When Death Calls
There has been so much I have needed to write but the very thought and act of it causes more anxiety than I can seemingly endure. A beautiful friend and guide shared with me last night all of the reasons why this is important. So I am trusting this voice and I am becoming more and more vulnerable which is brave I know but also super scary. There is no possible way to sum up seven years in one blog post. So for today let me begin with this past Friday just barely a week ago.
It was for the most part a very peaceful day. I had the usual Lyme issues ie: inability to walk, tremors, extreme fatigue, nausea, light sensitivity, weakness and some disorientation but overall the day felt peaceful to me. I was with my beautiful children in the kitchen, baking some new creations and exchanging in silly banter and deeper things such as Coronavirus and life and death and rebirth. Being with my children is one of my most favorite things on this planet. They all reflect back to me on a daily basis pieces of my own heart. They are vibrant, compassionate, incredible thinkers, they ask hard questions, they play hard and love harder. I look at them daily and think how did I get so lucky but on this particular day, I felt even more gratitude for these precious faces. I was moved several times throughout the day with deep emotion and tears. I believe no less than fifty times I said aloud, Thank you!
Shortly after nibbling at a wonderful meal I created for my family as I often do, I began to feel incredibly dizzy and the tremors ramped up to an unnerving speed and consistency. I calmly walkered by way to the restroom and barely sat down when blood began spewing from my mouth like an awful horror film. I was so caught off guard all I could do was to surrender to what was happening and hope it to pass quickly. There was no other adult in the home besides me and I do my best to not alarm the children. What felt like the longest ten minutes of my life had finally passed and the spewing slowed down considerably. Then the other end began, not to the same degree but enough to know something was incredibly off inside of my GI tract. Now I have dealt with things like this before over the past seven years due to this dreadful disease but never quite like this. This was other worldly and it was clear I had zero control in this stealth robotic game happening inside of me. Usually during an event like this I will text my dad to pray or call my doctor for help but this time I did neither of those things. I allowed my body to have its way and I thought to myself what will be will be. Lets be honest, I am tired of the fight. I am tired of what feels like a game being played with my life and my children’s lives. I had resolved in the bathroom that I would not call anyone for help and I would get through and allow the fight to finally stop.
You see radical change, healing and transformation has come so slowly for me. Oh how I have wished for a quick fix, a super pill, a miracle from heaven, a sudden cell transplant but its just not the reality of how this destiny has played out. It has been a slow, lonely, utterly painful, gut wrenching death of my self and therefore the rebirth feels even slower and longer like it will never come. This disease has felt like a constant nemesis to my soul. Sure I can tell you of all Ive learned and all Ive been able to teach my children because of it but I can also tell you of how very scared Ive been and how very close to death I have been more times than I care to talk about.
About an hour and a half had passed and I crawled my way out of the bathroom and enjoyed about another 45 minutes of dry heaving before help came. I was encouraged to get to the hospital but I did not have it in me. What I had in me was to lay down close my eyes and wait for death to come. I made it through the night very restless and in severe pain due to no hydration and muscle cramping, common with Lyme but more common due to no liquids. On Saturday evening My closest family members gathered around and toasted to my life. There was a lot of laughter, a lot of weeping, some begging and pleading, lots of praying and an awful lot of drinking. I watched from my bed how they interacted with one another, how they loved each other well, how they hugged, how they took their masks on and off literally and figuratively, how they coped and how they moved through the mystery of what was happening and what would come next. I dozed on and off and I shook like a leaf. It was as though I was in and out of my body and the room was the most peaceful it has ever been. I gave thanks for their care, time and attention. The next day was more of the same. A quiet room, a shaking body, thoughtful reflection and a deep surrender to whatever was next for me. Over the course of that time it was reported back to me that many were praying for me and believing this was not the end. Many were posting and sharing the Go Fund Me and Global page and trusting the funds were going to bring us to the home stretch for treatment.
