The Type of Letter You Keep Forever

“Oh my GOD”, I thought as I drove in my car to my office last Tuesday night.  “This could be it.  I could actually be going.”  I didn’t expect anyone to still be at the office, and no one had called to tell me that a package had arrived.  A package that could potentially change the course of events in my life.  Entering through the waiting room, I found that someone was still there working.  Passing by with a “hi”, I quickly walked to my office in the back with trembling anticipation.

I had received an email the day before.  In rereading it with my mouth hanging open, I realized that the package was waiting for me.  And, now, I saw it in the shadowy light of my office.  Flicking the switch, light revealed that it was an overnight FedEx envelope resting on my desk’s glass surface.  It was from his business in the Chicago area, as promised verbally only a few days before.

In seconds I had it open, and I was reaching inside and pulling out the cream envelope inscribed with one word:  “Jennifer”.  The handwritten letter by the donor was genuine and heartfelt.  It was the type of letter you keep forever, and accompanying it was the check.  A check that could change my life in an instant.  Streaming tears of relief and amazement fell uncontrollably from my eyes, as I walked out of the room back towards the exit.  I was flooded with indescribable emotion.

The cost of roundtrip travel.  The cost of the dialysis treatments while there.  The cost of the stem cell treatment itself.  Food.  Lodging.  Calculating numbers in my head, I concluded that I might have enough now to go without worrying about anything.  I might have all that I need to claim my life back and continue my journey here on Earth.  All the tension in my body released and an unbelievable feeling of euphoria began to fill me.  Beaming a smile from ear to ear, I floated to my car to start sharing the news.

“Mom, are you sitting down?”, I asked over my cell phone.  She already knew the back story.  She, along with a few friends, already knew the name of the donor and how I met him.  He’d rolled up in his nondescript car, while I was fundraising at the French Festival.  He was lost and needed directions.  I often get asked by random strangers for directions.  Not one to miss an opportunity, I handed him my flyer and he made a fifty dollar donation.  As he drove off, I thought that was the end of our encounter.  One of my girlfriends with me that Saturday morning noticed his return before I did.  Again he stopped at my table near the entry to the parking lot.  He’d returned after an hour or so.  Rolling down his window, he reached out his hand and introduced himself.  I immediately recognized his name.  He was kind and sincere as he looked directly into my eyes, and the woman with him smiled at me.  They’d read my flyer.  I listened as he repeated over and over that he was going to help me.  That my fundraising was done.  That I didn’t need to worry any longer.  He said he would send a check after he returned to his offices during the week.

For the next few days I began to make plans to get the much-needed stem cell treatment.  Excited doesn’t adequately explain how I felt about having a normal life within my reach.  I began to dream about swimming in the ocean again, showering like a normal person, and I relished the thought of having my chest catheter removed.  A life without dialysis.  A life with all my organs working.

Over the years people have commented on the intensity of my life.  What’s that saying?  “God never gives you more than you can handle.”  I’ve worked hard to get where I am, meaning to fully get to being my True Self.  To let my Divine Self shine out as much as possible.  I’ve tried to become more patient, more tolerant, more compassionate, and to laugh often at life’s quirks as well as my own.  I consider myself truly blessed to have studied numerous meditation techniques, and yoga with wonderful teachers and Tibetan monks since my late twenties.  They’ve armed me with the very tools I need to get through this, and to continue moving forward.

A couple of days ago I had to go into my bank, to fix a problem with the debit card I now have for my medical benefit fund.  That was how I found out that a stop payment had been placed on the check.  The very check, that was going to go a long way in saving my life.  Shock took over.  “What?  Why?  How was this possible?”, I wondered.  Tears once more overtook my cheeks.  Immense sadness washed through me, as I struggled to grasp this news.  When something phenomenal is given and then is abruptly taken away, it jolts you to the core.  Not having it at all is easier than this.

