Wednesday, September 22, 2010

It Was Like...Magic

"Well, it was a million tiny little things that, when you added them all up, they meant we were supposed to be together... and I knew it. I knew it the very first time I touched her. It was like coming home... only to no home I'd ever known... I was just taking her hand to help her out of a car and I knew. It was like... magic." - Sam Baldwin in Sleepless in Seattle

Someone recently suggested that I write about how I met & married my husband. Since I do happen to be married to the most wonderful man on the planet, I thought it was an excellent idea! So here goes:

I don't remember ever officially "meeting" my husband, Jerry. We grew up 4 blocks from each other & went to the same high school. He was a few years ahead of me, but we hung out with some of the same people. Besides, it was a pretty small school by today's standards - only 500 students in 8th - 12th grades by the time I graduated - so everyone just sort of knew (or at least knew of) everyone else.

As I said, Jerry & I had some of the same friends, so we would cross paths from time to time. I thought he was sweet & really cute, but I was too young to date, so even if he had noticed me, which he now says he had, it couldn't amount to anything. Awhile after he had graduated, however, he finally asked me out. Well, actually, since he was the shy, quiet type, he had a mutual friend ask for him. Since I was now old enough, & since the mutual friend, when I asked him if I should go or not, said I should, I said yes. (Undying gratitude to you, Charlie, for your fabulous advice!) We dated on & off for the next several months. It never became serious, but in hindsight we both realize that we had a deep connection even then. One particular event pretty much sums it up. We were sitting on my front porch one day & out of the blue - & totally out of character - he looked at me & said, "I could be married to you." That surprised me, but we followed it with some playful moments of me calling him "Husband" & him calling me "Wife", but that was the end of it. Or so we thought.

Many years & a lot of life went by for both of us. Jerry's led to marriage, a child, a major career change to the job of his dreams, a few moves & a divorce. Mine, of course, led to college, the car wreck, spinal cord injury, quadriplegia, & adjusting to my new life. Then one day we saw each other. We talked, we caught up, we laughed and, well, to quote Sam Baldwin (& Annie Reed), "It was like...magic." He told me later that when he looked at me he didn't see a quadriplegic in a wheelchair. He saw that 15-year-old on my front porch He saw ME. That's just one example of how amazing he is.

We started dating & quickly fell in love. We began talking about marriage, & the one thing I asked was that he not propose on a holiday because I wanted a separate "special" day to remember. So what did he do? He proposed to me on Christmas Day! I was so shocked that I thought he was kidding. After all, I TOLD him I wanted a separate day. He ended up having to ask me 4 TIMES before I could get my "Yes" out. The 1st two times I thought he was joking, the 3rd time I was crying & the 4th time I was finally able to answer. His excuse for asking on Christmas was that it was the last thing I would expect. Well, he was certainly right & his surprise worked!

Up until a few weeks before Jerry proposed, I had a combination of professional caregivers & my mom taking care of me. As a quadriplegic, I need someone else to do almost everything for me. If they don't do it for me, they at least have to set things up for me to do it myself - like give me a special splint, for example. In early December, 1992, I lost my live-in caregiver. My mom, who was 68 at the time, had developed rheumatoid arthritis & no longer had the strength to bathe me, dress me, etc. We hired a daytime caregiver & Jerry decided to move into the live-in caregiver's room & take over my nighttime & weekend care. Over the previous few months, my mom had already been teaching him all that was involved in caring for a quadriplegic. It is a HUGE responsibility including VERY personal contact. It requires an enormously special heart - truly a gift from God - on the part of the caregiver, as well as complete trust from me in that caregiver. After all, my life is LITERALLY in their hands. Jerry rose to the challenge & showed me all the love I could hope for. He learned the proper & safe way to bathe me, to dress me, to transfer me to & from my wheelchair & many more things that are simply too personal for me to write about. (If you're really curious, just Google "SCI quadriplegic care" & you'll get a ton of info.) Suffice it to say, he went FAR above & beyond. Heck, he even learned how to use curling irons, barrettes & mousse to style my waist-length hair! That in itself should earn him a medal!!

