I had to do it, I sat at the front too. With Joel from stage crew. I couldn’t concentrate, really badly. People began to notice things were odd, began to question. I couldn’t turn round and say what I was thinking though, it’s cruel.
Wednesday was the same, I struggled trough the day. Almost late for the lessons, not really in my own head. I was worried. About everything. The state of my brother, what’s going to happen, how I’d react. How my parents would react. How Vicky would react. I would have to take over for a while, until they found their feet. What should I do if it did happen? I don’t want to think about this shit, I have a math exam soon, French too. science in a few months. I need to work on them. Block all this crap out, it’s not helping.
Thursday morning. The second I woke up, I was thirsty. Needed a drink. I stood up, and could hear something. Don’t normally hear it this early, Stuart laughing. He’s usually trying to get back to sleep after being woken up. Anyway, I strolled into the kitchen for breakfast. Something was good about today, it was going to be a good day. Stuart was happy, everyone was happy. Good. While I rushed through my architecture homework due in first lesson, I couldn’t help but think, he’s pulled through it again. I was proud, he was a hero. Again. Managed to pull through for us all, well done bro.
For some reason, I enjoyed school today. Thursday was my shit day in the week, except for the prefect duty. That was fun. It was my second or third week on it, and already I knew who the regulars were. The same kid would turn up, try and get through, and fail. Same time, same excuse, every bloody week. The duty was made fun by the staff on it. My designated teacher changed a little while at first, but the same teachers walked past for a little natter. A joke sometimes, what made it even better? The way I cant repeat the jokes, or say who told them. But surely they were the best! Today was a good day.
Again, we picked Stuart up from the day center, to relieve Charlotte from my cheeky brother, always causing trouble. He was being really good, staying still on the way home. No fuss from his machines either. He was in a chirpy mood, loving every second. Joining in with the laughs in the car. That was him. Isn’t it incredible?
I had one piece of homework for the Friday, still unsure about Stuart, but it was science. No matter how difficult it was, I loved it. So I did it, of course, and put it in my book. Book goes in my school bag with my homework diary and all the other bits and pieces ready for tomorrow. Dinner was delicious that night, I was hungry. Really hungry. Suppose I needed to eat all I could, need to be as big and strong as my dad. Ha! Stronger. I won’t do with second best! I had done all my work, ready to relax. It was Thursday night, the silence had gone, everyone was lively. Stuart was laughing, and we were watching telly together. It was about nine, I decided to go to bed. Long day ahead of me at school. Moc exam, practical in science, music. Tiring stuff! I said goodnight to Vicky, mum and wondered into Stuarts room where Dad also was.
I got distracted though, by the monitor. It wasn’t going off, it should be. It was that time though. I looked closely, and saw that dad had pressed the silencer on it. He knew it would be going off, but kept it quiet. He was perched on the bed, with Stuart. Reading to him. I went in and said goodnight, with a big grin on his face. It was hard not to return one, his smile was infectious, everyone who met him said it. Everybody loved his smile.
I left them to it, stumbled into my own bedroom, while drinking a glass of water. Lay down in bed, watching the night take me away. Something was different, but I was too tired to think about it. Maybe I’ll think about it when I wake up…
Friday morning. The second I woke up, I was thirsty. Needed a drink. I stood up, and could hear something. Don’t normally hear it this early, Alarms. Anyway, I strolled towards the bedroom door, and realized it was pitch black. I glanced over at my phone, 3am? Something was odd. Really odd. That alarm.
It was different.
All abrupt, I felt a sick sensation in the back of my throat, I snatched open the door and dashed down the hallway. Thirst? Fuck off, my dad had just let in another paramedic. The blue lights were shimmering against all the white walls in the hallway, it was clear what was happening. Dad stood there in distress. I walked past him into Stuarts room, where there was a few paramedics. Mum. Stuart, laughing and chuckling away on his bed. Cheeky sod, attention seeking again. His room was a clutter, bursting with people, and machines. There were two heart rate monitors, and other equipment I had never seen beforehand. Outside, an ambulance and an emergency response car.
It hit me. The clues. The week, the talks, the machines, the alarms. It’s been there in front of me all this time. How could I not visualize it! Vicky was still in bed, fast asleep. Completely oblivious to the reality from the room next door. I was scared, but I had to show I was strong. For Stuart. It would keep him going, I knew it would. The paramedics wanted to take him, but then they didn’t. It was difficult. We all knew what was happening, and then it was decided there was a small chance it could get better at the hospital. They were ready too, waiting for him outside A&E.
The paramedics gathered their equipment and took it through, while mum took hold of Stuart, carrying him through the house. He was still cheerful, loving every second. Loving the attention. My head was buzzing, shrieking out for help. Crying. I’ve got it. I was going to wake up. Get out of this nightmare, but it wouldn’t happen. I shouted and shouted at myself. He’s going to be okay I said as he was carried past my eyes outside. Stuart grinned at me, smiled.
“See you Stuey” I whispered to him.
I hurried into Stuarts room, to check that they had everything they needed. His medicine bag was still here. I snatched it and ran out the door, passing it to mum. Dad seemed to mention that he might not need it, but I didn’t take much notice. I was busy thinking about what was happening, going with the flow.
