Disabled Americans Have Rights Too

Dorothea Nudelman
b. 9 March 1940  d. 30 May 2009

The following is the text of a speech by Dorothea Nudelman, polio survivor since nine years of age. Though her speech focuses on polio and Post Polio Syndrome (PPS), her words can apply to the depression that can be a part of most any disability. In the speech, she refers to her book;
    "Healing the Blues"
    "Drug-free psychotherapy for depression. An account by patient and therapist"
    ISBN: 0-940168-31-6

Beyond the Blues

Like many survivors of childhood polio, I spent at least five years in mid-life denying that my body was losing strength and mobility. In 1981, I had surgery and fell and broke my leg within a year. After recovery, my gait had changed and my pace was slower. The palms of my hands ached from pressure on my crutches. I chalked all this up to fatigue from a busy life. I had lived with polio all my adult life and knew the drill - giving in to weakness or fatigue was deadly. Trying harder would strengthen and restore me.

Over the next six years I exhausted myself further. Finally, frightened by continuing losses, I sought help from a psychotherapist and discovered that my fears masked a long held depression about my initial polio losses, now surfacing in the onset of post-polio syndrome. I learned that depression can be treated and healed (a process I wrote about in my book, Healing the Blues). It has been twelve years since my therapy for depression. Publication of my book connected me with polio survivors in support groups, at the 1997 GINI conference, and through correspondence on the Internet. The richness of these associations, the repartee and gallows humor over our worsening condition, and the generous support and information sharing have given me deeper understanding of depression.

Most importantly, I have learned to recognize when I am vulnerable and to develop ways to avoid depression. Writing Healing the Blues was a first step in this process. Connecting with adult polio survivors has taught me to advocate for myself and others, a far cry from where we all started - young, fearful, immobile, often at the mercy of caregivers. As children, we learned the value of cooperation and silence in the face of fear or pain. Now we are learning to speak our minds and hearts, to care for ourselves as our bodies  age and deal us further blows of PPS.

Noticing my own "danger" signs for depression is a critical first step in avoiding repeat episodes. I hope that sharing these signs may help you to notice, question, and see your own. I have also discovered techniques that help me replace negative feelings with positive actions. Again, in looking at your own life as you cope with losses, you will be the best judge of how to stem the tide of depression. Whether or not one does psychotherapy, takes medication, or lives with a supportive family, real depression with chronic disability is not unusual if we fail to notice the warning signs. Such failure results in expending precious energy "stuck" in misery or passivity. Depression increases our fatigue. Negative attitudes further debilitate us. We simply cannot afford this. But healing of mind and heart and spirit can renew us if we become our own guardians.

In my quest for stable health, I distinguish between depression and sadness. When I am depressed, I feel low, lack energy for life, lack affect or expression. I feel deeply tired, irritable, and anxious. When I am sad, I feel a flood plain of emotion. The weight is painful, poignant, sometimes overwhelming. I used to be afraid to feel sadness. I thought if I allowed myself sadness, I would drown. Now that I allow sadness as much as I demand laughter and expect happiness, I see the feeling as something that won't kill me. After allowing myself a full measure of sadness, I am usually ready to seek some remedy. For me the trigger feeling for depression is usually sadness; for you it might be anger, hostility, or some other emotion.

I'm sad when:
* I am debilitated by a compromised physical condition like a bad cold or flu.
* I experience excessive fatigue or strain from "keeping up" and ignoring limitations.
* I fall or suffer other physical accidents resulting in loss of capacity.
* I am confined by winter weather.
* I find I can't do something I used to do - climb a set of steps; walk with only one crutch or none at all; walk more than a block when I used to walk as much as a mile; turn over in bed without using my arms to help me.
* Something major is relinquished because of the toll polio continues to take.
* I must give up gainful employment, especially when I've enjoyed the work.
* I must trade a favorite car for another, which will accommodate a scooter.
* I suffer negative body image, as aging combines with polio losses to affect my sense of self - I gain weight, lose my sense of attractiveness, of sexual drive, of high energy level.
* I feel "stuck" with no outlet for expression of feelings, particularly isolation, fear, discouragement.
* I feel hypersensitive to others' attitudes, particularly when they condescendingly talk about me in my presence, or treat me as if my wheelchair makes me invisible; my imagination is driven by fear of the future, by seeing losses to come - (this is easy to do!)
* I see that pain can be insidious, robbing my physical energy and warping my balanced attitude.

You might ask, wouldn't anyone be sad in these instances? But because polio veterans learned early to endure in silence, the return of the nightmare in PPS makes these losses pack a special wallop! As one survivor friend told me, "They said we'd never get worse, only better. Dealing with this stuff now feels like betrayal. I think that's the hardest part to accept." We grow up and leave our childish selves behind, but we cannot deny the power of feelings.

Facing sorrow, anger, or fear, I first "pay attention" to the feeling to see what it's telling me. When I fail to do so, I pay dearly. Ignored bad feeling sinks down and becomes covered with the heaviness of depression. I can slip into a depression, unconsciously draining good energy into a veritable wasteland, if I don't practice vigilance.

