Hello Darkness My Old Friend

When I was a senior in high school, someone asked in my anatomy elective "what is it like to be in pain all the time? Would you like, not really feel it after a while because you got used to it?"

I answered her, because it was a question I knew all to well. I was perhaps the only person in that room who could really answer that question. 

"Well it always hurts. But you sort of get used to it. Pain becomes your new normal. But it never gets easy, you just learn to tolerate it and keep going because you can't just lay on your bed and cry all day"

Present Day

Its 3 am. Unlike the last post that started the same way, this time I am not in dire trouble. This 3 am is a fairly normal parkie 3 am. 

People with Parkinson's have insomnia. Its just a thing. I could go into the science of the balance between melatonin and dopamine but I wont. What I will simply say is that your nice daily sleep schedule you have? Parkinson's laughs in its face. But tonight, thanks to Ambien and a lot of benadryl, I did fall asleep. I woke up to a familiar and yet supposed to be under control phenomenon: PAIN. 

Ouch. All I can say is ouch. I forgot to change my fentanyl patch. For me, it lasts like 2 and a half days. Fentanyl patches are supposed to last 3 but it just does not. When I had built up enough tolerance of opiods to get the patch, we started with it being a 72 hr patch like it is intended. But the final ten hours or so had me in complete agony. It had simply been burned through, leaving me with nothing for the last stretch of the patch. 

Turns out everyone's skin is different. Who knew? 

99% of the time, I am super responsible with my patch, faithfully replacing it every 48 hours. Right now things are a little hectic between trips (I am all over the map this summer it seems) and I simply forgot to put on a new patch. 

Sometimes I forget that my body is a total mess. Most days, when I have my meds all worked out and my DBS is on and I am hydrated and fed I just go about life like any other person. Then something gets messed up and I remember who I am, I remember that a part of my brain is literally degenerating. 

My whole body hurts without treatment. I cant quite describe it. Not everyone with PD has an associated pain syndrome, but I have had it from day one. Pain was actually the first thing I ever felt with my PD. A pain in my ankle turned into full body dysfunction. 

I lived with pain for seven years. Before my diagnosis I was on baclofen (muscle relaxant) and tramadol (a 'baby opiod', its like in between extra strength tylenol and norco). That basically took the edge off of my symptoms so I could *sort of* function. 

Then I started sinemet at 18, and while I still had pain and symptoms my body was SO much more functional and my pain level was a lot lower. Basically took it from daily 7-8/10 pain to like 5-6/10. I am not exaggerating that number. 

After my DBS my physical symptoms subsided a lot. No longer was my body a twisted and mangled mess, but my neuropathic pain got worse. My body just ached constantly. I had my second DBS in December 2015. By April 2016 I was so done. I had a total breakdown, I was just sobbing in my apartment, after 7 years of pain, I just couldn't do it anymore. 

My neuro wanted my general doc to handle pain meds (which kind of pissed me off at first, my pain is from my NEURO disease and my neuro wont treat it). My GP sent me to pain management specialist. I was supposed to wait a month, and I called my dad in tears that I would have to wait a month. My dad worked his healthcare navigating magic and got me an appointment in a few days. 

When I saw the pain doc, he started me on meds. First we used norco, then eventually I was settled onto a combo of the fentanyl patch and lyrica. 

I wont under exaggerate how much med that is. My patch is the equivalent of 6 percocet a day. That is how much it takes to calm my pain. Because its a constant flow, I don't get 'high' its just my baseline now, my body adjusted. And the lyrica caused crazy food cravings for a while, but now finally I stable and happy. It took abour six months to get here. 

Not living in pain is amazing. Not waking up to my whole body just hurting is amazing. I had forgotten what that was like. 

No one should have to live like that but unfortunately it is a reality for so many. Because of the stigma of pain meds, I waited SEVEN YEARS to get help.  Yes, opioid absue is a thing. But there are hundreds of thousands of people like me who no longer cry themselves to sleep because of this medication. Restricting us and labeling us isn't solving anything, its ruining lives. 

I wanted to share this because I don't think it is really possible to imagine a life where pain is always present. I know I couldn't have imagined this before it happened. Until this morning I forgot to change my patch, I had forgotten how awful it is to not have this under control. So in a way I am glad it happened, it gave me a fresh perspective. I am learning slowly to love my body again, with all its faults, and appreciating the things that make it work. So right now I am appreciating the little blue patch on my arm for allowing me to feel days without agony. 

Healing

Its 3 AM and I wake up in massive abdominal pain. At first I think its acid reflux flaring. I get up and drain my G tube and take an extra vial of IV protonix. When it doesn't let up I know something is seriously wrong. After you have had two awake brain surgeries, you develop a pretty impressive pain tolerance. 

When it doesn't let up I call the house phone, my parents come downstairs to my room, and they sit with me for a bit. None of us want to go to the hospital and we are just trying to get me through it, hoping that it passes. It doesnt. 

We go to the ER. There is an agonizing two hour wait to get into a bed, they were full. Meanwhile I was laying across the waiting room chairs, arching my back and curling as the pain radiates from the front of my body to the back, every few minutes, with a brief period of lessened pain in between. 

When I finally get in they give me some morphine and take me to CT. Kidney stones was his first assumption, which made me laugh hard. Really? After all of the things I have been through, kidney stones. Really, universe? 

When I come back from CT, I am happily drugged, it was enough to take the edge off. The doctor comes back in, this time a much more serious and somber look on his face. 

"Have you ever had a bowel obstruction?"

"No but I have had a post-surgical ileus"

"General surgery is going to come see you, you will most likely need a surgical resection of a portion of your small intestine."

