I found myself feeling some unexpected emotions yesterday. Adam had gone back to work and I was once again on my own. It was the oddest thing, but I found myself with a sense of ease. Don’t get me wrong, I missed him, god do I miss him, but I was also at ease. I hadn’t realised that I had actually spent the majority of our four days together, feeling guilty. It’s something I often feel at the weekends, but we have been in a settled routine for so long, that I had grown used to it. Almost every minute that Adam is awake, and I’m sat here at my PC, I’m feeling guilty. Guilty that I haven’t shut my PC down, and that I’m not sat on the settee beside him. I know that he is equally occupied doing whatever it is he does on his laptop, or his second favourite thing, relaxing lain across the settee, browsing on his phone, but the fact he appears content doesn’t change how I feel. If I were to shut this PC down, then I would just be sat in a different location and I would be doing nothing, something that drives me up the wall if I have to do it, for too long. Not to mention, that I would also be feeling bad about not doing what I have a need to, writing, tweeting and keeping up, with what has become my life. For me every day is identical, weekday, weekend or holiday, it always remains the same, it’s part of my way of keeping myself settled, de-stressed and able to live as healthily as I can. My routine, is even more than that, though, what I do here online, is incredibly important to me. It gives my life housebound life purpose, something we all need. Yet, still I feel guilty.
Adam has had to give up so much of what should have been his life, because of me. He has taken over so much more than just the odd chore, he has taken over everything I once did, and on top, has taken over what I can’t do for myself. He deals with my mail, looks after everything to do with my medication, hospital care and much more. Not to mention, a full-time job, or the fact that my being housebound, outside of work, makes him housebound, in so many ways. He might be able to walk down the stair and out the front door, whenever he pleases, but he too feels guilty, guilty about leaving me alone. It doesn’t matter how many times I’ve told him that he shouldn’t feel that way, as he has to have a life, he just stays here, inside, day after day, night after night, with me, the person at the PC. He should have friends, people who he can share the world out there with, people who are so much more than a disabled wife, which I so often feel, is a wife in name only. I have to be the most useless wife anyone could ever have wished for. When he is here, when I can, I feel I should be sat with him, talking about whatever, being true companions, and I’m not even that.
As things stand, our weekdays are all the same. Well, at least, they were. We used to get up at the same time, although our time together was brief, we, at least, spoke a few words and shared a kiss, before he went to work. With my insisted change that I can no longer be up at 7:30 every day, as I need more rest, we no longer see each other in the morning. He has to rise, get ready quietly and leave without a word. Weather permitting, he comes home for 25 minutes each lunchtime, stopping just long enough to put his mind at rest that I’m OK. Failing that, he phones and more than double checks, that I haven’t had some terrible accident, the sort, I have never had. Come evening, after he has been for a walk or stopped by the shops, he returns, for those precious three hours we can spend together before, I once more have to sleep, at 9 pm sharp. From then on, he’s alone, hour after hour, into the night. At weekends, he stays here, a short walk, weather permitting, but other than that, we are here in our home. Me, at my PC, him at his laptop, or doing the housework, cooking, changing the bed and carrying out all the other things that a house needs taking care of, not mention, his care of me. Weekend, or weekday, it’s just those three hours in the evening, it’s the only time we are truly together, and that leaves me guilty.
I guess that’s what chronic illness must do to us all. We land up feeling guilty, just as our partners feel guilty as well and there appears to be no way around it. When we first met and married, we were rarely at home, we didn’t spend our hours sat in silence, separately doing whatever, in the same room. We were together, connected always by hand or body, not isolated, not two people, more one. Having three in a marriage changes everything, as that’s how my health feels. It has pushed its way between us, separating us in almost every way, the only thing it hasn’t done, is to break our love. We can’t go out together, we can’t do anything together, physical contact causes me pain, so even when we are sat beside each other, we’re still apart. Three hours each day, when we watch TV together. Is it any surprise that I feel guilty. It’s me that ill, not him, but he is paying a higher price than I do. I might have all the physical pain, but I know he feels it too, in so many different ways. Chronic illness never affects just one person in a partnership, it’s cruel, destroying “lives”, not just “a” life. No one warns us that there is a future ahead that will be filled with guilt, because of these illnesses no one can do anything about.
On the odd occasion that Adam ventures out for a day without me, he always checks that it’s OK with me first. Why would I ever stop him from going anywhere? But I do understand his question, it’s that thing called guilt again. He’s guilty about wanting to do anything, without me. What he doesn’t get, is that makes my guilt even stronger, I’m guilty because I’ve made him feel that way, even though, I’ve done nothing. You can’t avoid guilt, it creeps up when you’re not looking and suddenly it’s there, once more eating away at you. No matter how well we understand each other, no matter how much we are in love, we both racked with guilt, over what we can’t change and what we should have had.
When Adam goes back to work after a few days off, he always jokes that I will have peace and quiet when he’s gone. That I will be able to hold a party, have fun or any other ridiculous playful notion he can come up with. Our time apart is good for both of us. Adam has a few hours of freedom, yes, I know he worries about me when he’s not here, but he has a taste of normal life, the life we all should have. I, well I too benefit, but not in the way he thinks, my guilt goes away. I’m not holding him back, he’s free of me, my needs and my health. In an odd way, we both have a few hours of freedom as I can sit here, doing what I need to, without the guilt that I’m partially ignoring him, which I’m not. I spend those hours not just busy, but as I said in the first few lines, I spend them missing him. But that love, you can’t escape it, any more than we can escape my health.
Please read my blog from 2 years ago today – 31/12/2013 – Just life
For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because…..