Posts Tagged ‘PNES’

613-Through the Looking Glass

Posted: January 9, 2019 by Ty in Spirituality
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613 is my number, what is yours?

It is amazing the conversations one has as a parent, and then the journey it causes you to reflect upon. Before May 2016 sitting in an ER I never thought I would be here. See, growing up and throughout my life I admit to being socially awkward (to be kind), but there was something that always was wonderful, my mind. When it came to numbers it was something like Charlie on Numbers that the solution would come to me, but has no real idea what took me from problem to solution. My everyday mind would be able to focus on 3 or 4 tasks in front of me, while crunching solutions and dreams/plans for multitudes of other things (one of the main reasons I never took up this thing called driving).

It is the blessing of this mind, with my heart for changing the world that allowed the drive in school (and the multiple degrees earned and given honourary); building programs; running for office; editing and writing; book publishing; teaching; outreach work; mentoring; life coaching; spiritual direction; public speaking; pulpit supply; and the list can go on in my short life I had packed in multiple life times. Standing in the darkness and walking with those in the midst so they could come into their light. Discover who they truly were; teaching and facilitating others in discovering their passions and ways to make a living at it. I believe my life showed that you can chase dreams, and still hold true to your core values, not having to surrender who you are to make a difference in this world. At one point I looked back on my time in ministry and realized I had the opportunity to speak into nearly 1,000 young lives for the better.

But it started to shift in May and then October 2016 in the ER with weird brain activity, memory loss, chest pains and left-hand tremors. But I was told I was normal and fine, so carry on at discharge, after a day or two at home back at it. Back at the work of walking with folks to create home and community.

In the later part of 2017 as summer approached, professional and personal griefs/stressors were there. Waying on one’s spirit. I felt tired, and my brain was foggy. Like I had taught so many though, back to the daily practice, self-care, seeking out those who can aid you in debrief and carry forward, keep yourself healthy. And why wouldn’t I be tired? It was a phase, been there done that. My vocabulary, and understanding of some basic concepts began to fail me. Again, I looked back on what was happening with those in personal and professional life passing away, assumed it was a grief cycle (my son’s friend’s were passing away, always hard).

But then my birthday hit and the game changed.

Seizures (Grand Mal and absent), multiple in rapid succession. Lost memory and time. Not only in the now, but lost memories, I could not recall things. It kept happening, I became the ER’s daily flier if you will…and oh so cold, my body had gone hypothermic, in retrospect to protect my heart. Medical science couldn’t answer the question. Weird things being vomited out. Tests were toss ups.

But when the seizures hit, and I would come back so would the pain. The life of being a light in the darkness, but only the darkness would come back. Decades of being in the pain, looking back and having my mind lie to me saying that I was a failure, had not made a difference. My memories that would reboot, it was like an old DOS computer with dust on the floppy, the self-care wouldn’t come with it. My healing and growing of scar tissue was gone, it was rapid succession of the pain that cut to the very core of who I was. I tried to work through, my agency was wonderful in their support.

But I was not me. My beautiful gift, my mind, was failing. Things that I knew by rote, and was simple neurological muscle memory were gone, fog was constant, stabbing pains, tremoring arm, in ability to sleep, hypothermic and I won’t share how when I went down finally for health reasons the days of weird chemicals I had been exposed to expelling from my body (oh and the constant daily seizures, at one point almost 40 a day). Tests of the blood, body and brain, but the flashbacks persisted.

It wasn’t something that was expected. I had learned to take care of myself, to rely on supports, to keep healthy, to use vacation time and to chase passions. This was against the narrative. But it persisted. Advancing from basic neurology to complex, in hospital observational stays, and all the epileptoligists/neurologists looking at my brain scans and medical files to reach a decision on what was happening. Finally, in the last month or two having confirmed diagnosis, PTSD-PNES, and now due to the Third Way boondoggle that was Klein’s legacy, I wait for the aid to cure and move forward. In the meantime the seizures are not epileptic but bring all the fears of those types of seizures with them everything from falls to sudden death, with no medications that can be prescribed to control them.

With each seizure my number reminds me of where I have walked. 613 that is 613 in my life of family, friends, children, parishners, and clients I was unable to do more than journey with to the final transition to the next life. Most I was present for last rites or the passing or performed the celebration of life, if not all of it. In the travels I continue to use that which some may say is fruitless. Yet I persist. I pay the price for the persistence to keep going, I am not as good as I used to be, not even close…but I keep trying, working on myself while I wait.

This time I feel like Alice having stepped through the looking glass, or Kirk into the Mirror Universe. I have seen what the darkness unchecked has done to my soul. I know what the light is. I struggle to believe in myself once more for with each reboot I still have to work through the lies my heart tells me that I am a failure, for even if it is a simple spark I need to hold to it…that I make a difference simply by being.

What is your number?

