This has been on the wall at the doctor’s office for as long as we have been going there.
Feeling “inadequate” could not begin to describe how I felt going into this appointment Monday. Beyond helpless; smaller than small; perhaps even completely depleted and defeated would have hit the mark more accurately. Heads swimming, lost in worry, face to ground. Yep, there. Face to the ground. Lord, one. More. Cross.
Those who know us well, know our Kevin has suffered from depression for years now. Over the past few years a list of physical ailments were added to his resume. Tests. Doctors. Medication after medication. More tests. Doctors puzzled, the downward momentum unchecked. More medications, more tests. To no avail. Watching someone dear slipping further and further away. Nothing working. Hope fading.
I suppose it is only natural that people’s spontaneous remarks in the realm of, “Well when you look at all your family has going on, with all those difficulties, of course he is the way he is…….” (As if my intellect was faulty for not having already come to the same enlightened conclusion)
Wait. Other people can handle their crosses better? Because we have more difficulties than many other families, it’s only natural this should be the expected outcome? Seriously? My mind finally gave in, that must be the explanation. Giving up all hope became a given, my mind and heart began the arduous work of surrender.
How much I have been dragged close to despair with such hurtful observations.
And suddenly, an answer. A real answer. Just last week, after years of searching. A real physical reason for decline.
The real kicker?
It isn’t just Kevin who is sick.
After a hunch based on helping our family through so many stormy seas with our special peeps, a good doctor recommended testing our family. For Lyme disease. To start, out of the whole family, five of us were tested.
Even the doctor was surprised.
It has been a storm unlike all the others. The more I read about it, the more devastated I feel. Frightened. Helpless. So much they just don’t know. So much about Lyme is not being acknowledged, even denied. What will it mean for our family? I can’t handle yet another medical hurricane.
Yes, I know. No choice. Just helpless. Small.
Monday, just a few days after getting the baffling news of test results, I drove to a doctor’s appointment. There is no way to describe the heartache of feeling so low, pretty much devastated with all of it; trying to absorb and accept, the diagnosis. Knowing we will need to have all our other beloved peeps tested. I was living between the tension of needing to read everything I could get my hands on; and trying to pretend this couldn’t possibly be real.
God, what are You thinking? Haven’t we had enough? This could have such immense consequences for our children, their health, their families, their children….
If I let my thoughts run, even breathing became difficult. God, if you are all knowing, You should know it is a mistake to think we can do this. “Mother Mary, I am perishing, help me,” became a constant prayer.
It’s funny how little you know about something until it happens to you. I have zero interest in becoming a Lyme Disease expert. I think God intends for us to be Lyme PhD’s.
How did this get missed? For years? We have been to sooooo many doctors over these past few years with Kevin. How did it get SO missed?
God’s Will. Be still.
It is what it is. I have yelled at God quite a bit these past days all a blur. Feeling anger, sorrow, and then more sorrow. I have run away from it all, hopping on a train to the city with Bernadette, determined to fight all the grief with experiences of joy. And it waits. It is there. There is no waking from a bad dream as I wish I could.
The day before we received our results, this article was published…
And dang it, why did Sr Marie have to say it just days before the devastating news, “When God gives us suffering, we should not ask why, instead we should ask what for.”
There is the reassurance in my heart that we partially understand the “what for”. We will not fully know the answer until we die. But, in all the darkness that seems to envelope us, there is the little glimmer of light. God does have a reason.
So I pray for the grace to surrender.
I think of the scene in the movie of “Mother Teresa”. She is sitting on the floor in front of the Tabernacle, talking to Jesus in the Blessed Sacrament (suffering from so much, with no apparent understanding of why God wanted her to suffer all these things). “Lord, if it pleases you…..”
Offering up her suffering as a gift to God. This was how she dealt with it. So simple. But I am no Mother Teresa, so the inner struggle is fierce.
But none of the above is the reason I am writing this post.
I am writing because as I read more and more about Lyme disease, I am alarmed by one fact. Many, if not most, doctors do not know much about it. It is strangely very, very, VERY frequently MISdiagnosed. Kevin isn’t alone; I don’t really have Fibromyalgia…..we both have Lyme. If you, or someone you love deals with depression, Lupus, Fibromyalgia, Arthritis, MS, sleep disturbance, aching joints, lethargy, headaches, Alzheimers symptoms, ADHD, memory issues, mood and/or anger outbursts, balance problems, or any Auto Immune (check the Mayo Clinic Lyme page) issues at all……get PROPER screening for Lyme Disease with the Western Blot and ELISA. And it’s very important to find a Lyme literate physician.
For more information, brochures and even an online screening checklist go to lymedisease.org
As a Mom, it’s always been important that our kids don’t become complainers, so all these months when we’ve been reassuring our youngest, Bernadette, that her aching knees were “growing pains”, we could never, in a million, not in a billion years, have ever guessed it was something so sinister as Lyme disease. Only now are we discovering that in pediatric cases, Lyme often begins with joint pain (if there was no obvious tick bite and rash).
Did you know that more than 75% of Lyme patients never had an obvious tick bite or rash? Neither did we. After all, Lyme was something we thought was an Eastern Coast disease…..
Back to that sign in the doctor’s office. How often on the rough days do I remind the children, “You are a child of God”. I sure didn’t feel that way that day as I drove to that appointment. I read Nelson Mandella’s words as I have more than a few times. “We were born to manifest the glory of God that is within us.”
That day it was as if any “glory” surely was NOT within me.
Yet reading it reminded me of something my dear friend Jeannie always used to say, “God can bring good out of everything. We must hold on to that.”
Remembering that brought peace to my heart. I know it will be a long time to process this new news, and most likely it will be a long and winding journey. I pray God will use it for good, and only He can use it for His glory.
Pray for us, friends. Pray for us.