Understanding the Emotions of the Disabled &Medically Fragile Home (Part 1)
It is difficult to express what it is like to live as a disabled person. To describe the plight and daily life of households where every member is either stricken with illness, physical handicap, have a significant cognitive disorder or mental health condition. Many of us are too overwhelmed to explain it well enough for strangers to understand. There is a need to better define the state of health’s hope and illness’ despair as they exist in our homes.
If we can’t get outsiders to truly grasp the crisis with urgency, the aid will continue to be dispensed in manners insufficiently accessible and/or useable to us. Everything from the forms that are developed and blocked out, to the manner in which communications are approached. The process needs reform to meet our uniquely disadvantaged households to obtain aid and rescue.
So I offer these analogies using nature as a way to paint the picture we desire others to see. Nature is a source of healing and solace to me. It has and will always be an intimate part of how I view life. No matter the situation, nature has meaning and it is infinitely wiser than humankind.
I was raised in Maine, near the richness of the Big Woods. Arcadia National Park was a summer haven and became rather sacred to me over the years. There are places in nature that ignite feelings of awe. The coastal mountain peaks of Mt. Desert Island Maine are easily one of my favorites.
The passionate kiss between the high peaked deep forests edge and grand ocean rock cliffs would leave any two lovers fulfilled. It is the display of earth’s greatness that carves an impression in the mind and leaves feelings of amazement.
The strong ocean breeze, the feel and smell of the salt water in the air, echoes of gulls, the calls of moose nearby, and the type of blue only Maine’s cold northeastern sky can paint.
Down the summit, descending into the lower rocks of the shore, you come across a pulsating, vibrating cave that rumbles and roars with each crash of waves called Thunder Hole. It is as if the sea itself is inhaling and exhaling with each swell of water.
Being in the presence of such beauty, I am reminded how small we are. It inspires the heart to live to the fullest. Every time I got to sit and listen to the Thunder Hole recreate the powerful crackle of thunder and lightning, I was fueled with hope. Hope that made me push harder, reach further, and not succumb into my heartache back then. I embraced a future as alive and vibrant as the nature surrounding me. That is what it is like to have one’s health be fully intact and unhindered by injury or sickness.
Good health is freedom, magical, full of hope and power to change your life and everyone around you. Good health is too be cherished, adored and protected with all of one’s might. There is not a single bad thing about that state of being.
However, to be chronically ill, in a fragile disabled body, or mind, and/or a physical handicap that is not able to be adapted enough for independence, and you see your health quite differently.
To live in such a state is like having spent a glorious summer on Mt. Desert Island, listening to Thunder Hole’s might, breathing in natures refreshing salted air, just to awaken the next morning in a stagnated marsh, infested with biting black flies and blood sucking leeches that you can’t seem to ever fully detach.
To be in a ravaged broken body incapable of healing itself is no different than being on a bike stuck in tenth gear and all your destinations are up a steep incline.
To be in the position of caring for others whose complex medical needs compete for priority over your own declining health forces you on a path littered with potholes and bulky debris. To navigate that once glorious mountain trail, you must sacrifice your basic human needs, become betrothed to self-neglect and remain smothered, stifled with heavy smog. Far, far away from the refreshing salted air that once kissed your skin and cleansed the lungs. All that remains is the despair born from depression and anxiety illness brings with it.
You are no longer free to roam the seashore or gaze up to watch the gulls. You can’t hear their calls from the sky, nor feel the sand between your toes, because a home where all members suffer some form of fragility are bound to it. Bound and tethered in place.
You endure the sadness of watching everyone else live their lives. You watch others walk in the sand, and gaze up to the sky. You hear the laughter of others whose health blesses their days with hope.
That is what it is like to live a life of one medical crisis to another. The state of being a captive to a body that can no longer carry out what the mind tells it to do, and at times the mind can not make sense of up or down, right from left. The mind gets torn down and battered with the pain of isolation, fear, abandonment, and despair. Your voice grows weak, your words become labored and you end up in a condition where no one understands even if you get noticed at all.
Regardless of that roadblock, there is an urgent need to educate those living on the outside. Hidden within our input and guidance is the key to developing effective programs and agencies designed to help us. It’s not in the conference room of a board of directors who have never suffered such states or who fail to ever make contact with households directly to learn.
With that shared knowledge we can script a new story. I can return to the nature that breathes such life into me. We can do more than add a railing to a trail, or ramp to a building. More can be done so that all medically fragile households can be the ones gazing into the sky, and listening to the gulls. Families can begin to walk the path of freedom, and at last, hear the thunder explode like the new found joy bursting from our hearts.
With reading and hearing such hard words, is there any hope for change? Can we really partner together to improve such difficult situations when health is not something easily controlled? The answer is yes.
Hope comes in many forms. It is true, the comprehensive aid required to deliver our families out of danger and distress requires intensive intercession. There are no shortcuts in assisting a medically fragile house from the starting point of crisis to the ending goal of stability. It does require long-term aid, patience, and willingness to commit to that household and its members.
However, it doesn’t take much to make an immediate positive impact on hurting families, those stifled by illness and burdened by disability. Small gifts such as hot meals, gift cards, delivered groceries, house and laundry service, home health aides, letters of encouragement, short visits, and in general your able hands, makes a tremendous difference in helping fragile households recover.
The first step has now been started. The process of sharing and listening lays the first few foundational beams to a much-needed bridge, that will close the gap between our homes and the aid so desperately needed.
If you would like to know more on how to assist our families please contact us anytime at firstname.lastname@example.org Want to share your story? Have photos, poems, art, testimonial to share? You can submit them to email@example.com
Coming Up Next- Part 2: Understanding the In-Home Needs of the Medically Fragile Household