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We now enter a writing that may or may not have been written by Peter. For those that assume a Petrine authorship it was probably written around 64 CE before his execution, but there is a point on its leaning on Jude, which could put the writing anywhere’s from 64 CE to 150 CE in the city of Rome. It opens with this concept of communal discernment of calling.

 His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to[c] his own glory and excellence,[d] by which he has granted to us his precious and very great promises, so that through them you may become partakers of the divine nature, having escaped from the corruption that is in the world because of sinful desire. For this very reason, make every effort to supplement your faith with virtue,[e] and virtue with knowledge, and knowledge with self-control, and self-control with steadfastness, and steadfastness with godliness, and godliness with brotherly affection, and brotherly affection with love. For if these qualities[f] are yours and are increasing, they keep you from being ineffective or unfruitful in the knowledge of our Lord Jesus Christ. For whoever lacks these qualities is so nearsighted that he is blind, having forgotten that he was cleansed from his former sins. 10 Therefore, brothers,[g] be all the more diligent to confirm your calling and election, for if you practice these qualities you will never fall. 11 For in this way there will be richly provided for you an entrance into the eternal kingdom of our Lord and Savior Jesus Christ.

12 Therefore I intend always to remind you of these qualities, though you know them and are established in the truth that you have. 13 I think it right, as long as I am in this body,[h] to stir you up by way of reminder,14 since I know that the putting off of my body will be soon, as our Lord Jesus Christ made clear to me. 15 And I will make every effort so that after my departure you may be able at any time to recall these things.

-Epistle of 2 Peter 1:3-15 (English Standard Version)

Discernment and confirmation of path. A vocational path laid out for you. What we call today a life mission statement. This is more though of living out a way of life, and the curves and swerves it may take you on in the journey. It is a life though that can be used to lead individuals to compassion fatigue or burnout. For it becomes resting upon the “if you had more faith in the conviction that what you are doing is for the Kingdom it would not be draining.” It is a statement, or ones like it, “this is just how church is you get used to the bullies.” that remove the human element of service. The key piece being not that we are meant to do everything that needs to be done, but we are called into the vocation that is meant to bring us most contentment. Yes, we may need to take other paying work while we pursue a passion, but that in itself does not mean we are meant to set aside who we are created to be, and what we are created to do…simply because according to a hierarchy of need there is an assumption that we will fit here- i.e. women in the kitchen or young women in the nursery, men doing maintenance etc.

Then there is also the other trap though of following one’s vocational call and becoming a workaholic. Since it is an acceptable addiction within our province it can be overlooked easily by support networks. It is simply one driven or trying to make a difference. Yet it too can lead to compassion fatigue, burnout, or the drive, even with self care, eventually leading to an internalized trauma and crash. It can happen, it may not happen, but this is where strong supports come into play, and knowing that even with appropriate self-care, soul work and community one can still crash.

I reflect back on my call. It is a simple one of making my own corner a little bit better. I had and have quite a few passions as those who have been readers throughout my career can attest. I ran parallel careers of writer, speaker, teacher-instructor, spiritual director-coach, youth and young adult pastor, chaplain, housing manager, political policy writer, volunteer, shelter worker, vocational coach for persons with disabilities, student, dad, husband, and political candidate. For some it looks like a whirlwind, for me it was the pace of life, and I was working within the care of self. Then something neurologically happened in a heart whirlwind where some supports crumbled, and… I crashed… it is a long road back, but part of the long road back is the message by this writer.

Remember who you are.

It can literally be a battle through the convulsions and flashbacks. The crushing emotional lie of never having made a difference. Of being worthless. But it is a battle worth fighting when I look upon my kids and wife. Some days there may be a brief glimmer not to wake up, but it is ever only so slight. For I am needed. I am me.

Remember who I am.

For we did not follow cleverly devised myths when we made known to you the power and coming of our Lord Jesus Christ, but we were eyewitnesses of his majesty. 17 For when he received honor and glory from God the Father, and the voice was borne to him by the Majestic Glory, “This is my beloved Son,[i] with whom I am well pleased,” 18 we ourselves heard this very voice borne from heaven, for we were with him on the holy mountain. 19 And we have the prophetic word more fully confirmed, to which you will do well to pay attention as to a lamp shining in a dark place, until the day dawns and the morning star rises in your hearts, 20 knowing this first of all, that no prophecy of Scripture comes from someone’s own interpretation. 21 For no prophecy was ever produced by the will of man, but men spoke from God as they were carried along by the Holy Spirit.

-Epistle of 2 Peter 1:16-21 (ESV)

Just like entering into the passage when Jesus gave the keys to Peter, you should replace Peter’s name with yours to remind yourself of the Original Blessing. That it is you who has been given the keys to the Kingdom within to live outwards and in conjunction with. Linked in Holy Love.

So to at the baptism when the dove game down as verse 17-18 here attest, you are the child who is beloved. Remember that, you are beloved for being simply who you are.

Remember who you are.

And be loved within.