The blue lights echoed round the road as he left. Wow. What just happened? I was thirsty. Reality? I poured myself a drink, and sat on the sofa in the lounge. Calm down a bit before I go back to bed.
“It would be a good idea if you go back to bed. You’re gonna need all the sleep you can get” he said, a fatherly voice called from the doorway. His eyes said it all.
I did just that. Worked my way to bed, peacefully. I wasn’t to disturb my sister, she was sleeping. Still. God knows how. I lay in bed for a good five minutes, looking up at the world. A slight tear ran down the side of my face, splashing on the pillow beside my ear. What is reality?
Reality is that moment the phone rings. Reality is when you hear a voice shout out your name from across the house…
“Sam get your clothes on!” he yelled.
Shit. Clothes. Phone. Keys. Wallet. Tissues. Pen. Inhaler. Glasses. Jacket. Shoes. Pen. Glasses. Keys. Shoes. Wallet. Phone. Keys. Glasses. Phone.
Vicky.
I had forgotten that she knew nothing about what was happening, had no idea that our brother had been taken ill in hospital, only ten minutes ago. Now were where racing down to the hospital. Had no idea what to expect. Well, I did. But I didn’t know how to expect it. What going to happen, how?
As soon as we arrived, they were waiting outside the A&E doors, keeping them open for us. We parked outside by the ambulance which just carried my brother there. The lights were still flashing. We ran through, guided into a small room on the side. That’s when it hit me. Vicky stood oblivious, stood in between me and dad. The hospital was inaudible, not a sound. Just footsteps approaching the door, before it swung open. Two words.
“I’m sorry”
Friday 19th September 2008, 3:18am.
No words will ever begin to describe the emotions I wish to express. Take the silence as a thousand words, cried out inside.
For those few brief moments, everything stopped. Nothing happened, until the first tear began to drop, rolling down my cheek. That’s when the reality kicked in. He lay peacefully on the bed next to his mum. The machines were switched off. It was all over. Twenty years of strength, and he lay prominent. I was proud. He wasn’t supposed to get this far, but he held on. It was the right time to go.
All of a sudden, my mind shifted. I was in another reality. All I could think about was everything, something I wanted to think about? No. What was happening? Confusion struck me, nothing made sense, nothing added up, philosophies were uncontrollably floating around in my head but none of them materialized. I comprehended that I was alone. Outside in the cold. It’s half past three in the morning, my hands were hurting. They were forced against the wall, outside, with my back to the ambulance that bought him here. It was cold. It was quiet. A cool breeze circled in the air, it was chilly.
Charlotte didn’t know. She had to, in a few hours she was expecting to be seeing his smile. Ready for another exciting day out in Solihull. We had to tell the day center. Transport. My school, my science homework was due fourth lesson. Why did I care? Seriously, I couldn’t think about anything else. My brother, lay lifeless on the other side of this wall.
I was inside. Sweltering, breathless. Running? My hands were sore from the bloodshot brick work, a colour which corresponded to my cheeks from the tears. The curtain was drawn across around us. Around him, his infectious smile. Somebody joked that he would carry that smile ‘til the day he died, well, he did.
My friends won’t care, will they? Would the teachers believe me? Probably not, still had to hand in my science homework. A few hours ago, I just finished struggling to complete it. Now this? I had to hand it in. I was strong. I am strong, I too can be a hero, I think? I have a video assessment in music today too. Math exam in a few weeks. Stuart lay in front of me. Band practice tomorrow morning. Science revision. The funeral.
I was back outside, with my back beside the wall. My hands were bleeding a little. I suffered no pain but they were a little sore I guess, I don’t know. I didn’t know who I was anymore. What was I? Where was I? I met my dad in the doorway for A&E, with Vicky and mum. What happens next? The doctor was there too, mum was going to stay. I was going home, in the van, to the house.
I had the medicine bag on my lap, clutched to my chest. He never needed it. The bottles, syringes ready under the velcro lid. He’s gone, but he’s still here. I was giddy, thirsty and exhausted. I was depleted of everything I had, you couldn’t take anything else from me. It was impossible. His bedroom was filled with all of his equipment and toys. But it was empty. His own machines switched off, until I turned them on. The reassuring sound of the alarm, no pulse. No heart rate. I couldn’t find the reader, when I did, I strapped it to me. Breathed deeply, needed to get it functioning. Needed to get his little heart going again. I had to. I would do anything to keep him alive, just that little longer. A chance to say goodbye, properly. It was all linked up to me, but still nothing. I wasn’t strong enough to power it.
I flicked the switch and headed into the kitchen for a drink. I was gasping by this point, desperate for some water. I could only think about him lying there. His smile held at the back of my mind. We still had to call Charlotte, and school. I was going to go in. It was five o’clock when I decided. I had to, I couldn’t stay here. It was too quiet. I needed to go to school, in at lunch, then go to music. I knew she would be understanding, she’s like that. I can’t see why people call her a bitch, she’s lovely. That was it, planned. I was going to school. Get away from the silence.
Four years on and I sit at my desk remembering my brother Stuart, his photo sitting above my desk reminding me of his lovely smile. Despite writing this account of what happened several years ago, I have never publicly shared it until now.
I hope that for the other hundreds, if not thousands of children who are forced to live through such difficult times, I dearly hope that the first four years for them are easier knowing that they’re not alone, you are not alone.