I’m an Aries by means of and thru—daring, bold, fiery, and assured. At the moment, March 27, marks my fiftieth yr on this planet, one thing I may by no means have imagined. I used to be recognized with an undetermined sort of muscular dystrophy as a younger youngster, and docs informed my dad and mom I wouldn’t reside to turn out to be an grownup. My immigrant dad and mom cried after they heard the information. Despite the fact that this information was devastating, they by no means handled me like a fragile egg about to interrupt. The truth is, as the primary born youngster of three ladies, I had a variety of obligations and expectations which solely strengthened my Aries tendencies.
Whereas my dad and mom at all times supported me, I knew at an early age that my life was completely different. And since they didn’t sugarcoat something to me, I had a really clear sense that my time was restricted. In my bed room, with a scary clown ceiling gentle above me at night time, my vivid creativeness questioned how I’d die–wouldn’t it be a sluggish and painful demise? Would it not be quick from a medical emergency? Understanding my muscle tissues are progressively weakening as I struggled to stroll as a toddler and breathe as a teen at all times saved demise on the forefront of my thoughts. Believing I had no future formed me in methods I’m nonetheless processing at present.
Birthdays have given me pause for reflection, particularly this yr. I lately checked out an image taken from my fortieth birthday celebration and couldn’t acknowledge myself. I wasn’t carrying a BiPap masks as a result of on the time I solely had to make use of it intermittently to help my respiration. I didn’t put on a belt throughout my chest which I would like now as a result of my higher physique has grown weaker. I recalled being exhausted after the occasion. After I obtained residence, I instantly put my masks on and turned on the ventilator. It was a candy aid. Shortly after I began to make use of it for longer intervals of time till I started utilizing all of it day and night time. I didn’t see it as a failure of my physique however a part of the inevitable downward slide towards my remaining vacation spot.
Two years in the past, I skilled probably the most harrowing and traumatic series of medical crises that led to weeks in the ICU which left me with out the power to talk on account of a tracheostomy, a tube within the throat linked to a ventilator, and the power to swallow and eat or drink by mouth. This resulted in needing a feeding tube that goes into my abdomen and gut. Throughout my hospitalization, I additionally misplaced sensation in my bladder so now I urinate by means of a catheter 4 to 5 instances a day. These weeks have been like a fever dream–I couldn’t sleep for days as a result of each time I closed my eyes I feared I’d by no means get up. I used to be in super ache and will solely talk by mouthing phrases to my sisters or scrawling on a pad of paper. Within the few moments once I may write, I outlined directions to my sisters on what to do if I didn’t make it. Was this the way in which I’d die? It was my closest brush with demise in a collection of many however I lived to inform one other story. However I used to be decided to claw my method ahead to a different day.
I’m nonetheless adjusting to life once more in a brand new physique and lifestyle that requires a substantial variety of assets, provides, and equipment to remain alive and keep away from institutionalization. The quantity of upkeep and administrative work it takes to be disabled in America has additionally taken a toll—the extra out-of-pocket home care that I would like now’s $840 a day. With the donations from my GoFundMe dwindling, managing and directing a workforce of caregivers for my every day actions requires a variety of forethought and clear communication. Being disabled in a nondisabled world is precarious, one in all fixed adaptation. I remade myself into a new cyborg form that still has a voice, a breath, and a will to reside.
Proper now, as my physique is at its lowest level, I’m on the top of my powers. I’ve by no means been extra comfortable, free, and resolute on what I need to do. As I flip 50, I’m full of blended feelings. I dread what lies forward if I attain 60. Will this be my remaining decade of life? Possibly it’s okay that I can’t predict what’s going to occur or what the long run will maintain since nobody can. What I’ll do is spend my time, power, and labor deliberately with the individuals I care about. I’ll host dinner events, make chili crisp for my associates, and spoil my cats Bert and Ernie. I’ll treasure each breath pushed by means of my ventilator and be grateful to have a uncommon night time’s sleep with out ache. And most significantly, I’ll attempt to relaxation and take care of myself.
Loss of life stays my intimate shadow associate. It has been with me since delivery, at all times hovering shut by. I perceive in the future we are going to lastly waltz collectively into the ether. I hope when that point comes, I die with the satisfaction of a life well-lived, unapologetic, joyful, and full of affection.
