This year has gone by so extremely fast. As I am sitting here writing this, it is so hard for me to come to terms with the fact that it is already October.
Where did time go?
If you have followed my blog for any amount of time, you will notice that I have been absent and haven’t posted much content during this year. This was not my intention, but in all honesty, I was having an extremely difficult time handling what has been going on in my life during the first part of the year.
I have been in this place where I had nothing to pour out to you all and really just needed to get alone with the Lord and soak in His truths.
I didn’t expect it to take almost a year for me to feel comfortable opening up my heart again through the writing process, but some seasons are longer than others, and that, I have learned, is okay.
In August of 2017, I moved off to college to pursue a degree in Intercultural Studies. After having 9 months free of episodes (where I collapse and have extreme muscle weakness in my arms and legs…among other things), I believed I was better and was ready to pursue a degree and ultimately a career in missions.
In November, my health dramatically declined, and I began having episodes every day for a week. One day, I couldn’t walk at all. The weeks following were filled with more episodes, more time off school, and ultimately, leaving school before the semester was over.
I was truly crushed. Having to leave school wrecked the confidence that I had built up over the 9 months before coming to school.
This dream I had pictured in my head shattered.
I want to say I handled it well, but I was so disappointed. I enjoyed living in community with people, being out of my comfort zone, building new relationships, and the challenges that came with independent living.
One night after the semester ended, my dad drove me back to the school to pack up my remaining items I had not yet brought home.
We took a few boxes to the truck and came back into my dorm. I sat down on this wonderfully ridiculous little white “poof” that my mother insisted I have for guests to sit on…even though it basically stayed in the middle of the dorm.
I looked up at my dad and when our eyes met, I melted into a puddle of tears.
Photo by Asdrubal luna on Unsplash
There I was; I had worked so hard to come to school here and receive a scholarship. I had worked hard physically by working out every day for almost a year before I moved to school because I wanted to have complete control over my body between episodes.
In the months leading up to school, I had worked hard to overcome my fear of the unknown and that lingering thought of “what if my body fails me again?”.
All of this hard work that I put in led to this moment; me sitting on a giant white “poof” crying in an empty dorm room. Not the moment I was hoping for.
All of this hard work that I put in led to this moment; me sitting on a giant white “poof” crying in an empty dorm room. Click To TweetThat November, I was having so many issues that my family and I were hastily trying to find a specialist that would see me last minute. I had a doctor’s appointment with a specialist at another clinic, but it was still over a month away and we were desperate.
We did find a local specialist who gave me a diagnosis: Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome, and Gastroparesis. Other terms associated with these are Dysautonomia and Autonomic Dysfunction.
I was ecstatic to receive a diagnosis. I had never met anyone or heard of anyone doing anything similar to what my body did. And I have spent hours searching the internet on multiple occasions. Whenever I got this diagnosis, I felt a sense of freedom and belonging.
I was finally not alone anymore.
Following the diagnosis, my mom brought home a pamphlet she had found online.
I sat there in the living room on the couch reading this pamphlet and I began to cry. Every symptom was mentioned. There were testimonials of others who had gone through the same thing.
For years, I have had doctors say that they thought they knew what I had and every time, they were wrong. I was hesitant to believe that doctors had found the answer, finally. But I did.
When it came time for me to go to the new specialist, I wasn’t nervous. I was honestly kind of excited because I was hoping that all the testing I was about to go through would confirm the diagnosis from the previous doctor and there would be forward motion.
I went through days of painful testing and days of intense observation in a seizure ward.
The doctors came back with a differing diagnosis; and it wasn’t at all what the previous doctor had mentioned. This new specialist said they thought I have Functional Neurological Disorder.
Functional Neurological Disorder is where patients experience neurological symptoms without any clear structural problems to the nervous system. The cause of FND is not known.
Some think that FND is as a result of psychological stress where the body cannot cope with the stress in a healthy way, so it finds avenues of releasing the stress in physical ways, however this is an outdated line of thinking as research shows that it may have deep neurological origins and that the brain does not function properly in FND patients.
According to Medical News Today, “Some studies have shown that people with FND have decreased functional connectivity in certain parts of their brains, including those parts that control the muscles and senses. This indicates the body’s lack of control over physical movement or actions”.
Before I knew it, I was being sent to a neuropsychiatrist to be evaluated for a depression or anxiety disorder.
Can I just be completely honest?
The idea of going to a neuropsychiatrist or to anyone with the word “psychiatrist” in their title had me on edge.
The thought or suggestion that this illness that I have been struggling with for seven years could be because of a psychological issue scared me.
When my appointment with the neuropsychiatrist came, my mother and I walked to what seemed like a secluded part of the hospital. It was literally hallway after hallway before we reached the psych area.
Once we got there, there was calming classical music playing, the people behind the receptionist desk seemed overly kind, and the doctor who did my intake paperwork didn’t wear a white jacket like a normal doctor. I was taken into this room with more calming music and motivational posters.
I was then taken back to see the neuropsychiatrist. In all my life, this was probably the longest, most uncomfortable 45 minutes I have ever experienced.
At the end of the session, he had concluded that I did not have a depression or anxiety disorder.
