It
was February of 2006, eleven years ago.
I was driving home from visiting family.
A trip that should have taken me 8 hours ended up taking 14 hours to get
home. I grew weaker mile by mile. I had
no idea that I was gradually losing control of the muscles in my eyes, mouth,
and neck.
As
I drove down the highway, not only was I getting weaker, but I also began
having double vision. It was a blurry
mess attempting to discern where the road might be found in the midst of the busy
weekend traffic. If that wasn’t enough
trouble, my eye lids started getting heavy threatening to close and my neck
started weakening making it difficult for me to hold my head up. I felt helpless. Nobody was with me on this trip, so I was all
alone dealing with this until I could get home.
When
I finally made it home, I dropped into my bed in complete exhaustion. When morning arrived I thought I would wake
up rested, but was shocked to discover that I could barely move at all. In fact, I needed assistance to get out of my
own bed. Something was seriously wrong,
but I didn’t know what!!!
My
husband jumped into high gear right away when he could see I wasn’t getting
better. He took care of our boys (who
were in Kindergarten and first grade), the house, made all meals, and worked a
night job so I wouldn’t have to worry about the boys while he was gone. He was amazing!
In
the meanwhile we visited doctors; had tests done, and met with specialists… attempting
to figure out what was making me so sick.
The double vision continued. My
speech slurred as I spoke. It was difficult to both understand and hear me when
I spoke because my voice weakened as the day went on to a faint whisper. I had
trouble swallowing. I could barely
eat. I choked on solid food… even on water
at times.
My
husband got creative in feeding me. He concocted
special shakes for me to drink. He
filled them with whatever he could find in the fridge to blend up that might help
me gain weight and feel stronger. I was
dropping weight quickly.
Mini Marathon |
After three months they finally diagnosed me with
an autoimmune disease called Myasthenia Gravis. It affects everyone
differently and mine was a worst-case scenario.
MG weakens the muscles all over your body. The best way I can describe it is like this…
it’s similar to MS in the way it affects the muscles, however it doesn’t get
progressively worse. It also has ups and
downs, remissions and flare ups kind of like Fibromyalgia. This is a disease
that is not necessarily life threatening, but definitely life altering.
At
its best in a sense of remission I was able to walk a mini marathon and
complete it. At its worst I was
bedridden during one flare up for a whole year struggling to talk, eat, walk,
and care for myself. I could only get
out of bed for four hours a day and I lost 75 pounds in 6 months. I struggled to gain weight. I dropped under 100 pounds quickly to just
skin and bones. It was a scary season.
I cannot talk about being sick without sharing my
inner struggles with it all. I had
moments of doubt, fear, despair, and disappointment. When I was the sickest, my bedroom became the
place where I lived most of the time. To
say I had a lot of down time is an understatement. I had time to… think, worry, get lonely, wonder where God was, and be frustrated.
During
a very dark season, God and I had a conversation. He was there in the quiet of my
thoughts. He and I talked often, but
this time was different. If I have ever
felt close to death this was it. I felt
useless and a burden to my family… both physically and financially. I couldn’t help with anything… homework with
the boys, making their lunches, helping get pj’s on before bed, or anything
around the house. I had absolutely NO
energy. I felt helpless and hopeless as a mom.
When
I looked into my husband’s eyes I saw sadness... helplessness. No matter how hard he tried to hide it, I
could see worry and a hint of fear behind his smile. He was filling the roles of both mom and dad
with the boys. I could tell it was
taking its toll on him. He did his best
to keep me involved with the boys regardless of my limitations. Each night they would come see me before bed. Our time was filled with cuddles as they told
me about their day. Their giggles, hugs,
and kisses would make my heart smile.
Despite
my love for my family, I struggled to watch them hurt anymore because of
me. My husband looked so tired. I felt like the kids were missing out on so
much because everyone was so concerned about me. It wasn’t fair!
“It
would be better…” I thought.
“…if God just took me home.”
I didn’t want my family to suffer any longer. I had put them through so much already. I begged for God to take me. I had settled things in my spirit and I was
ready.
I remember sharing with my husband one night that
I was done. I told him… “I have no
more energy to fight.” He was very
upset. He said, “If nothing else, you
need to FIGHT for your family… for your boys!
