John Muir, Ball Auditorium, March 30, 2000
by Margaret Dowling ("Maggie Dee")
presentation by invitation to a Medical Group
NOTE: The California Disability Alliance is interested in helping medical professionals understand the realities of life with a disability - from the perspective of persons with disabilities themselves. CDA member Maggie Dee did a splendid job in this presentation to the rehab physicians at the John Muir rehabilitation center. -- Jean Nandi
Three injury events in my life have helped to shape the person I am today. I feel well qualified to address Fighting back from disability-to-ability, from a patient's perspective. Learning early in my years as an advocate to approach issues pro-actively...let's talk about disability in terms of ability. I've journeyed down a life path where I have gone from abject poverty and despair to a participant in life with an abundance of surprises along the way.
I first became disabled in 1965 in a head-on auto accident in Golden Gate Park. A healthcare worker who worked a double shift fell asleep driving home. He careened off the car in front of us and gunned the accelerator. The collision first turned my car in the opposite direction and then rolled one complete cycle. My passenger and I sustained cervical injuries. I was a statistic in 1965, one of 87 percent of serious auto injury victims are caught in a log-jam of clinical depression.
Utter hopelessness was my constant companion. The slippery walled pit of despair entombed me in a foul and bottomless depression - the rest of my life seemed useless...just another cripple. You see, I believed as the rest of society, that disabled meant unable.
I did my weekly trek to outpatient therapy in S.F. Unlike John Muir's Rehabilitation program, it was in/out...a wham bam thank you for your money program.
Going home each week was worse - I was selling everything of value to pay rent and live on whatever I could buy on sale at the corner mom and pop store...a bag of chips and a soda was generally my daily diet. Of course this poor nutrition spilled into frequent other maladies.
I could not pay my utility bill so the power was turned off. My nights were spent in the dark. The water no longer flowed into my house...I bathed at a neighbor's home until her job transferred her out of town. I was facing eviction the day before my last outpatient therapy session.
My employer Young and Rubicam Advertising sent me a "get well" card in which notified me I had been "laid-off". Under the circumstances they were going to grant me a three-month extension to medical benefits.
Homeless and in pain I drifted in and out of church shelters, stayed with friends and on a few occasions with my family. I turned down their offer to live with them. Finally, I found a cheap hotel on Market Street called the Twin Peaks Hotel for the grand sum of $2 per night.
I entered the unfamiliar world of Welfare and all the glories of profound poverty, the last lifeline to existence. I was handed a food voucher card good for $40 a month, a handful of bus tokens and a $50 rent voucher for the hotel. The County Welfare medical program allowed 4 physical therapy appointments a month. The emotions were wild and wooly...like a roller coaster trying to find employment. Any personnel management person could easily discern that the person in front of them was unfit for employment skilled or not skilled. Each day I sought any kind of employment that would get me off the Welfare rolls.
Clinical depression statistics were ugly then...even uglier for the person trying to survive what seems insurmountable pain. Of the 87 percent of with depression, 31 percent of us made at least one serious suicidal attempts...12 percent were successful...10 percent were men. Suicidal thoughts and overt actions are higher today as competition in the job market is more competetive...
Pounding the pavement for jobs and getting to physical therapy appointments once a week was all I could handle. I was exhausted by the time I got home...the pain-prevented sleep left me with countless hours in a darkened room changed only by the flashing neon hotel sign outside my window...the hum of traffic and the prostitutes coming and going from their rooms.
Good fortune! I found a terrific food source behind one of the best restaurants in San Francisco, a fellow homeless person tipped me...but also warned me that if discovered the owner would call the police. I'd lurk in the shadows until the evening's bagged food was tossed haphazardly into the bins behind the building. One of the cooks suspected someone was culling through the garbage so, in a week's time he bagged a special bag with the best of the leftovers. He wrote..., "Been where you are."
I began feeling better...I was eating salads, meat, vegetables and a few desserts that were fit for a queen. I stopped doubling up on the pain meds to sleep and to keep me going on the job hunt. A few months later I plum position. The residual pain that was still there but each night after work I could afford to workout at a nearby gym to strengthen the muscle tone...a PT of sorts. Life and my activities leveled off, my social activities include some of the outdoor activities of old.