Because we felt it imperative that Jerry have a truly thorough understanding of the commitment he was undertaking, & because I dreamed of a Spring garden wedding, we had a fairly long engagement of 16 months. Jerry was involved in all the planning, & like a good groom should, he liked everything I chose. :-) When the day finally arrived, it was truly beautiful. It was a very touching day (& I'm not being biased. People still tell me so.). The whole day was a dream come true to me, but one very special thing to me was that Jerry got on one knee to say his vows so we would be eye level. It about killed him since we were on brick pavers, but he just laughed off the pain. To this day, remembering that act of kindness always reminds me of how special he is. You see, when you spend your life in a chair, you're always looking up. In groups, at parties, chatting before church, shopping...everyone is above you, & you always have to crane your neck to join in. Understandably, most ABs (that's "crip speak" for able-bodied people) don't really think about how difficult that is for the wheelchair user. It can make us feel unnoticed, unheard & a bit claustrophobic. It can even quickly become quite painful for a quad who's had neck spinal fusion surgery. Sometimes someone will pull a chair up to sit by you to talk, if one's available. Occasionally, someone will squat down to you, but that's VERY rare indeed. When it does happen, it makes me feel very cared for...very special...very loved. So to have Jerry kneeling eye level during our vows is a treasured memory to me.

After our marriage, we continued living with my mom in the house I had grown up in. My caregiving situation stayed the same until November, 1995. My paid caregiver had a child die, so she had to quit working suddenly. We tried a different woman, but she was a nightmare! No matter how many times Mom or Jerry showed her how to do something, she just couldn't get it. To this day, Jerry & I jokingly use the expression, "Oh! OK!" to mean we have no clue what's going on, because that's what that woman said every...time...we...showed...her...something. My mom was so worried for my safety that she stayed home from work to watch over me. Well, after a few days, Jerry decided to make a change. Since none of us trusted this woman, & since we wanted to build our own house & knew we couldn't afford a caregiver & a mortgage, Jerry decided to become my full-time caregiver. In order to do that, he had to request a change of shift from his employer from day shift to midnights. It was granted & our new life began.

At first, when Jerry got home from work at about 7:15 am, he would start his second job by getting me out of bed & fed. He'd then take a nap until lunchtime when he would get up & feed me. Then he'd go back to bed until dinner time. If I needed anything in between times like the door opened, or my urine leg bag emptied, or a book, or whatever, I had to wake him. I hated doing that, so I tried to wait until I HAD to wake him to empty my leg bag. Mom usually made dinner after she got home from work. At night, Jerry put me to bed & then left for work at about 10:30 pm. On the weekends, he'd flip his sleep schedule so he'd be up during the day. It was grueling for him. After a few months, Mama retired from work. That made it a bit easier for Jerry. He was at least able to sleep all day after getting me up because Mama saw to my other needs.

Eventually, we found some land, sold our house & built our current one. The three of us moved here in September, 1997. Life continued pretty much the same way for a couple of years - except Jerry had a 45 minute commute instead of a 10 minute one. Then Jerry noticed that my mom had stopped asking him to pick up her prescriptions. He found the bottles in her in-law suite & noticed she'd stopped taking them. We put that together with some other oddities & decided she needed a trip to the doctor. She was eventually diagnosed with Alzheimer's, which we later discovered was actually Vascular Dementia...she'd had at least 6 "mini" strokes...but the results were the same. My mom was losing her memory & abilities.

Over time our roles changed. Instead of Mama "being my hands", I became "her brain". After Jerry got me up & in my chair, I would talk her through the steps of getting herself dressed, fed, etc. At first I just reminded her to do things. Later, I took her step-by-step through each item ("Pick up the pants. Sit down. Put your leg in." etc.) As a quadriplegic, I have had to become an expert at communicating my needs & instructing others in how to carry out tasks...& an expert in patience. These skills helped tremendously with Mom. Blessedly, she was able to understand my instructions for several years, & was even still able to help me some in return.

Sadly, as is the case with dementia, my mom progressed to the point where my instructions weren't enough. By December, 2002, we had to use a combination of adult day care & hired caregivers for her. One woman, Janelle, (who we still think of as our angel & are blessed to call our friend) came on weekday mornings to get Mom up & drive her to the adult day care center for dementia patients. On most days, Jerry was so tired that he would have to take a nap after work before getting me up. Many times he even fell asleep in his car in the driveway. When that happened, Janelle would wake him when she got here & send him inside so he could get me up. With Mom gone all day, Jerry & I were back to our original routine of my having to wake him when I needed him. It was really rough on him.

In the evenings, another caregiver would pick Mom up, bring her home & look after her needs. On the weekends, she had caregivers at home all day. These ladies were a blessing to us as well because they occasionally helped Jerry with tasks around the house like cooking, laundry & one girl even once in awhile helped him in taking care of the acre of land we have. But if one of the caregivers didn't show up...which happened from time to time...Jerry had to, not only work, take care of me, take care of the yard & the house & the grocery shopping & the cooking & the laundry & everything else, but he also had to take care of my mom. How many guys do you know who would do that?

