The key to living with vision loss is Acceptance, Adjustment, and Adaption. It is a step-wise process to living your best life.

Acceptance, Adjustment, Adaption

Acceptance of disease or disability is the most difficult.. Those of us with degenerative eye disease may deny, make excuses for not seeing, or avoid situations that demand we accept the limitations of our disability. Not accepting and not dealing with the loss of vision results in social isolation, loss of confidence, and unresolved grief. Acceptance means coming to terms with what is a new chapter in your life. Acceptance is ‘moving on.’ Things will never be the same, so what are you going to do now?

Adjustment is the next step after acceptance. Like acceptance, it takes time and resolve. “I accept that life is different now.” It is the resetting of your life. Life without ‘normal’ vision is very different. You need to depend on others more. There is some loss of independence. Activities like school, work, hobbies, and domestic duties seem more difficult and take longer.

Adjustment is doing these activities of daily living in a new way and understanding the limitations. Life goes on.

Adjustment is the psychological and social resetting of your life.  There are many factors that will affect how you adjust:  things like age of onset, rate and severity of disease progression, living situation, and financial concerns.

Coping is how we deal with the changes.  It is how we adjust and adapt  to the nuances of our psychological, social, and personal functional needs.  An individual’s coping mechanisms at the beginning of the disease are different from those at the various stages of the disease process.  Someone who loses vision suddenly will need to overcome the shock of sudden disability, while someone with a slow, progressive onset of vision loss may have years to adjust and develop compensatory techniques.  An individual with profound vision loss will need to work harder to compensate versus having to adjust to a milder vision impairment. 

One’s living situation, whether living alone or in a family unit, can impact the capability to cope, depending on the situation, either positively or even negatively.  Sadly, financial resources can impact the capability to cope.  While state and federal agencies provide some valuable services, those extras like electronic technology, transportation, and home assistance may be financially out of reach.

There are several emotional issues that can affect one’s capability to cope with a disability;

• Grief
• Depression
• Negative Self-Perception
• Loss of Independence

See: How to adjust to vision loss: The Adjustment Process

Adaption is utilizing skills, techniques, and aids that can help you move forward to a new normal life. New skills are needed for reading, activities of daily living, and independent mobility. Some new skills will come naturally, but others may require you seek the professional assistance of trained therapists. Adapting is using both optical and non-optical aids.

Optical aids are commonly things like glasses, magnifiers, and telescopes. Non–optical aids are adaptions like better lighting, increasing contrast, color coding, and talking assistants. It has never been easier for the visually impaired to adapt. Technology developers have recognized the needs of those with low vision and have brought to market digital devices for most every need. Video magnifies, CCTVs, computer accessibility software like text-to speech and speech-to-text software, head-borne digital magnifiers, and smartphone apps to aid us on the go, have all paved the way towards integrating those with visual disabilities to lead ‘normal’ lives.

In the End…

Losing vision may change your life, but it does not change who you are. But there needs to be a willingness on your part to accept, adjust, and adapt to lead your best life. This process can be slow and difficult. The steps you take and your attitude will determine your success. My father had a saying; “You don’t know unless you ask.” The technologies, online resources, and trained professionals are there for the asking.

He is a wise man who does not grieve for the things he has not, but rejoices for those which he has. 

Epicretus

Still Alice The poignant narrative of Still Alice, a film depicting the journey of a woman with early-onset Alzheimer’s disease, we delve into the universal themes of acceptance, adjustment, and adaptation to life-changing disabilities.

Still Alice is a movie based on the book of the same name by Dr. Lisa Genova.  Still Alice is  about a woman who develops early onset hereditary Alzheimer’s disease. We get to know Alice; she is smart, well-spoken, a wife, a mother, and much loved by her family.

Initially, she knows something is just not right.  You can sense her denial, “How could this be? ” She lives a healthy lifestyle, but that is the tragedy of hereditary, degenerative disease; it doesn’t matter if you are wealthy or well-educated,  or eat all organically.  It is incurable, unstoppable, and it will change your life.  Anyone who has a hereditary disease, which goes off like a life changing time-bomb, can identify with Alice and her family.

The movie follows her disease process from diagnosis to disability.  Alice works at trying to maintain a normal life.  We are privileged to see someone else’s struggles, grief, and despair, to her final acceptance (whether she is able to acknowledge it or not).  While the disease portrayed in this story is Alzheimer’s disease, there is common ground for anyone afflicted with degenerative disease.

The quiet elephant in the room is evident in the looks on the faces of her children when they realize that this early onset Alzheimer’s  is inherited.  Stunned, they understand that  this could be their fate.

Those who similarly experience the onset of a disease process such as vision loss,  can identify with Alice.  There are several messages here; the tragedy of an incurable disease, the demise of a life as it was once lived, and the importance of family love and support.

Although we may identify with Alice’s struggles and despair, for the visually impaired there is hope.