Before the experience of becoming chronically ill happened I never thought about my health a lot. I imagined that one day I would grow to be an old man and reminisce about whatever feat I had accomplished in my youth. I thought about my health...but not beyond the physical or obvious aspects. I watched what I ate, exercised, and tried to not drink or smoke too much. But I never thought about anyone else's health either. I would simply wake up and go about my day...in my own world where the dreams and ambitions were bounded only by my determination. That was until I got Lyme disease...
The initial symptoms of joint pain and fatigue seemed all to common. I thought nothing of it. It was not until the nerve pain set in that kept me up for nights in tears and anguish, wondering why this was happening? A pinched nerve? In my arm? Ok...I practiced my instrument a lot...maybe...but then the right arm? Then my leg? pinched nerves all over my body? All with no answers...Not even a speculation, just a wait and see...I will never forget the day when it hurt too much. When the act of bending my arm to brush my teeth was far too painful to stand, or the car ride to the subway where once I got my food I could not lift up to my mouth...so I just shoved my face into the food. Those memories seem like a dream, or nightmare for that matter. Usually people would always say "It's not that bad, it won't be the worse thing ever, that only happens to a small few....you will be ok." I heard that a thousand times...and I kept losing faith in it more and more each time I heard it. I will never forget that day, or the months after. The hospitalizations, the pain, the anguish, tears, fear, suicidal thoughts, the experience of losing my mind, being fed, being bathed, becoming a shell of myself. Laying on the hospital bed wondering if I was dying...what had I done? What can I do? What will happen? What haven't I done? Even resolving myself to death. This was ,my introduction into the world...my journey down the rabbit hole. The world of the chronically ill.
I had never been into a doctors office and been told "I don't know" before...let alone mis or undiagnosed. Little did I know that there are hundreds of thousands of people who live in this world. A world where their body is no longer a vessel for their actions and minds, but a prison. A prison that confines you to an endless array of pain and torture. To put it bluntly your body never shuts up. It always talks to you, screaming pain, numbness, tingling, anxiety, noise, dischord, and depersonalization. There is no peace, your piece has been forever shattered. You think about the days when you woke up and just thought about your next move...That is the world you leave when you journey down the rabbit hole. It is unfortunate that not everyone can understand what it means to do this. The world would be a better place if they did. But who am I to criticize? I never thought about cancer patients, MS patients, or others...I thought about the poor, the hungry, and I knew there were sick people, but they never crossed my mind.
But now it is different...I took the red pill and I am on the journey, and this hole is fucking deep. A world where people are ill for life, where they can never attain what they want for themselves, are in a constant struggle just to be. I thought I knew what hardship was, keyword thought. A world where everything is a business and everyone is a profit. Doctors are no more than pill pushers manipulated by big pharma, medical researched is skewed by who supplies the funding so that insurance companies and the like do not have to pay for treatments that are too expensive, potential cures or life saving treatments are buried because they hold no potential for profit. We are talking about medicine right? Even the insurance companies, the doctors, the drug reps....they get sick too right? They get cancer, HIV, Lyme, MS, Azlheimer's, Hepatitis C....so why do they contribute to the mess? I can answer...arrogance...They simply think they will be invincible. I once thought this way as well....why wouldn't you? No one suspects it will happen to them....but illness does not discriminate, and people will pay for the choices they make in the health care business. But since learning this truth...this great injustice in society and crime against humanity, I feel a responsibility to scream it to the skies, let everyone on earth know the evil that goes on in front of their eyes, that could happen to them, that they can help change....But no, they don't what to hear it. They simply say "Yea yea...what's for lunch?"
It is sad that the only way for most people to understand something is to go through it themselves.
