I, as I've mentioned before, was born with spina bifida, which has brought a myriad of challenges into my life. Luckily, I am able to walk unaided and lead a fairly normal, healthy life. Ah, but sometimes . . . oh boy!
Jim was a relative stranger to health problems until December 2003 when he fell off a ladder, smacking his head on the concrete walkway outside our house. His skull was fractured in two places, which was actually a good thing--if anything good can be said about a fractured skull--because it took the pressure off his brain. Although the doctors at first didn't think they would be able to save him, he pulled through miraculously. The doctors even called his survival a Christmas Miracle. Nevertheless, he did have lasting negative effects, including partial hearing loss and short-term memory loss. It's taken some adjustment, but he has learned to live with them. He's also had to deal with blood clots in his legs. He got his first one from required immobility during the recovery period immediately following his fall. Then, last year he developed another one. He didn't fall. He wasn't immobilized. He just plain got another clot. Since other members of his family have had issues too, we're guessing it's hereditary. After months on blood thinner, it dissolved. He's had other scares that turned out to be false alarms; we're always aware of the possibility he could develop more clots.
So, how do we handle our health issues? Well, we take things one day at a time. That's all we really can do. Admittedly, though, we do get frustrated with them from time to time. Here are our common gripes and what we do to deal with each of them.
1. I'm getting too old for this!: Yep, this is a biggy with me. I've dealt with health issues since I was born. Although my spina biifida was repaired shortly after birth, the damage had been done. Surgeons and therapists can only do so much when nerves have been damaged. So, the effects of spina bifida are here to stay. Every now and then when I'm tired of the doctor appointments, medications, and constantly looking out for signs my body gives me that trouble is brewing, I'll vent and say, "I'm getting too old for this crap!"
Solutions: Sometimes I cry and vent. Other times, I'll write in my journal. I answer the question What are three positive things in my life? Or, I'll write down each of my specific frustrations and, next to them, list possible solutions. Some solutions could be "better time management," or "call doctor for advice." I also say to myself, "You are basically healthy, you've got a great support system, and you're youthful for your age. Get ahold of yourself, girl!"
2. Give it some time, it might go away: This is one of Jim's. Okay, so this is reasonable--to a point. I never ignore stuff. Oh man, if I see so much as a a tiny blip on the radar screen of life, all the bells and whistles go off and I watch it like a hawk. I always go to the doctor sooner rather than later to check things out. Jim waits and waits to tell me something is up with his health. Then he waits again before he'll go to the doctor. He says, "It takes time away from work, it's an extra expense, it's probably nothing." Frustrating!
Solutions: I use reason. I remind him that if he does have a clot and he delays getting it checked out, it could let loose and kill him. What good would money and work do him then? None. If that doesn't work, I bug the heck out of him, in any way, shape or form I can think of, until he finally relents and lets me make an appointment. Never, ever mess around with your health. If the bells and whistles go off in your head telling you something is up, listen to them and get checked out by your doctor.
3. Why me?: Oh boy, here's one we both tend to use way too often. I especially asked this question when I was in my teens and twenties. Why was I born with spina bifida? What the heck did I do to deserve this crap? And Jim asked the same thing when he was lying in a hospital bed being treated with IV medication to dissolve his first blood clot years ago. Why did he have to be stuck in the hospital? Why were the nurses so noisy at the nurses' station outside his room? How could he possibly get better if he couldn't get to sleep because his roommate, who hacked and coughed constantly, watched TV all night? My response was: "Welcome to my world, honey." I've dealt with that kind of stuff all my life. He was getting a taste of it, and he found it hard to swallow. It is hard to swallow, but it's all part of life for those of us with chronic health issues.
Solutions: I ask myself another question--"Why not me?" Everyone has struggles. Even people who look perfectly healthy could be dealing with health issues. Others could be dealing with a loss of a family member or job, debt, abuse, beligerent neighbors, a child's bullying--any number of things. We all have our struggles to deal with, conquer, and learn from. That's life. So make it the best life you can in the process.
4. I can't do anything!: Ah yes, guilty here! I've had a lot of surgeries, and times spent in a wheelchair, and out of school, and out of work over the years. I couldn't go for hikes and run and jump and play with my siblings at times. I still can't keep up with others very well on hikes. Or, I'd get on a roll, exercising big time, then get hit with an injury and benched. It gets frustrating when the things you'd love to be doing are just not possible for weeks and months at a time.
Solutions: Find something else to do! I've always loved to write and read and draw. You don't need to walk to do those things. I also used my imagination to invent a world where I was active, healthy, and popular, running, singing, and dancing throughout my childhood. My bedroom was my sanctuary. I'd disappear into my fantasy world there and relish it. Years later, a psychologist told me that that was the healthy thing to do. Daydreaming, as long as you don't actually stay in a dream world, is a very healthy and acceptable way to deal with problems. It can help you find solutions to your problems and let you forget about of troubles for awhile. I had no idea I was doing something really good for myself at the time, but it helped me tremendously.
5. Nobody likes me!: I went through this one, too. As a kid, I imagined everyone staring at me. If I saw someone laughing, I thought they were making fun of the way I walked. I was painfully shy and afraid to get involved and open up to others. It's difficult to be "different" as a kid. As a teen, it really wreaked havoc on my psyche. Teens want nothing more than to fit in, and I didn't feel as if I fit in at all. I was using a wheelchair at the time, and when I did walk, I kind of wobbled. I didn't have the confidence that I assumed all the other kids had. They looked happy and were active. What problems could they possibly have?
Solutions: Ah! You never know what's going on inside another person, so avoid judgement. Those happy-go-lucky kids could have a lot on their plates, too. I learned that from therapy and a good friend as a teen. And I learned that I was Amy who happened to be born with spina bifida, not a girl who was born with spina bifida whose name was Amy. There's a big different there, folks. Think about it. My attitude was more a problem in my youth than the attitudes of the other kids. Did they really not like me? Nah. The trouble was, I didn't like myself. Another thing I learned was that not everyone stares at me because I walk funny. I learned that from a little girl in a Florida grocery store parking lot. This little girl--probably 4 or 5 years old--said, "Mommy, mommy, look! She's a little mommy! Why is she little?" The mommy shushed her daughter and scurried away, but she needn't have. Her daughter taught me a valuable lesson: Don't assume people are staring at you because there's something "wrong" with you; they may just be curious. That's why I urge people now to let their kids be curious and ask questions. And, parents should find the answers to those questions instead of shushing.
Another bit of advice: Do what you can. Love yourself, be good to yourself. Cut yourself some slack. If you're dealing with hefty health issues, that's tough, it really is. But it's not the end of the world, and it doesn't mean no one likes you. Find out what you can do, what you love to do, and go out and do it. Learn about yourself, your limits, your abilities, your strengths. Be open to others who approach you with honest, well-meaning questions. Scope out friendly faces in the crowd and smile, and make eye contact at school, work, or public settings and say hello. It could be the beginning of a lifelong friendship. Learn about your health issues then go out and speak to others about them. Seek out opportunities to make a difference in others' lives; it could change yours for the better as well. Knowledge on both sides can make a huge difference in how we relate to one another.
Okay, it's your turn. What are some of your gripes and how do you handle them?