Last week, I saw a client who is vent-dependent and has a chronic muscular disease. This individual uses round the clock personal care attendants and lives in her own apartment. The client informed me that her sister is dying from numerous brain tumors and from lung cancer. Her sister is receiving hospice care in a nursing home. The client also talked about her family grieving about the inevitable since her sister was born able-bodied and healthy.
My client told me how some of the staff were shocked that she lived in her own apartment and has round the clock personal care attendants. My client educated them that persons with disabilities can live on their own. I told her that it is a shame that some people are ignorant and unaware on how persons with disabilities can live independently in their communities with services in placed.
My client made an interesting observation how her sister smiles at her and asks her how she is doing. Her sister does not give any hints that she is dying or is in pain. I asked if it is possible that maybe her sister is trying to not feel sad in front of you. She asked me to clarify my statement. I said a friend of mine who is a wheelchair user told me that when her mother got very sick and became physically disabled; she never asked her for guidance on how she lives with her disability on a daily basis. Her mother always appeared to be strong and proud when my friend took care of her medication needs since she was a RN. I told my client that maybe my friend’s mother had to feel mentally at ease by putting up a front because she felt embarrassed about her physical condition. I said that maybe your sister is doing the same behavior to you. My client thought about it and said she was not sure.
I also told her that elders attribute their declining physical conditions to “aging” and not to becoming a person with a disability. Most don’t ask for advice from young folks with disabilities on how to live a healthy quality of life. In the case of your sister who is dying in her 50’s, she may feel ashamed to ask you how you have sustained your quality of life in a healthy productive manner. She said that her sister had physical signs over the years that her body was breaking down by getting headaches and becoming fatigue. She never paid attention to them because like many able-bodied persons, they don’t want to admit that they can become disabled and be in a similar circumstance to someone they know.
What is the lesson here? Jonathan Kabat Zinn, Founder the Mindfulness Mediation Clinic in Massachusetts, tells his clients (who have diverse physical and psychiatric conditions) that “as long as you are breathing, there is more right with you, than wrong with you. You are all whole in the present moment.” I feel people tend to categorize their health conditions and compare their suffering with others. In reality, we are all human beings in the present moment.
Robbin Miller is a counselor who specializes in mindfulness meditation; Positive Psychology; and Cognitive-Behavioral Therapies; and is also a volunteer cable access producer and co-host of her show, "Miller Chat" in Massachusetts.