Posted on Oct 14, 2010 in Blog |
My latest email generated quite a few comments, so I thought I might make a few clarifications. The email was short and sweet (and included at the bottom of this posting).
I wrote it after an astounding week. There was no major event that occurred during this astounding week, though. I didn’t do anything extraordinary as defined by others. But, on a Friday afternoon, when I realized I still had energy left after a week of meetings, lunch with friends, and the start of a new writing project, I was stunned. A month earlier, I could not fathom accomplishing even one these things. That’s how devastating Lyme Disease is to the body. To know I had done all of these things in a single week was actually a bit emotionally overwhelming.
I am not healed yet. I am healing. I am still in treatment for Bartonella, a co-infection of Lyme Disease. I believe I will be in treatment for another 6-8 months for this disease.
My husband, Jeff, and son, Stephen, also have Bartonella and are in treatment with the same physician as well. They are both improving; in fact, at this point, they will most likely finish treatment before I do.
Do I feel better? Absolutely! Am I back to ‘normal’? Absolutely not. I am bypassing (for now) the opportunity to write a whole blog piece on the definition of normal. I will save that for later.
I am still on medication, including one that causes tremendous fatigue. I come home from work at 4 pm each day and lie on my bed until it’s time to go to sleep. I no longer have to nap in the afternoon, and thank goodness I can work on my laptop from bed, but I do not have the energy to go out or even to do simple chores by then.
I call this time my healing time. I have a lot of those! It’s time when I just can’t do anything but let my body work at the healing process. I no longer get angry about the things I am not ‘doing.’ In order for my body to heal, I must rest. Rest is a huge element to the healing process. If I don’t rest, I will not heal. So, I lie on the bed and let my body work.
Many of you have commented in the past few weeks, so I know the changes are not just internal:
‘You’re smiling a lot more’
‘Wow, you’ve lost weight!’ – 21 pounds, thank you
‘I’m so glad we could finally get together for coffee!’
‘It’s good to hear you really laugh again.’
Yesterday, a friend wrote: ‘I’ve known you for nearly 4 years. You are happier and more content than I have ever seen you. Your attitude is uplifting. Your outlook is so bright that it shines like a diamond. You giggle and smile and laugh. Your heart is light. Your strength is amazing. It makes me so very happy to see you as I believe you have always been. You just had to uncover it.’
Yes, the changes are coming.
I feel tremendous gratitude for the changes in my body, my brain, and in my life. I’m not done yet. I’m just making sure I take it all in, relishing in the joy, sharing the laughter, and giving thanks for this tremendous gift. I’m enjoying the ride.
I shared my pain with many of you over the years; I figure I should share the joy and anticipation as well!
Yesterday, watching the Chilean miners come out of the ground, I again was tearful, rejoicing in the miracle. I chuckled as they each appeared in their sunglasses, protecting their eyes from the months of darkness they endured. I couldn’t help but remember that 80s tune, ‘My future’s so bright, I’ve got to wear shades!’
I’ve mentioned this song before, but it really illuminates (I know, sorry, bad pun, but I just had to use it) my perspective. To come from a place of such devastation, darkness and hopelessness, to emerge with fantastic dreams coming to fruition . . . well, it’s just plain crazy awesome.
P.S. – I saw my physician earlier this week. He was extremely appreciative of my last email to him. He chuckled, asking, ‘And how am I supposed to adequately respond to an email that deep and philosophical?’ I’m wondering if he knows it only took me 20 minutes to write it . . . . .
‘I don’t know… how do you think?’ I replied jokingly.
‘Anything I say simply would not do it justice,’ he stated.
‘Ok, then just send me a smiley face so I know you received it and read it!’ I said.
He chuckled, nodded his head, and said, ‘I can do that.’
Note I sent to my physician:
I haven’t felt this ‘present’ in more than a decade. It’s been happening over the past two weeks. It’s an adjustment, truly. I keep looking around and seeing the world with a new pair of glasses. I am starting to be present for conversations, I am literally seeing more clearly, I’m remembering more data and remembering it better. I am working more efficiently.
It’s just all a lot of change, requiring some adjustment. I knew it would get better, but when it gets this much better, it’s a tremendous emotional adjustment.
I spent twenty years thinking I was losing my capabilities (and I was); thinking I would never get it back. It’s taken a year, but I’m starting to get it all back and it’s overwhelming and humbling. To get it back at the same time as my first book comes out and working on this second book, it’s a bit more to take in than I realized. It’s all good . . . just change. And we know how the Lyme patients love change . . .
Didn’t realize all the head trash I had fed myself to account for my losses. A couple of sessions of EMDR therapy and that will be gone.
Whereas you have been able to move forward in incremental steps to make your vision come true, I was stuck for two+ decades. I could see the dream, but I couldn’t work the steps forward. Now, literally in two weeks’ time, I’m getting the energy and mental capabilities back in a huge rush. It’s like coming out of anesthesia; you go from pure silence and darkness to the full rush of sounds, sights, and sensations in a matter of five seconds. It’s just a bit much to take in all at once.
To you, you are just doing your job. You understand the process. It’s data. You prescribe the meds, keep the systems in check. You see patients every day so you know as time passes, they improve.
To this patient, it’s miraculous and mysterious even when I know the data behind it. And it’s very, very emotional.
I trusted you to heal me. I had no idea I would get all this . . .
Thank you for giving me my life back.
Thank you for giving me my dreams back.