Happiness regardless of being disabled required accepting my disabilities. Discovery of who I was after the stroke and acceptance of my disabilities was a long journey. I couldn’t have done it without God and His promise of eternal salvation. Prior to my stroke, I believed in God, but that was about it. Even Satan believes there’s a God and Jesus Christ. I actively seek Him and try to follow Him now by studying my bible and His teachings. Being disabled would be intolerable if there was no God. In a word, I would have felt cheated, bitter and angry. With Jesus Christ and His gift of eternal salvation and a promise of a new heavenly body being disabled on earth will be worth the gift to come.
Being disabled, I was dependent, depressed and ashamed of what I had become. My life hadn’t been perfect before my stroke, but it was busy with work and visits with family and friends. Weekends I hunted for antiques at garage sales, thrift and antique stores around North Central Texas with my sister, Yestraday. After we arrived home with our treasures, I repaired and refinished the furniture and embroidered fabric to recover cushions and pillows. I couldn’t sit still and was always occupied with a project. Rarely was I idle.
The stroke left me a ventilator-dependent quadriplegic: unable to move, breathe or speak aloud. In short, I couldn’t control my body or anything in my environment. The inactivity resulted in my abrasive manner. Angry at the world, self-pity filled me.
Being Disabled & Dependent
Dependent on others to complete my morning ritual of bath, stoma care, bowel program, lung treatment and physical therapy, exasperated me. I wanted to do things for myself, but that wasn’t an option anymore. For years I attempted to control my caregiver’s assistance as they performed their job duties. Until I learned to accept that they had their own pace and way of doing things, I created a stressful environment, I micro managed their every step of my care. My caregiver’s were more relaxed, happier and open to suggestions about my care since I stopped. Accustomed to waking at 6:00 a.m., bathed, hair washed, dried, and rolled, makeup applied and a 45-minute commute to work, the wait is unbearable. It takes approximately five hours a day to get me ready each morning. I still must bite my tongue not to hurry them when it takes longer.
Being Disabled & Depressed
I lost the ability to do almost everything and as a result, I only thought about what I had lost and the CAN’Ts consumed me; can’t walk, can’t eat or drink by mouth, can’t breathe, can’t scratch my nose, etc. Wallowing in self-pity, life was depressing and boring. Television didn’t fulfill me.
Being Disabled &Ashamed
On a caregiver’s first day of work they will see and wash every inch of my body including my most intimate places. I was extremely self-conscious and uncomfortable when naked in front of these virtual strangers. Not to mention, assisting me in a bowel program. For the first couple of years unable to go to the bathroom unassisted, I wept through the daily bowel program, but became less self-conscious about being nude. If you’re modest, I don’t recommend quadriplegia or do recommend you get over being modest fast.
Whenever I have had bladder spasms (especially when my body has passed a kidney stone) I have urinated from my urethra and not through my catheter and as this occurs I wet the bed. Due to a stomach flu or other illness, on a handful of occasions I have pooped my pants when out and up in my chair. Logically I knew this was no reason to be ashamed, but convincing my heart was another matter. Emotionally, I equated myself less than an infant, because sooner or later they become toilet trained. I never will be. I felt like a thing, less than human, a waste of space and worthless.
Books An Excellent Diversion
A caregiver told me about the NLS National Library Service for the blind and physically handicapped https://www.loc.gov/nls. I read two to three books a week before my stroke. I’d missed books, because I couldn’t hold a book or see well enough to read anymore. Books had been one of my favorite forms of entertainment. Even though reading books was preferable to listening to them, after I became disabled, I had no choice. Eventually I grew accustomed to listening to audio books and the narrators at the NLS are as good as the professional narrators. I began to listen to books during the time my caregivers got me ready each day. It helped pass the time and for me to be less self-conscious during my bath and bowel program. In short, tune out and go somewhere else in my imagination. Since my caregivers enjoyed listening to books as they worked, we selected them together. Currently I will listen to a historical fiction book with Kathy and when Lisa takes over I switch to a dystopia novel. Then when I am on my own I listen to my own book. So, I listen to books about five hours in the morning and two to three hours at night. Therefore, I have at least 3 plots to keep straight in my head. at any given time, but books although an excellent diversion failed to fulfill me. My life lacked purpose and felt empty.
Being Disabled & Depression Lifted
Books kept me busy but I needed something more than entertainment. I felt useless and worthless. I thought I couldn’t do anything of value. My respiratory therapist and close friend, Susy Jouett, of Aspen Healthcare http://www.aspenhealthcareservices.com/ asked if I would visit a patient of hers that was lonely and would enjoy a visit. Desperate for a diversion to break up my day I accepted her invitation. I learned Connie was dying from A.L.S. on a ventilator and unable to move or speak. Her only movement was eye blinks. We “spoke” using an alphabet chart and eye blinks. For the first 6 months after my stroke I couldn’t speak and used an alphabet chart to communicate. On the first visit, we spoke for several hours and kept in touch. As a result, Connie and I grew close and my depression lifted, because I was doing something positive just by being a friend. Hence, Connie’s spirits changed for the better, because she could communicate with someone that shared similar experiences and understood. I found that by caring for someone else my focus shifted from POOR ME and onto a way to help others and felt worthwhile. That Christmas I ran a teddy bear drive, delivered them to patients along with Christian books donated by Joni and Friends http://www.joniandfriends.org, and spent time with those patients at a rehabilitation hospital. Then I spoke frequently to their rehabilitation support group for patients. Later I spoke to respiratory therapists at continuing education classes, groups of doctors and nurses, disabled people, and Christian and civic organizations, As I shared my story and experiences, I educated, entertained, and inspired audiences of all abilities and backgrounds. For more information on my speeches click here.
A Warped Sense of Humor
Thank God, I have a warped sense of humor, because it’s why I can laugh instead of cry. Now when I have a bladder spasm and wet myself I jokingly scold my mother, “It’s pretty sad that by age 46 you haven’t managed to potty train me. ” I look for the humor in every situation. For example, each day I get a suppository.
It started my day in an embarrassing way. I dreaded it. Because of inserting the suppository, my face and patches on my body turn red and blotchy. A caregiver commented on how red my face turned. I asked straight faced, “What color would your face turn if I stuck my finger up your butt?” Then I winked and smiled. Almost every day I laugh at the things that used to make me cry. When my emotions are raw and I can’t find the humor in my situation I pray. So, when I can laugh and smile, I thank God, I can laugh at myself. My life isn’t easy, but is anyone’s life? I have discovered that helping others and prayer are sure fire ways to end my depression. Try it and even if it doesn’t help you, it will be helping someone else.