Asperger's,Autism Spectrum Disorder

What Could (Not) Have Been

Life has been strange lately. Not just lately, this entire year has been strange. I have gone through so many different feelings; I will never be the same. Now, many of us are affected by the covid-19 virus in some way. Some nations struggle more than others, but it seems like we all feel it.

A few weeks ago, at least I think it must have been a few weeks ago – I can’t really remember, I made a big life-altering decision and before I had a chance to really think about that choice, my grandfather was admitted to the hospital. It wasn’t covid-19, but the virus had already made the government decide to close all the schools along with many other restrictions – restrictions that has only increased since then.

My grandfather had a problem with his bladder, they said. He had been sick for a while; he had several surgeries this last year. After the last surgery he had, they messed something up and he had some issues with the bladder they had to check. It looked a lot like cancer, but they – the doctors – kept saying it wasn’t cancer. They tested him for covid-19 as well and there was nothing. He had fluid in his lungs, though. After some more tests they suddenly found the cancer. It was a very aggressive form of cancer in the lungs, but they said he could live 1-7 months.

I was relieved. I was even happy. I felt like half a year was okay. We would still have time. He could come home and spend his final days, not alone in a hospital bed, but with his girlfriend of 32 years. He would be able to lie in his living room and look out over the garden he spent his life working on. The house was his parents’ home as well, they built it and he expanded it even more. Just a couple of years ago, when he was 85 or 86, he was out in the back fixing the roof on the shed. He was a strong man, so I just assumed he’d live at least a few months. I never expected that barely a week would pass before he passed away.

My real father wasn’t a big part of my life – in fact I barely know him now, even though I wish I did. I missed him growing up, of course I did. I thought he left because he couldn’t love me, or maybe because I was born this way – broken. I was afraid he knew. I never hated my father, though. I was never angry that he left me, I wasn’t angry he never seemed like he wanted to know me. When I was little, I didn’t understand, but when I became older, I started to understand, and I don’t blame myself or anyone else for him leaving or not being a part of my life in the way I want.

I think a big part of the reason I never hated him was because of my grandfather. He did the things I wished my father would have done. My grandfather got me my first real bicycle; it was grey with a cute bell that I loved but was afraid to use. I was afraid to use the breaks on it too – it was my first real bicycle and I had never had anything that could go as fast as it could… only, I never had to use breaks either. I would always go as fast as I could on those country roads and then when I wanted to stop, I put my feet out in the air and wait until the bicycle was going slowly enough for me to break with my feet. Needles to say, it didn’t end well that often. It didn’t make me stop though. I wanted to go fast, but I was still afraid to break.

Every summer he would take me and one of my cousins camping in a caravan. He took us to see all sorts of strange and wonderous things all over the country and I loved it. It was a challenge, sure, but he instilled in me a sense of adventure, a curiosity, that I cannot explain.

Every Christmas the whole family would get together on the 26th and have a home cooked traditional meal – and we were quite a lot. His girlfriend has 7 children and my grandfather 2 and all of them brought partners, wives, husbands, children and lately, grandchildren and great-grandchildren.

As a child I hated such gatherings; too loud, too much food I didn’t want to eat, too many people and when the grown-ups got a little too happy I felt even more out of place. It’s been different for a couple years though. People stopped coming or left early and, in the end, we would only be a few people drinking coffee and talking quietly. I didn’t even have to talk! That was pretty amazing. I generally don’t like talking if I don’t have something I want to say, but people never understand that. I always end up getting nervous or worried and then… then I talk, and I can’t seem to stop. I hate it.

In all honestly, if I am talking a lot is most likely a bad sign.

My grandfather enjoyed the parties and having people around him, he wanted others to be happy, to joke and laugh and drink and eat. He always made sure that those who helped him out would remember to take a break and relax too. Work hard and rest well. That could have been his motto in life.

He was a stubborn man too. His word was law, but he didn’t abuse that fact. He was a caring and compassionate man.

A couple of days after the diagnosis I visited him at the hospital. He looked like he was tired and in pain, but he looked like he’d be okay. He was almost like his old self. I felt comforted by seeing him in spite of how much weight he had lost, his lack appetite, the fact that he could barely move and his slightly glazed eyes. He still looked better.

Then, on Thursday, they asked his girlfriend to leave and told her she was no longer allowed to visit my grandfather in the hospital. No one was allowed in because of covid-19. She was heartbroken and scared, but there was nothing to do. She left him there and the next morning we got a call from the hospital. My grandfather’s situation had suddenly taken a bad turn and we had to come quickly.

He wasn’t able to eat himself by then, but my mother and I didn’t know, so it was a surprise on more than one level when they told us he pulled out the tube feeding him himself. The doctor didn’t want to put it back and my grandfather didn’t want any more treatment. He told us over and over again after that, even after he completely lost the ability to speak and could only move his head slightly, that he had had enough. He wanted it to end.

