At no time in the past forty years have we been more alone than we have been since I became irretrievably ill. The reasons why are so complex that it is almost too difficult to do so easily, or properly, in this blog, but I am sure that is true for many of the chronically ill; the details may vary but the results are often the same…
my husband and I moved to this city for the opportunities of career advancement and a very good income. The job and the opportunities were there, and so we jumped in, hopeful and focused.
We knew absolutely no one in this city, so my colleagues became our first real friendships and social networks.
I worked tirelessly for the first 18 months to get ahead, although my body was slowly starting to show weaknesses and the system was slowly ‘breaking down’. We kept going, and I kept ignoring the signs; Foolishly and naively.
While I was working I could always find someone to talk to and relate to. But there was no one I could talk to about what was happening and what was coming… it’s the sort of thing you just don’t talk about to the healthy.
When the crash finally happened we where very alone and trying to cope the best ways we know how, and trying hard not to drown.
What was going to happen? What did the future hold? We didn’t want to face the possibility that I wouldn’t get better, so we didn’t.
And then came the doctors, the google searches, the supplements, the miracle cures, the tests, the meds … and so much more time alone.
When we realized that there was truly just the two of us to face everything that was coming it felt very surreal. Doctors became our new family. One in particular. We owe so much to her, she never gave up on us, and that was more than many other people in our lives. She is amazing but the reality is that once we left her office we were once again completely alone.
As the years have progressed, our lives have grown much smaller, and the people in our lives now are mostly made up of people we have met in the past few years, mostly since this health journey began, which we have been extremely grateful for, but not having the time or the health to give them they are a very different type of relationship. More like online relationships or social media relationships.
But everyday, 24/7, we are alone.
I jokingly said to my husband one day that we could easily live in another world without ever feeling isolated or alone. It is true. We could. We would. We do.
As the years go by we have learned to place a very different definition to the concept of loneliness. The loneliness of struggling to do all things and everything. The loneliness of laughing alone. The loneliness of crying alone. The loneliness of struggling to do something, to achieve something, or to plan something, is very different when it is Just the two of you, and you are literally alone.
However, we have learned to become very self sufficient. Very resilient. Very devoted. Very honest. And very real.
We cheer for each other. We cry with each other. We work through all things together. We solve all things together. Everything we do we do for each other and together.
Since we didn’t have children, our furry ones are our family. From our little home we have tried to manage life’s challenges and make the best life we can.
I remember many years ago when life was very different and it seemed so hard to find the time and the opportunity to spend time together, the irony now is that this is all we can do, and I have become very grateful for it!
Imagine waking up on a deserted island, just you and one other person, and having to work together hard and constantly to survive. That is what it has been for my husband and I; We often forget what an achievement it really is to have made it this far!
But sometimes, secretly, in the middle of the night I turn to look at my sleeping husband and my worst fear creeps into my mind… “what if I was completely alone and we were together no more?”
Unlike other couples who may divorce or seperate or become widowed, it is not the same for the chronically ill. Our whole lives are constantly vulnerable. We are exposed in so many different ways.
It is the one thing I fear more than these disabling diseases and the worsening of my health. It is perhaps the thing that many chronically ill sufferers fear most, and yet very few people will ever recognize or speak about, or how it affects people who struggle for everything, everyday… and that is … facing it completely alone.
But I can’t afford to think about it, or let the fear of it rob me of more quality of life. I have to fight back those possible challenges and focus on the ones that I have now, in front of me.
But I am glad that we have had the chance to do so much more than merely survive these past years alone. We have learned how to truly love and appreciate so many things.
And we did it alone, together. ❤️