Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


March 24, 2000--I am alive... barely.


Dear Sparky,

It feels foolish to say that I took an extended vacation when you all have probably already figured that out. I love these letters, I love writing them and I love being able to explore different aspects of myself but when I went away (such an eloquent term for dropping off the face of the planet), I left because I needed to stop thinking so much about my disease. I know that you never insisted that these pages be about my disease, you even made it clear that I could discuss anything here and I tried but, for better or for worse, when I think of these letters I think of my disease.

And I needed to be away from that for a time. After I spent a month or so away and felt like I could come back, I got incredibly sick (gotta love that irony) and coming back to do anything on the computer was out of the question.

During that time I had a lot to write about, a lot of revelations that I came to and a lot of ultimatums made my various doctors. At the time, I pushed it all out of my head and put it in a box labeled "Deal With Later".

Then Dickie died.

It still hurts and I still want to cry my eyes out when I think about it all. Without Dickie I wouldn't have found the strength to sit down and write these letters, I wouldn't have known what to say or how to say it. Dickie proof-read all of my early letters and helped me with concepts for most of them.

Even thinking about it now, after two months of supposedly adjusting to his death, I'm still wracked by vicious, knife-like sobs. I still feel alone and very lost. I don't think that, until now, I really understood the concepts of never and forever. I can't believe that when I check my TLS mail, there won't be an email from Dickie, I can't believe that I'll sign onto ICQ and his name won't pop up, I can't bring myself to delete his name from my buddylist.

And I feel so stupid and foolish for still feeling this way after so long. And I thought that I had adjusted, I thought that I had dealt with the grief, I even analyzed myself as I moved through the stages of grief, I could've sworn that I was "over" it.

But it still hurts and I still cry and I still don't know what to say anymore.

When I realized that I was holding onto life by a thin thread that was nothing more than "Dickie would be disappointed in me if I stopped caring about everything right now", I started the process toward aquiring a therapist. I'm not suicidal, I'm not even bordering on depression (anymore), I just need someone to talk to about everything I can't control in my life.

I really did not mean to sound so depressed. I'm beginning to scare myself. For the last two months I've done a great impression of an ostrich, I've buried myself in my work and in my books (do not even think of asking me how many books I would read per day, and yes, that was plural) and I tried to stop thinking. I guess I can see why, now. All of this hopelessness and despair starts pouring out of me the minute I start thinking. I start feeling like I've lost more than just Dickie, like I've lost all of those friendships I forged with people like Karen and Lori and everyone else in the TLS group, I feel like I don't know any of those people anymore and that they've all forgotten about me. I know this is a foolish way to feel, I know, logically, that they haven't forgotten about me but I still can't help feeling that way. All of a sudden, the most important people in my life don't seem to be there anymore.

I'm really going to stop typing now. I'm obviously going through some sort of phase and I need to start pulling myself together. Either that or I need to have a really, really good cry. I'm not quite sure. In any case, I'm going to go pick up a good book and do what I used to do when I got sick, bury myself in a life that isn't mine and a story that always ends with happily ever after.

And I promise to try and write with more regularity... but I wouldn't hold your breath.

Love you bunches,


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