We sat in his hospital room for two days until he passed away Saturday evening. I sat by his bed, like my mother and my grandfather’s girlfriend, as he let out his last breath. It had been clear for hours that he was approaching the end, all the signs were there, and they were more visible and obvious than I would ever have expected. When he died the three of us sang his favourite song to him. It was an unexpectedly beautiful moment.

The hospital was pretty much empty, with security guards checking people entering, with tents and plastic covered beds all prepared for the covid-19 patients soon to be arriving at the hospital. It had felt strange spending two whole days in that place, but I will never regret having been there. I will never regret spending two and a half hours on public transportation to and from the hospital. In a way, the lack of people was both a relief and a bit unsettling.

The funeral was yesterday. A few members of the family were allowed to go, which was nice, but it felt off. It felt lonely, somehow. I wanted to tell everyone he had passed away, but someone in my family wouldn’t allow it. He said, along with his girlfriend, that he would tell the rest of the family when they needed to know about it. It’s all because of some silly family drama. I understand that they were hurt, and that my grandfather was heartbroken because of how he was treated, but that doesn’t make it right in my opinion. No matter what someone did it’s not right to keep something like someone passing away a secret – everyone ought to have a chance to make peace with the past and say goodbye to someone loved. I think if we had been able to tell others, even if they couldn’t go to the funeral because of covid-19, then I would have felt less lonely in that big church yesterday. I felt guilty, but I didn’t have the strength nor the desire to fight their decision. I just wanted to say goodbye to my beloved grandfather, not argue ethics or morale.

Maybe it doesn’t matter, maybe my guilt and shame about this is silly – I really don’t know. I guess it’s all in the past now, so it doesn’t make a difference anymore.

The funeral was yesterday, but somehow it feels like it all happened years ago. At the same time, I’m so tired it feels like I am still sitting in that icy-cold church trying not to collapse from exhaustion.

The grief I felt losing my grandmother was great, but it was something I was more prepared for. This one, my grandfather passing away only months after her, I was not at all prepared for. I was so sure this strong grandfather of mine would live a lot longer – turns out he was strong, only he didn’t want to continue living if it meant being trapped in a bed and being in pain all the time. I understand it and I respect his decision. But I miss him. I miss what could have been. The worst part is, the ‘what could have been’ that I miss? With his type of cancer it never actually could have been.

Life has been strange lately. Not just lately, this entire year has been strange. I have gone through so many different feelings; I will never be the same. Now, many of us are affected by the covid-19 virus in some way. Some nations struggle more than others, but it seems like we all feel it.

A few weeks ago, at least I think it must have been a few weeks ago – I can’t really remember, I made a big life-altering decision and before I had a chance to really think about that choice, my grandfather was admitted to the hospital. It wasn’t covid-19, but the virus had already made the government decide to close all the schools along with many other restrictions – restrictions that has only increased since then.

My grandfather had a problem with his bladder, they said. He had been sick for a while; he had several surgeries this last year. Last one he had they messed something up and he had some issues with the bladder they had to check. It looked a lot like cancer, but they – the doctors – kept saying it wasn’t cancer. They tested him for covid-19 as well and there was nothing. He had fluid in his lungs, though. After some more tests they suddenly found the cancer. It was a very aggressive form of cancer in the lungs, but they said he could live 1-7 months.

I was relieved. I was even happy. I felt like half a year was okay. We would still have time. He could come home and spend his final days, not alone in a hospital bed, but with his girlfriend of 32 years. He would be able to lie in his living room and look out over the garden he spent his life working on. The house was his parents’ home as well, they built it and he expanded it even more. Just a couple of years ago, when he was 85 or 86, he was out in the back fixing the roof on the shed. He was a strong man, so I just assumed he’d live at least a few months. I never expected that barely a week would pass before he passed away.

My real father wasn’t a big part of my life – in fact I barely know him now, even though I wish I did. I missed him growing up, of course I did. I thought he left because he couldn’t love me, or maybe because I was born this way – broken. I was afraid he knew. I never hated my father, though. I was never angry that he left me, I wasn’t angry he never seemed like he wanted to know me. When I was little, I didn’t understand, but when I became older, I started to understand, and I don’t blame myself or anyone else for him leaving or not being a part of my life in the way I want.

I think a big part of the reason I never hated him was because of my grandfather. He did the things I wished my father would have done. My grandfather got me my first real bicycle; it was grey with a cute bell that I loved but was afraid to use. I was afraid to use the breaks on it too – it was my first real bicycle and I had never had anything that could go as fast as it could… only, I never had to use breaks either. I would always go as fast as I could on those country roads and then when I wanted to stop, I put my feet out in the air and wait until the bicycle was going slowly enough for me to break with my feet. Needles to say, it didn’t end well that often. It didn’t make me stop though. I wanted to go fast, but I was still afraid to break.

Every summer he would take me and one of my cousins camping in a caravan. He took us to see all sorts of strange and wonderous things all over the country and I loved it. It was a challenge, sure, but he instilled in me a sense of adventure, a curiosity, that I cannot explain.

