How I Lost My Soul Mate in My Forties, Then Found I Was Autistic
When an autistic person loses the one person they rely on for everything
Soon, it will be ten years since my wife Jane was diagnosed with secondary breast cancer, from which she died three years later. Back then, everything was fairly normal around here; sometimes it’s hard to believe that, because it seems like a lifetime ago. We were both working, and raising two children. Life seemed good, and we were happy.
I’ve not really written about being widowed on this site before, so I thought I’d start with our early years together, and finish with our last days together.
[Note: For privacy, I’ve changed my wife’s name to Jane.]
It might be a cliche, but Jane had a smile that could light up a room. And when she turned that smile on me, on the first night that we met, I felt like the luckiest man in the world.
We were only four months apart in age, and had both been lonely for so long. We were just such a good match. It wasn’t long before we knew what the other one was thinking, and what they needed. We had shared interests, but also enough differences to keep it interesting.
I’d lost my dad a couple of years before we met, and Jane had lost her grandmother a year before that. We’d both had limited support from our families, so we were still grieving. That brought us even closer together: we were best friends; lovers; soul mates.
I loved everything about Jane. She was warm-hearted, kind, sexy, funny, and a little bit crazy. I never got tired of listening to her voice, or looking into her eyes. I knew I could trust her completely, and rely on her 100%. She let me be myself, and made me feel normal, valued, important and understood. She always had time to listen.
After becoming so close so quickly, we didn’t waste much time. Nine months after we first met, we bought a house and moved in together, and were married nine months later.
We were generally fairly cautious with money, opting to take the old-fashioned approach and save up for things. That’s something that I now regret, because there were things we could have done but didn’t, and she never got to reap the rewards of our frugal early days.
When our second child was born, it was necessary for Jane to go into the operating theatre, due to a retained placenta. At that moment, for the first time, I felt a genuine fear that something bad might happen, and thought about what life would be like without her. Thankfully, she was soon in the recovery room, and everything was alright.
We soon got used to being parents, and Jane was a great mum. She was much better than me at things like buying presents and treats, organising parties, and chit-chat with other parents etc.
Over the years, some health problems surfaced, such as rheumatoid arthritis, so Jane reduced her hours at work, meaning that she had a day to herself every week. Around that time, she had an early miscarriage, which was truly heartbreaking.
Sadly, my mum died in 2008, after having dementia for a number of years. So our children never really got to know my mum, and my dad had died years ago. Jane was still depressed after the miscarriage, and this was the only time that she wasn’t really there for me. In some ways, it was like when my dad had died 18 years earlier, and I felt like I had to deal with the grief on my own.
I did my best to stay strong during Jane’s illness, and look after everyone. There were certainly many ups and downs during those years.
Immediately after diagnosis, there was a time when I didn’t think she’d make it, it was that bad. But the initial treatments helped, and she came home after about a month. Jane even returned to work for a few weeks, but was eventually retired on ill-health grounds — something which pleased her parents, but terrified me, because it made it clear that the doctors knew she’d never be fit enough to work again.
In 2011, we celebrated making it to 12 months after diagnosis, by having a few days away in Chester. There were mixed emotions: joy and happiness, along with an underlying fear of the future, where we wondered what the situation would be next year. A few months later, we had our only ever family holiday together in Wales.
The disease continued to spread, and further treatments in 2012 were less successful. I looked up the prognosis online, and was frightened to read that only 20% survive for five years. I had to face the thought that it was likely I would lose her, so I gave up work to look after her and spend as much time with her as possible.
At the hospice, nobody was really telling me anything, but I had a bad feeling about the way the staff were talking quietly, so I asked some questions. I was stunned when they told me that Jane had just 2-12 weeks left to live! So I got her out of there, and we did a few things together, such as going to see Star Trek Into Darkness (she loved Star Trek). I still can’t believe how someone can be able to do something like that, then be dead a few weeks later.
Jane was everything to me. So when she died, it was devastating.
Our future life together, our hopes and dreams, the idea of growing old together, seeing our children become adults together — all gone.
Having no parents, and almost no friends, meant I had limited support. Thankfully, Jane’s parents are still around, but they were grieving for their daughter of course.
I had no idea that I was autistic until long after Jane had died.
Looking back, autism might explain why I had relied on her for everything, and why I felt uneasy letting strangers such as nurses into our home at first.
In 2014, a Luke Beardon talk on Autism and Anxiety that I attended really got to me, when he talked about what would happen if an autistic person relied completely on one person, and then that person ‘fell off the end of the Earth’.
I was just beginning to find out…
In a future post, I hope to write about life as a widower, and how I’ve got through the last seven years.
I’ve not really written about being widowed on this site before, so I thought I’d start with our early years together, and finish with our last days together.
[Note: For privacy, I’ve changed my wife’s name to Jane.]
The Early Years
We met in 1992, after I answered a lonely hearts advert — remember this was long before the days of online dating sites. Jane and I got along incredibly well right from the start, and she chose not to meet any of the other men who’d replied.It might be a cliche, but Jane had a smile that could light up a room. And when she turned that smile on me, on the first night that we met, I felt like the luckiest man in the world.
