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On Leaping Through the Portal


    Everyone who is chronically ill should have their own computer.

    Do you know and care about someone who has a debilitating chronic condition? Do you wonder if there is something you can do to make a real difference in their lives?

    Get them onto the internet and they will have a chance to have a virtual life, to replace the one they cannot have in the real world.

    I knew a woman who had been bedridden and ill for many years. Dorothy had little to no chance of ever recovering, she could rarely even leave her house, except for doctor's appointments and hospital stays.

    But she had a computer. And she had a passion for an actor on an old TV show, and found her way to a fan website. She made friends with the other people who hung out there, and eventually became the moderator. She sent emails to, and received emails from, friends she'd never seen but she knew them better than she knew anyone in her own town.

    Instead of staring at the four walls of her bedroom day in and day out, or watching mindless hours of TV as her brain turned to mush, she had an interest and an avenue to get some zest out of life and form relationships she needed so badly.

    This is a common story among the chronically ill.

    My husband bought me a laptop this past March and I have had a new world open to me. I have people there that I work for and work with. I have friendships sharing common interests. I have other goofballs to laugh and clown around with.

    They let me know that they know I am here and that I matter to them. They bring colour and context, and the peripherals of life, back into my existence. They don't change everything, no. But they affect a big slice of my life, and that feels like it's changed everything.

    While I am no longer bedridden or housebound, and have been able to get out and about and do my own shopping, enjoy a short gab with the clerks and tellers in my town, I am still cut off from any real relationships with the people in my area, at least so far.

    This will eat away at your soul when it happens for years at a time. There are interplays in the most humdrum "normal" life that just don't exist in the lives of many of the chronically ill. If you've never experienced it, you can't even imagine what it's like. Trust me on this.

    I knew another woman, before I became a member of the chronically sick brigade myself, who was very ill. Robin led a support group for larengectomy patients, wrote a newsletter, and offered encouragement to her people. But she was very isolated within her illness.

    I regret whenever I think of this beautiful woman that I had a chance to spend time with her and be a part of her life and just didn't see how powerful the need was. She passed away a few years ago, and then it was too late for me to smarten up.

    I never had a clue about how hollow life could feel until I went chronic myself and then ...

    What a shock. THIS is what it's like. THIS is how it feels. THIS is how big and echoing the empty rooms feel, day in and day out.

    Oh my God. I didn't know in time.

    I can't do anything about what is in the past. But I can remember, for the future. Remember the other people I knew and did nothing for, in my obtuseness.

    Remember what it has been like for me, so when the day comes when I am truly well enough, I will start to make some visits, and some phone calls. I will send some cards letting some sick people know that I am thinking of them and that they matter to me. That they are special and that I love to hear from them about their thoughts and their lives.

    And, when the day comes that it is possible for me to do this, I'm buying somebody a laptop. And then I'm going to watch them leap through the portal and soar.

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