Every Christmas the whole family would get together on the 26th and have a home cooked traditional meal – and we were quite a lot. His girlfriend has 7 children and my grandfather 2 and all of them brought partners, wives, husbands, children and lately, grandchildren and great-grandchildren.

As a child I hated such gatherings; too loud, too much food I didn’t want to eat, too many people and when the grown-ups got a little too happy I felt even more out of place. It’s been different for a couple years though. People stopped coming or left early and, in the end, we would only be a few people drinking coffee and talking quietly. I didn’t even have to talk! That was pretty amazing. I generally don’t like talking if I don’t have something I want to say, but people never understand that. I always end up getting nervous or worried and then… then I talk, and I can’t seem to stop. I hate it.

In all honestly, if I am talking a lot is most likely a bad sign.

My grandfather enjoyed the parties and having people around him, he wanted others to be happy, to joke and laugh and drink and eat. He always made sure that those who helped him out would remember to take a break and relax too. Work hard and rest well. That could have been his motto in life.

He was a stubborn man too. His word was law, but he didn’t abuse that fact. He was a caring and compassionate man.

A couple of days after the diagnosis I visited him at the hospital. He looked like he was tired and in pain, but he looked like he’d be okay. He was almost like his old self. I felt comforted by seeing him in spite of how much weight he had lost, his lack appetite, the fact that he could barely move and his slightly glazed eyes. He still looked better.

Then, on Thursday, they asked his girlfriend to leave and told her she was no longer allowed to visit my grandfather in the hospital. No one was allowed in because of covid-19. She was heartbroken and scared, but there was nothing to do. She left him there and the next morning we got a call from the hospital. My grandfather’s situation had suddenly taken a bad turn and we had to come quickly.

He wasn’t able to eat himself by then, but my mother and I didn’t know, so it was a surprise on more than one level when they told us he pulled out the tube feeding him himself. The doctor didn’t want to put it back and my grandfather didn’t want any more treatment. He told us over and over again after that, even after he completely lost the ability to speak and could only move his head slightly, that he had had enough. He wanted it to end.

We sat in his hospital room for two days until he passed away Saturday evening. I sat by his bed, like my mother and my grandfather’s girlfriend, as he let out his last breath. It had been clear for hours that he was approaching the end, all the signs were there, and they were more visible and obvious than I would ever have expected. When he died the three of us sang his favourite song to him. It was an unexpectedly beautiful moment.

The hospital was pretty much empty, with security guards checking people entering, with tents and plastic covered beds all prepared for the covid-19 patients soon to be arriving at the hospital. It had felt strange spending two whole days in that place, but I will never regret having been there. I will never regret spending two and a half hours on public transportation to and from the hospital. In a way, the lack of people was both a relief and a bit unsettling.

The funeral was yesterday. A few members of the family were allowed to go, which was nice, but it felt off. It felt lonely, somehow. I wanted to tell everyone he had passed away, but someone in my family wouldn’t allow it. He said, along with his girlfriend, that he would tell the rest of the family when they needed to know about it. It’s all because of some silly family drama. I understand that they were hurt, and that my grandfather was heartbroken because of how he was treated, but that doesn’t make it right in my opinion. No matter what someone did it’s not right to keep something like someone passing away a secret – everyone ought to have a chance to make peace with the past and say goodbye to someone loved. I think if we had been able to tell others, even if they couldn’t go to the funeral because of covid-19, then I would have felt less lonely in that big church yesterday. I felt guilty, but I didn’t have the strength nor the desire to fight their decision. I just wanted to say goodbye to my beloved grandfather, not argue ethics or morale.

Maybe it doesn’t matter, maybe my guilt and shame about this is silly – I really don’t know. I guess it’s all in the past now, so it doesn’t make a difference anymore.

The funeral was yesterday, but somehow it feels like it all happened years ago. At the same time, I’m so tired it feels like I am still sitting in that icy-cold church trying not to collapse from exhaustion.

The grief I felt losing my grandmother was great, but it was something I was more prepared for. This one, my grandfather passing away only months after her, I was not at all prepared for. I was so sure this strong grandfather of mine would live a lot longer – turns out he was strong, only he didn’t want to continue living if it meant being trapped in a bed and being in pain all the time. I understand it and I respect his decision. But I miss him. I miss what could have been. The worst part is, the ‘what could have been’ that I miss? With his type of cancer it never actually could have been.

The grief I felt losing my grandmother was great, but it was something I was more prepared for. This one, my grandfather passing away only months after her, I was not at all prepared for. I was so sure this strong grandfather of mine would live a lot longer – turns out he was strong, only he didn’t want to continue living if it meant being trapped in a bed and being in pain all the time. I understand it and I respect his decision. But I miss him. I miss what could have been. The worst part is, the ‘what could have been’ that I miss? With his type of cancer it never actually could have been.

Kai

Life with Autism Spectrum Disorder is not always easy, but it doesn't have to be impossible. Since I was diagnosed myself, I have been trying to raise autism awareness and share my own experiences and thoughts about life as well as my search for a happy and fulfilling life.

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