Posted on Jan 24, 2011 in Blog |

I started a poetry class this past weekend. It’s my first ‘extra-curricular activity’ in more than a year and a half. My goal for this poetry class is to figure out how to describe the past year of my life through the Lyme disease diagnosis and first part of treatment in some sort of succinct manner. I tend to write too much, too long . . I can’t seem to condense my words and still get the point across . . .

Every time I try to describe it, the words come out too histrionic, or over-exaggerated. Though, I don’t believe they are, I think others just think, ‘Come on, it’s Lyme disease. It’s not cancer.’

It’s not cancer. I am not going to die from Lyme disease. But my aunt did. And I know others who have died from Lyme disease. But not everyone dies from cancer. So why does Lyme disease seem to have less of a sympathetic ear than cancer?

I’m really not trying to work the sympathy vote here. I’m simply telling people what I think, feel, and experience. And for the past year, those thoughts, feelings and experiences have centered around my Lyme disease and treatment.

This wasn’t my original plan for 2010. I had plans to expand my business, sell licenses to other communities around the nation. This was going to be a year of real growth and expansion for me.

Well, as we all know, that’s not what happened. So I had to work with what I had.

Backtracking a bit here . . .

I remember when I went through the end of my first marriage back in 1988. As with most divorces, the end was not pretty. I traveled half way around the world, back to my parents, back to a country I hadn’t lived in for two years. My biggest transition: getting a telephone answering machine. It seemed so bizarre to me that I could leave messages for people if they weren’t home. It seemed more bizarre that I could screen my calls, thus not having to pick up the phone when my ex called. Which he did. A lot.

I came back to a country that hadn’t passed any stalking laws yet. And I needed that. I had an ex who sort of ‘lost it’ when I left him. He was ‘heartbroken.’ He ‘needed’ me. So he followed me half way around the world and then he followed me to the mall, to the deli, to the dry cleaner. He was determined to get me back. It was most unpleasant.

A by-product of that unwanted attention was that I craved ‘alone’ time. I spent weeks in my McLean efficiency apartment alone with my two cats. I sat on my futon sofa and did counted cross stitch for hours and hours each day in complete silence. The counting and repetitive pulling of the thread gave me something very simple to focus on and not a whole lot to think about. My most difficult decision of the day was what colors I wanted to use in the project. Did I want to go fuschia or float to the pale pink?

I felt safe in my apartment. I felt protected. It was my way of healing my brain and my soul. I did this for nine months. Obviously, I made it out to the grocery store, to my parents’ house for dinner; and eventually, I made it back to the mall. But I needed those nine months to heal, to let my soul repair itself.

After leaving everything a half world away (except for my two cats), I needed a place and time where no decisions needed to be made. Or if they did, they could take weeks to make instead of moments or hours.

Luckily, I had parents who understood this. Well, if they didn’t understand it, they never told me; and they at least respected it. I didn’t have anyone pushing me to ‘get out more,’ or get involved.

I needed those months of not making decisions, not going anywhere, not involving myself with others. I look back on it now and wonder if that is even possible in this day of instant connection and communication with cell phones and internet. I think today, it’s almost an impossible notion. But 23 years ago, it was exactly what I needed to heal.

God gave me what I needed 23 years ago. He gave me Silence and Solitude (with family nearby when I was ready). He gave me Time. He gave me the Opportunity to Heal.

In 1988, I needed time to heal my soul; in 2010, I needed time to heal my body. In a sense, I had to isolate myself to get the Silence and Solitude, the Time necessary to allow my body to do its thing; to heal.

I am realizing today, that He has given me the same Opportunity to Heal during the past year.

I remember starting 2010 as my Year of Healing. That was my primary goal. Of course, it was impossible to hole myself up in an efficiency apartment. I have a family, a job, etc.

But I remember thinking about what I had to cut back on, what I had to focus on. I had to cut back on my hours at work. I had to schedule in time to literally lie flat on my back. I had to schedule naps. I had to schedule time periods where I could turn my brain off and let it rest and heal. Pain was a significant motivating factor in my ‘schedule.’ I literally couldn’t stand in the grocery store anymore. Stephen and Jeff made the weekly runs for me. On the rare occasion I did go, one of them had to be with me and we couldn’t be in there for more than thirty minutes. And if the items were below my waist level, I wasn’t the one picking them up and getting them in the cart.

I said no A LOT to people, places and things. I established very strong boundaries with everyone. I refused to go out after 5 pm. I deleted all weekend activities. If it didn’t include work or family, it didn’t get on my list. I made no commitments to anyone except my doctor.

