Remember it’s fun to swim and dance with glee, cause when you do it sets you free. Truth be told, if I may be so bold, being silly makes me smile. It gets rid of the waste by making my day taste sweet and tart as it warms my heart. It is especially great when its late and we feel old and cold. We can scrape off the stress as we are impressed by the marvelous melodies of our magnificent moments. So as you sit, sleep or stand wiggle your feet like you are listening to a band. Shift your hips from side to side like the electric slide. Laugh, love and live your life to the fullest. Use your clever mind and pull joy’s lever and surely you will have fun forever!
A few weeks ago, I journeyed to the mystical land of New Orleans. I went there to meet with a neuroendocrine specialist. This was supposed to be the visit, the one that would give me a leg up on the future.
We got to the office a little before eight o’clock. My appointment was scheduled for 8am. The doors were locked, for a moment I thought perhaps we were there at the wrong time. After hanging out in the hallway for a bit, a staff person arrived and unlocked the door. The waiting room was decorated with all sorts of zebra patterns, it seemed like a fun looking place. There was a door that led into what appeared to be an infusion room. As I was looking around the receptionist had me sign some stuff then handed me paper work to fill it out. There was an abundance of things to fill out.
So much to fill out I don’t know how they expected me to get it all done. Ultimately, I prioritized what was important to me, which was getting the answers I drove all this way to get. After a few minutes, we were moved into the examination room, in hindsight I felt rushed. The vibe was like the staff or the doctor had some place to be and were running behind.
The doctor was friendly, he seemed like he was interested in listening and answering questions. But the red flags began very early in our conversation, the first being that he didn’t know that we had just driven hundreds of miles for this appointment. Another was he hadn’t looked at my medical history, my prior tests and scans or even my surgical notes.
In what I hoped would be the opportunity to explore my disease with a specialist became yet another unfortunate experience. Another unfortunate moment stacked onto a pile of stinky disappointments.
Abuse manifests in many forms. This was an actual statement made by my caretaker Ino while I was enduring chemotherapy.
It manifests in many ways. The abuse of my caretaker began as manipulation, then became abuse, followed by exploitation and finally neglect. It was Ino who told me I couldn’t take care of myself during chemotherapy. He was the one who put the fear in me to find someone to be my caretaker. It was he who created the the problem and it was he who swept in as the hero to fix it.
A Story of Horror
I stood before the sink staring into the mirror. My hair was in the steady process of falling out. I was filled with so much sadness, so much terror, it was this moment I realized how much it was wrapped into my identity.
Running my hands through my hair I watched clumps of my head fur stick to my fingers. I noticed Ino at the door peering in at me.”Whats the matter?” he asked.
I turned and showed him my hands. He paused for a moment, perhaps spending a second to the think before speaking. “Man, You’re going to look stupid once all your hair falls out.” Then he stepped from the door and headed into his bedroom.
Later than evening after finishing a bout of nausea and vomiting he and I were standing outside. It was a cool slightly breezy night. He pulled out a cigarette and slid it between his lips. Nonchalantly he lit it and took a puff. As he released the cloud of smoke he said. “You know man, you don’t really have it that bad.”
I looked at him and watched him take another drag and exhale. “If you really look at it, my life is much worse than yours…”
How did Ino become my caretaker?
Before I started chemotherapy “my friend” Ino told me that I wouldn’t be able to take care of myself during treatment. He said I would be a danger to myself and if I wanted to survive I needed someone to live with me.
This terrified me, I had just survived the removal of my lung and I panicked. I wasn’t about to endure that hell just to die because I didn’t have someone living with me. Frantically I tried to find someone to be my caretaker on short notice. I found no one, and no one suggested I seek a professional caregiver for support. It was then that Ino flew into save the day. He said he would be my caretaker if he could live and eat at my house for free. I agreed and he moved in.
What was it like living with Ino?
Living with him was one of the most emotionally traumatizing experiences of my life. He took a time of my life that was already unbelievably horrific and made it nearly impossible.
In the two months he lived in my house he loaded the dishwasher twice and changed the cat litter box five times. He never prepared any of my meals, do my laundry or clean my house. He charged me to transport me to the grocery store, doctor’s office and hangout spots. The arrangement was that he would clean the cat litter boxes every two to three days, do my laundry, keep the house clean, prepare my meals and provide me transportation. In exchange he could eat my food and live in my house for free.
What did Ino do while living with me?
- Told me that I was weak and frail. When I would attempt to go for walks he would tell me that if I went for a walk I would hurt myself – when I asked him to walk with me he refused, saying he was too overweight to exercise.
- He would insult and berate my friend Tony and his girlfriend behind their back. Telling me that they were worthless and that I shouldn’t hang out with them.
- Many evenings he would speak poorly of of my significant other and tell me that I should break up with her.
- He would yell and scream at the animals.
- On many occasions he said that I should give him power of attorney over me.
- That I should write him into my will, giving him all of my assets.
- When I was put on disability he made it clear that my disability money was ‘our’ disability money. Often times he would attempt to persuade me to pay his car or insurance payment.
What made me realize Ino was abusing me?
Chemo brain is a very real thing. It makes you forget things, you can’t think right and it puts you in a child like state. This is what clouded my ability to see what he was doing to me.
This all changed one day when I asked him to drive me to the store. He asked me for gas money and when I gave him $10 he got angry and demanded more. Ino was furious, telling me it was insulting that I only gave him $10. Stating that 90% of his driving was carting me around.
Instead of reacting at that moment I waited till I got home. I started figuring out exactly how much money I was spending on him. I discovered it was cheaper to buy a new car, pay its taxes and have full coverage insurance than it was to pay him for transportation.