I was catapulted into the 1965 memories when in 1983 I was pried out of my car by the rescue workers, whisked to a near-by hospital, stabilized and shipped off to another hospital. I'd learned well from the first accident...I was NOT going to fall prey to poverty and lose everything again. However, I did.
The ol' enemy, despair visited me again. Friends fed me See's candy, brought me flowers, sent cards as the days moved into months...once again, jobless. I loved my job. I was working for a non-profit here in Contra Costa County. My employer recognized that I was not going to return to work anytime soon. With tears in her eyes she gave me the bad news that she had to replace me.
I was trapped in cervical and pelvic traction at home. I had no resources other than an in-home care provider. Thanks to her I re-learned how to read. She taped the alphabet up on the closet doors that faced me - then we read endlessly from the Dick and Jane books from the library and finally I was reading large print novels. By that time I was allowed out of bed three times a day at 15-minute intervals. I gained strength after months in traction. The physical therapy was Medi-Cal limited to twice a week at a local hospital with little interaction from the therapist. I was zapped into the rolling traction collar atop heat packs for 30 minutes...given a ten minute massage and was on my way home by Dial-a-Ride in less than an hour. I learned an important lesson back in 1965...not to shut out your support system...build on it.
A few true-blue friends and of course my parents were constants in my life. My parents traveled from the city to my home once a week bringing food and once a month they paid my loan payment and space rent until the State Disability checks started arriving. They were utterly horrified when they learned of my 1965 living conditions.
Constantly I searched for resources that could help assist me with various issues. I needed a set of parallel bars to establish walking skills in my new leg braces. I need to modify the entrance to my home with a ramp...I needed fill my prescriptions because I could not travel to the drug store...no resources existed as they do today. The only help available was an adapted PE class at the local community college...however, I had to be enrolled in at least one other class. I was sharpening the lost writing skills every day.
With my newfound language skills I kept a journal. Exhausted from my day, I shut off the light early. An idea was rumbling through my thoughts. I acted on it the next day. I sent a hand-written proposal to the local newspaper. I wanted to write a disability- related column. Disability issues were wire stories without that much-needed local color. Much to my surprise the proposal was accepted. With renewed vigor I discovered and was accepted by the State Department of Rehabilitation as a client. They funded my educational goals.
The managing editor wanted me to enroll at the community college. I wrote a bi-monthly column much to the Copy Desk's horror...it was filled with glaring dyslexic and spelling errors.
A semester later the submitted copy was greatly improved. The second semester I continued Spelling and Vocabulary, I added Journalism to my list of objectives. In a year, my columns turned to weekly deadlines. I added another weekly newspaper column to my deadline expectations. A year later I was offered a job as the Managing Editor's assistant.
I learned that indeed there was a life after a disability...and the best part I discovered by researching for my weekly disability column that resources galore abound for the disabled...only most of the resources were in Berkeley, the Mecca for the disabled. Something was missing. I felt disabled despite the workload. Clearly, society saw me as being a person with a disability...and then realized that I saw myself that way too. It was all work and no play. I was ready to expand my horizons.
[Que: BORP video. ]
You may have seen a brief glimpse in the Bay Area Recreational Program video of a white water river-rafting trip. I applied through BORP to experience their two-day white water river-rafting trip on the South Fork of the American River. Two of us went, the newspaper's award winning photographer and I.
Physically put into my raft, my wheelchair was stored in a Land Rover. My first challenge after that deliciously wet and wonderful white water excursion was to write an article conveying all that the trip entailed. I arrived at the excursion site a cripple and left a challenged person with a disability. I met the challenge that Mother Nature hurled at me head-on. There were no boundaries, no differences onboard those rafts. When I was re-united with my wheelchair it became a means of transportation...not a symbol of a cripple. I met people who were considered among the disability community leadership. We talked into the wee hours of the morning and the next day challenged the river again.
I had so much to learn from the disability leadership. The first three big lessons I learned were 1. Never allow anyone to put you in a nursing home, 2. Never give up trying to meet your goals in life and lastly... NEVER, NEVER take "no" for an answer to something that is important to you ... find a way to accomplish what you know is important in life...don't cop out.
The epitome of that thinking is clearly evident in a portion of this next clip taken from the Academy of Arts Oscar winning short entitled, "Breathing Lessons", by Jessica Yu. It won the Sundance Film Festival award the same year. I had the privilege of knowing this mere wisp of a body and giant of a man...imagine being mentored by the greats...the first line of leadership!
