‘What does love look like? It has the hands to help others. It has the feet to hasten to the poor and needy. It has eyes to see misery and want. It has the ears to hear the sighs and sorrows of men …… That is what love looks like.’ - St. Augustine

Thursday, August 06, 2015

A Thimbleful of Hope

Because Lyme and the co-infections I have are primarily wreaking havoc in my brain, it is doubly hard to write and form sentences at times. Even that last sentence - It had 7 typos in it and word order problems and I had to rewrite it several times, and take a break mid-sentence due to the damn vertigo. I used to write my blog posts in one fell swoop - barely editing them, and rushing to get the words out as fast as my mind thought them. Not anymore. This is the symptom that most devastates me. I will never accept it or give up trying to fix it.  The vertigo is so bad some stretches that I must crawl on all fours to reach my own bathroom, and yet I would rather have vertigo for the rest of my life if I could just have my brain back.

Aside from that, my greatest sorrow is the loss of my ability to help others. Gone are the days of sending packages to the orphanage, starting fundraising campaigns, making treks to Russia. I have yet to even meet my beautiful granddaughter Sasha (Anya's daughter) because the dr said a trip, and to Russia no less, would set me back months in terms of healing.  I'm sure my posts will be all over the place, because that is the brain I live with now. There is no way to focus my thoughts anymore, and my memory is long gone. I used to have most of Shakespeare's plays memorized - the first word to the last. Now I cannot recall a line of Shakespeare unless someone prompts me with the first few words of it.

And yet on good days, I can seem relatively normal. On good days, I get my words back (a few), I get my ability to walk normally back. ON good days I don't stutter, transpose words. On good days I don't have too crawl to the bathroom or hold the walls as I walk. On good days, there is no facial paralysis, no clawed hand that looks like I had a stroke. On good days I don't hallucinate from petit mal seizures. All of this may sound outrageous, but it's all exactly what I am living with. And it is hell and I hate it.

Even on the good days, however, I deal with enough frustrating and painful symptoms to make a grown man cry: tingling, shock-like and burning sensations that travel to different areas of my body, horrible joint pain, dizziness, memory loss, patches of numbness on my legs and face and arms,  severe heat sensitivity,vision problems,hair loss, sound and light sensitivity,  and exhaustion on the level on a mono infection. And yet none of that shows on the outside, so people often do not 'get' that I am sick, and that poses another huge set of problems.

[Right in the middle of that paragraph I had to stop for 20 minutes, because my hand seized (looks like a seizure, but just in my hand) It cramped up so tightly it hurt terribly - like a really bad charlie horse.]

Btu, believe it or not, i don't want to just vent about my woes here. I do want to share about them to inform people and also take some weight off my shoulders, but I also want to speak more broadly about Lyme as a disease and how it is treated in this country. I want to speak about the loss of people you thought were friends when you have a chronic illness. I want to talk about the guilt at having to watch your kids deal with it. And, on a good day, I want to take about possible gifts in all this. I'm not seeing them today, but I know they must be there.

Need to go back to bed now. That's another crappy part about Lyme - the need to sleep 16-22 hours a day. For a typically 'go-go-go' person like me, its just torture. I feel like the world is racing by me, and I can't go along for the ride.

If you are reading this and have Lyme, please comment. It's good to know we're not alone. We need to grasp hope wherever we can, even if it's just a thimbleful.

Spirochetes - the enemy that invaded my brain and body.


  1. I don't have Lyme, I have CP, as you know. But I "get" this on many levels- As I've aged, my muscles and bones have continued to warp and weaken and I am just not who I was 10 years ago.

    Some people don't understand that I don't have the energy anymore... and that it's not because I've "let myself go"- It's my disability.

    As always, I love you. <3

  2. i am just so very sorry.

  3. my father had Lyme disease 40 years ago. It took two years to diagnose and by that time he had been in the hospital for 8 month and was partially paralyzed. He is now in his 90th, still living in his house, independent and active. The only symptoms that remained over the years were some pain and weakness in his left arm and occasional migraines. There is hope.

  4. Anonymous9:02 PM

    i am sorry sorry to hear about your condition. i wish i lived closer as i would love tobe of help. like you, i like helping others. maybe there is some reason in this - maybe god will bless others who can help you now. i love your blog and have followed it for many years now. i will keep you and your family in my prayers as always. even if you lose friends, know there are others out there that you dont even really know that will stick by your side and be a friend.


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