Fluctuations

As I drive to dialysis, I greet the dawn of the New Year. It’s been a year and a half since my kidneys stopped working, and my journey to kidney recovery began. Stronger, healthier, and happier, I’ve grown in my depths and abilities as a human being beyond what I thought possible. As a perpetual giver, I’ve had to learn to receive. I’ve learned to stop sacrificing myself and my health. If I’m not healthy, then I can’t possibly offer help to others. Raised to be fiercely independent, and taught to rely only on myself (and the Divine) by an endless stream of takers, I didn’t know how to open up to the people offering hands and hearts of support. Now I am willing to ask for help, a hug, or a place at someone’s holiday table.

The holidays were a mix of emotion, as I continued to face the difficulties of my family and various past friends refusing to take my situation seriously. Perceptions are unique, and everyone has struggles in life. Just as I recognize that the nurse in Trinidad, who immigrated there after surviving horrific atrocities in Rwanda, has been through tragedies that make my kidney failure look like a walk in the park; so should people see that a minor cold, sinus infection, or battling a few pounds doesn’t compare with the immediate and ongoing life-threatening reality of losing an essential organ’s function. The tragedy of kidney failure has certainly clarified the relationships in my life.

I’ve been reluctant to confess my disappointment in my family’s support, and how the lack of compassion from previously close friends has hurt me. I’m not generally one to complain in life, but any major health crisis often means a loss of more than just one’s bodily well-being. The impacts are also felt emotionally, and psychologically. In mentioning this, perhaps more people will reach out to others, as even the strong and capable need assistance when they are hit hard in life. Thank you to those, who have reached out to me, checked up on me, and made sure I could pay my bills.

The prospect of sitting home, alone, on Thanksgiving drove me to post on my private Facebook page: I offered homemade pie in exchange for a seat at a table. Old friends, and new ones, opened their homes and hearts to me over Thanksgiving and Christmas. Memories of easier holiday times surfaced, and I ached for the days when I used to gather with my family. Now each of my family members is caught up in his or her own life, and spending time with their friends and in-laws, or playing video games is more important. I yearned for my grandmother, Patricia, the matriarch of the family, the glue that held the family together. She led by example and word. Her grace, hospitality, and generosity still shape me today. And her pie-making lessons allow me to make flaky piecrust.

At the same time I was grateful to be alive during another holiday season. I relished being able to travel north a few hours, and skip dialysis on Christmas Day. Riding in the car’s passenger seat, while watching the change in scenery, brought me happiness. Seeing my name on a stocking, and the lovely little gifts in it on Christmas morning went a long way in making me feel welcome. The previous year I spent Christmas alone.

Vinyasa yoga in a new place was as life affirming as always, and I marveled at the ability of my body to move into the asanas. Ice skating encouraged me to stretch my body in new ways, as I savored the cold and pushed myself around the rink. The blinking lights in the darkness of the laser tag room enticed me to let go and play. I’d found another thing to enjoy, and a way to release the energy and emotions within. Conversations, delicious cookies, bouncing black squirrels, and winter rainfall closed out two thousand and twelve.

Over the last few months, the stem cell treatment has been working its magic. The day the length of my dialysis treatment was reduced to two and half hours per treatment was an exciting day. I regained three hours of freedom per month! My blood pressure has dropped down to normal with lower and lower levels of medication. Many of my blood tests are now within normal range, and my weight has stabilized. There have been fluctuations in test results, ups and downs in my creatinine and BUN levels. The biggest change is how amazing I feel, and I am brimming with energy. My immune system has become resilient, and I can feel the difference in my body.

Now it is a waiting game. I believe that the worst of it is over. Undetected infections have been found and treated, so that I no longer have ongoing inflammation in my kidneys. I’ve gone nine months without any visits to the hospital. Each day I wonder how much longer I must tolerate the temporary residence of the catheter in my chest. I no longer feel sick. I no longer feel like a dialysis patient.

Time passes by, and each second draws me closer to the end of this particular part of my life’s journey. I’m excited to see what lies ahead, as I carry the Light along a path that reveals itself with each passing breath. It may be a path that only I see, and I hope sharing it with you brings some Light into your life.

A lifetime is an opportunity to experience God in a different way. Every moment propels you closer to recognizing this essence, your Spirit, within yourself and everything around you.

Advertisements

Tall Tale

It may sound like a tall tale, but as revealed in the front page of my local newspaper today it’s all true.

