Monday, June 15, 2009

In Lori's Voice

Saturday, March 15, 2008

Snow patrol

Driving back from a specialists' office three hours away, my mom and I crested the big hill, the one where the bay spreads out below and you know you're home. This song (hit play) came on the radio as we silently looked out the windows at melting white snow and cold air and the glinty last remnants of sunset on the bay. It was that time of night where everything exhales blackness, and the blackness slowly absorbs the last light.

The sky acutest at its vanishing, as Wallace Stevens wrote.

The doctor ordered more IVs, different IVs, and said there is a school of thought among some physicians that Lyme causes what the French call Maladie de Charcot. But no one knows. Our motor neuron maladies are more mysterious to modern science than AIDS and cancer and the moon, so mysterious that even accurate diagnoses elude us. So we're left to lay still, minds intact, as our voluntary muscles stop working.

My mother arrived three weeks ago and now helps me move from thing -- bed, chair, bath -- to thing. My boy has been a trooper but the night before our trip to the new doctor, he broke. I tried and tried to stand and pivot into bed to lay next to him and read One Fish, Two Fish, Red Fish, Blue Fish, but again and again, my legs wouldn't lock. I told him I was so sorry, but I couldn't do it. He began sobbing.

Try again! Try again! ONE MORE TIME! he cried over and over. I just...couldn't. As much as I wanted to. I finally grabbed him from bedside and held him and sang him into quiet. He finally talked. Maybe the special doctor will make you better.

And maybe he will. The special doctor ordered an array of new drugs, said such regimes have been successful in halting symptoms in his patients who've been diagnosed with ALS, and one's been alive and kicking for 12 years, when most with that dx are hit in the lungs and die in two to five years, starved for air.

So there is hope.

My mother and I believe this. I looked over at her as Snow Patrol played on the radio, and we both were crying. We both looked back at the water and snow. Then I felt her warm hand slide into mine, and we drove the rest of the way home like that, saying nothing, as night fell on the bay.

-Lori Hall-Steele


  1. This both breaks...and warms my heart at the same time, being the mother and caregiver of an adult daughter with Lyme and co-infections. How many times we've driven together, in tears with our hands locked to feed each other the strength...eleven years worth.

    With treatment, we've seen steps forward...granted, slow and with one back for each two forward...but still...enough for hope.

    Thinking of you Lori...and your mother. xo

  2. Thank you. Let us know how you are doing now. My 6 yr old and I live with my mother so she can pick up the pieces everytime lyme rips me apart. My son has named it "the sleepiness". Even though I'm 38, I keep having a recurring dream lately that I'm 2 weeks from graduating high school, but too tired to finish. My mind keeps saying you gave it 12 years, just give it 2 more weeks! And my body says (in my dreams even) I can't go one more step.
    I feel your pain. You're in my prayers. Your family too.

  3. O how I can relate to the story, only I am the mother with lyme disease and my son is my care taker with a great man that married me knowin,how sick I am. My son and I drive home from the doctor's in silence.I know what he is thinking and he knows what i am thinking, how much longer does my mom and her brave soul have left before she is down and not the mom I knew..Been lucky i guess thats what i want to say,I walking and talking some what, even though my words come out wrong most the times, but my support team know and helps me and than we laugh, but i also know it's not going to be long and i am going down for the count. So far the 1500mgs of antibotics have kept me going, but I know the day is coming!
    my heart goes out to all of u! I know how hard it is on the care taker too, my son is 34 yrs old and gave up his life to take care of me
    hugs, prayers and my heart felt love for all of u

  4. So many sad and tragic stories. I constantly thank goodness that I had a thinking GP who was prepared to ignore advice from HPA and follow ILADS guidelines eventually her suspicions were confirmed by LLMD and after two and a half years antibiotics I have my life back but still not able to get antibiotics. When will IDSA wake up and listen to what is being said to them and do the right thing.

  5. Sorry That should have read get off antibiotics yet.