Sunday, July 9, 2017

Just a Parkie on a plane

It doesn't surprise me that I decided to try to write frequently and in a blog space on the third 'stoking the fire' retreat. This is the third year in a row that I will attend this retreat and all of them have come at times I needed them. 

My family is Quaker, a religion I kept up with in adulthood. Its always been a kind of peculiar thing about me, my faith. I dont express it outwardly at all really, and the last thing on earth I would ever want to do is push any kind of religion or spirituality on anyone. I wouldn't even usually include it in a blog post if this particular event were not a massive part of my story with Parkinson's. Its a part of it because of the events leading up to my first DBS surgery. 

Flash back to two years ago, June of 2015. I had completed my third year of college, sort of. That year had spelled out many changes for me. Once I was perhaps the most motivated student in the department, I was an overachiever to the extreme, taking senior classes as a sophomore. Junior year I came back from my summer internship in Baltimore, Maryland at the world renown Institute of Human Virology, I started the year taking three intensive science courses and doing well in all of them. October came again (the eventful Octobers in my life is an entirely different blog post) and I developed Levodopa Induced Dyskinesia (LID). LID was the beginning of a wild downhill spiral that my body found itself on, ending in DBS surgery 8 months later.  Don't get me wrong, my PD never behaved itself, ever. But it was managed. The state I ended up in was almost unrecognizable from how I was functioning just a few months prior. The overachiever ended up barely able to handle 12 easy units. Stage 4 Parkinson's is a beast. But that is a blog post for another day. 

Now that you have a little background into the months prior, I want to take it back to the very first Stoking the Fire retreat, which I will call STF 1 from here on out. 

It was about a week and a half before I was going to have brain surgery. While I was wide awake, they were going to drill a cage into my head, drill holes in my skull and stick long electrodes into the deep regions of my brain, in the hopes of keeping me alive longer and giving me back some of the functions I had lost. 
I don't care how sick I was, I definitely needed it, and I was so ready for it, but there is no way any human could possibly find peace in that position. I was cool and collected, but still my soul stirred. I had to make peace with a lot of things before I was ready for that surgery. I did not realize just how broken I was until I arrived in Ohio at STF 1. 
Back it up a few weeks. The month of May was hectic. My surgery was June 1. The last week of April I got approved for DBS, met my rockstar of a neurosurgeon, and found out that there was a cancellation and that my surgery would be June 1st. Everyone agreed we couldn't wait much longer, I scared everyone including the doctors, so I was offered the cancellation spot immediately. At the same time my aunt was dying, my mother and I flew to Hawaii the first week of May to say goodbye. My mom's side of my family is Korean, and they all immigrated to Hawaii when she was ten. Everyone stayed on the island with the exception of my mom. Very few of them really understood how bad I had gotten. In fact, they were very surprised to learn I needed brain surgery. Seeing me was a shock to all of them.  

Saying goodbye to my Aunt Sandy was hard. She fought a good fight against Metastatic Breast Cancer. She taught me a lot about how to deal with a life changing illness. The hardest part was probably watching her teenage daughters have to face the reality of life without their mother. She told me to fight, and that gave me a little bit more confidence that I could face brain surgery. We came home from Hawaii and I slept most of the month. I think the other hidden blessing of Hawaii was that I shared the guest house at my Uncle's with my mom. For 24 hours a day she had to live with me. She had to see violent spasms warp my body in the middle of the night. She had to face it head on, and I think that made her more confident that I had made the right choice to have DBS. Technically, DBS is an elective procedure, but after a week of living with me, she understood that there was no choice for me. It was do it now or die. 

Fast forward a few weeks and its my pre-op day. We met with Dr. Ananda, my epic neurosurgeon, who was incredible. During my procedure he said to me 'you know I put these in people all of the time but I don't really know how they work'. Knowing I was a chemist he asked me the theory behind DBS. He knew I would be totally comfortable reciting theory, talking about depolarization and voltage potentials. He knew exactly how to calm down the science oriented girl on the OR table who's head he was drilling into. While he worked and I went through the procedure in my head, it wasn't my head he was cutting open, it was someone else's. I am likely the only patient who ever told him 'and now you are peeling back my meninges'. He reacted with 'how on earth do you know that?' 
'I read the technical manual' 

I keep getting distracted here writing this. There is just so much to say. But lets take it back to the pre-op. 
Anyone who has ever had major surgery can tell you that pre-ops are weird. Surreal even. The two main goals of a pre-op are to make sure that the patient is healthy enough to have surgery and that the patient knows what they are getting themselves into. So I met with Dr. Ananda and an anesthesiologist and we went through the procedure. I was ready, in my mind this was just dotting all of the i's and crossing all the t's. I had labs drawn, I had my heart looked at, xrays, and lastly an MRI. By the way, all of these were in different buildings, of course. A super amount of fun when you have stage 4 Parkinson's and getting anywhere is a challenge. For my MRI, they had to drug me. Try getting anyone with late stage PD to lay still for half an hour, and to top that off, I have sensory issues and MRIs are seriously loud. So they drugged me, i had the scan, and then I went home and slept for the next seven hours. 

