This past week, I found out that a long-term client whom I will call LG passed away at the age of 44 years old, when I read her obituary in an online newspaper. I saw this client for ten years when I worked for two different agencies, and then, terminated with her in November when I got a new job. I was so saddened to hear of her sudden passing. LG died from muscular atrophy, a form of muscular dystrophy that resulted in her being vent dependent and relying on round the clock personal care attendants to take care of her physical needs. LG used a power chair where she was able to use only two fingers to steer the joystick to move around freely. LG educated me about the true meaning of life. She was not an inspiration to me as some people would call her in the general media, but a person who mentored me in understanding the true nature of having a chronic disability.
When I first met LG in 2000, I was afraid to look at her due to my lack of disabiliy sensitivity and fears of being with someone who was not attractive due to being vent dependent and having a thin contorted body that was held up with a back brace in her power chair. LG's head always titled to either to the left or right (depending on her comfort level) and she had two front teeths protruding out of her mouth. After a period of several sessions, I got to know LG for who she was. A human being just like anyone else. There is one thing that LG taught me over the years. She never liked people with disabilities who felt sorry for themselves. Her famous quote was, "Oh please! I don't want to hear your pity" when she heard of others feeling sorry for herself. LG knew she could die at anytime due to her disability but kept on going everyday as it was her last day on earth.
I interviewed LG for a 15 minute clip on my television program in 2001. I asked her to educate others on how they should be with persons with disabilities. She gave a mouthful that was quite blunt and insightful. I am hoping to use this clip as a professional training tool for mental health professionals at a future time as I feel our profession can learn to be more disability sensititive when counseling this population. On an interesting note, when I went to edit this clip, the staff person remarked, "Oh dear, what is wrong with her," when he saw what my client looked like. I could see the immediate shock and dismay in his face when he stared at her on video. I told him who she was as an advocate who agreed to be interviewed on my show. He was shocked to learn that she lived independently in her home with round the clock personal care attendants. I guess most people like him feel that someone of this constitution should be living in a nursing home.
I won't kid you in saying that LG's life was easy. She lived at the Mass Hospital School in the 1970's where it was a dumping ground for children and teens with severe physical disabilities. LG always felt her mother and father abandoned her there but she knew they were forced to put her there due to societal pressures. LG had similar family issues that are common in families with "able-bodied" children as well. Her personal care attendants were her family as well as her next door neighbor.
What are the lessons I learned from working with LG:
1) Feeling sorry for yourself is non productive.
2) Live your life as it was your last day on earth on a daily basis.
3) Educate others on how to interact with you when you sense their uneasiness with you.
4) Family is not defined by genes but by close bonds with others.
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.