Tuesday, August 27, 2013

Where Does The Time Go? by The Innocence Mission


Every now and then, I like to share some music on My Lyme Symphony because it's such a big part of my life. And I also share it because I think adding some heartfelt musical expression to this Lyme journey is absolutely necessary.

The Innocence Mission has become one of my most favorite bands in the last few years. Their unique alternative and ambient folk rock melodies deeply touch my heart. They capture both the profound and simple moments of life through their beautiful poetic lyrics and musicianship. Their songs are intimate, moving, inspirational, and thought-provoking. And they're often metaphorical, containing a deeper message beyond what one first hears. They sing about things we can all relate to; things like grief, joy, nature, love, faith, loss, friendship and life in general. That's one thing I really love about their music. The band primarily centers around husband and wife singer/songwriters, Don and Karen Peris. Although he isn't in this video, Mike Bitts is also a member. Birds of My Neighborhood, My Room In The TreesBefriended and Christ Is My Hope are my favorite IM albums.

Sometimes, when I'm in need of some personal TLC, I'll fix myself a hot cuppa Jasmine green tea and put on some music by The Innocence Mission. It's very soothing. Just does something for my heart. So with that thought in mind, I hope you'll enjoy this acoustic version of "Where Does The Time Go?"

Blessings.
~Michelle

Where Does The Time Go?

We will walk on a hill
Red hats and blue coats, and everything still.
Snow will cover until
We can't tell the sky from the ground.
Where are the buildings, the old wounds of mine?
Did I ever once cry?

(Chorus)
Waiting for you to arrive.
Where does the time go?
Where does the time go?
Where does the time go?
Where does the time go?

Friends have moved away.
One tree has come down, another one flowers and sways.
Miri was lost for five days.
From upstate at school one friend writes,
Everything is changing while the day sky stays blue.
Changing around him, and me without you.

(Chorus)

Balconies and flights
Of wooden stairs down to the water at low tide.
I'll carry you and we will walk in the light.

(Chorus)
Waiting for you to arrive.
Where does the time go?
Where does the time go?
Where does the time go?
Where does the time go?

[Karen Peris]

Saturday, August 10, 2013

H.O.P.E.


 1. Hope [ho'hp] transitive verb: 
a) to desire with expectation of obtainment;
b) to expect with confidence: trust; rely

2. Hope [ho'hp] noun:
a) desire accompanied by expectation of or belief in fulfillment; expectation of success 
b) the feeling that what is wanted can be had or that events will turn out for the best
c) someone or something on which hopes are centered
(Dictionary.com and Merriam-Webster)

Hope doesn't necessarily exist apart from struggle. In fact, there's usually a battle raging. What hope does is to remind us there is the possibility of something better. Hope speaks a continual, "Don't quit." It 's that ever present whisper in our hearts that says, "It's not over. You can do this." It's the proverbial Rocky music in our ears. 

And there is a greater hope as well. Romans 5 hope. Colossians 1 hope. It's the ultimate hope in my life. It's what keeps me going in this long, difficult journey.

~ Michelle

"While there is life there is hope - and while there is hope there is life." 
- E.E. Holmes

Thursday, August 8, 2013

The Long and Winding Road of Chronic Lyme Disease

I had a few better days last week.

Now, I'm not feeling well. Again.

Many of my other Lyme friends are struggling a great deal these days too. Is it the universal time for Borrelia spirochetes to divide and replicate?? Is something else flaring up? Perhaps other long standing co-infections that need attention? Or are our bodies just worn out from the constant fighting of pathogens and continual repair efforts? It's all so taxing.

Of course we know the constant state of flux we're in. This disease complex is so crazy up and down; I feel like a battered yo-yo. A yo-yo that’s been wildly flung every which way but loose for almost twenty years.

Or better yet it’s like the roller coaster ride that never lets you get off. It yanks you away through frenzied highs and lows, dips and drops, and sudden turns that thrash you about from side to side. Oh sure, it slows down ever so often but it never fully stops. Both the relief and the frustration of it all is in the downhill coasting. You're really moving. You've got momentum going for you. But soon enough, you hit the long climb back uphill. Again.

This speaks so well to the struggles of living with this disease. It can be very discouraging.

We work hard to get well, often finding something that helps for a period of time. But then it seems we find ourselves repeating this same process over and over again. And over and over again we can find ourselves back at zero.

It's this repetitive process of working so hard and long for little gain that can be so draining and disheartening. It's the constant daily doing that can leave us weary. And many of us have been "doing" for a lot of years. Treatment regimens, supportive home therapies, juicing, specialized diets, food preparation, doctors appointments, therapy appointments, ongoing research. Believe it or not, that doesn't leave much time left in the day. Working to recover from this debilitating chronic illness is a full time job. And it can be quite exhausting when you're already running on empty.