Monday morning about three am I woke up quite startled and shaky. I was unable to get saliva in my mouth and I could feel my body shutting down. It was an out of body experience in the sense that I couldn’t feel much of my body but it was an in the body experience as I could feel my body shutting down. My fever was rising and I had no ability to move my body or to even swallow. I remember feeling this incredible loving presence in the room. Not like angels singing or even like an old church service where people are shouting and praying over people and hyping up the emotion but something much more sacred and weighty. Not even like I would have once described the “Holy Spirit” rather something that didn’t require a name or a label just this secure, sacred, to be respected loving energy and it began rising in me and the room and no words were exchanged but I had this inner knowing that if I didn’t get electrolytes quickly it would only be a few short hours and I would be crossing over and taking new form as we like to call it. Shortly after this tangible experience I was able to get the desperate help I needed, hydration, medication, blood and care. The help came not a minute too soon and although I don’t remember much of the past week there are very specific things that my heart will not ever forget. I am resting. I have been resting for an entire week. My movement is measured, slow and methodical. My conversations are few and my body is doing a hard work to keep me alive and work toward healing. Oh the ways our bodies will do whatever it takes to keep us alive. If we only truly knew and understood. There is suspicion that a new virus was at work in my body and due to my compromised immune system my body did what it had to do to keep me alive which also felt like it was killing me and almost did. Today I have the dry cough, the vertigo, the massive headache and aches with a current low grade fever. We have been in quarantine since before this scary Friday.
Sitting here today as I reflect on all that happened I can’t say for sure why I am still here because there is no way I should be but I can say it is clear to me that my time on earth is not yet complete. I am so grateful for those that have shown kindness and generosity to get me the help I needed. We have been paying out of pocket for this disease for over seven years and prior to those seven years we have been the givers. Giving is a beautiful thing. It reminds you that what you give isn’t really yours anyway and when you are able to share it connects you to the one you are sharing with. I miss the days of incredible significant giving. I am hopeful my days will be like that again soon but until then I am thankful for receiving. I am thankful for your giving in helping my life find balance so that I can move forward with stem cell transplant and regain my footing once again. I am not out of the woods yet but I hope to be very soon. Emergency Medical flights are still going out to my Specialists and Transplant Doctors. Those have not yet been banned.
There is one more thing I feel I need to address. It came to my attention from a handful of reliable sources that my former Singing tour director sent out private messages asking for my Go Fund Me page to be removed from a social media site due to the fact that “she discerned that although I have been sick for a very long time, something was just not right here and she didn’t want people getting hurt”, she also encouraged these individuals to use their “own discernment and to trust their heart in this matter”. Later this same day I find out that her real concern was the fact that I displayed a Boudoir on my blog and she was concerned my son would see this as well that my “faith in the Lord has changed in a bad way”. I would like to not at all apologize for the art I chose to display. My reasons for doing it are in my previous blog. I would also like to say my children are all learning the beauty and art of the human body. We teach our children to be ashamed by our own shame and I refuse to teach my children this! We were all made with such beautiful bodies even if they feel broken they are still beautiful and the curves and the skin are such beautiful art. If you look at these photos and see “porn” or “perversion” or feel judgement toward me or yourself than I want to lovingly invite you to please stop now. Stop the shaming. Stop the projecting. Honoring each others journeys is the most loving thing we can do as humans. We are not walking each others paths, it is not our place to know better for each other. It is our place to honor and respect and to love without condition. My former director felt it was her place to take the role of the Almighty and to enforce taking down my go fund me site because she was afraid of what someone would find out about me but deeper than that how might it reflect back on her. If my faith is changing in a bad way would not that be all of the more reason to allow my page to remain and allow people to make their own decision to give whether they know me or not? So many christians I meet these days do not behave at all as Jesus did or would. Risking my ability to receive help so that I can stay here longer for my children was a very selfish act. It was not love without condition but rather conditional love and judgement.
I don’t desire to talk of this any further but what I am hoping more than anything is that my Go Fund Me can go farther than it ever has because of the kindness and generosity of people and I want to once and for all put an end to this disease and I want to live to tell about it and write about it and to be a voice for many and a listening ear for the weary. This is how I hope to reverse this act of unkindness that was done to me and my children. Please share my story. We can beat this disease, I just know it! I love you all. Dearly.