Fortezza, Umilitade, e Largo Core - Courage, Humility, and Largeness of Heart.

Monday, May 31, 2010

I miss the woman I used to be.

Today is the last day of Lyme Awareness Month and I find myself struggling.

I miss who I was and I struggle to accept that she may never return. I used to bounce, constantly. I had a bottomless well of energy. I was constantly social, always connecting with others. Now even bouncing wears me down. I wouldn’t label myself anti-social, but I no longer make and maintain connections like I used to.

One of the things that hurts my heart the most is that I am not able to be there for my friends like I used to. Supporting the ones I love has always been so important to me. I missed my friend’s bachelorette party (that I helped plan) because of herx reactions. I will miss another friend’s wedding because I don’t have the energy to get there and back. Even just reaching out and being a friend is difficult for me.

I miss being academically gifted. I hate suffering from dysnomia (the inability to recall the correct word from memory.) I am a concise writer and select each word carefully; due to the dysnomia, I will search for the word I want for 20 minutes or more. (ok, I’m also neurotic.) I’ve also noticed that I struggle to pronounce words, which I wonder if that is a similar neurologic process. When talking, I may say what I am thinking but random, incorrect things might come out of my mouth instead. Sometimes I am able to catch my errors but sometimes not. It’s even harder for me to write my thoughts. I am blessed that a friend has volunteered to take dictation for me so that I can finish up my summer semester. I know that I should be careful what I wish for but I almost wish that I wasn’t able to recognize the cognitive changes; I find myself longing for the bliss that ignorance bestows.

In a backwards sort of way I was blessed when twice I considered just giving up. Each time I was presented with an easy way out: the first time I was swimming and ran out of energy; I looked around to find the pool edge to grasp and realized I was in the middle of the deep end. I knew that I could have just allowed myself to drown and I would be released from my suffering. However, I chose life. I kept my lungs inflated, did a deadman’s float and waited until I floated close enough to grab the pool edge. The second time was a couple months ago while I was struggling with pneumonia and was in so much pain I wondered if I could continue to bear it. While swallowing my joint supplement pills, they lodged sideways in my throat. A couple months prior to this a dear friend had choked and died suddenly, so I knew how dire my predicament was. I knew that I could panic and allow my throat to close and that would be it, the end. Once again, I chose life. I remained calm, continued to breathe, and waited for the pills to dissolve and pass through to my stomach. It took a few hours but it was worth it. My doctors say that I have too much life left in me to give up yet.

The fact is that the past is gone. What was cannot be retrieved, so I must figure out how to work with what I have now. I must love who I am now, learn patience and acceptance. I just really miss her.


  1. thank you for sharing. you are a beautiful person. i love you dearly.

    speaking of choosing life, deuteronomy 30 is one of my fave books of the bible. check it out sometime. in a totally non evangelical way. hahaha. :)

  2. I too am so happy you choose life! If you did not I would have missed the experience of knowing you in this lifetime :)

  3. I appreciate your "realness" & I too dysnomia and often feel as though I have alzheimers or dementia, I can relate so well to your post, I caught myself "seeing myself" there. You put the words together that I no longer can express. Thank you again for being REAL I only learned of my diagnosis 6/12/13 I have learned so much BUT I STILL have SO MUCH to learn. I look forward to reading more of your blog and learning even more.

  4. My goodness. You really had me with the first half, especially the dysnomia. I'm an English major, i shold be able to come up with the word clipboard instead of grasping at straws. Is it a trapper keeper? No. A binder? No. Close, but no. Keep trying. 20 minutes or so later. That thing, the word i needed, there it is.

    I havent ever really though of giving up yet. I'm just much more stubborn than that. And there are too many new things to learn, to experience, to taste. I'm a very deep person, but the shallow things like awaiting the taste of pumpkin pie can keep me going almost indefinitely.

    I'm only now coming to terms with the fact that i'll probably never be able to play hockey again. That was so demanding, even when i was in the best shape of my life. I'll bet just putting my goalie pads on would wear me down to nothing.

    There will always be something new. Before lyme, i had never scuba-dived. Sure, my lungs seem to work differently in water now and it's much harder to breathe, but being able to just float around and look at new life and watch schools go by and see a mantis shrimp and tiny squid, it's so nice to have a thing i can do. I refuse to take no for an answer, and i keep pushing myself. One of these days i'll find the happy medium.

    If you ever consider giving up again, just think of all who look to you to be their pillar of strength. It's probably more than you realize. Not just internet followers or other lymeys, but friends and family who admire your resolve, who dont think they'd have what it takes if in your shoes, and are immensely proud of how far you've come and what you've withstood.