Eventually, in Fall, 2005, my mom's dementia advanced to the point that we had to make the difficult decision to place her in a nursing home, & a few months later, she went Home to the Lord. After 10 1/2 years of marriage, that was the first time that Jerry & I were alone in our one home. To be honest, it was a little weird & took some adjustment on both our parts. But while it was harder for Jerry physically because he no longer had ANY help, it was, in a way, mentally better because he could set everything up in the kitchen, laundry, etc., just the way HE liked it...a plus for anyone.

With Mom gone, it was time for us to make changes again. Jerry's working night shift was dangerous for me. After he put me in bed at night & left, I was literally TRAPPED there, alone, until he came home. If anything had happened, like my getting choked on my saliva (which happens), a power outage, tornado, fire, etc., there would have been nothing I could do. So after more than 10 years, Jerry put in another shift change request & was back on day shift. And, after nearly 20 years of knowing someone was always in the house if I needed them, I had to learn a lot of independence...something impossible in my bed, but MUCH easier in my wheelchair.

At first, it was a bit scary, but God has blessed us with GREAT neighbors who have always been a phone call away. I've now grown to love my "independence"...such that it is. Jerry's day now starts at 4 am. He gets up & gets himself ready for work before waking me at 4:30. He gets me dressed, in my chair, etc., & gives me a pillow & blanket so I can recline my wheelchair & go back to sleep for a couple of hours. (It's not comfortable, good sleep, but I'll gladly take it!) Then he leaves for work. He leaves my protein shake & lunch & special fork in a lunch bag on the table. (Feeding myself regularly is one of the things I've had to gain the strength to do.) He makes certain the blinds in my hobby room (Mom's former in-law suite) are open, my computer is on, & my iPad & glasses are clean & accessible. He installed a new thermostat with a remote control so I can adjust the HVAC. As for my catheter/leg bag, he found an automatic emptier & attached it to my wheelchair. I can open & close the doors now, so I can come & go as I please. And occasionally I have friends come by or take me out to "play". And as I said, my neighbors are always close by & willing to help.

When Jerry gets home from work, he still has to begin his "second job" around here. He's still responsible for all of the grocery shopping, cooking, laundry, cleaning, car care, AND my care, & doesn't usually get to sleep until 10:30 or 11:00 pm. We were blessed to find yard help about a year ago, which has been a HUGE blessing to him. On top of all of this, Jerry is ALWAYS willing to help those in need. When a neighbor, friend or family member calls, he answers, "Yes" whenever possible. For example, he just spent 2 days doing "extreme yard work" for his elderly parents, is waiting on parts to fix his dad's car's brakes, has a friend's dirt bike in the garage to repair, & married two high school friends this weekend!! (He became ordained last Spring so he could marry my niece & her husband.)

Jerry & I have been together now for over 18 years. We've been married of over 16 years. And he's been my only caregiver - without a break - for nearly 15 years. And he never ceases to amaze me. "They" say a spouse should never be your caregiver, & I can understand why. But "they" don't live in the real world where you either have to be very poor or very financially "comfortable" in order to have hired caregivers. I KNOW how blessed I am to have Jerry. I PRAY we could have other caregivers until I am healed. And when I day dream, it's not of all the travels I'll take or paintings I'll paint or dances I'll dance. I DREAM of caring for my husband...of scrubbing toilets, ironing his shirts, cooking his meals & being the wife he deserves. As I said at the beginning of this, Jerry IS the most wonderful man on the planet. He isn't amazing because he takes care of me. He takes care of me BECAUSE he's amazing!

And God knew & planned way back there on that Spring afternoon on that front porch...and it was like...magic.

Thursday, February 18, 2010

Questions, Questions, Questions

That's what today is all about. Questions. YOUR questions. I've been writing this blog for a little over a year now & I've written the things that I THINK you want to know. But now it's your turn to find out what you REALLY want to know. The floor is yours. Ask away.

I know there are things you're curious about, so let her rip. Maybe you want to know something specific about my care. Maybe you're interested in my daily routine. Perhaps you want to know what happened next in rehab or what it was like going home again or how aging has affected me. Maybe you have a spiritual I have such I ever blame I think this is for His purpose? Or you could just want to know how my husband & I fell in love...or what I like to eat...or my favorite color...or even what I do when my nose or head itches! Whatever it is, this is your chance to ask. I'm a firm believer in the fact that the only stupid question is the one left unasked, so ASK.

I'll give you about a week or so to ask away & then I'll start answering. You can include your name or ask anonymously, whichever makes you more comfortable. Just use the comments section at the bottom of this post to pose your questions. (For those of you who reach my blog through Facebook or Networked Blogs, be certain to post your questions in the "Comments" section ON THIS POST & not on the Facebook or Networked Blogs comments section, please.)