We were only four months apart in age, and had both been lonely for so long. We were just such a good match. It wasn’t long before we knew what the other one was thinking, and what they needed. We had shared interests, but also enough differences to keep it interesting.
 |
| An ornament dating back to my wedding day. Photo taken by author. |
I loved everything about Jane. She was warm-hearted, kind, sexy, funny, and a little bit crazy. I never got tired of listening to her voice, or looking into her eyes. I knew I could trust her completely, and rely on her 100%. She let me be myself, and made me feel normal, valued, important and understood. She always had time to listen.
After becoming so close so quickly, we didn’t waste much time. Nine months after we first met, we bought a house and moved in together, and were married nine months later.
We were generally fairly cautious with money, opting to take the old-fashioned approach and save up for things. That’s something that I now regret, because there were things we could have done but didn’t, and she never got to reap the rewards of our frugal early days.
Children
Having spent time during our early years together doing things like Open University degrees, we left it quite late to have children, being around 37 and 38 years old when they were born.When our second child was born, it was necessary for Jane to go into the operating theatre, due to a retained placenta. At that moment, for the first time, I felt a genuine fear that something bad might happen, and thought about what life would be like without her. Thankfully, she was soon in the recovery room, and everything was alright.
We soon got used to being parents, and Jane was a great mum. She was much better than me at things like buying presents and treats, organising parties, and chit-chat with other parents etc.
Over the years, some health problems surfaced, such as rheumatoid arthritis, so Jane reduced her hours at work, meaning that she had a day to herself every week. Around that time, she had an early miscarriage, which was truly heartbreaking.
Sadly, my mum died in 2008, after having dementia for a number of years. So our children never really got to know my mum, and my dad had died years ago. Jane was still depressed after the miscarriage, and this was the only time that she wasn’t really there for me. In some ways, it was like when my dad had died 18 years earlier, and I felt like I had to deal with the grief on my own.
Illness
In 2010, Jane started suffering from neck pain, which was thought to be a slipped disc at first. After a long delay (which included waiting for the local MRI scanner to be fixed) she was diagnosed with secondary breast cancer. We were shocked and devastated. It had already spread to her spine, and was incurable.I did my best to stay strong during Jane’s illness, and look after everyone. There were certainly many ups and downs during those years.
Immediately after diagnosis, there was a time when I didn’t think she’d make it, it was that bad. But the initial treatments helped, and she came home after about a month. Jane even returned to work for a few weeks, but was eventually retired on ill-health grounds — something which pleased her parents, but terrified me, because it made it clear that the doctors knew she’d never be fit enough to work again.
In 2011, we celebrated making it to 12 months after diagnosis, by having a few days away in Chester. There were mixed emotions: joy and happiness, along with an underlying fear of the future, where we wondered what the situation would be next year. A few months later, we had our only ever family holiday together in Wales.
The disease continued to spread, and further treatments in 2012 were less successful. I looked up the prognosis online, and was frightened to read that only 20% survive for five years. I had to face the thought that it was likely I would lose her, so I gave up work to look after her and spend as much time with her as possible.
Our Last Months
In early 2013, Jane’s health suddenly got much worse. The doctors blamed the disease, but paramedics figured out it was high blood sugar due to diabetes resulting from being on steroids for too long. Sadly, after dealing with that, it wasn’t long before things got worse again, and she ended up in a hospice after the cancer spread to her liver.At the hospice, nobody was really telling me anything, but I had a bad feeling about the way the staff were talking quietly, so I asked some questions. I was stunned when they told me that Jane had just 2-12 weeks left to live! So I got her out of there, and we did a few things together, such as going to see Star Trek Into Darkness (she loved Star Trek). I still can’t believe how someone can be able to do something like that, then be dead a few weeks later.
Jane was everything to me. So when she died, it was devastating.
Our future life together, our hopes and dreams, the idea of growing old together, seeing our children become adults together — all gone.
Having no parents, and almost no friends, meant I had limited support. Thankfully, Jane’s parents are still around, but they were grieving for their daughter of course.
I had no idea that I was autistic until long after Jane had died.
Looking back, autism might explain why I had relied on her for everything, and why I felt uneasy letting strangers such as nurses into our home at first.
In 2014, a Luke Beardon talk on Autism and Anxiety that I attended really got to me, when he talked about what would happen if an autistic person relied completely on one person, and then that person ‘fell off the end of the Earth’.
I was just beginning to find out…
In a future post, I hope to write about life as a widower, and how I’ve got through the last seven years.
Thank You
I hope you enjoyed reading this article. Please consider supporting me by:
- Visiting my ko-fi.com page ☕️😊
- Responding to this article, or sharing it online
- Reading my articles on Medium
It really helps, and means a lot to me.
Related Articles
My Experience of the NHS Autism Assessment for Adults in the UK
My Rant From 2013: How Virgin Media Treat the Widowed
Comments
Post a Comment