I have lost so much connection with the world and other people. The deepest loss is with my family. Sometimes my perception of their indifference to me becomes intense. In a nutshell my family values most highly success, prestige, and status. Success to them means being number one, a winner. They work hard to stay on top. They all base their value on professional competence and aim at being the best at what they do, mainly for prestige for being at the top of their profession. With this fame and their existence affirmed, their value is without being nobodies.
Because of my mitochondrial disease I am nobody, as I cannot live on the fast track. What I am realizing is I want support and a feeling of being connected with the world. Because of this need of wanting to be a part of the human race I absolutely cannot talk to my family. The main reason I am unable to talk to them is because they need to advertise themselves, brag about their accomplishments, hyping up their achievements, making themselves sound credibly wonderful, and making whatever they do seem better than anyone else does — and better than it actually is. The only subject of conversation is themselves and I am supposed to be enthralled by everything they say and do.
It goes without saying these arrogant and cocky people, my family, suck energy out of me. It is if they are constantly saying, “I am better than you.” I am overwhelmed with how much stress this causes on my body. I will unconsciously stop myself from having meaningful desires because I do not want to hurt anymore, especially by having desires and expectations for myself. The result is a sudden blockage of all feelings, as if life is being drained out of me. I become fatigued, exhausted, apathetic, alienated from myself and others and I just sink into being emotionally paralyzed, unable to function.
I am beginning to realize, to live with this disease and the acceptance of my condition, will take a non-attachment. I cannot cling to anything inner or outer. I especially cannot cling to the endless activity of my mind as a source of identity and my orientation with the world. Breaking down this dualistic mindset, between me and my family (the world), subjects and objects, the known and the unknown, the dangerous and the safe and so forth, is like learning reality can no longer “stick” in my consciousness. This disease is taking deep courage to put my ideas and consequently myself on the line.
So learning to be non-attached to this question, “Will you still love me if I am nothing?” is allowing everything pass through my consciousness, especially family. This opening does not feel like me and leaves this nagging feeling something essential is missing. And to face this enormous gap between who I have taken myself to be and the truth of what I am is learning to keep my mind open. This state takes non-attachment and appears to be moving to a profound compassion and maybe this is because I am learning to no longer attach myself to any view point. This compassion, I hope, will create serenity and I can be willing to forgive all.
I am shaking inside, sweating and just down right exhausted, yet I need to express myself and lean into my pain. I cannot say thank you enough for allowing me to support you and you supporting me.
Your presence is significant!
What follows below is Jean Shepherd’s letter to Syd after she read “Will you still love me if I am nothing?”
Dear sweet and sensitive Sydney;
You really are SOMETHING wonderfully expressive and LOVABLE!
In just five short concise paragraphs you have articulated how I have felt for over 25 years. I would venture to guess that you have expressed the deepest emotions of not only we adults who have Mitochondrial Disorders but also all people the world over who are other-abled in some way.
What I am finding joy in what you have written so powerfully is that you are reaching out to those who will hear you and understand, with TOTAL empathy, your need to be special and loved. You have discovered that family members and friends, who are upwardly mobile and racing as if their life depended upon it, have no time for the real love that real people must have. Their lives are falsely focused and have lost the ability to love in a real and meaningful sense.
Because of being other-abled, you have found that the fast track holds no meaning for you and you have nothing in common with family and many friends and feel alienated from those who do not understand the power of such a basic emotion as LOVE!
Where I disagree with your perception is that you are unable to function and feel emotionally paralyzed. I understand it because I often feel it BUT I have found a new way of functioning and showing emotion!
For many years, I have found an emotional empowerment and meaning for myself through reaching out and empowering my friends in “Mitovia” to realize that, like you, they really are something SPECIAL! You, my dear friend, are LOVABLE AND CAPABLE and your meaning for your life must come from your SPECIAL ABILITY to express the needs of the “other-abled”! You will find that this new direction will bring you back the feeling of fulfillment that you are mourning and it will introduce you to others who love deeply and completely: These are the real and compassionate folk who, you will find, will know and love you. We need you in “Mitovia.”
Passion and compassion comes through pain and loss! WE NEED YOU!
I urge you to consider sharing this gift that you have written with others by submitting it to Cristy Balcells (email@example.com) for MitoAction’s personal stories. It will take courage, which you have, but it will reach out and speak to all!
With love and caring to someone who is both lovable and capable.