Two months ago, I lost my voice. Not my literal voice that occurs when I use the breath from my lungs to rub my vocal chords together, but my metaphorical voice. My will, my motivation, my fight, my strength. This was the first time since the death of my aunt and uncle that I have felt nothing. Usually, I'm full of feelings, good and bad, 24/7. It's actually pretty annoying to constantly have a feeling and opinion about everything, but that's just who I am. When I don't have any feelings at all, I feel numb, frozen in time, just watching everybody's lives go on without me. For some people, this is an often occurrence. For me, this only happens when I am consumed with grief. Many times over the past few weeks, I opened up my blog and clicked the "new post" button, fully intending to write something, but the words just didn't come. They couldn't come. For me to put words on the page is for me to express my feelings, but how could I express something that I didn't have? I wasn't just a writer having writer's block, waiting for inspiration. I was waiting for God. During this time, I didn't even have the motivation to look up and see God. When He was right in front of me, I looked right through Him, and didn't see Him at all. When all His efforts to reach out to me through my eyes, my body, and my mind failed, He came to me elsewhere. He came to me through movies, music, TV shows, facebook, etc., even though most of it wasn't even about God. Most importantly, He came to me through other people: my family, friends, strangers on the street, and even animals! I physically left my Davis community, but I never really left. The community came home with me. I had constant updates on my friends' lives, and was always reminded that I was missed. I was not forgotten. My family extended me every ounce of patience and grace they had in their bodies as I laid on the couch waiting for the energy to do something, anything. It took time and perspective for me to see that God has never left my life, even though it seemed like He did for a while there.
So now we get to where I am now. I feel things now, I just don't know what exactly it is that I'm feeling. I can identify some of the thoughts that have been running through my mind, and I know how those individual thoughts make me feel, but I don't know how I feel overall. I am fed up with medicines and all the drama that goes along with them. I am determined to enjoy myself this summer, on my family trip to Australia and next quarter in Davis at my apartment, and to make up for lost time. I am desperate for a change in my pattern of having good months after the hospital, then crashing, going to the hospital again, having bad months, then having good months and starting all over again. I am disappointed for everything I missed out on, not only these past two months, but since my headaches started 3 years ago. I am empowered by my new lower pain level and my higher energy level. For the past two to three weeks, I have actually had the energy to do things! I've spent time with friends here in Modesto, visited my friends in Davis, gone to Starbucks, boba, shopping, etc. with my mom and sisters, been horseback riding with my dad... all with less pain than I have had in a long time. My pain has daily been at a 6 or a 7 out of 10 for a good amount of the day, which for me is acceptable. I've had moments where the pain has been even lower, but also moments where it has been higher. I've talked to my current doctor, changed my medications, seen a new doctor, and plan on seeing yet another specialist. Two weeks ago, I saw the UCSF neurosurgeon because of some new research I had found. When I had an MRI two years ago, I had a small cyst in my brain. I was told it was harmless and extremely common, which is true about 90% of the time. However, I found some studies that showed that cysts in the pineal region of your brain, which is where my cyst still is, can cause headaches if they are in the right spot, of a certain size, etc. So, I asked to see the neurosurgeon. Long story short, mine is probably still harmless. A small part of me wonders though, if I'm one of those few cases where "harmless" causes harm. Unfortunately, that's a story I don't have the answers to yet.
Based on the opinion of the neurosurgeon, my neurologist, my parents, and myself, I have a new treatment plan, one that uses DHE to prevent the high pain levels, not just treat them. I will schedule admissions to the hospital months in advance, and get the treatment no matter how I am feeling at that point in time. If I am feeling good, I will still be admitted, because the "feeling good" will not last on its own. I have given up the hope that it will last on its own. This is not something I have decided on easily, though. This is the grief I felt, that caused me to lose my voice. I was, and still am, grieving the hope that I held onto that one day soon I would be free of my daily pain. It sounds ominous and depressing to say it like this, but it turns out that holding onto that hope actually caused me more pain and suffering than letting it go has. I haven't given up hope that eventually I will be pain free, but I have realized that it's not going to happen anytime soon, and it certainly isn't going to happen without some serious treatment plans. So for now, I am scheduling DHE every 3-5 months. I plan to go back to the UCSF hospital for the DHE treatment in August, so that by September I will be able to go back to UC Davis, where I belong. I also hope to take my finals early for the fall quarter, and return again to the hospital in December, so that I can rest up for Winter and Spring quarters the next year. I hadn't thought this far in advance yet, but I will probably repeat this plan next year, possibly the year after that and the year after that. This is the plan that I will stick to until there is a drastic change in my daily well being. I hope that this plan will lead to steadily decreasing pain and increasing energy. I hope that eventually this will be a good thing, even though it doesn't feel like a good thing. Through all that has happened and that will happen, I feel trapped. I feel trapped in my own body, in a life that I would never have imagined for myself, but instead of cowering, I am pushing the boundaries. I am still going after my dreams, doing my best to stay on God's plan for my life, and I am constantly thanking Him for the blessings I DO have.
I have learned many things about life in the past few years, but the most important lesson I have learned, and probably will ever learn, is this: God is ALWAYS with you. No matter your background, environment, personal feelings, beliefs, trials, or blessings, He is right there with you. He is by your side, whether you see Him or not. He is speaking in your ear whether you hear Him or not. He is embracing you whether you feel Him or not. He has infinite love for you, and He will NEVER give up on you, so don't give up on Him. Don't give up on yourself. It's okay to drag your feet from time to time, but don't permanently give in to the world, because the world is not your permanent home. God is your permanent home.
"May the God who gives endurance and encouragement give you the same attitude of mind toward each other that Christ Jesus had, so that with one mind and one voice you may glorify the God and Father of our Lord Jesus Christ."
Romans 15:5-6
Love always,
Sierra
No comments:
Post a Comment