After a very bad yesterday, i didn't dare attempt to go down to the Lyme Walk today. I even had a fellow lymie offer a ride and I was so excited to meet her! I haven't tried to do anything social in over a year; one exception; dinner with a friend that was cut short due to the talking in the restaurant. (actually, that was almost 2 years ago now that I recall). A nice day outdoors, socializing would be so good for me, I haven't even gone outside in over 2 weeks.
Lately I have had periods where I am having problems talking. Anybody that knows me, knows I have never, ever had a problem talking! My narcolepsy has become so bad, my mom reads my emails to me nightly over the phone; waking me up every few minutes. While I listen to her, I want to respond but the words cannot come out. For some reason, reading, or being read to, is now even more disabling. I can't tell you how scary it is to want to say something and not be able to speak...I feel like a prisoner in my own body; like duct tape has been put over my mouth and inside I am screaming but the words go unheard. And now, I am falling asleep even in the middle of text messaging! God I hope this is reversible or treatable. I hope the girls sell enough tickets to my fundraiser to get me to somebody that can tell me what to do. I am so scared.
I thought the Lyme walk would have been a great opportunity for me to surround myself with others the same as me. I have no Lyme friends. I am far from normal now. Nobody understands me. If I could have gone today, I could have seen others like me and maybe, for a few short hours I could have felt less alone. But my doctor has recommended I avoid public places. I tend to get lost and disoriented. And the noise is a real issue. I know there was going to be a band there.
I don't have television anymore so i couldn't watch it, but from what I've seen of past walks, many are there in wheelchairs and scooters, excited to be bonding, meeting new friends, and genuinely sharing their own version of hope. I can see the smiles on their faces, the determination in their spirit, and most of all, their frustration yet temporary forgiveness of a disease that has robbed them of their former lives. They have such enormous hearts, yet they have so many reasons to be angry! This is not your "typical" disease, that, while tragic, is at least widely recognized and given credibility. It is a political disease and every person there has a story of abandonment by the system, their doctors or perhaps even their own families who do not even "acknowledge" the disease they are fighting. And, what people have to remember... the ones that were there, wheeling in their chairs and scooters...those are the healthiest of the bunch. Most of my "on line lyme buddies" were too sick to make it. That's the reality. Some of them had husbands, siblings, or children walking in their honor. I walked along each and every one of them in spirit this year and, if I get the treatment I hope to get, I will be there in the flesh next year. I am so very proud of all of them!
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