I live with the curse of being widowed, not once but twice, due to chronic, drawn-out illnesses (10 years each) of spouses. I wouldn't wish such a fate on my worst enemy. But in talking about what I have "lived" over a 30-year period, I hope that there will be significance in after-the-fact rationalization and confession that will have resonance with some and enlightenment for still others.
This will, understandably, be a one-sided retrospective that has roots in physical and emotional loss, dare I say pain.
Consider that on one side you have the chronically ill partner who has needs – sexual, physical, mental, emotional, spiritual, to mention but a few.
Unfortunately, the chronic pain that comes with inflictions like Fibromyalgia (just one of the health issues endured by second wife Rosanne) gets in the way of fulfilling not just sexual needs but physical needs in general. Even a hug or a touch is often painful, leaving the person feeling physically disconnected from those they love. That physical disconnection can often lead to a mental and emotional disconnect when loved ones (especially a husband) misinterpret the lack of physical contact.
On the other side is the healthy partner who, while they see that their partner is hurting, doesn’t always disconnect that pain from their own. Instead of stopping to think about how much pain their partner is suffering and how much their partner is missing out on because of the pain, the healthy partner will often focus on what their partner is not GIVING them. This can cause them to withdraw or even lash out in anger and resentment.
Out of frustration and desperation, I often found myself saying and doing things that I later regretted and left me with a guilt complex that exists to this day. Things that I am sure undid all the good that I otherwise intended -- the personal catering, the daily health care facilitation, food preparation and attendance to virtually every need and whim. Not to mention countless hours spent in pacification, emotional counselling and just plain listening.
The words "Dick, I just don't want to talk about it!" also linger in my ears. Ill people sometimes resist attempts by others to draw them out...To express what they are really thinking, but in their mind it would do no good so why bother getting further upset.
The withdrawal by the healthy partner can and does lead to a vicious circle where the ill partner withdraws to protect themselves, leading to resentment on both sides. In many cases healthy partners withdraw completely -- from the marriage that it is.
In the cases of my two wives, I followed my heart and stubbornly stayed the course out of sheer dedication. Toward the end(s) however, I pretty much withdrew from society in general in order to singlemindedly cope with my lone steadfast priority. Laterly, I was a total mess and near the end of my rope, exhausted, hopeless and dangerously close to giving up the ghost.
It was God's will, I guess, that I survived and my wives were given Heavenly release. In essense, you will not understand any of this unless you have lived through it at least once.
So, what can be done to reduce the impact of chronic illness on marriage? Good question.
There is, of course, always counselling. But I'm here to tell you that is the last thing you welcome when your life is already turned upside down and invaded by doctors, nurses and health care providers of various descriptions. In the role of primary caregiver, it is all you can do to just get through most days. You are simply exhausted in all ways imagineable.
In my experience, and in retrospect, it is important that each spouse try to understand their partner’s point of view. The healthy spouse needs to take time to realize that the ill partner is also missing out on life. The ill spouse also needs to realize that their illness does affect everyone around them, and again in my experience my two wives did and it caused them great sadness, even depression. They were both outstanding girls in their own individual ways, unfairly gone too soon.
It is also important to remind ourselves that our partners did not stop loving us...they just lost their ability to demonstrate it in the previous ways of normal life. Intimacy, as difficult as it may be, is important even when you live with chronic illness such as the one brought on by the dreaded "C" word.
The need for intimacy never leaves us. I now struggle to supress the need, knowing full well that it is too much to expect ever again. Life as I knew it, for all intents and purposes, is over and I just fill in the time doing with it what I can -- and in the best way that I can.
And when all is said and done, you are left with devastating grief in the loss of a purpose in life -- the one person who stood by you through thick and thin and who loved you in a way that no one else could.
Yes, life does go on...but it is never the same.
And we cannot do it over again. That's the sad part!
I'm not sure that I would want to, even if I could.
I'm not sure that I would want to, even if I could.
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