As I sat at my kitchen counter drafting a letter to my benefactor, I decided to make one more call.  I decided to leave one more message.  What would be the harm?  I thought about what to say, and rehearsed it a few times.  Rehearsing for a phone message isn’t normal for me, but I wanted to convey my words in the right way.  Time was slipping by, and I reached out to hold the door open.  The door leading to my dreams blurring and merging into reality.

An eternal optimist.  A believer.  A dreamer of possible realities.  This is how I’d describe myself.  When things change in my life, even in the most awful ways, I prefer to believe that it is because there is something better around the corner on the cusp of entering my life.  I didn’t always see things this way, but I have for many years now.  It doesn’t mean I enjoy the dreadful moments and events that occur.  But, I know to let go of them sooner, laugh loudly, and re-dream.

This is part of my way of being.  Many people have tried to convince me that this is not a way to be.  That this is not reality, but mere fantasy.  When you’re life is on the line, you make choices.  I chose to dig in deeper, and grow my roots firmly into this way of being.  What’s the point in sharing this with you, dear reader?  Because I wish for this story of mine to inspire you and give you hope.

I dream of fully recovering from kidney failure.  I dream beyond this.  Why does my recovery have to be enough?  Perhaps I should go bigger, aim higher.  So, I dream of helping others with what I’ve learned as a dialysis patient and about the potential of healing with stem cell medicine.  For fourteen months I have been dreaming this.

I left a message, and then as before I hoped for a response.  Within an hour my phone rang.  My messages had been received.  My voice had been heard.  I listened as the person on the line explained what had happened with the check.  There had been concern that the check had fallen into the wrong hands.  “We would like to reissue the check”, said the man’s voice.  “I am here in town, can you meet me for lunch?”  Of course I replied with a resounding, “yes”.

“Om Mani Padme Hum” I repeated into the void of my car, as I drove to meet the employee of Ty Warner Hotels & Resorts the next day.  Mantras come in handy, when you’re anxious or worried.  Essentially they are a prayer repeated over and over.  They connect you with the Divine.  Whether a Tibetan Buddhist prayer like this one, or one to the Virgin Mary, they all speak to something higher than the self.

As I passed by him, I knew he was the man I was meeting for lunch.  We sat down inside the Biltmore, and with a large smile he reassured me that Ty Warner wanted to reissue the donation check.  He was warm and patient, as he listened to me talk about my pending stem cell treatment.  This wasn’t all though.  Ty Warner also wanted to support my efforts to bring attention to how stem cell medicine can help with kidney failure.  “Astounding”, I thought.  My second wish is also coming true:  potentially helping thousands of people have more access to information, which might positively change their lives.

The faith I had in Ty Warner’s kindness, sincerity, and generosity is just.  He is the donor I met that fateful day.  He is the man, who extended his hand to hold mine through his car window.  He is the man, who is opening his heart widely to help push my dreams forward.  My deepest gratitude goes out to Ty Warner, and I don’t have enough words to express the “thank you” from my heart and Spirit.

Dreaming and believing open the doors to endless possibilities.  Effort, work, and resilience will most likely be required on top of the dreaming.  Yet, the doors will begin to open.  I tell everyone that I will accomplish my dreams, and I disregard whatever negative or doubtful opinions they might have about them.  After all, they’re my dreams, and I will continue to have them.

The best possible outcome in Joy & Health. This is my focus. This is what I see.

Generosity of a Stranger

At this point in my life, it is firmly my “intuition” that guides me.  That’s what led me to drive to pick up my mail after getting off the sailboat.  I’d spent my day cooking, tolerating dialysis for 3 hours, then back to more cooking and prepping for my first local fundraiser.  Exhaustion didn’t deter me.  After opening the little door I saw a handwritten envelope mingled in with the other more mundane rectangles.  The sender’s address was unfamiliar to me.  I took my prize back to my car and carefully tore along the edge with my finger.  Inside a personal note accompanied a donation to my medical fund.  Tears filled my eyes, as I felt overwhelmed by the generosity of this stranger, who had jotted down a few kind words.  I felt my heart being impacted:  it’s another moment from the last year, which I’ll never forget.  It marked the first time a stranger mailed in a donation, to help give me a chance at living a life free of beeping machines, ongonig tests, and being connected to plastic tubes to survive.

Again, it is my intuition pointing me in the right direction.  Beyond the volumes of scientific and medical data on stem cell treatments, I believe stem cell medicine is the right choice for me.  While I might have to convince family, some of my friends and those in my community about the successes and potential of this type of treatment, I didn’t have to convince this stranger.  The generosity and kindness of strangers has gotten me through some truly rough moments.  My gratitude goes out to the strangers, who are coming into and forever impacting my life.  Thank you so much!