I stood up from my workstation and looked around to take in my surroundings. Try to envision “Santa’s Workshop” and that is what my eyes saw and what filled my heart on Dec. 27, 2014. Lots of people working diligently with smiles on their faces, love in their hearts and all with a strong connection to inspire the world to Donate Life. I was in a large warehouse in Pasadena, California, which housed several floats that would later ride in the 2015 Tournament of Roses Parade. My husband, Noah, and I had the honor of helping to decorate the Donate Life Float.
In order to enter my eye doctor’s office, I must walk past the entrance of the Davita dialysis facility. This triggers memories of my dialyzing days and fills every cell of my being with gratitude that I am no longer a dialysis patient. I clearly remember the beeping noises the dialysis machines made. The large chair I would occupy for hours as my blood was filtered through the machine. The ice chips and ginger ale the nurses would give me during my treatments. How I was always the youngest patient in the room. The awful cramps I would get in my legs and feet during my sessions. How Benadryl got me through many of my appointments. Most importantly, how it did the job of my two kidneys that were removed and kept me alive until I received the gift of life.
“Consider the momentous event in architecture when the wall parted and the column became.” – Louis Kahn
I discovered the above quote the evening of December 30, 2014. Ironically the same day I was released from physical therapy after being a patient for 22 months. It instantly spoke to me. Architecture is the structure of anything. I compared it to the construction of the past two years of my life, where I am the column.
I was lying stomach down on a massage table with my face surrounded by the circle headrest. It was the third appointment I had with Michelle, a therapeutic massage therapist. She and I connected at my first appointment. She was in awe by all that my body has endured and is very interested in helping my body heal and deal with its constant stressors. At the beginning of the session, Michelle warmed up my muscles with hot rocks. She asked if I would mind if she prayed. I welcomed her kind act of giving. She said she usually prays silently but was inclined to be vocal at that moment. Michelle proceeded to say a prayer that was full of beautiful and heartfelt sentiments about my life, my body and my future. I was so touched that my eyes welled up with tears. I felt at peace and very fortunate at that moment in time.
“If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning.” – Gandhi
Our bodies and minds continue to evolve and change. At times we may try to fight the inevitable that we never stay the same. As we age, our knowledge expands and our bodies progress. We progress to different phases. During these phases we may be forced to unwanted periods of time. This has happened to me since February 1, 2013. I have been a physical therapy patient since the first quarter of 2013 for my disk herniation and recovery from my back surgeries. My spine is complicated. Due to scoliosis, I have two Harrington rods that run parallel to my disks of T3 to L2. The several disks below the rods are either herniated or bulged. The most repetitive question I have asked my physical therapist is, “Will I get back to the me I used to be?
Last month, my dad and I sat on the rocks alongside the American River in CA. There was a man-made pool in the river created with river rocks. My mom was sitting on a large rock in the pool. Her elbows rested on the rock as she absorbed the beauty that surrounded her. The sun glistened on the water and it was a beautiful sight. Mom looked at peace and that vision warmed my heart. As dad and I gazed at her, he said, “She’s really good at that.” Dad was referring to her ability to slow down, appreciate the small things and to be in the moment.
When I was 23 years old, I lived in York, PA and was the Chapter and Walk Coordinator for the South Central PA Chapter of the PKD Foundation. I found myself researching senators online, as I had an interest in educating them on PKD and getting them involved in the local PKD Chapter. I randomly chose Senator Mike Waugh. I called his office and said that I would like to meet with Senator Waugh, educate him on PKD and inform him on the advocacy work I was doing in the community. His office graciously set up an appointment for me to meet with Senator Waugh.
You never know what the new day will bring. We can plan ahead our intentions for the next day, but unexpected or unwanted obstacles may present themselves. This happened to me last week. I went to bed Sunday evening with a game plan of what I wanted to accomplish the following day. When I opened my eyes Monday morning, I knew the prognosis for my day was not going to be good. I was immediately nauseous and grabbed the bathroom trashcan. I proceeded to dry-heave for more than two hours straight. I was so miserable and my stomach was on fire with pain. I hate vomiting, but I just wished that I would in hopes that I would feel better. I finally threw up and knew what I had to do next.
“Pink is pretty. Pink is bright. I made a decision to live and fight.” – Breast cancer survivor slogan
On the evening of February 4, 2010, I stood at the head of a long table in a room at the Elmwood Mansion in York PA, about to share my journey to the P.I.N.K. (Power In Knowledge) group. Surrounding the table were breast cancer warriors. Some of the women were in remission, while others were “in the trenches” battling cancer. Clothing did not reveal those who were in the midst of breast reconstructive surgeries. Most of the women had hair, while a few did not. From my viewpoint, I would have never known these women were battling anything. They exuded strength and happiness that was quite commendable.
Were you recently diagnosed with PKD? Living with PKD? Have a loved one with PKD? Looking for hope and inspiration? Welcome to PKD Will Not Beat Me! My mission is to provide Positivity, Knowledge and Determination as you navigate your individual path in life.
This is PKD Will Not Beat Me’s first blog post shared on PKD Connection, however PKD Will Not Beat Me launched on June 21, 2012, with its first blog post Positivity – Knowledge – Determination. Today marks my 112th blog post.