My heart dropped inside my chest. Suddenly we went from 'lol i have a freaking kidney stone after all of this' to 'I may need major surgery'. 

I would like to think that for the most part I am calm and collected at the hospital. But not this time. When the doctor left the room and it was just me and my dad I couldn't help but sob. 

The general surgeon came in, he was very kind and I instantly liked him. He made me feel at ease in a horrifying situation, he talked with me and not to me, and he understood that at this point in my health-care career, I knew what I was talking about. 

He explained that a section of my small intestine had folded and twisted, but it was above my J tube so I could still give myself my PD medication through my tube (if it were below my J tube it would have been a nightmare). He also said that if it were anyone else he would take them into surgery immediately, but given how difficult it is for someone with Parkinson's to recover from major abdominal surgery, and that I was FINALLY recovered from the J tube surgery I had in October (this was May), and that the J tube surgery was a lot more minor than removing a section of intestine, and that surgery had a boatload of complications, he agreed that we would wait. 

So we waited. We hooked up my G-tube to suction. Most people in this situation would have been fitted with an NG but I already had a G-tube just hanging out, so it was easy. I was admitted to the hospital and drugged up and we waited. The surgeon visited me every day, he had the nurses watch for any signs of it worstening and we had constant blood work done.  A few days later I had an x-ray that showed it was getting better, to everyones surprise my small intestine had essentially begun to untwist itself. And two days after that, most of my pain had calmed down and another x-ray showed that my intestine had fully untwisted. It was a miracle I did not expect and the surgeon did not either. He still wanted me on G-tube venting and loads of extra fluids. Anyone who didn't casually have a G-tube and a central line would have had to stay longer but all of this I could do at home now that I was off the morphine, and I was so done with this week long disaster. 

I went home, physically healed and emotionally wrecked. How did this happen? It was so random.  No one saw this one coming. It can happen to anyone, my uncle had a much worse disaster of a bowel obstruction, and ended up having to get a good chunk of his small intestine removed. Loads of people I know turned out to have had that happen to them, completely random and unexpected. Your life can pause for a moment and something completely random can change things, and you are never the same again. 

People with medical conditions like to pretend that they are okay and that we are all old pros at handling anything that life throws at us. That's the biggest lie of my life. In reality, for the past 8 years, Parkinson's has put me through hell and back and the emotional scars are real. I have been in survival mode for a long time. When you are fighting to stay alive, your personal and spiritual well-being takes a back seat. Ever heard of Maslow's hierarchy of needs? Food, shelter, and water. Those are your basic needs. You can't get to self-actuation without your basic needs being met. And for so long, I was just fighting to live, and so I let my sense of self go. I just focused on the next hurdle in front of me and they kept coming and coming. 

I had this silly notion for a while that DBS surgery was going to be the end of my Parkinson's, a cure. That idea lasted all of ten minutes. 

This is a really serious problem. Many DBS patients go through a depression post surgery, while they may have monumental success as I did, the realization that this is really just a big Band-Aid kicks in and that feeling quite honestly sucks. I don't have a mature word for that feeling, some things are just crap and I am calling it. Even though you know and you are told this, you have seen others do great but still have Parkinson's, there is something inside you that lingers, and that feeling gets squashed like a bug when it sinks in that you will always have this disease. Quite frankly, this disease is terrible. Here I am at nearly 23 years old, 8 years into a neurodegenerative disorder that has an average survival of 15 years. At 20, before my DBS, I was so affected that I could not live and get around without assistance. I was at stage 4, and I found myself completely debilitated. About a month before surgery I had a terrifying episode where I could not walk or talk. That one will someday be another blog post. 

But back to this, the honest reality is that no matter how positive I am, no matter how amazing my support system is (which is seriously amazing by the way, I feel surrounded by love), no matter how many times I can look back and say I got through something really hard and I am proud of that, the truth is that every trial leaves an emotional scar. I am working through all of them, but it is difficult, and part of why I started to blog my experience is to be truly and brutally honest with myself, and to share the realities. I am someone who believes that hope lies in the dark places. And while this is a fairly grim story, here is the light. 

My life is a grim story. At 14, I felt a pain in my leg that over a short period of time became full body dysfunction, it stripped me of my mobility and independence. At 18, I started PD treatment and got a good chunk of that mobility back. At 20, I declined fast and hard. By the end of my Junior year of college I was unrecognizable. By that time I didn't think I would make it to 22. But here I am, I had two DBS procedures and I was diagnosed finally with gastroparesis. I got my feeding tubes and central lines and I came back from the brink of death a few times and finally, after all of this, I am starting to thrive. Finally I am at a place where I can start to focus on the future and enjoy right now because I finally have a future that I can see right in front of me. 

But I have to heal these old wounds. I have to deal with the fact that sometimes random crap happens. This small bowel obstruction could have easily killed me and it was completely random. It was not something that anyone could have seen coming and had nothing to do with my Parkinson's or with my gastroparesis/dysmotility. It was just a random bump in the road. 

So here I stand and I have to choose. I could live my life in fear of what is to come. I could live my life angry about all of the things that happened to me. I could pretend I am okay and that everything is peachy. 

But all of that is a lie. 

I choose to find the light in the darkness, to search deep within me and allow myself to feel it all, to grieve what is lost and enjoy the now. I allow myself to admit that honestly I am terrified about the inevitable decline of my mobility. But I don't let that keep me from pursuing athletic and artistic goals while I still have my mobility. I am building a happy and beautiful place right now, healing the darkness by slowly letting the light in, and respecting that it does not happen overnight. 

So for now, I leave you with this. 

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