[Que: Breathing Lessons]
As time passed, I learned of countless Bay Area community-based resources, which John Muir's Social Workers have drawers filled with brochures. I wish I had a handful of those resources when I was discharged in 1965 and again in 1983.
Back in 1965 using today's resources may have prevented my plunge into poverty and profound despair. The tenacity of my family and friends support gave me the gumption to fight back from disability to ability.
Today, linking family, friends and the multitude of resources leads us on a gradual climb to self-acceptance. The more linked I became to the Bay Area resources as a result of the research I did for the column instilled a greater sense of worth and well-being.
I wish that the story of rehabilitation ended on that happy note but last year in June, I had just arrived at John Muir's Outpatient Rehabilitation Center at Rossmoor. I left my house with a sense that something was about to happen. In fact, I mentioned it to Margaret. Something nagged within saying, "don't go". My new power chair was being serviced.
I was in the middle of a therapy series and was NOT going to miss my appointment. I ignored that inner feeling. We arrived at the Rossmoor site. I parked the van and was trying to maneuver out of the van in my backup power wheelchair when it malfunctioned.
I was hurled out of my lift-equipped van and landed on the payment below - headfirst. My assistant, Margaret Dean...here at my side today, witnessed the fall. I don't remember the incident. I don't remember ER I don't remember CCU...but I do remember the nightmare of DCU.
Morphine was administered...for me an anger agent. When I discovered that the drug I was being administered was morphine I asked that I be gradually withdrawn from the drug. Of course the withdrawal allowed for greater pain and sensitivity to movement. My head felt like it was going to missile off my shoulders...every inch of me ached or hurt. My hair was matted with dried blood; my visitors could smell the stench.
I asked that my hair be washed or cut off and was told that the DCU staff was not equipped to meet my "demand", "We are medical professionals, not hairdressers". This began the communication spiral downward to the point where staff was directed not to enter my room unless I put my light on. A few staff blew off that directive and administered comfort with their professional duties.
At last, an answer to my prayers... my knight in a starched white lab coat, Dr. Dana rounded the corner to my storage-size room to ask if I wanted to become a rehabilitation patient. If I did I would be transferred to the unit in a few days. Without hesitation I unequivocally answered, "When?"
I was...what a vast difference in care. I went from a room with a tiny slit for a window to a room with a full wall of window...a vista with no boundaries...sun poured into the room. The DCU room was inadequate for wheelchair usage...the turning radius was wholly inadequate. My new room was fully adaptable to any size wheelchair...it even had a bathroom! ...a real bathroom of my very own! Within minutes I was met by a person who gave me an overview of the program...she actually smiled and laughed. I felt like a released prisoner of war...this, a patient's perspective. I felt as though my journey through the rehabilitation process had its first start. I felt my mood change. I was eager to learn and participate in the assignments.
Within a day I had my tilt and recline wheelchair. I asked Dr. Dana for permission to leave the unit...of course I didn't tell him that I had forgotten how to navigate my power wheelchair with all its bells and whistles. He was reluctant but agreed. I had to gage my absence from the unit to meet my on-unit appointments...I was a little late for a few of them and was politely admonished...unlike the reception received early in my stay.
I began with "outings", as I called them, first just outside the ER entrance. Then I navigated the hospital property...a few days later, at 6:30 a.m. I felt a strong urge to push the envelope. Unannounced, I left the hospital grounds and headed up La Casa Via. The rush was amazing! I felt exhilarated and hell-bent on discovery...discovery of myself in the REAL world pushing my mechanical partner into the early morning hours. It was cold that morning.
Wrapped in warm thermal blankets and with the early morning air rushing past me I powered up the road. The tremendous sense of FREEDOM brought on tears that cascaded down my face! I unleashed words that flowed through my thoughts...writing a short story on each trip I took up that road to recovery. For me...the "outings" were critical to my hospital discharge. Each trip out, I learned more about my wheelchair...gain enough confidence to ride the road and brave the curbcuts...even the unsuspecting bumps in the road despite the pain they caused were part of the joy of being ALIVE...all things that life would require of me soon after returning home.