They would be devastated if anything happened to you.” I could tell he was on the brink of
tears.
In that moment something broke inside of me and
urged me to fight. I sensed God’s
presence wrapping around me filling me with His peace. I was not alone. He would be fighting with me too. I was determined to hang on a little bit
longer, but I felt so dead… inside and out.
I was at the place where I realized that I couldn’t
fix it, my husband couldn’t fix it, my doctor couldn’t fix it,
and the prayer warriors at my church couldn’t fix it. It came down to me and Jesus. He was all that I had left!
I had to learn to trust Him completely no matter what happened.
I could have walked AWAY from God during this season, but instead I
chose to run TO Him. God was REAL to
me! He had always taken care of me in
the past, why should now be any different.
I NEEDED to trust Him! Hope was ignited
within me.
It wasn’t long after that dark night that I got a
new doctor who was appalled by my condition.
Within weeks he had me on a series of treatments that helped me become
90% better than I had been the previous year.
I guess God wasn’t finished writing my story. With this new doctor my health improved and
with it doors opened for me to share my story with others.
I
have faced many hurdles with my health over the years. We have tried various treatments to manage my
condition. Some worked for a while and
then eventually all the symptoms would come back again. It’s an ongoing battle of ups and downs. Needless to say it hasn’t been easy for me or
my family. With medication and a lot of
prayer, I have moved forward.
Over
the years I have prayed that none of my time struggling with this dreaded
disease would ever be wasted. When I
think about all the time I spent stuck in my house, my prison of sorts, it
troubles me. Who has a whole year of
their life to throw away? I didn’t think
I did! I want God to redeem every moment
of waiting, worrying, and wondering. I
pray my story inspires others to keep pushing forward trusting God when their difficulties
come.
God
never ceases to amaze me at how He uses my story as a tool to minister to
others. He has taken me behind doors to
places I never thought I would ever go.
I have met people I never thought I would ever encounter. Divine appointments and open doors have been
in abundance as I have trusted Him with the details of my life. My story of pushing through and trusting God
in good times and bad has echoed God’s love to… Nurses, doctors, medical
professionals, the old, the young and hurting.
I’ve found that it’s in the messy
moments of life that people are drawn to Christ in us the MOST! God knows my life has been beyond messy… for
sure!
I
haven’t been completely healed of this yet, but I trust Him! My faith has grown as I have learned to surrender and believe God for
impossible things! There is one truth
that has settled deep into my spirit from that dark season of my life. When I came to the end of myself and realized
that nobody else could help me, I discovered this…
“When
you have nothing left BUT God
you
find out quickly that He is ALL you really need!”
If
my messy, faith walk of trusting God with this sickness can help inspire others
to trust Him more, then I surrender. He
is the writer of my story and my inspiration for living. May my life in good times and bad reflect Him
well!
Challenge:
Have you been there before friend? …in that place you don’t really want to
be. Have you ever felt like something
was WASTED in your life? I felt like my
whole year was wasted. What could I
have done during that time if I had the chance? Only God knows.
Wasted! You
can’t help but feel defeated when you think about it. My “wasted” relates to days spent being
sick. For you it may be something else
entirely. I have a question for you
friend… whatever “wasted” is for you, will you trust Him? Will you surrender the reigns of your life
over to God and trust Him in good times and bad? He is faithful friend. I promise.
Prayer:
God,
I pray you would be with my friends today… those who are struggling with
trusting you with the details of their lives and those who are doing their best
to push through. Help their faith roots
to grow deep as they learn to surrender to you.
Help them to cling to the good, focus on the positive, and see the
opportunity for a miracle to happen in every situation. I pray all fear would be diminished as they
step out in faith believing you for impossible things. Instead of running AWAY from you when facing
difficulties, I pray they would run TO you.
Be their greatest source of strength today. Shine your light upon their life in such a
way that others are drawn to you in them.
Thank you God that you aren’t finished writing our story… The best is
yet to come! We love you.
Living
to leave a legacy,
Julie
P.S. If you would like to see an abbreviated video version of my story, you can check it out at the link below. Thanks for reading!
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