And then there are the losses that accumulate along the way. Some are big, some are small, and some fall anywhere in between. Physical losses are particularly difficult but then so are the loss of jobs, friends, livelihoods, dreams. There are different kinds of losses for different people. Nevertheless, loss is apart of this illness to some degree for all of us.

It's been my experience that not everybody can hear the truth of my struggle, which by the way, expressing my struggles doesn't mean I’ve lost hope or given up on my faith. If anything, this fight has taught me how to hold on, press in and persevere even more.

The truth is, not everybody can get in the dirt with you. Not everybody can be in it with you for the long haul. This is true for many things in life. And it's most certainly true in the long and winding road of chronic Lyme disease. But thank God for those rare and priceless jewels who can!

It's sometimes more than most people can bear. And I'm not blaming anyone for that because it's often more than we can bear a lot of times, too. Still, it can leave us feeling alone and misunderstood. The truth is this whole thing is really messy and absolutely changes everything. There is no part of life that isn't affected.

Clearly, everyone has to go on about the business of living. People have responsibilities. They have to work, go to school, pay bills, and take care of their families. And everyone should be able to relax and enjoy vacation and down time every now and then.

We want these things too. But many of us have to do them on top of being very ill, if we can even still do them at all. We want to be able to live our lives free from sickness, exhaustion, pain, debility and limitation. We want to have the health and energy to do extraordinary things and make a difference. Mostly we just want it so we can simply go about the business of living our lives too.

All of this is a truth that seldom gets fully understood by those who are on the outside looking in. I've said this many times before and I'm saying it again; no one can fully understand that which they've never fully experienced for themselves.

It is also truth that I personally believe God works in and through our circumstances; that He has His purposes and they are redemptive and restorative in nature; that He considers the many and not just the few. And that understanding His perspective and timing is important.

We should not dismiss, overlook or underestimate this about the Lord.

Still, the journey is difficult. And I don't always understand. I don't understand why so many of us, including children, suffer so much with an insidious disease that wrecks such havoc on our bodies and is so heartbreaking for our loved ones. I don't always understand why this truth is so adamantly denied, opposed and made light of. And I don't understand why some people cannot get the proper treatment they need and are deserving of. 

However, this is also where my belief in godly justice comes in. The truth cannot remain hidden forever. Justice will not always be denied. The powers that be will one day be held accountable. The whole truth will be revealed for what it really is. And justice will be duly served. One day. My prayer is for it to be soon. 

I also know we've all been pained by more loss lately in the Lyme community.

Last week, like many of you, I went on Facebook and saw that another fellow Lyme Warrior had died; a young, beautiful, beloved mother and friend to so many. I didn't personally know her but in that moment, the gravity of it all really struck me and I just sat there and wept.  

I wept for her and her daughter; for the rest of her family and friends. I wept for everyone I know that has Lyme. I wept for everyone I don't know who has Lyme. And I wept for me.

It was heartbreaking, gut wrenching and cleansing; all at the same time.

I know many of you were deeply affected as well. I could almost feel our collective grief. 

Sometimes I think only our tears can really speak the truth of our hearts. And our struggles. So let the tears fall. Let them be our voice. Let them express what our words cannot.

And let's keep on loving and supporting one another. Let's keep working to make something beautiful out of all this suffering.

With Love and Compassion,

~ Michelle

Photo Source

Saturday, August 3, 2013

Hard Science On Lyme: Trials and Tribulations of Getting Borrelia Biofilms Accepted for Publication

Dr. Alan MacDonald, MD, shares an insightful, albeit frustrating article today on the blog, Hard Science On Lyme at LymeDisease.org. It goes along with my previous post of Dr. MacDonald's video interview on the biology of Lyme disease in which he discusses many things Lyme, including the role biofilms play in chronic Borrelia infections.

I've said it before and I'll say it again, as we in the Lyme community well know, Dr. MacDonald and Dr. Eva Sapi are audaciously leading the way in establishing the solid science of Lyme borreliosis. Eventually, the powers that be will have to acknowledge the truth of what they are scientifically proving.

I can't think of a more fitting quote right now than this one by Author Schopenhauer: "All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. And third, it is accepted as being self-evident."

Thanks to LymeDisease.org for posting this article and always advocating for the truth of Lyme disease. The intro and link to the blog are below. ~ Michelle

In this guest blog, pathologist Alan MacDonald describes the struggle to publish the discovery of Borrelia biofilms and what the existence of these biofilms means for chronicity and treatment. Click here to read the full article.