I'm looking forward to hearing from you!

Monday, February 1, 2010

Monday Moment

It's Monday morning. A new week. A new month. So I thought it'd be a great time to start a new feature..."Monday Moment". Maybe this will be a regular post where, each Monday, I jot down a few of the random things on my mind. So, here goes...
  • I hope I'm more consistent with this Monday post than I've ever been with keeping a journal. Just 2 weeks ago I found an old journal from 1983. The first page talked about how I planned to FINALLY keep a journal consistently! It had 5 written pages, all from that first day. So much for KEEPING the journal...well, unless you consider the fact that I still had it after 26 1/2 years "keeping" it.
  • Eight years ago today my daddy died. I still miss him. I am to that stage where I truly rejoice for him that he is with The Father, worshiping Jesus at the throne & would NOT want him to give that up to be here. But every now & then I still catch myself wanting to send him an email or give him a call to ask his thoughts on something. I miss him, but at least I can type that without crying now.
  • I found a program that lets you turn your blog into a book. A lot of folks have said I should write a book, but I've never known how to begin. Maybe that's an answer. We'll see.
  • It's really cold still. If you read my last post, you know how happy THAT makes me.
  • The sky is an absolutely gorgeous shade of know the one...deep, rich, cloudless, lapis blue. I call this color of sky "the color of God's eyes" because nothing could be more beautiful. I could just MELT into it!
  • I have tried working out the last 2 Mondays & it ruined me for days. I only did 5 minutes of aerobics from a DVD made for quadriplegics. I was exhausted afterwords & didn't recover until Thursday! I new I was out of shape, but this is worse than I thought. I need to do something, but I don't know what. I know I'm NOT doing the workout today though! Any ideas?
  • My oldest niece is on her way over for a visit. She's bringing my first great-nephew to see me. He's 2 months old now. I haven't seen him since Christmas. I'm excited! My nieces have always been like my own children. That makes The Little Man sort of my grandchild. I bet he's changed a ton!
  • Looks like we need a new furnace. I'm not happy about that. It doesn't exactly fit into our Dave Ramsey Debt Snowball. I have no idea how much it'll cost yet. At least, thanks to Dave, we have an emergency fund in place, so it won't destroy our finances...just put a severe dent in them. I highly recommend Dave to EVERYONE.
  • I want an iPad. I can't afford an iPad, but I WANT an iPad. I have an iMac on my first Apple product...& I LOVE it. I've had computers for 22 1/2 years, my first being a pre-Windows laptop that used DOS. I am hooked on Apples now. I know the iPad is just an over-sized iTouch, but that's what makes it perfect for a quadriplegic. The iTouch is just too small for me to use...I just don't have the dexterity. The iPad would be perfect. If anyone reading this works for Apple or knows anyone who does, I would love to be a product tester for you! Or if you'd just like to donate to my cause, I am not too proud to accept your gift!
That's just a few of the crazy, random thoughts going through my head right now. (Believe me, there are more, but my family just got here, so let the spoiling begin!) When you can't physically DO a lot, you tend to THINK a lot. Can be a good thing, but can also be a very bad thing. Today, not so bad.

Hope I didn't bore you too much. I'd love to hear what's on your mind right now.

Wednesday, January 13, 2010

Baby, It's Cold Outside!

I hate winter! SERIOUSLY!! I mean, this "global warming" thing has got to STOP if it means I keep waking up to 16° F mornings with highs in the 30s...which is exactly what's been happening for the last several weeks. Ordinarily, my koi pond may freeze once in a freak cold snap each year, but it's been frozen over for days! I know that to those of you reading this from places where it gets "really cold", you're probably thinking I'm a wimp, but this just isn't natural for Georgia, & I can't handle this cold! No, I mean I REALLY can't handle it.

As a quadriplegic, my body doesn't regulate it's temperature properly. The technical term is poikilothermic, which means that my body temperature varies with that of the environment. Merriam-Webster defines it as "the state of being cold-blooded" (& no, I'm not referring to my personality, so no wise cracks). This term usually describes all animals except birds & mammals, so I am using it a bit loosely, but it's the best description of what I deal with.

You see, in most people, the nerves that run throughout their bodies send signals through the spinal cord to the brain that let it know if the body is hot or cold (above or below 98.6°F on average). If it's hot, the brain sends signals through the spinal cord telling the body to sweat. The moisture on the skin in turn cools the body. When it's cold, the brain sends those signals telling the body to shiver & for the blood vessels to constrict, raising blood pressure & warming the body.

