Thursday, September 23, 2010

And Then Life Changed...

20 years ago this morning, Sept. 23, 1990, I woke up feeling "great"! (See caveat here.) I had recently turned 18, was a month into my freshman year at college and feeling very grown up. What a bright future lay ahead of me as I mapped out my special education degree with an emphasis in deaf education. Little did I know that on this day my life would take a dramatic change.

It's 2010 now and I'm 38. Those college days are over half a lifetime ago for me. I've fought "swiss cheese" memory for the past 20 years, with ongoing short term memory dysfunction. (Over a 20-year span, that adds up to a lot of memories of important things like my kids' childhood landmarks that I have not written down lost for the long term as well). But that day, Sept. 23, 1990, is seared into my memory.

My first hint that anything was wrong was mid-afternoon when I tried to take a quick little trot up the short knoll from the grassy flat behind my dorm. Just a few months before I had impressed high school classmates with the speed I could dash the distance of the football field, but today I was winded by this tiny little jog and couldn't catch my breath for 15 minutes. How strange! And what was this overwhelming exhaustion after such a simple excursion? Maybe I needed to put away the books and take a nap on this lazy Sunday afternoon?

The nap only seemed to make me feel worse. On the way to church that night, it was clear that I was "coming down with something" when I drew my knee up to my face and found my face so hot that it left a red mark on my leg. The group I had ridden with could tell just how sick I was by the end of service and skipped our normal junk food run to drive me back to the dorm, weak, shivering, shaking, teeth chattering. I collapsed into bed and don't remember much of the next month. I made it to most of my classes, pushed through homework in survival mode and SLEPT and SLEPT and SLEPT.

I was constantly nauseated and the only foods I could stomach from the cafeteria were cottage cheese, bacon bits and tomatoes, and an occasional bagel with cream cheese. I had sudden aversion to most other foods. (To this day I will not happily touch a raisin, something I had regularly enjoyed snacking on prior to getting sick.) About half the campus seemed to have the same "bug". Many were diagnosed with mono. Everyone else seemed pretty much back on their feet with regular eating and sleeping patterns within 2-3 weeks. My fevers and pain and mental muddiness lingered all semester. (I eventually learned of a few other students who had dropped out of school due to this illness, but I did not know that at the time.) It seemed I alone suffered an immune system unable to do it's job and shake this thing that had been going around.

In God's grace, I met Rick in the midst of those very dark days. My only real memories of those next months revolve around hours spent with him. The night I met him stands out (Oct. 20) stands out mostly because I turned him down for his invitation to go out for coffee (I don't drink coffee) but ended up getting stuck talking with one of his room mates until midnight that night and was so sick the following week for my foolish late hours. Rick had played it smooth and actually asked a whole group of us out in hopes of getting to know me and I had been the only one to decline so he ended up taking a group of several of my friends out that night and he got food poisoning from his nachos at Denney's!

Our "dates" were often spent sitting at a group of picnic table under the massive limbs of old Oak trees in the middle of campus. He would sit by my side, rubbing my aching back and watching me sleep, smiling as I sort of woke up enough to carry on some conversation before laying my head down on the table and drifting back into the clutches of exhaustion. He would sketch my picture and tell me stories that would make me laugh. By Christmas he had already asked my Dad's permission to ask me to become his wife! I still am in awe that God would give me such a treasure as this man who could see past my illness to my heart and embrace me in sickness without ever knowing me in health...

I went home and slept through all 3 weeks of Christmas break. After Mom's TLC and home cooking (that I tolerated so much better than cafeteria choices), I went back for a second semester of college, thinking I had finally kicked the "bug". We rationalized that it had just been the shock of dorm life and the stress of college lifestyle that had prevented me from recovering for all those months, but now all was well. Within 36 hours of being back on campus, the fevers and nausea hit again and the nightmare started all over. The pain that had wracked my body for the previous months came back with a vengeance and now my hormones seemed profoundly effected as well, aggravating my previously well-controlled Endometriosis, requiring adjustments in my hormonal therapy, and sending me into cyclic panic attacks.

Second semester was more of a blur than the first had been. It was becoming painfully, fearfully evident that I had more than just a flu that needed time to resolve. I was repeatedly tested for mono and that seemed the likely culprit, but my lab results were so a-typical, and my symptoms so complex and confounding, that the local clinic couldn't figure out what to do with me. Though I frequently fell asleep in class, I tried hard to take good notes because I knew I couldn't trust myself to retain information otherwise. Rick took my class notes and studied for my exams for me, giving me "cram" note cards to feverishly review for 10 minutes before sending me into take tests.