Loss of energy is a waste for anyone but it is doubly critical for us. Preserving energy is central to maintaining wellness and slowing or reversing further deterioration. Until I experienced the late effects of polio, I kept my balance mainly through creating a structured, disciplined life. I cultivated wit and humor to heal my wounds. Now, practice at keeping mental and emotional balance has become the driving force in my "quality of life" defense.

Hoping that my "remedies" will help others, I offer these homegrown methods for confronting the mounting list of changes I face regularly. Using my skills has become an "act of acceptance" of the life I have.

* To begin with I've revised my expectations to fit my physical condition. In the past, I could walk a mile, now barely a block; in the past, I completed all tasks using only a brace and crutches; now I need my scooter for outside activities; in the past my upper body strength was enormous; now shoulders, arms, and back are weakened and injured Awareness of these changes keeps my expectations fluid instead of fixed. I don't have to like changes, but when I respond appropriately, I can commend myself for good judgment - a far cry from toppling over into sadness.

* I've learned to live with pain and listen to what it is telling me rather than denying or ignoring it. When I feel physical pain, I ask, "What is this about?" Usually I need to adjust a limb, shift positions, support my body better, take a nap, or reduce the quantity or duration of work. Occasionally heat or massage helps, sometimes medication. I pay attention to duration and severity of pain and seek consultation when I need it. I neither deny it nor blindly endure it. The conscious decision to deal with my pain gives me a sense of control and personal power. This decision was inspired by Dr. Stanley Yarnell who presented his understanding and treatment of PPS at the 1997 GINI conference. His intelligence, compassion, and wit gave me courage to trust that there was help for us.

* When I need help, I ask for it directly. I no longer work to maintain the illusion of physical independence. Seeing situations realistically, I know when to ask for help and when to tackle a task alone. For example, I enjoy entertaining at home a great deal. I used to shop, prepare, and serve my guests mostly on my own. Now, I ask my husband and friends to help, reminding them, if necessary, that I don't carry dishes from the dining room to the kitchen! My parties thrive and I enjoy them more because I ask for and get help. This enables me to live a fuller life and feel better about myself rather than focusing on what I can't do.

* To maintain daily balance, I create structure in my life where there would otherwise be none. I started doing this after I retired and had free time. This was the first time I had no professional obligations and for about six months I "played hooky" from morning alarms, mealtimes, and bedtimes. Eventually I tired of this. I felt disconnected from the "outside world." I missed seeing people and having stable patterns of waking, eating, reading, and socializing. I found it easy to fall into brooding and withdrawing. Having simple routines (like bathing, exercising, and accomplishing something tangible before noon) make me feel on track and alert and satisfied. It doesn't matter whether what I've accomplished is paying bills, reading a book, writing a poem, or visiting with a friend. What matters is that I've lived my life well in that time. I experience pleasure, big time, this way. Structured days give me affirmation.

* While I enjoy spending time alone, I seek the community of other people to encourage mental, emotional, and spiritual growth. Shortly after I retired I invited some colleagues to start a reading group where we met and discussed literature. Our meetings are mentally stimulating and socially rewarding, Last year, I joined a small spiritual community focused on personal and spiritual growth. Through this group I have learned to use the powers of my imagination not to frighten myself but to increase my sense of vitality, creativity, and gratitude for life. And I've discovered that computers and GINI conferences are also great venues for meeting generous and supportive people.

* I have learned to forgive myself for getting stuck, again and again and again! This practice increases my compassion for myself and others. It gives me confidence in the simple knowledge that everyone makes mistakes. My sense of humor used to deflect emotional pain. Now humor makes pain something I live with for a while and then get over. Laughter laced with kindness and wisdom is healing. This spring I will travel to Paris for the first time in 30 years. In my youth, I was able to walking around Paris. Now "mobility anxiety" had me seeking scooter rentals in France. During my search, a dear friend gave me a card with a photo of a woman's feet in high heels - on the tips of her stiletto heels tiny wheels were mounted as if for gliding. Inside my friend wrote, "Wouldn't you love these shoes for traveling down the Champs Elysees?" In one stroke, the absurdity of this picture turned my apprehension into laughter. I was ready to move on.

* By practicing regular acts of kindness towards myself, I am developing a loving sense of acceptance for all things, including my body. If we live to middle age, most of us spread or droop here and there! When we can look at ourselves with gratitude, with appreciation for how well we have lived in these bodies in spite of the ravages of age and illness, we can see our own beauty. It takes time but this is possible. Simply staying open to the possibilities of sexual and personal aliveness is a good place to start. If we have to surrender anything, we should surrender society's false sense of beauty - it is simply too narrow for both sexes. It is destructive.

In writing Healing the Blues I took the first tentative steps towards a great midlife harvest. Now in the thick of it, I am beginning to understand that the process of moving through life is the greatest gift we receive. Each day is part of that journey. There will always be grief and loss but when we see and accept the whole, joy and light can illuminate our skies making us winged creatures who fly free.

Dorothea Nudelman
b. 9 March 1940  d. 30 May 2009