Lessons from Bob and Debby
By: Saralee Perel
I so wish it didn't take my spinal cord injury for me to realize that what matters the most to me are the unadorned blessings -- simple times, simple gestures, most of which don't cost money. Most of life is made up of simple things. If I don't notice and appreciate them, then I'm missing out on most of my life.
Once a week, my husband, Bob, buys lottery tickets. I asked him, "How would your life change if you won?"
"Well, I don't want more things."
"They why buy the ticket?"
"It would allow me to spend more time with you. The best time I've had this week was sitting on our porch brushing your hair. That didn't cost a dime. So if I won, we wouldn't have to work as hard and we could be together more."
We were sitting on our porch. He kissed my forehead. "Money wouldn't have prevented what happened to you."
Now, I'm not living in fantasy land. There are people who don't have homes, cars, food or medical care for which money would surely matter.
My appreciation of simple things was cemented when I received a life-altering e-mail, with a heck of a surprise twist, from someone in Colville, Washington named Debby.
"Hello Saralee, I read one of your stories. It made me step back and look at life differently. I'm learning to love so many things I hadn't noticed before. The birds, when they begin their morning songs. The smell of brewing coffee as it floats to me from the house. I can hear my husband moving about getting ready for morning and my dog, Lamar, and my cat, Sammy, chasing each other for a morning play."
What made me metaphorically stop in my tracks was when she added, "Lamar is my seeing eye dog."
She wrote, "I love to hear my husband's wry humor as we watch the morning news; his gentle voice as he talks to our cat. These are now the things that I love and am so grateful for. Thank you for reading this."
Debby is thanking me? I thank her.
Debby has been blind since birth. Her way of thinking does not come naturally. She said, "Well, I have had to fight being a pessimist. But hey, who wants to sit around feeling sad or angry? Then I just make myself and other people miserable. So now I think of every day as a new day to enjoy life. It's the simple things in life and love that make everything work."
I wrote, "You're an inspiration."
"Me? An inspiration? I don't think so. Lol."
It's not a natural process for me to be grateful. Frankly, sometimes I actually force myself. Why? The alternative of focusing on things like my inability to dress myself just sends me into depression. And many times I am in that depressive mode. Sometimes I just stay there. I think that's normal after something like a sudden SCI. But it feels lousy.
I wrote to Debby, "Your e-mail came at a perfect time. I've been feeling so pessimistic lately and focusing on all I've lost. I hate wasting precious time feeling this way. I get caught up in so many things that don't matter when in reality, I have so much to be grateful for. Thank you from my heart for your beautiful words."
"You are so very welcome! It certainly is easy to get our priorities and everything all mixed up, isn't it?"
Debby's words changed my life in an instant when she wrote, "I realize that the more thankful I am for whatever happens in my life, the more joyful I am."
Recently, Debby's husband, Craig, became very sick. She said, "Craig was in the ICU until yesterday. It is so very, very wonderful to have him home! Life is even more precious, since a week ago they were VERY concerned about him."
Later, I e-mailed to see how Craig was doing. "Craig is home and on oxygen. I even learned how to work the oxygen tank! Life with Craig is sweeter than ever. Whatever happens I'll just keep rejoicing that he's here with me today."
After thinking about Debby's gratitude for things that have nothing to do with wealth, I said to myself, "Name 4 things for which I'm grateful, that didn't cost me money."
1. For the first time in an e-mail, a friend I've known for 12 years signed "Love," before his name.
2. A woman named Vanessa, whom I've only seen inside my doctor's office arranged to have a full-course meal delivered to my home.
3. Once, when I turned my head away from the table, my little cat who was given 2 months at the most to live, over 2 years prior, was gorging himself on the gravy.
4. I learned from Debby that love, beauty and gratitude isn't something you see with your eyes.
Available to download: Over 100 PDF fact sheets organized alphabetically on various topics from Aging with SCI to Wish Granting Agencies.
Also contains disability resources for each of the 50 United States and 31 countries (where possible the country fact sheets are in the native language of that country).
Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
American Association of SCI Psychologists and Social WorkersPromote research to improve quality of care and works to improve skills and techniques of members.
CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.
Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.
Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.
Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.
Caregiver.comOffers a directory of support groups for caregivers.
The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.
Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.
FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.
Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.
Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.
National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.
New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.
Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.
NJ Self-Help Group ClearinghouseEnables people to help themselves with self-help groups.
Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.
Red Cross Family Caregiving ResourcesInformation for caregivers.
SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.
Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
University of Alabama at BirminghamOffers an information sheet (Info Sheet #11) on bladder care and management.
United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.
U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).
Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.
Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.
Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.
This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO