A man with worsening multiple sclerosis sent me a long e-mail. He described a dramatic decrease of mobility and a lessening of strength and stamina – changes that most of us will experience, usually over a much longer period of time. In his case, the change “strikes at the core of my very being. I worked and played hard because my energy seemed almost limitless,” he wrote. “Now, just that typical preparation for a day’s activity (shower, shave, dressing) can exhaust my limited reserves.” Because of his limitations, he left as administrator of a large nonprofit – work that had been “more than my livelihood; it was my reason for being.”
He said he believes a change of thinking about his life would be helpful, but does not know how to make it happen. He wondered about exploring faith, quiet contemplation, or therapy for himself and his wife, who is now his caregiver. He feels he is floundering.
Dear reader: I read your story several times before trying to answer. As I did, the part of me that wants to be helpful was generating ideas about utilizing your knowledge and skills to help others. I wanted to tell you how this can restore what seems your greatest loss – your sense of purpose. I also wanted to say how helping others can raise endorphins – the brain’s natural antidepressant.
Then the psychologist in me wanted to talk about grief and loss – about how life is loss and how we live pretending it will never happen, so when we lose things, we are surprised. I wanted to say that, eventually, all of us lose everything we love, including life itself. And that these losses must be mourned; we must give ourselves time to cry and experience the sadness of our own mortality, and that it is only in facing death that we can fully experience life. I wanted to share about how faith happens only when the ego is finally quiet – an opportunity that presents itself for you now.
When I read your e-mail the final time – well, I still wasn’t ready. Your note was clear, you talked about who you were and what you lost. But not who you are. So, today: Who are you?
Dear Dr. Dan: I haven’t fully come to terms with who I am now, or how to live this life, such as it is. I remain involved at the agency part-time, paid for one day per week, though I actually go in infrequently.
I am the husband of a woman to whom I have been married for 32 years. Though my wife is neither weak nor dependent, our roles have been reversed, with the dominant partner now recessive. This refocus has deepened my love and made me better appreciate the depth of hers, but the scope and intensity of my changes frighten us both, and create increasing demands upon her patience.
I am a voracious reader, and I am also writing. And too often, I am a guy struggling to get through the day who’s weak, immobile, and dispirited.
Dear reader: Like most of us, you define who you are based on your labels – administrator, husband, etc. But now all your labels have changed. Because your mind works the way it does, you still struggle to define yourself the way you were before the MS. So you find yourself frustrated, experiencing loss, floundering. I would suggest that your emotional pain is not because of your disability. It is because you have lost most of what you were once attached to – career, role, sense of manhood, even your body. Which leaves you asking that almost impossible question: If I am not my job, role, body… who am I?
When I first became a quadriplegic, I would get very upset when I dropped something on the floor, needed help with my food, or was simply fatigued. I would feel angry, embarrassed, and sorry for myself. After a few years I was at a restaurant and noticed that I was quite comfortable asking a friend to cut my food. I wondered what had created this change. And then I realized that for the first two years, my mind still believed I was an able-bodied man who was clumsy or lazy. But at some point, the Dan Gottlieb I thought I was had died. Somehow, without noticing, I had become a quadriplegic.
You and your wife would do well to be in therapy with a marital therapist who is not afraid to face your pain. He or she could provide a safe forum in which you could understand your new roles and the fear and frustration that accompanies them. Yet therapy will not tell you how to be a person with a disability. Nor will it tell you who you have become. This will evolve from carefully and nonjudgmentally observing yourself and your life. You are fighting a battle for life itself. You suffer because you cherish the life you have known – and won’t give up the old roles easily. You suffer because change is painful and humans desperately try to avoid pain.
What you are learning now, what I learned years ago, is that if we live long enough, eventually we lose everything – career, health, youth, power. Those who live their lives believing those labels define them suffer greatly when they are lost.
So who are you now? The same person you were 10 years ago. Like the rest of us, you suffer, fear, flounder, laugh, love, hide, hate and live. You eat, breathe, bathe, think, feel, sleep and wake. You feel compassion, shame, rage, pride, grief and gratitude. You have lost your labels. Does that mean you are more or less than you were?
Please don’t fear your suffering. It will stay as long as it stays. If you battle against it, it will stay longer. I hope you have the courage to sit inside your skin and discover the man you always were.