Returning home..., I thought about the tasks still left unfinished. The advocacy on the haunting legislative issue that was brewing...one that the community of the disabled was fighting as though it was the last piece of legislation ever to be decided upon in Sacramento. The contrasts of feeling so ALIVE yet as the past whirled in my remembrances those days so long ago when despair was the captain of my ship. Over and over in my thoughts was...LIFE with Dignity!
"How hard we must fight this Death with Dignity", I thought to myself on one of those early morning trips, "for it is THAT PLACE of despair that I lived, ate, breathed and wallowed in so many years ago because I felt so hopeless. We MUST provide life with dignity for those who become disabled, relief from intractable pain, provide sound community-based services and long-term homecare...living with dignity then, only if we must, consider death with dignity as an option. Like the whirlygig of the white water rapids I rode, I was snapped back into thoughts of future newspaper deadlines...the radio shows yet to be booked...of the blessings of Muir's and my objectives... meeting my life head-on with the greatest independence I can achieve.
Daily I underwent physical therapy, occupational therapy, speech therapy dealing with my short-term memory losses. What did not work the skills of the PTs, OT's helped me to discover new ways to approach things that I could no longer do. Probably the most enlightening element of the entire in-patient stay was the attitude of the staff. They found ways to make independence a probability...not a maybe. I shared things I'd learned along the way with staff who were receptive to skills I'd modified before my fall.
Outpatient visits from Home Health Care was very different, less intense. The assessment was done...none of my records had been released to the visiting team so they had to do their own assessment. The PT was unwilling to listen to caution I gave her about my spasms. I ended up in a whale of a flexion...the pain was excruciating; no matter what she tried the spasm controlled my crumpled position. Caution was noted not to repeat the exercise! A lesson was learned by that visiting PT to listen and not insist in my case...but somehow, I don't think that this was a lesson learned for future patients. Granted therapist hear patients say they "can't" often...only for patients to learn in time that they can...modified perhaps.
I returned to the Rossmoor site. It took several visits to quell the fear I associated with using the lift-equipped van but pool therapy, OT and Speech therapy were ahead of me. The short-term memory bothered me almost as much as the unwanted spasms. I was limited more by frustration...but quickly learned the skills to override some of the loss. I learned how to use a planner to schedule my daily activities and was given terrific exercises to re-learn the skills I lost. When starting outpatient rehab, I could only single-track when before the accident I was a high level multi-task person. I was juggling four or five agency projects, attend hearings, conferences and workshops at a statewide level...and of course meeting my weekly newspaper deadlines and radio show responsibilities. Each week I found time to care for my aging mother. I was an A-Typical Work-aholic working 18/7...and loving every minute of my busy life.
...My body was NOT cooperating! Spasms control my activities. I no longer travel for business. Accomplishing the deadlines and radio show is a feat accompli...I am thrilled that I have retained two of the most important activity elements of my life. I am constantly plugged into our community via email list-serves and digests...and meet an online newspaper weekly deadline. I've just ended a 12-week pool therapy series on a positive note, I accomplished a moment of weight-bearing. Physical therapy is my lifeline to remaining independent...not a maintenance program. Without the constant care of professionals like your Muir outpatient staff we lose ground. Unable to transfer from wheelchair to bed or toilet seems insignificant unless a patient ends up in wound care for a pressure sore...costly, when with rehabilitation services that patient may re-learn or learn how to make a successful transfer.
Many of us who are learning the basic skills are afraid of falling so we either stay in bed or in our wheelchairs rather than risking a fall. Re-learning skills how to cook...for a stoke patient... single handedly is such an achievement...how to read when the sight is severely impaired...how to find that there is a real life after a disability. What impressed me most about my care here at John Muir was the rehabilitation process...not just the all-important practical elements of rehab...but the abundant compassion with which it is administered.
My rehab successes are also my physical therapists and doctors. Their constant encouragement, their willingness to deal with the differences...the unexpected...to find ways to combat that which could hinder my path of defining the different abilities.
This patient's perspective is based on exceptional care by Muir's rehabilitation process, doctors who take a pride in their patient's progress. Sadly, most people with new disabilities will not experience the John Muir way. It is my fondest wish that the medical community would find that the patient - medical staff is a partnership, one that we must foster.
We are a community of highly educated and talented people that can establish partnerships in discovering and establishing healthcare policy for our combine futures; medical policies which reflects the John Muir concept of rehabilitation helping people on their road to recovery and new found abilities. Thank you.