After realizing his abuse I confronted him. I told him that if he wanted to continue living in my home he would have to pay rent. He responded by threatening to kill himself. Then told me that because he was suicidal he could not pay rent.
I told him that he couldn’t live in my house if he was suicidal and said that if wanted to stay he would have to seek professional help. I paid for him to see a mental health professional and after his first visit with them I told him that the rent was still due.
How Did it End?
I had not see him for several days and I was concerned. There were many methods I used to contact him, but it wasn’t till this text message that I got a reply.
This is the text that I sent him:
“I haven’t heard from you in awhile, I am concerned for you and hope you are feeling alright.
Times are very hard for both of us right now. I love you and I want you to be healthy, I don’t want our situation to get in the way of our friendship.
I hope you are alright and are having a good day.”
October 29, 2016
He replied two minutes later in a text:
Please delete my number and do not contact me again. Thank you.
October 29, 2016
Later that day I would find out that he had moved out of my house in the middle of the night. I wasn’t there when he left, which I believe was a good thing. Nothing good would’ve come from that confrontation.
In the end I earned a lot from this experience. Through him I discovered how to set and maintain personal boundaries. It showed me how to recognize abuse and stand up for myself. This was truly the very first step in my journey for personal advocacy.
If you would like to continue the journey of reading the tale of personal advocacy take a look at these links.
I’m feeling better today, I think my nausea spell may have been due to stress. Perhaps I’ve focused so much on the future, I failed to live in the now. As I think about it though, I’m starting to realize that maybe the stress is just another symptom, maybe the real problem is fear.
An ever present force in my life has been fear. Fear that the things I’m experiencing now will always be the way I experience them. I’m a human and like any human I love the experience of experiencing life. Nearly every ounce of my force is being spent on fighting this fear.
To combat it I’ve been running myself ragged researching everything I can to make things better. Unfortunately I don’t have enough energy to really make any meaningful improvements. To get that energy I have to make sacrifices and work hard.
This week I started physical therapy and it was rough. The pain I experienced afterwards contributed to the stress. I know now that I worked myself too hard. If you are having a hard time walking for days afterwards I think its a clear indication that the intensity was too high.
I’ve been doing pulmonary rehabilitation, which has been difficult. The challenge hasn’t been to the degree of the physical therapy but it taught me quickly what my limitations are.
On Monday I will be meeting with a nutritionist. I have wanted to have a healthy life style for a long time. The addition of a clinical nutritionist will become a valuable asset as I move forward in my pursuit of total body wellness. Food is the first medicine.
Next Friday I will be meeting with a neurologist, I hope he can shed some knowledge, maybe help me find an ounce of comfort in my neuropathy battle.
I do my best to be positive. It isn’t beneficial to compare my physical ability to my old self. The best I can do is push forward, be healthy and have realistic goals. My physical goal is to one day run a mile. My running goal, like every other one requires I take it one step at a time.
It has been fascinating to witness the degree of strength and endurance I’ve lost. I watched it was slip away, but apparently more of it drained away than I realized. The process of learning how to live with my new body has been an ongoing process. Each step I make is another success, another tool in succumbing to this new life and living life to its fullest.
Life can easily become discouraging when you compare your new existence to the old. Though I think it is important to reflect on the past, it is more important to live in the moment. Live in the moment with an overlay of the positive moments from the past.
Everything works until it doesn’t, or because we stop doing it. The maintenance of change can be enduring, but necessary if we want to achieve a desirable quality of life. As I reflect on my morning of… discomfort, I am able to spot areas of my life where I have not been using all of the tools available to me. I could blame anything or come up with some kind of excuse as to why, but that’s wasted energy.
Instead I need to focus on positive endeavors, overlay powerful memories and reprogram my perception. Neurolinguistic Programming (NLP) was my greatest ally during chemotherapy, it took horrendous moments and made them trans-formative ones.
Maybe I’m too focused on my neuropathy. Perhaps I’m working so hard to succumb to it that I’m overwhelmed by it? Overwhelmed by the sensations and lack there of. I’m thinking that the nausea was a manifestation of my terror, the fear that it is going to be permanent.
If you would like to read more about my thoughts on stress, advocacy or what my journey through cancer has been like, feel free to click on this link.
February 12, 2017 Vlog
The focus of this Vlog is your feelings. Throughout my journey I have been told by so many people that I should feel this or feel that. Ultimately what you should be feeling is whatever your are feeling right now.
Thank you for taking the time to listen to my Vlog. If you would like to read what I wrote I have it below. Thanks for listening.
Feel your feelings
Hello my name is Shawn White, but you can call me Shawn White.
This is my vlog, this is your blog, this is for anyone who is exploring their heart and strumming its strings.
It is a place where I can express my feelings, to swim through the open waters of emotion, and find my way to warm shores.
I want to find a beach so bright with golden rays that I can revitalize my heart. Sand so soft and smooth I can dig my feet deep and anchor myself in place. A place I can enjoy the cool slow moving wind and enjoy it until the end.
This Vlog is not about what some would call sad, or bad. It is not about smiles or laughs. This Vlog is about life, it is about experience, it is about being human.
Throughout my cancer journey I have been told many things. Ultimately of all the advice given to me, the greatest given was by a man whose name starts with the letter S. He is a wise gentleman who has inspired me to accept and explore my feelings for what they are.
From his words to mine, I believe the greatest advice I could give, is to follow your heart like a toucan’s nose. Whatever you are feeling is the one you should know. Live your life, feel whatever you are feeling. If you are angry, be angry, if you are sad, be sad, if you are thinking about death, think about death. Stop refusing to experience your emotions because it might make someone else feel comfortable.
Live your life, feel your life, embrace the experience of existence.
If you would like to read more about my thoughts and our journey through cancer feel free to click this amazing link!