It's not personal

I've just told my beloved daughter not to come and visit me. Why would I do that?

(Warning: temporarily disabling 'Brave and Cheerful™' mode)

I have severe M.E. (a neurological disease similar to M.S.). There is no cure or effective symptom management, and the future I "look forward" to is not one I want to describe. The present sucks: I am severely debilitated, disabled and disadvantaged. I suffer horribly, every second of every day. I normally prefer not to talk about it, but I'm making an exception today, here.

One of the nastiest thing about this "progressive" disease is how it isolates you from your family, friends and community. I don't know my neighbours. I haven't seen any of my family, friends, colleagues etc. for years. I desperately want to see them. So why doesn't it happen? Do I live in the Antarctic (which oddly enough would ensure me a steady stream of enquiring visitors)?

No, I live in a pleasant rural town, where any of my friends or colleagues can drop in to see me. My family is perfectly willing to travel across the country to see me. They care, and they want to help. So they don't visit me.

Anyone who has had or dealt with a virulent chronic disease is probably getting the point by now: contact makes me sicker ... permanently. Early on, I would trade days or weeks of being much sicker, just to spend some time with friends or family, until I learnt that I never quite got back to my previous level of capability. As the disease "progresses", each time you lose more and more of your rapidly-vanishing capability. It's rather like borrowing money at very high interest, then not being able to repay it. However, this disease is even more extortionate than our banks: it doubles and triples the interest rate whenever you overdraw. You end up with nothing, which probably wouldn't be so bad if the process weren't so drawn-out and agonizing. Foreclose on me already! Don't leave me scrabbling desperately for small coins in the dirt.

So, how do you feel if your much-loved relative asks you not to come and visit her? By the sound of my daughter's voice on the phone today, you feel disappointed, rejected and unappreciated. She tried very hard not to show it, but I know her. In the same way, she probably sees through my determined cheerfulness in other calls. The fact is, we're separated by this disease, and we both hate it. Do I feel abandoned by my family because they don't visit me? No, but I feel resentful and miserable that my condition prevents them from doing so. Who do I blame? I really wish I had something I could hammer or lambast. My grandchildren are toddlers, and I've never seen them, apart from photos. I couldn't be with my daughter when she gave birth, or help her afterwards. I'm really angry about that. Unfortunately, I have nowhere to direct my anger. I'm no longer able even to punch pillows or scream. I end up being a quiet victim, and in many ways that is the greatest humiliation.

My daughter had made a great effort. Even though she and her partner are very short of money, they planned to spend it on bringing the kids to see me, over thousands of kilometres, with all the difficulties of travelling with children on a strained budget. After that, they were going to move even further away, to improve their work opportunities and the environment for their children. But first they wanted me to have this chance.

God, I appreciate it so much. I am crying as I write this. It hurts so much to say "No". I wish, desperately, that there were some way we could do this. Actually to hug my daughter again, to meet her partner, to be in the same room with their beautiful kids ... why isn't there a way?

I want this article to stand as a public declaration to my daughter, that I love her so much and appreciate what she tried to do. I don't want her to doubt her self-worth, or feel unwanted in any way. I value her, and her efforts, more than I can possibly say.

We have occasional phone calls, which mean a lot to me. I wish there could be more. I email when I can, and I read hers when I can. Whole weeks go past when I can't read or write, but email is actually the best mode for me: I can do it in bits. It may take a whole day to read or write an email, but I can try whenever I'm able. Any live contact is a much higher load. I've done very occasional IRC or IM/Skype, but can't maintain any contact. Worse, as the disease "progresses", I become unable to maintain previously-viable contacts. It's horribly frustrating, hurtful and confusing to those contacts, and more discouraging and isolating than I can express.

I really hope, in the future, that my daughter's family and I can video-chat. Maybe I'll even live long enough to see hologram contact. Maybe then, I can pretend I'm actually touching the people I love.

Sian, this article is for you. You're doing your best, and that's always good enough for me. Please don't doubt that. And thankyou for not pushing the point, not using emotional blackmail or being deliberately obtuse. These tactics cost sick people enormously. I have great respect for the honesty and consideration you showed. I know you're trying to understand my condition. I wish, so much, that you didn't have to.

The disease shreds my nervous system, starves and poisons my body, fogs my mind and deprives my spirit of the joy of contact, the buoyancy of realistic hope. It has taken me out of your life, held me at a distance, and left you without my support. It's a vicious, destructive cycle. I have fought so many things in my life, but the more I fight this, the worse I get. It's the ultimate Catch-22.

It's an uncaring force of destruction, like an earthquake or a bushfire. And no matter how much it isolates us and destroys our relationships, we're supposed to deal with it, somehow. "It's not personal."