However, he did say that I was too mature for my age, that my religion has created a set of unrealistic standards, that my body language made me seem tense and guarded, that my blog was a form of digression, and that I intentionally withdrew and isolated myself (you know, all those years where I wasn’t physically able to attend school because I kept having episodes even though I loved school and wanted to go so badly).
Directly following that, I saw my neurologist again who told me that they believed that based on the consultation with the neuropsychiatrist that I did indeed have FND.
He said that they do not know much about the disorder, but to keep doing what I am doing and that hopefully, in time, I will get better.
Ultimately, I walked away confused and crying in the parking lot.
I felt disappointed, let down, and extremely unqualified for sharing the Gospel with anyone.
Photo by Yuris Alhumaydy on Unsplash
How could I be adequate if I have what others could perceive as a psychological disorder? Who would listen? Why should I continue doing something if it could be a form of digression? How many more years of declining health was I supposed to be “doing what I’m doing” before I stop collapsing to the point that is doesn’t disrupt my entire life?
My experience with this specialist broke my heart.
And, as hard as it is to admit it, my experience there shattered the view I had of myself. I had always thought of myself as tough, resilient, good at coping with stress, good at not letting my episodes get in the way of the things I wanted to accomplished, and good at making the most out of life.
I love life.
And, I didn’t see myself that way anymore. I was prepared for the Dysautonomia diagnosis. I was prepared for them to tell me I had a muscular disorder or one of the other rare diseases previous doctors thought I may have. But I wasn’t prepared for this.
It was so hard for me to talk to others about it.
I was afraid people would look it up and make assumptions about me. So many people from church would come up and ask me about what we found out. And I felt so confused by the answer, especially with specialists saying different things.
The only way I could respond was that they didn’t come up with anything new. Which was true. Their solution was for me to keep doing what I am doing and hopefully I will get better with time.
I got home, and my heart needed to heal.
Once home, I needed to regroup and prayerfully navigate through what I had just experienced. I felt defeated, unqualified, and self-conscious. It took me days to talk to my family about what the doctors came to.
Even though I had other doctors emphatically disagreeing with this sepcialist’s diagnosis, I still felt shook. I found myself with more questions than answers. The words of the neuropsychiatrist haunted me.
A month or so later, I sat down and opened up my Bible to read.
That day’s reading was in Isaiah 61.
“The Spirit of the Lord GOD is upon me, because the LORD has anointed me to bring good news to the poor, he has sent me to bind up the broken-hearted, to proclaim liberty to the captives, and the opening of the prison to those who are bound…”
I love how God gives us exactly what we need when we need it.
Read over those verses again.
The only qualifiers for bringing the good news, binding up the broken, and proclaiming liberty to the captives is the anointing of the Spirit of God. No more. No less. He is sufficient.
The only qualifiers for bringing the good news, binding up the broken, and proclaiming liberty to the captives is the anointing of the Spirit of God. No more. No less. He is sufficient.Click To TweetThis did a number on my soul, let me tell ya.
I realized that I was letting the words of someone I had only known for 45 minutes dictate my calling and put a muzzle on the mouth of the Holy Spirit in me that desires to speak through me.
I let this person steal the voice that Jesus intends for me to use victoriously and with authority!
He is what qualifies me for His calling on my life!
Having a brain that functions properly isn’t a qualifier. Perfect mental health is not a qualifier. Having a body free of disease is not an qualifier. A degree is not a qualifier. Being able to speak well is not a qualifier (Moses would agree).
If you are a child of God, The Spirit of the Lord GOD is upon you.
There is not an ounce of our own strength or a portion of our own credentials that can add to what He is already completely capable of doing in and through us. Click To TweetWhat a completely humbling and liberating truth to grasp.
Photo by Yuris Alhumaydy on Unsplash
My story is still raw for me. It is uncomfortable and it stirs up a lot of emotion. But I chose to share it will you today because there are so many out there that feel unqualified for God’s calling on their life, defeated in their walk, or voiceless.
Maybe that’s you.
Maybe you feel like your past disqualifies you from being an effective testimony. Or maybe feel like you are too physically weak to make an impact on the lives of others. Maybe you feel like you have a story to tell but don’t think others will listen.
Does everyone in your family say you are incapable of setting out to accomplish your goals and do what you believe the Lord is leading you to? Maybe you want to love on others but are afraid of possible rejection. Has the trauma and pain of abuse in the past left you feeling voiceless?
I don’t know.
But let me encourage you.
If you are His son or His daughter, the King of all kings lives inside of you. The Creator of heaven and earth, the one who gives names to every star and holds them in perfect balance breathes breath into your lungs. In Him, you are more than a conqueror.
In Him, you will find all the strength you could ever need. Rest in the fullness of who He is. Your Abba, Father has this. He is more than capable.
P.S. I have since started a treatment plan to help manage my POTS, returned to university to study Psychology with a minor in Missions and Evangelism, and am doing well right now. Each day has its own challenges, but I am learning to live in my context and utilize the resources around me to help me thrive! Thank you every one for your prayers!
P.P.S. I am so excited to have begun the process to get a service dog! My service dog will be able to detect my episodes before they occur and also help me physically once an episode happens. If you would like to read more about my service dog campaign, you can do so HERE.
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