I don’t have any answers yet.  There’s been no response to my email and phone calls.  I still believe that the donor meant to give me his gift.   After all he took time to write that touching letter.  I can’t fathom that a person would intentionally crush another’s hopes and renewed chance at life.  I can’t understand why any person would behave this way.  Perhaps it was an error.  Perhaps he’s not available to remedy the problem right now.  Perhaps he doesn’t know.  Perhaps I’ll never know.

I can only pick up where I left off:  striving to raise enough for the stem cell treatment.  In the book, Siddartha, there is a technique of visualizing the word “Om” riding on the breath and aiming towards a target as you exhale.  The seeker only focuses on this without distraction.  This is how I feel now, and how I have since the day I originally learned of my kidney failure.  Unwavering focus on recovering.  Unwavering attention to the Light streaming into my kidney cells, healing me.   I pray to the angels, my guides, my Guardian Angel, my teachers and ancestors, and those of the Light that it may be so.  Mere Gurudev.  Om Santih.


Do you dare?

Beep beep beep.  I’ll never forget the sound.  Imagine you’re in a large room, about the size of a small bank lobby.  There are sixteen large vinyl-covered reclining chairs arranged in a circle around the perimeter of the room, facing inwards so that you can see everyone and everything.  Remember when you were a kid and you had to line up in the order of boy, girl, boy, girl?  Well in this case, it goes chair, machine, chair, machine.  All of the machines are whirring, and always making noises.   Beeping.  Alarming for various reasons.

Do you dare ask a person “what is it like being on dialysis”?

Five hundred and sixty.  That’s how many hours I’ve spent in dialysis so far over the last thirteen months.  I have a fixed time for dialysis, recently changed to 6:30 in the morning.  That’s right, 6:30 am.   It’s not like other appointments, which you can reschedule or choose.  Three days a week.  Every week.  I don’t really have a choice.  It’s dialysis and I have to do it.

In the beginning, when I was really sick, I used to count the wooden ceiling tiles and the lights on the gothic black metal chandeliers.  There are no amenities in dialysis.  No television.  No pretty views out the sparse windows.  No internet access, unless you bring in your own hotspot device.  If you have a fistula in your arm for dialysis (most patients do), then you have to be poked with a large gauge needle each time, and you can’t move your arm for the three hours or more.  If you do, then the beeping will begin.  It’s a rough, grim and depressing scene.

When I arrive I pass through the lobby and walk to an empty chair, which I’ll be in for the next three hours.  There are little side tables attached to the chairs, and on one are the gauze, betadine swabs, mask, and syringes of saline and heparin with my name labeled on them.  I lift and lock the other side table into place for my bag of stuff.  It’s roughly the same stuff I bring in every time:  iphone for internet access, a magazine or book, my favorite iced tea, small snacks, headphones, a small notebook and pen, and a blanket.  Sometimes I bring in my laptop, so that I can watch a DVD.  Thank goodness I have a laptop and a smartphone.  I’d go crazy in the place without them.

After plopping my stuff down, I walk over to the large digital scale embedded in the floor.  If I weigh more that when I left the previous time, then it means that I’m retaining fluid and that fluid will have to be removed by the dialysis machine.  Luckily I have already recovered some kidney function, and for the last 7 months I rarely gain any fluid weight.  Convincing some medical personnel, that I can and should be gaining regular weight as a dialysis patient, has been an uphill battle.  Fortunately, my nephrologist has been very tolerant of many of my points of view and requests.

The arm cuff used to monitor my blood pressure doesn’t usually hurt.  It’s terribly annoying though.  First, a reading of my standing blood pressure.  Then again as soon as I sit down.  Again after the long plastic tubes are connected to the ports of my chest catheter, which rest outside of my body over one of my breasts.  My arm will be squeezed for a reading every half hour.   I have to remove the catheter from the inside of my clothing, so that a nurse can remove the bandages and open the valves.  The lines are flushed with saline, and filled with the heparin before my blood passes through the tubes for cleaning by the cylindrical artificial kidney.  It doesn’t hurt, and after a few moments my blood is returned to my heart seventy-five percent cleaner.  This is less than the one hundred percent that normal kidneys accomplish, but it’s enough.

