Shel, I wish there was a way for you to be in contact with my Mom in Petaluma. She's a C3,4,5 incomplete quad as a result of a fall 8 years ago at the age of 71. She had been an avid walker, and my parents had travelled constantly in the US and abroad. They were really enjoying retirement. While they were visiting my sister in Boulder CO she fell off a bed and hit her neck on a dresser. She still blames herself for the accident and changing their lives forever. She believes she's going to be the cause of making them "destitute". She's angry that she's stuck in a body that's "like this". Neither one of my parents has realistically embraced her life as a quad, so they have done little modification to their home to adjust to her needs. Dad is NOT a caregiving kind of guy and I'm frankly surprised that he has stuck with it this long. They did have longterm care insurance which helped with in-home care for about 4 years and they've had their own funds that are so far covering in-home care now. But that means that Dad is still responsible, at the age of 79, of doing the nighttime care, some afternoon care, evening meals, some weekend care, and he's not coping well. She's not either. They have refused counseling, support groups. Same issues with the bowel program, and with flushing her catheter at night and he gets irritated by her frequent UTIs and visits to the ER. They've isolated themselves from most of their friends. Mom won't go out of her home unless it's for a doctor visit, at all. She has refused to use audio books (she was an avid reader), voice activated devices (except for speaker phone that she can't hang up on her own), or the newest in her collection the IPad. She only sits all day watching one of her many clocks waiting for 15 minutes to pass so she can tilt back for 60 seconds then sit up again; asking people to put her "blanket up, blanket down" and reset the thermostat one degree; or watching re reruns of Law and Order.
It rips my soul. I lost my Mom the day of her accident, August 24, 2002. I miss her. I can't have a private conversation with her, can't send her mail that she can read in private, can't send her email that she sees in private, all because she refuses to learn how to use devices that allow her communicate despite the limitations of her SCI. Visits with her become more difficult because of cost and my health, I live in NC and am disabled myself, and the tone in their home. She and Dad are becoming more impatient with each other, and with others.
Shel, find your passion. God gave you this part of life for some grand and amazing reason. I can see in my Mom's injury that He made her home a place where young women from Kenya would come to work who needed a safe, honest and positive environment to learn about our culture so they could survive here during their first few years and become mature, savvy students who were ready to move on to better things than cleaning her butt. We've been blessed with some amazing, loving, respectful caregivers who have treated my Mom with great dignity, and have embraced our family as their own; and we've been able to teach them about people who would try to take advantage of their trust, and learn how to communicate with people here a little better (so that when a person say "Get out" they shouldn't leave the room!). And each woman, after a few years gets to move on to further their education, knowing that we expect them to have better things in their lives than dressing Mom, feeding her, washing dishes and picking up after Dad.
You still have the ability to type. Communicate with people. Just start about anything, like this. Keep the dialogue going. You'll find a place where you fit, but you have to expose yourself to the world and not sequester yourself inside your home. My disability kept me home, changed my life plans, BUT I'm the one who was at home to help our NC niece get safely to my parents care in CA when she was stranded during her first business trip on Sept. 11, 2001; and I'm the one who was at home when the nieces call to discuss tragedy in their personal lives; and I'm the one that so many other friends call to talk about their MS, Fibromyalgia, Arthritis, Alzheimer's and dementia caregiving, Migraine headaches; I'm the one that the neighbors call to feed the cats and dogs when they are away or to talk to when they have a death in the family, a personal loss, a separation, divorce, a child in trouble, financial problems - because I'm here and have time and they know I'll listen and in most cases I PERSONALLY KNOW what they are going through and I care. They know that I'll research answers to their questions if I don't already know them and I'll direct them to the help they need.
You could have a great ability to do that with your background and knowledge in physical fitness and exercise. You don't have the upper body strength the men do, but you could work on keeping the strength you have (don't listen to that health insurance therapy garbage that "if you're not making progress" they won't pay, check with the local Junior/Community College and see if they have an "adaptive physical education" class which is usually very low cost or a sliding fee and tailored for your physical situation and would be an ongoing class based on your needs); find out if there is a local Community Resources for Independence agency and talk to someone there to join a group that does adaptive sports, 61 is NOT old and you can show them that old women are tough women!; share your knowledge about marathons and running as a coach on a high school team or by mentoring young women who want to train for marathons; you may still get up to the High Sierras by using one of the specially adapted bikes for paraplegics that is propelled with your arms, or it may become a trip that enlists the help of your husband and kids to get in the remote places.
You're right, the "Cure" probably isn't going to help you or Mom. And your life now isn't what you had expected or wanted. In fact it sucks. When you and your husband married your life changed from being a single woman to one of a couple, and you both adjusted. When your first child was born your lives as a couple changed dramatically, and you both adjusted. When you retired and your kids were moving on with their lives, you both were having to adjust as a couple. Your SCI is another adjustment that you both must make as a couple. It is a life changing event, but you can both adjust, you just may need some help with the changes.
I swear that peer support groups help lots. Being able to talk to someone else who can look you in the eye and say "I know" and you know they really do makes a huge difference. Your husband could go to any caregiver support group in the area, because a caregiver is a caregiver, whatever the medical situation (I say this from the experience of helping care for my mother-in-law who had Alzheimer's and gradually becoming the leader of the support group I was attending, from helping with Mom and from seeing Dad care for her). The worst thing that could happen from trying individual counseling or groups is after six months it doesn't work for you.
You live in a state with some of the best options for treatment, best laws for accommodations, most advanced thinking in terms of social issues. Consider using that to your advantage, Shel, and know that if you open your mind to it, somewhere out there is a special idea, person, project just waiting for you to find it and take it on as your new marathon.
Thinking about the future as a paraplegic in a wheelchair terrifies me, even though I have been injured for nearly 6 years. I was cycling for fitness when I was injured with a freak fall over the handlebars while avoiding an oncoming truck. I was wearing a helmet and landed on my head, but the impact "burst" my T-5 vertebrae, resulting in a complete SCI. Physical activity was very important to me (I had completed a marathon, a number of sprint triathlons, endurance bike rides, and 10k to half marathon races), I had just retired after 30 years of working, and I was looking forward to traveling and High Sierra hiking with my two nearly adult children. All of that went away in a second. I try to participate and to appreciate what I still have, but it is hard. I experience constant neuropathic pain. The bowel program routinely takes 1 to 2 hours every day. I sleep very poorly. My husband resents being put in the position of caretaker. And, as a 61 year old female, I do not have the upper body strength of the mostly male SCI population. I try to maintain some hope for my future, but have not been able to accept and be content with my condition. Sometimes I am still terribly depressed, while others I am more philosophyical about it. I know we cannot control everything that happens in life. IAll I was trying to do was to remain fit so I would age well and with independence. That is not going to happen.) I am wishing for a medical miracle, but realisticly think it is probably too late for me. Most of the time I really don't know what to do. All my doctors like me, and wish they could do something for me. I wish so too.
San Luis Obispo, CA