My plane left that night, and how I even got to LAX? I don't remember. All I know was that it felt like I was being pulled there, somehow no matter how crappy I felt I was getting on a plane. I wasn't alone, I was travelling with church friends there, one of whom was born a few months after I was, we had been friends since before we could talk. She helped me get through the airport and somehow I managed to travel from LA to Ohio overnight. 

We got there in the morning, and if you know anything about Parkinson's, you know about our lovely friend Insomnia. I was the girl who could sleep for 16 hours and still be tired, except for when I actually needed to sleep, when I needed it, you couldn't knock me out with four benadryls and some klonopin thrown in for good measure. 
When we finally arrived at the grounds of the retreat center it was morning and everyone went to nap before the session in the evening. I of course was filled with thoughts about anything and everything there ever was. In the height of my insomnia sometimes I would fall asleep at 6 am, and wake up a few hours later with 50 tabs open on my phone's browser, all about science usually, being curious about one thing that lead to another question, a clickbait of journal articles tab after tab. 

But I couldn't stop, and by the time we started that evening I was exhausted but alive, refreshed in a way. I knew I was where I was supposed to be, that this retreat would help me figure out whatever it was that I needed to figure out before they were going to cut my head open. 

The opening session started with a question. 
"What do you want to have done when you die?"
Or something to that effect, I don't remember the wording of the question, I remember the intense feeling it provoked.

They just asked someone about to have brain surgery what they wanted to have done when they died. To real, guys, too real. 

When it came to me, I felt overwhelmed but not in a bad way. I was almost in tears. I said I wanted to have been open in my life, to have been able to go where I was led, to follow the leadings that stirred my soul. Call me new-age ish but that is what I try to do, to this day. To do what I am supposed to do. Not do what I am told by others or by society but to do what I feel so deeply, what calls my name, the kind of things that I feel like I was put here for, with all of this baggage. Still working on it, if you were wondering where that got me, as obviously I am still alive. Still working on it. 

The next thing that evening was to leave your baggage. Here I am sitting, wrestling with my notion of a higher power (near death experiences seem to do that to you). I'm here yelling in my head, really? Baggage? I have tons of that! I am a few months shy of 21. I cant even drink legally, and I have had Parkinson's for 6 years. I was 14 when I first got sick. At 20, I was barely an adult living with the end stages of an old person's disease. It felt unreal, unfair to ask me to leave my baggage behind. 
But if I am really listening, really following some kind of leading, of course I had to leave my baggage behind. But I wasn't going to do it until I had aired out my little tantrum in my head about it, of course. 

I would like to think that so much of what happened at STF 1 was there for me exactly when I needed it. We divided into focus groups, we had the main sessions and then we had our little groups. My group was particularly awesome, just a really amazing bunch of people who touched my life so deeply. We did a few different things, discernment and intercessory prayer. Discernment was first. I wanted to discern where to go with my career. So much of me was closed off to the idea of ever being involved with healthcare. I worried about my ability to separate myself. I hid in my textbooks. I felt like my experiences living with my disease were pulling me out of theory, pushing me into the center of wanting to change healthcare. At the time I thought maybe I wanted to be a physician. At this point in my life, the same voices calling me that way led me down a different road, to be a voice in health care in a different way, to pursue pharmacology and advocacy. But the actual leading isn't what was important, what mattered was changing my ways, to stop making the comfortable choices, to stop doing what I wanted and instead to follow where I am led. 

Now this whole piece has had a religious undertone, and that is something I want to pause and clarify/explain. I am not comfortable expressing outward religion at all really, often I say 'sending good thoughts' instead of 'praying for you'. Ultimately I feel as the two are really one in the same. What is a prayer if not believing with your whole self and sending your best to the person intended. I truly believe that no matter what your spiritual preference is, be it Christian, Muslim, Jewish, Buddhist, atheist, etc. that any prayer or positive thought can't hurt. If anything I feel them surrounding me, my community has been absolutely vital in my healing, I feel that positive energy and it lifts me up. Personally, I choose not to know. I feel it in my soul that some higher power created the world. I believe in the teachings of Quakerism and choose to live my life based on the testimonies of justice and equality, peace and simplicity. I accept that there are things I don't have a capability to express. Science is simply us finding ways to describe the world with things we know, equations, theories. You can never know where a particle is and how fast it moves at the same time, because our definitions of math and science cannot produce both. That doesn't mean whatever created it doesn't know. Maybe we as humans simply cannot and will not know everything. I know that I feel recharged by my spiritual practice and meditation. I accept that I don't have to have all the answers. I accept that I can trust what I feel in my soul, and that living a good life now and making the world a better place both internally and externally is a better use of my time than trying to find answers I will never be able to verify with a test. 