If I move around too much, sneeze, laugh or cough then the beeping begins in earnest.  I’ve interrupted the flow of the machine.  A nurse will come over and push a few buttons to let the machine continue.  The more I cause interruptions, the longer it extends my dialysis time.  I try to keep still.  I try to block out the sights and sounds of the other patients groaning, snoring, pleading, and sometimes throwing up.  It’s the only way I can get through it.  Nothing is private in the room with the others and the staff of ten people or more.

Finally I reach the countdown of ten minutes, and my machine begins to beep again, signaling everyone that I’m done.  The entry point for the catheter into my body has been cleaned, and the bandage replaced.  Another squeeze of my arm for a blood pressure reading, and then I’m returned to myself.  Literally.  The plastic tubes empty, and a nurse repeats the saline flush and heparin into the catheter.  I feel the temperature difference as it enters me.  I don’t mind it, as it means I’ll soon be free.  I’ll be able to stand for a final blood pressure reading, a nurse will listen to my lungs, and I’ll be weighed again.  The numbness in my backside will start to fade, as I walk out the entrance door and relish the fresh air.

Patients don’t usually get visitors while in dialysis, because it’s not a happy place.  What’s it like being a dialysis patient?  I wouldn’t wish it for anybody.  Some days are worse than others.  I mostly try to keep myself occupied while I’m there, and I dream of the day when I’ll choose if I want to weigh myself or submit to any tests.  I dream of the day, that I’ll be free of the machinesFree of the beeping.

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!

What Wakes You Up At Night?

I’ve never been in charge of any fundraising.  I have worked for a non-profit, but it was only a private family foundation.  Not the same thing at all, since there was zero soliciting.  Exploring options for fundraising is a lot of work.  Phone calls, emails, online web pages, organizing, and trying to think out of the box.  When your own life is on the line, you find the motivation and you become audacious.

One of my favorite phrases is “the worst thing that can happen is someone can say no”.  I keep this in mind as I ask people for their help.  For their time.  For their money to help me continue living.  For their compassionate and giving hearts.  Some people will say “no”.  A fair amount of people will say “no”.  I’ll continue to ask.  I’ll continue to dream up possibilities.  Sure, I worry that I won’t reach my fundraising goal in time to make a recovery, and keep on living without repeat transplant surgeries and endless medications.  I sigh as I look at my fundraising page with the meter on it, showing that I’ve barely made a dent.  It causes me wake up in the middle of the night.

I think of the hundreds of people I’ve helped over the years as a healer, herbalist, reiki master teacher, yoga instructor, advisor, confidant, and friend.  I don’t regret one moment of giving to others, even when it was the last $20 in my wallet that I gave to a sobbing family member.  Karma. The Golden Rule.  Altruism.  Random Acts of Kindness.  Call it what you will.  It’s brought me a lot of joy.  A type of joy that warms me on the inside and sustains me when I’ve found myself alone at night in a hospital bed, or bracing myself for yet another needle poke in the arm.

I wonder what people think, when they visit my fundraising page.  What makes them decide to donate or not to donate?  Especially the people, who personally know me.  If someone I knew (even if for only 5 minutes), asked me to donate to save his or her life, then I would likely open my wallet on the spot and give at that very moment.  So, I can’t help but wonder why everyone doesn’t do this.  What stops them?  What compels others to instantly give?

In the last week and a half since I launched my fundraising,  I’ve experienced both.  Reaching for her purse, one woman immediately gave me cash.  I haven’t known this woman very long, and I didn’t even ask her to donate.  Smiling, loving eyes met mine, as I accepted her gift with gratitude.  Everyone makes choices in life, all the time.  I choose to continue to believe there are good people out there.  It’s what helps me fall back asleep when I awake in the night worrying.