Peoplefrequently say, “I don’t know how you do it?” – referring to how I deal with terminal cancer, pain (intense health protocols) and the constant threat of death. I didn’t know how to answer until last Thursday after a co-facilitated (wife and me) Paradox Cure process of exploring how I deal with it.
The short answer— I am not dealing with it in a good way. I cut myself off from my body, desires, dreams and community. I enjoy little and have hardly anything I look forward to. I have a sliver of the will to live that I use to have. I am NOT suicidal, I just am not inspired to live. I feel like a shell of a person.
MY LONG ANSWER: This is 1300 words, but I need to share it all together.
For 29 months I have lived with the specter of death, my own health crisis coupled with daily exhaustion and debilitating pain, multiple financial crises and intense health protocols to just survive.
—SPECTER OF DEATH
Not only did Talyaa have less than a few months to live when she was diagnosed in July 2012, the probability of living even a year was around 4-7%. Just about everyone with her stage 4c melanoma with brain metastasis gets tumors everywhere in the body, which overwhelm and kill the host within an average of 4.3 months.
At any point Talyaa could stop being the miracle she is from following through on her intense healing protocols and treatments. Rapidly she could do what all the doctors think should happen – die within months from being overridden with tumors.
Even though we have beaten those overwhelming odds, they exist everyday. And now, with a new tumor appearing and growing to 1.2 cm within just 6 weeks in the brain, the likelihood of dozens of other tumors invading her brain within a few months has dramatically risen.
On top of that her brain is swelling with her current tumors – she could have a seizure in the middle of the night and choke on her tongue and die. Often I fight my urge to check on her at night or in the morning to make sure she is still alive.
—MY HEALTH CRISIS WITH DAILY EXHAUSTION
On top of everything I have been dealing with, I have experienced my own health crisis – medical test results show stage 3 adrenal dysfunction (strong fatigue), 4 fused vertebrae, 2 metal full hip replacements that give me heavy metal poisoning daily, debilitating symptoms that present as if I have Lyme disease (and probably do though I can’t afford testing to verify), structural challenges where my knees give out, my shoulders and neck seize up, or my lower back gives out where I am crawling for 2-3 days in excruciating pain and my wife needs to cook for me and bring me a jar to pee in.
It is worse than this, but suffice it to say I see a possible future where I can’t dance Tango anymore (already haven’t danced in 10 months because of how debilitated I am), need several surgeries, end up permanently disabled and have to be cared for at an early age.
—MULTIPLE FINANCIAL CRISES
With my ongoing health crisis (which pales in comparison to Talyaa’s cancer) and because cancer destroys Talyaa’s ability to do much of anything, we have been in multiple financial crises.
AND I have failed to ask for the massive funds we have needed, failing to secure needed financial resources. Because of lacking money, Talyaa still has 7 mercury fillings that degrade her immune system, helping cancer to grow. We have had to stop or lessen several treatments and not do other more costly treatments that are shown to be effective.
We still have to choose between rent, food and cancer/ health treatments. It got so bad that in July of this year we had 2 ½ weeks left where we didn’t have a place to live and only enough money to live in a motel for a week.
In October we found out Talyaa’s Medicaid insurance required $1409 every month of a co-pay up front for services, so we waited until December to see doctors about her tumors. Luckily from donations and one large benefactor, we have been able to make rent, buy food, buy additional treatments and see Doctors in December. January begins another month of what do we choose between?
Stress from our continued financial hardship over 29 months has wreaked havoc on our health and quality of life.
And I don’t seem to have found easy or appealing ways to ask for donations. My best effort is simply being direct and authentic – if you are moved to aid us, click on our PayPal donation link. We need the help ($5,000+ monthly):
—MY 2 ITEM BUCKET LIST
Seven months ago in a transformative experiential workshop (ISTA), in preparation for a mock death ritual, we were asked to write down a bucket list. Everyone had many items on their list except me. I only had 2 things – to let my friends and Talyaa know that I loved them, and to love them.
The only thing that I have added in 7 months since ISTA is to aid people in overcoming their own pain to heal, grow and transform through my dharma – my Paradox Cure approach.
—MY DEEPER TRUTH ON LIVING
Through my own body’s increasing debilitation, and after 29 months of working intensely while exhausted to help my beloved survive cancer knowing the horrible odds of dying, I realized I have cut myself off from living to try to not feel my daily pain and suffering.
The consequences? I don’t enjoy much or look forward to much, and I have found myself often asking why am I living, other than for the hope that Talyaa will survive? Would you want to feel if all you have to look forward to is your partner dying and the pain of becoming more debilitated in your body and mind?
—WHAT I WANT
To stop suffering alone and to claim my deeper truths (practicing what I preach with my Paradox Cure approach) so I can stop resisting, and perhaps become inspired to live way more than I am now.
I want to know I am not alone in my suffering, but I think I mostly am.
I want to know if sharing this post of my struggle has made any positive difference. Has it? For over a week I wrestled with the question of whether this post would be any contribution to anyone reading it.
A bigger question I ask myself is does my life make much of a positive difference, other than to my beloved wife? I want to live in a way that my life makes a positive difference to others, but in my challenges, I do so much less for others compared to my deep desire to do more.
Another of my wants is that by reading this some of you might empathize / sympathize with others a little more in your lives that are having a hard time, depressed, lost some of their will to live, or are caregivers for those with cancer or another disease.
Lastly, perhaps one of you has cut yourself off from living, and by realizing it I hope you might seek to connect with yourself, others and life a bit more.
Know that I have much gratitude in life for a lot – the fact of my privilege as a white American male and all that that grants me, not least of which is the right to free speech and to vote, to not live in daily fear of genocide, rape, robbery, corruption, and access to clean water, indoor plumbing, a modern apartment, health care etc.
And with all my gratitude I suffer, as many do. Please be kind with any words you write. I am terribly raw and hurt. Love & Hugs