“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
The eternal truths imparted in this one sentence form the foundation and inspiration for every civil rights movement in the history of the United States.
This Independence Day, these weighty words defining our unalienable and God-given rights to life, liberty and the pursuit of happiness remind me that freedom and independence apply not only to life and death decisions but also to the pursuit of that first-morning cup of coffee.
The two are certainly not equal in regards to human life — but I would argue that both are important. For some, independence can be measured by one’s ability to make and enjoy that first cup of joe.
My daughter, Johanna, loves coffee and anyone who knows her knows that. Her love for coffee began a few years ago when her brother started roasting and selling beans for a local coffee company.
My son was still living with us at the time and we were all fascinated with the process he went through for that first cup- grinding beans (which he had roasted), pressing, pouring- an involved morning ritual which I confess renewed my love of coffee.
Jo was enthralled with the coffee — most importantly because it was another way of connecting to her big brother.
At first, I was a little concerned about the effects coffee would have on the chronic migraines which have afflicted Jo as a result of this neurological disease. But during one hospitalization, a pharmacist came to speak with me about the benefits of using caffeine to help treat the headaches and battle neurological fatigue.
Johanna’s eyes sparkled at this new prescription and her love affair with coffee began.
Thanks to the influence of my millennial son’s passion for coffee and his love for his little sister, we entered into the world of coffee grinders, presses, and pour-overs to follow this new treatment protocol at home.
It was great when my son made the coffee, but when he left home, I was left with a process that interrupted my quiet morning routine. Jo was eager and willing to help. I tried to include her as much as possible in the process which had become a right of passage for her as well as a tool she could use to combat the headaches. But unsteady hands and cognitive dysfunction make complicated processes difficult and sometimes even dangerous especially when it involves hot water and steam.
Enter the Keurig coffee maker.
At first, I was reluctant to purchase one because of the cost and the waste of those individual plastic cups. But the morning independence it afforded my daughter was worth it.
She quickly learned the multi-step process in pursuit of Jo’s cup of joe. It involves more than others can imagine and incorporates fine and gross motor skills, planning and balance which the rest of the able-bodied world often overlooks. This complicated task of making coffee gave my daughter a sense of independence and confidence. It was something she could do for herself with little to no input from anyone.
In Johanna’s recovery from this recent stroke and brain surgery, this simple task has weighed heavy on my mind as a symbol of what we’ve lost and a future goal to achieve. She now needs help to make her coffee and carry it to her seat. While there are other setbacks which are more concerning — her inability to walk unassisted and slurred speech which makes communication more difficult — making that cup of coffee means independence to Johanna.
Growing up with a rare disease changes a person’s view of “normal” and raising a kid under these circumstances means that life is very different than what you might have planned. But nonetheless, you get used to this normal life — brain scans and surgeries, therapies and equipment for daily living.
A person who lives a “normal” life and becomes disabled through illness or accident can easily become discouraged. A person, like my daughter, who has always known a life of illness and disabilities can also get discouraged if they are not encouraged to do what they can do independently instead of focusing on what they are missing.
We have found that the key to living a meaningful and independent life in the midst of these struggles is to respect human life as a gift from God and to find purpose in the difficulties.
Sometimes people with disabilities and those who provide them with care and support focus on finding ways to be included or fit into our society. Inclusion is important, but fitting in can be like trying to put a square peg in the round hole. It gets frustrating sometimes.
We’ve worked hard to help Johanna find her way to independence defined by what that means for her life and abilities. New York State has some great programs for people with disabilities, but even those programs tend to be a little cookie-cutter, designed to check off boxes towards standards of independent living.
The shift in New York State is to keep people living in their homes and assisting them to access their communities by providing direct support. This model works well for many people, including my daughter.
For Johanna, independent living includes stamping boxes at North Fork Donut Company and folding napkins at Love Lane Kitchen. It also includes putting her artwork on canvas and displaying it in a shed my husband and I renovated to become her art gallery.
When she’s up to it, Jo travels with me and speaks about finding purpose in the struggles. Just one month after this last surgery, Johanna traveled upstate with me to sing and speak to 200 women about living a life of purpose and faith in these trials. Though she struggled to the stage with her walker and her voice was unsteady as she sang, the message of hope touched everyone in the room.
Johanna has always had an optimistic view of life and eternal hope, despite the difficulties. But this time she notices the decline in her motor skills and speech. The little things — like making her coffee without assistance — and doing artwork in her cottage, signify independence to her even when she needs support. We are working hard to help her reach towards the goals again.
We declare respect for human life and liberty when we protect and support others in their independent pursuits of happiness — wherever they find them — whether moving through the community in a wheelchair or telling their stories in front of crowds of people or in that first cup of coffee made with unsteady hands.
Freedom, like beauty, is in the eyes of the beholder and in the hearts and minds of those who seek it even in the simple joys of life.
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