Who are you? Who am I? | Week 17

May | Health and Fitness | Week 17 | 4/30/2023

A commentary on chronic illness and the value of good health

Let me kick this off by humbly quoting myself. In an essay entitled Black Hole, published October 2021, I wrote the following, "Black holes are invisible to the naked eye. They can only be detected by their event horizon or their proximal distortion of reality. In that way they are the perfect analogy to chronic illness. Much of chronic illness is internal reality, invisible to the world, only partially realizable by external indicators. For as long as I can remember, I've battled the gravitational pull of my disease - desperately trying not to fall too close and slip into the abyss." 

When one lives with chronic illness, which at some point in their lives most humans will, it is as if you have poor vision, but you've lost your glasses and cannot find them. For most humans, both literally and metaphorically, the majority of their life is spent with 'good vision'. Then, as they age, they descend into 'poorer' vision. They recognize the decline in real time and mourn the days when they were healthy and invigorated. For most, it can be chalked up to the natural lifecycle, which relieves the brain of dwelling on the profundity of such a stark change, instead focused on mitigation, a strategy more practically useful. These age-related chronic illnesses are things like metabolic syndrome, cardiovascular disease and Alzheimer's. However, for some humans like myself, we are given a visceral, real preview to life's natural decline with the affliction of adolescent chronic illness. These types of chronic illnesses include Type 1 Diabetes, Crohns, Rheumatoid Arthritis and hereditary disease like Cystic Fibrosis and Sickle Cell Anemia. Of those individuals dealt this card of hands, some will find proper disease management and may even achieve remission, to once again reclaim 'good vision', getting decades of life back prior to any age-related decline. I am here to tell that tale. 

Before I begin, let me caveat, for those of us living with chronic illness who have achieved partial or full remission through surgery or medication, there are two concepts to comment on. [1] Life changes. Remission may mean relief from symptoms, but a 'normal' life is in some ways permanently out of reach. There are physical and psychological quirks. For Diabetics, insulin must be constantly administered and lifestyle alterations are crucial for survival. For sickle cell and cystic fibrosis, no matter the treatment, symptoms may persist or flare from time to time. Myself for example: I must watch my diet closely, administer medication every 4 weeks, supplement with extraordinary discipline, and remain within close proximity of a restroom about every 3 hours. Some days I wake up with aches and pains, battle scars left over from a decade long fight. I am in 'remission' but my interaction with life is not entirely normal. [2] Life could change. This psychological monster-under-the-bed is even more impactful than the practical application of living with chronic illness in remission - you know it could change at any time. You're intimately aware of the fact that you could wake any night for the rest of your life, to the deeply unsettling wave of crippling subversion, as your immune system begins to wage another war of epic proportion on your own tissue. The medication could fail. The surgery could malfunction. The disease could return. Hell could return. 

These are the negative consequences of that 'preview' into old age, that I mentioned. Let me tell you about the silver lining, the gifts to the proverbial curse - [1] wisdom and [2] gratitude. 

In the Finance world, obtaining potentially beneficial knowledge of something which other's do not have, is called Arbitrage. You could say that the knowledge I have relating to the mantra Health is Wealth is life-arbitrage, as it provides fuel for diligence in maintaining my physical and mental health. This isn't incorrect, it's just too narrow a view. Wisdom is a body of knowledge and experience, instantiated into principles, which fundamentally changes how one interacts with the world in a profound and positive way. My knowledge and experience isn't just arbitrage, it has become wisdom. Surviving 10 years of constant battle inevitably creates wisdom. Just ask Miyamoto Musashi, the dual wielding samurai who survived over 60 duals and went on to write the Dokkodo. This wisdom enhances my long term decision making by equipping me with an intimate knowledge of suffering and delayed gratification. It is a reminder of what could be worse, when life isn't going my way. It is the most powerful of perspectives about what matters.

Gift number two is gratitude. 50 years ago I would have died in that hospital room at the age of 17. 30 years ago I'd have been given a permanent ileostomy. And 10 years ago I would not have achieved remission from my Crohns utilizing Stelara. There is much to be grateful for in my own journey with respect to medicine and technology. There is also much to be grateful for during the course of an average day, without suffering, pain and overwhelming anxiety. The sunrise in the morning, waking me from a restful night of sleep, is a stark contrast to the restless nights spent on corticosteroids. The French fries and beer on Friday night, which for many is a simple occasion, is for me a cause for celebration. The weekend 5k with friends is for most an accomplishment, but for me a miracle. Gratitude is elicited by the sheer nature of juxtaposition to my former life. Even more than that, I find gratitude in the mundane and normal activities that haven't changed pre or post remission, activities like driving, working, conversing, and socializing. Not long ago these activities would have pushed my energy reserves to the brink, or been a source of angst given the difficulty maintaining posture, affect, and attention. Nowadays, I find solace and enjoyment in routine, in the simple course of a day, which so staunchly contrasts a previous state of being. 

I've drawn some very important understandings from this journey. I should utilize my wisdom. Health truly is wealth. The gift of good health is finite for us all, and the supplanting of it is imminent. At best, we can hope that aging is mild - that when take our place in a precedent as old as time, biology will treat us with grace and ease. But we do have a part to play in maximizing that possibility. It involves vigilance over our de facto good health. Take it from me: I have ventured into the abyss. I've felt the depths of seemingly endless suffering. But I'm here to evangelize the good news - for most, we're granted something auspicious, something divine - the body, in all it's glory and magnificence. Do not take it for granted. Stop to appreciate an easy breath, a restful night, a pleasant conversation, and a sunset closing a day without problem.