Because of my spinal cord injury, my cord is blocked, preventing messages from passing back & forth (think: outage on a phone line...the body is making the call & the brain is making the call, but neither one can get through.) This causes several problems:
  1. I don't sweat.
  2. I don't shiver.
  3. I don't move around much.
  4. I can't tell when I'm getting too hot or too cold until it's too late.
  5. Additionally, I happen to have very low blood pressure normally - 80/50 on average - & a lower normal body temperature - 97°.
So here's the scenario: In the summer, if I don't pay careful attention to the outside temperature & humidity, I can get over heated. My body won't sweat, so my temperature just keeps rising. I've measured it as high as 104°F, but I can usually tell I'm in trouble by the time it hits 101° or 102°. I get stuffy headed, miserable, splotches on my skin...the usual signs of fever. At that point, all I can do is get in air conditioning, put cold cloths or ice on my neck & thighs & drink lots of cold water. This little problem has sent me to the emergency room a couple of times, but after 23 years, I'm pretty in-tune with my body & manage to avoid danger. How? If I'm outside, I dress in thin, sleeveless clothes, I stay in the shade, use a misty sprayer on my skin (think: artificial sweat), drink ice water, use a "cool wrap" on my neck, etc. And at the first sign of over-heating, I go inside. I have had to use some "at home" treatment a few times, but I haven't been the the ER for this since I left my high school reunion in an ambulance in June, 2000 (Yeah. What an exit.)

The winter is different (read: worse). When it's cold, my true "lizard & snake" connection really shows. When I get hot, I feel uncomfortable, but when I get cold, I'm downright MISERABLE!! Because I can't move around much & I have low blood pressure, I get cold VERY easily. I can feel when I'm cold, too...mostly in my shoulders, ears & face since I have normal sensation there. Because of this, I tend to hunch-up my shoulders a lot in lieu of shivering, which causes neck & shoulder pain leading to headaches. If I'm not careful, I can go from "just cold" to "borderline hypothermia" fairly quickly.

I've only had one recorded "medical emergency" from my being cold. It occurred in February, 1987, when I was still at Shepherd Center. It was about 2 am & I was awakened from a "sound sleep" (read: semi-consciousness) by several nurses working feverishly (pardon the pun) to raise my temperature. They had been doing their rounds checking vitals & couldn't get my temperature to register...& couldn't wake me. I came to as they were piling warmed blankets on me, putting a hat on my head & trying to get me to drink hot chocolate. I did, of course, eventually warm up, but they were pretty concerned for awhile. Since then, when I have gotten really cold, I've just repeated their treatment at home - piled on blankets & hats, drunk warm liquids & (my trick) turned a hot hairdryer on my head, neck & shoulders. Mostly, though, I try to avoid getting that cold in the first place.

Unfortunately, it is far more difficult getting me warm when I'm cold than cooling me down when I'm hot. I live most of the winter in sweatshirts & blankets. I don't go out anywhere very often - I'm pretty much a shut-in in the winter. We have a forced-air gas furnace in our home that I keep set between 78° - 82° during the day & around 71° at night. (My husband, Jerry, lives in shorts when home, & my friends & family all know to wear layers that they can peel off when visiting.) I drink a lot of hot tea & hot water. I sleep with a towel on my head (like the nightcaps people used to wear). And none of these things really keep me warm.

The one thing that never fails to get & keep me warm is sunshine. "Hello, my name is Sandra & I am a sunshine-oholic!" If I am cold, put me in a south-facing window on a clear day & I am THRILLED!! Works EVERY time! The minute I feel that bright sunshine bathing me in it's warmth, I just feel better all over. My muscles relax, my mood improves & I get happy. I get comfortable. I get...well, warm. Like a flower, I am literally drawn to the sun. And, like a lizard or a snake, I bask in it's warmth as a means of survival. The sun is such a vital part of my health, welfare & survival that when we bought the lot to build our house, we specifically looked for one with no trees & with the back yard facing south. We even got a variance from the county based on a letter from my doctor so that we could position the house perfectly for me to get the most sun exposure in my conservatory-style (glass roof) sunroom. My desk, where I currently sit typing this blog, sits sideways beside a 6o" south-facing window under a heater vent. And when the sun shines in, no matter that it's 26° outside. I sit comfortably in 85° - 90° sunny warmth.

So, yes, I hate winter, but with good reason. But as always, I look at the bright spot. The first day of winter - the shortest day of the year - was nearly a month ago. That means the days are getting longer, spring is on it's way & warm days with it. Lord, please send it quickly!