Luckily, or unluckily, Jeff and Stephen having the same disease made it a little easier in regards to compassion. Everyone in our house completely understood when dinner didn’t get cooked, or the dishwasher didn’t get emptied and when the laundry didn’t get washed. We all felt like crap. Often. The house was dirtier, messier, and less organized. We had dinner delivered more often. Christmas and birthdays were bought online and shipped to our doorstep.

There were weekends when no one got out of bed except to feed the dogs and cats.

Ok, so moving to 2011 . . .

And I’m thinking, ok, I’ve had my Year of Healing. 2011 is going to be the Year I Finish Healing and I’m going to GO GO GO . . .

New Years Eve was great. I had two great days that week. . . I was thinking, ‘I must be turning the corner.’

12 noon on New Year’s Day and I take a divebomb, and so do Jeff and Stephen, back to bed for three more days . . . For two weeks, I got up, showered, dressed, drank my green smoothie breakfast, and then had to take a 45 minute nap before even leaving for the office. Getting ready for work had completely exhausted me each morning.


Because, after all, this isn’t cancer. I’m not going to die from Lyme disease. So why can’t I get off my ass (literally) and get some work done?

I went to the doctor and said, ‘When am I going to get rid of this fatigue??’

‘I don’t know,’ he replied. Well, we all know how that went over with me. But he spent a long time with me reviewing my med schedule and offering some things to see if we could lessen the fatigue.

‘WHY am I going through such a long phase of extreme fatigue?’ I whined. ‘Jeff and Stephen haven’t had it nearly as bad I have . . .’ More whining.

‘I don’t know,’ he replied. And my tears of frustration start; not flooding, just a continuous drip.

Silence with a few sniffles.

Gently, he said, ‘You have had this disease for a long, long time; longer than Jeff or Stephen have had it. It is going to take your body more time to heal. You have to give your body the space and time and energy it needs to do its job. Being impatient isn’t going to get you to heal anymore quickly. In fact, it can actually impede the healing process.’

‘I don’t know why you are having such extreme fatigue,’ he continued. ‘But I know your body is not giving you a choice about slowing down. It’s telling you it needs you to continue at a very slow pace. Your brain may be telling you it’s time to ramp up, but your body is telling you it is not. And you need to listen to your body. You have to give your body the Opportunity to Heal.’

Three weeks later, the end of January. I had a great weekend. I went to Poetry class. I went to the grocery store. Jeff and I went to half of the Langley Fashion Show. I watched two football games. My back went into spasms, but some ice and Tramadol made it bearable. And yesterday evening, I thought, ‘This is it! I am turning the corner!’

Today, I went to work, totally psyched. I was so psyched that I stayed an hour later than I usually do. And then, I came home, and crashed. I had to lie down in a dark, silent room. I had to get completely horizontal so that no muscles had to work. I had to let my brain rest. And that’s where I have been for four hours.

So, the irony in this is that I come back to something I wrote in my first book. It’s that devilish word: ACCEPTANCE.

‘Accepting was not the same as giving permission. Accepting was not the same as liking or condoning or approving. Acceptance was an acknowledgement. I could accept my circumstances, my life, people, and even events around me, without giving my approval or releasing my control over such. I don’t have to like what happened; I just need to accept that it indeed occurred. Acceptance doesn’t mean that life gets better; it just means that my way of living life on life’s terms improves.’

So, here I am, back to Acceptance.

2011 may have to be Year Two of my Years of Healing. I will hopefully improve more quickly than I did in 2010, but if I don’t, I have to accept it, as I really don’t have the power to change it.

But I do know that if I don’t give my body the Opportunity to Heal, it cannot do its job and I will not heal.

It took 30 years to get the right diagnosis. This isn’t going to happen overnight.

I was talking with a friend today about his ‘plans’ for a book he is writing. He explained that with his Lyme treatment, he has had to put some of his plans on hold for weeks at a time. He is ten years younger than I am. He has had this disease for a lot less than 30 years. I replied, ‘Here you are talking in terms of weeks, and I, being 10 years older, have to talk in terms of months.’ I was jealous and resentful.

Got to go back to that Acceptance, Sharon.

This is God’s plan, not mine. I have to trust it. I have to know that God has brought me to this moment. He will also bring me THROUGH this moment. And it’s a lot easier if He doesn’t have to drag me through it.

Tonight, I will focus on Acceptance and Trust. And know that my responsibility lies in giving my body the Space, the Time, and the Opportunity to Heal.

As you can tell, my Poetry teacher has his work cut out for him. I didn’t fare too well on the succinct part tonight, did I?