With his permission I am writing this post on how illness and diseases have changed my husbands life forever, despite the fact that he doesn’t actually have them. He is my full time carer now but he never imagined that this could possibly have happened to him or to us and I marvel at the way it has transformed him and who he is today.
When we first started dating I was most definitely the more assertive, confident and the more outgoing. Because of the roles I had carried out in my life I was used to being a manager and a facilitator. I was all about a strong mental attitude and a positive approach. That was who I was then and I can only assume that was some of the things he most liked about me.
I have since learned that he also liked my intelligence and my loyal and loving devotion to those I cared for. I hope that this will always be how he sees me and how others will see me too. However time does change us and illnesses will change us completely!
Back then my husband was an academic, a geologist, an historian, a teacher and a published scientist. He was an admirer of Charles Darwin, and many other great minds over the centuries, and he shared his thoughts on their lives and works with me whilst we were getting to know each other. Neither of us could have ever known what was waiting for us and our own evolution which was waiting to happen in the most brutal manner possible.
Unlike the theory of evolution that Darwin suggested our own evolution and changes had to happen dramatically and far more quickly than the time frames for life on this planet. Ours had to happen almost overnight, and we only had each other to make it possible.
In my other blogs I have always written about life from the perspective of my experiences of chronic illnesses, and although this piece will also be a continuation on that theme, however it’s prime focus will be about the changes these illnesses have had on my partner and husband.
In the past decade or so I have seen my husband and partner transform from being a quiet, detached and retiring academic to one who now must carry out all the interactions and be the decision maker for our day to day lives. He answers all the phone calls, talks to anyone and everyone that comes along and takes care of all the financial transactions and bill paying. I used to do the lions share of all these things myself in the early days of our relationship and so it was a huge challenge for both of us to swap roles. Although we still discuss and plan our lives together collaboratively, the fact is that I no longer have the ability to carry out most of the day to day activities and have needed someone to oversee almost all that happens on a daily basis.
It is for these reasons that I have watched and witnessed how my husband has needed to become more open, more outspoken, more assertive, more disciplined and more organized; and we have both had to mature so much more than most people since autoimmune diseases took over my physical life. It has been incredibly hard for someone with my husband’s nature to take on all he has done and I am in awe of many of the ways in which he has endeavored to meet all these challenges.
Looking back on my former life and relationships I had seen how every time circumstances became hard or difficult other partners had either left, walked off or become bitter and destructive. I was expecting the same result from my husband as things started to unravel.
Thankfully I was wrong.
I remember one morning, after him being up all night with me in pain and struggling, watching him quietly dressing for work in the dark because he didn’t want to wake me. I cried with guilt knowing that he would have to endure a thirteen hour day before he would be able to return home and repeat the same nightly routine of house keeping and caring for me. Words can’t describe how we both felt during those years until we made the difficult decision of leaving his paid roles and income to become my full time carer. But even this was to bring fresh new struggles for him.
He has been irrevocably changed by our battles and struggles with illnesses and there is no way now that we could ever revert to who we were. Although some amazing qualities and abilities have been uncovered there have also been some darker things emerge that he (we) must now deal with. He has terrible anxiety issues, panic attacks, high blood pressure, migraines, insomnia, reactive depression, IBS and back and knee damage from lifting me and carrying me when I can not move myself.
I have watched him age overnight and yet I marvel at the dignity he shows despite all the challenges he faces. I have also seen him reach a point in his life where he no longer feels the pressures to conform with the stereotypical man that exists in society. He has evolved beyond this to show a nurturing side, an emotional side, an honesty and exposing his and gentle side which I thought I may never reach in any man, let alone in this man.
He owns his failures and mistakes with more dignity than many I have seen and he shows such love and devotion than I could ever ask for.
Years ago we both struggled to talk about some topics that were deeply personal and possibly embarrassing but today we talk openly and authentically about any and all topics. Nothing embarrasses or frightens us anymore! Nothing. We offer judgement free discussion to each other however difficult the topic may be. We have even tackled topics like our own deaths in a respectful and honest manner.
He has become a more resilient, funny, open, honest, trusting and beautifully flawed man in my eyes and our lives have had to take on entirely different meanings and directions.
Although today we rarely leave our home and we have become reclusive to a large extent there has never been a day in which we have felt intruded on or claustrophobic of each other’s presence. This is perhaps the most amazing thing of all! We are still able to set healthy boundaries and allow each other space within the confines of our own home.
Over the years he has been able to balance a lot of my feelings, thoughts, attitudes and thinking and I have helped him in these same ways too. Whilst I am sure there are many things that he would dearly wish were not a part of our lives and our circumstances today he is also quick to remind me that he wouldn’t want to be with anyone else. Those words alone mean more than any other words I have ever heard in my entire life. This has also been the hardest thing for me to understand but he has never given me a moment to doubt it.
Not even for a moment.
The most surprising things about him have been his constant devotion and commitment to our lives together, no matter what. Whilst so many others have turned away and disappeared, including friends and family, he has never once looked like leaving, although I have given him many opportunities to go. Many times I wondered how he could want to stay but his love has been unwavering.
Although such illnesses can impact on your physical abilities and sex life I have seen our level of intimacy grow and deepen like I have could never have imagined and we have looked at life’s hurdles in completely new ways.
Sadly, he has found it hard to find people he can relate to now and who can understand and empathize with him. He feels outside of the realm of other men his age. His peers don’t understand what his life is like and so he doesn’t hear from or interact with any. I can’t quite understand this because I only see someone whom I would want to know and have in my life due to how much he has learned and what he has to offer as a human being.
Despite all the hurdles that these diseases have placed in front of my husband I have been amazed and thankful for how he has risen to each one and although I would never have wished these things on him, and despite the fact they have taken us both to the edge, he has emerged from the flames time and time again in a new form.
Today we see life in completely different ways than almost everyone else does and our beliefs, ideals, behaviors, goals, personality, understanding and feelings have been forever changed by illnesses and diseases, but despite all this we still find ways to laugh, hold each other and smile everyday because, despite all that life has thrown at us, we have somehow survived it all together.