But before STF 1, I had stopped going to Quaker meeting on Sundays. I stopped because it hurt. It really hurt to open up, I was not ready, I did not want to listen to any leading, I just was surviving. Nothing about that time was in any was nourishing to me, I was simply getting by day by day. I knew if I went to church I would be faced with the reality of my life and the pain that I felt deep within so I protected myself. Here I was at this retreat and I had to face it head on. 

I was genuinely terrified, but I was surrounded by such love, especially our small group, that I wasn't afraid anymore. I opened up my heart in the most vulnerable way and I was only loved and protected. I was able to being healing my soul. 

DBS surgery saved my life, but no one tells you just how difficult the recovery is going to be. No one tells you that you wake up from anesthesia and feel like you hit rock bottom. The lidocane wears off and its you and the worst pain you will ever experience. In that moment you realize you have to build everything from the ground up. It takes thousands of hours of exercise to rehabilitate a body stuck in turmoil for all of those years, and even longer to begin to unravel a life where you are finally free from the mess that is late stage PD--for now that is. You have to learn to be okay with the fact that it just gave you your mobility back but it didn't fix it all, your neurons are still degenerating, and that someday you are going to be right back where you started. 

I didn't get that all in the four days of STF 1.  But I began the foundation, the beginnings of the emotional and spiritual healing that needed to take place and still is a work in progress. 

I flew home exactly a week before brain surgery. We landed in Los Angeles to the news that my Aunt in Hawaii had passed away. I am an eastern girl at heart. My mother was born in Korea, and my culture is something that colors everything I do. I am too superstitious to think that means nothing, despite what science tells me. I took it as a sign that of all days, it was a week exactly, a message to me to follow her example. She would have wanted me to keep fighting. She said those words exactly when I saw her a few weeks prior: keep fighting.  Have this surgery and get better. So I did. 

Fast forward a year later to STF 2, and I was seemingly in worse shape than before.  The year before I could barely walk, I passed out from neurogenic orthostatic hypotension during a workshop, I had violent dyskinesias through it all and it was concerning to say the least. But this same group had sent me off a year earlier, expecting a miraculous turn around. 
Miracles take time. And they work in unexpected ways. 

I arrived to STF 2 without obvious parkinsonism features, but I was barely 100 lbs. It was may, 2016. I had a college degree. But I was moving back in with my parents. The go-getter of a girl was gone. This girl was barely surviving. 

I had been tube feeding for five months at this point and it was failing. I was losing weight tube feeding and I was getting horribly sick all the time from the feeds I was not tolerating. I was barely able to take in 700 calories a day at this point. 
This time they held a healing prayer. I may have lost any sense of cool and collected at this point. Whatever it was I needed healing. I didn't see any other options for me and I was wasting away. 
Once again I was met with a community who lifted me up in my darkest hour, once again I was no longer afraid, if even for a moment. 

One month later I started TPN. One year later and I feel great. TPN became a miracle for me, today I am typing this on my phone on a plane to the retreat and the words are flowing through my thumbs. Today I am 135 lbs, much better than the barely alive 100 lb me they saw last year. Standing 5'8", I think I scared everyone quite a bit. Today I go in, strong, I have worked my physical recovery, sometimes ten hours a week when I can, and my body is stronger than it has ever been. Today I have a strict med schedule and any deviation ends in severe symptoms, but I am living. The meds and the surgery let me live. 
Today I am at peace with my life. Today I love my life. I am going to this conference to figure out what else I need to work on. 
The truth of the matter is that I don't live the way I want to. But I know that I will someday soon. I know that great things are around the corner for me, I have just had to work hard for them, and be at peace with the fact that they aren't here right now. I have had to check my pride and live with my parents in my 20s, when I am supposed to be out exploring the world. I know that there is a lot more for me to do, and that things will come when they do, and that right now I am exactly where I need to be. I am expecting the unexpected on this retreat. I am seeing where the wind takes me. I will let you know the changes, as they come. For now, we are descending into Wichita. Yes, Kansas. They change the retreat location every year. Hopefully soon they will take up my idea of hosting it in Jamaica! 
For now, Jasmine out

2 comments:

  1. Jasmine, thank you so much for sharing your story with us. Many things about medicine & illnesses can seem to be just statistics & charts, but you have made your journey real to those of us who will never have to suffer as you have. Your strength and determinations are an inspiration! Be strong; carry on; keep sharing with us as you make your way into the future!

    ReplyDelete
  2. Thank you Jasmine for sharing your powerful journey. You have moved me. Please keep on writing!

    ReplyDelete

I am tired of metal detectors

I am up late writing this at 1:20 am on a saturday night, or sunday morning if you will. The reason I am up is my PD insomnia as usual, but ...