Rick walked me to every class and met me afterward to be sure I got back to my dorm before I collapsed. Sometimes he would drive me to the far end of campus, handing me a sour apple jolly rancher stick (another food I finally discovered I could tolerate) he had melted into the shape of a heart, to ease my continually raw and aching throat, before dropping me off for class. My parents, who were understandably worried, frequently drove 4 hours to help when they could, typing term papers I had scribbled from my bed and bringing comforts of home. The semester seemed endless and only God's grace, Rick's constant encouragement and my parents ongoing support allowed me to continue pushing forward.

Summer arrived with mixed emotions. Such relief to be done with that first year. Such grief to know Rick and I would spend the summer apart. I moved back home to my parents and finally hit my limit. Other than the doctor's appointments they frequently drove me to, I slept away most of the summer, at least 18 and as much as 23 1/2 hours out of every 24 hours in a near-comatose state. My mom reports that she nearly called 911 on more than one occasion because I would sleep so deeply that I was unresponsive even to being shaken and her frantic yelling to see if I was still breathing.

I would fight to wake up, dreaming over and over that I knew I was asleep and needed to wake up and would struggle with everything in me to force myself to open my eyes, to move my body, to jolt myself to wakefulness, but could not. I would then dream that I had actually managed to wake up and was relieved simply that my eyes had finally cooperated in opening for me, only to discover that no, I was actually still asleep and the fight started all over again. I would have these vivid struggle to wake up dreams in repetitive cycles of 8 or 10 times in a row before I finally truly could awake, drenched in sweat and exhausted from the effort of having worked so hard to simply claw free of the clutches of sleep and finally be victorious in getting my eyes to actually pop open in an instant of wakefulness. (To this day I can still fall into these dreaming I've awoken only to find I'm still asleep and fighting for wakefulness cycles, thought thankfully they are no longer a daily battle.)

My main memory from that season was the acquisition of many new phobias (I had un-squeamishly played with spiders all through my growing up years, and now went into a panic as a harmless little guy crawled across my bed one day) and a continued struggle with pain and monster hormonal/mood swings. I literally felt like I lived in a fog, that to look out through my eyes was like trying to look out at the world down a long tunnel. I could only cope with focusing on one stimulation at any given time - one voice, one sound, one face, one input - I sometime could watch t.v. or read, if everything else around me was quiet. Anything more and I was overwhelmed. I asked for ear plugs and often had to close my eyes simply because it took too much effort to process the visual or auditory stimulation.

Obviously I did not get a job the summer of 1991. Neither did I return to college the fall of 1991. By the spring of 1992 it seemed I was finally "getting better". After all, I had learned to cope with the chronic nausea and tight throat so was eating more consistently. (My personal mantra became "food equals energy" because of the very brief energy boost I could sometimes obtain by eating. Between that theory and the constant abdominal pain that felt much like hunger, I rapidly gain 40 pounds and outgrew my wedding dress before our wedding.) I could actually get out of bed on my own now, was only sleeping 14-16 hours most days, could even take a brief shower or two without assistance each week (though that effort would put me back in bed for the rest of the day).

Rick and I ached to be back together so I moved back to southern CA to "nanny" for a family from our church with the intention that we would receive premarital counseling from one of our college professors. Looking back on my time living with this family I primarily feel an overwhelming sense of guilt because I took so much more than I gave, often failing in my obligations to be available to care for their children when needed, but freely helping myself to their generosity of providing food and shelter and often hosting Rick for meals so we could be together as well.

Rick and I married in August, 1992. We planned a brief but beautiful service and my huge accomplishment was that I actually was able to walk down the isle on my Daddy's arm and stand through the service. All our wedding pictures where I appear to be standing next to Rick, I was actually seated on a bar stool with my hoop skirt (of my second wedding dress!) covering down around it so that I was close to my standing height but could be sitting. I spent our honeymoon in a wheelchair. The first years of our marriage I still spent the majority of every day in bed (bed-bound about 4-5 days of the week) and was primarily housebound for about the first 5 years of our marriage.

Rick took me to church most Sundays and I sometimes would go hang out in the our store for a change of pace, but beyond that I rarely left home. Gradually I learned to drive again, as far as the grocery store, but couldn't be on my feet long or I wouldn't have the energy to drive home again. By about our 5th anniversary (or around 7 years after first becoming ill) I could finally drive myself to a town half an hour away about once every week or two and even joined a weekly Bible study with Rick. I made one attempt at a drive an hour and a half from home one time and quickly learned that was well beyond my limitations!

I attempted part time work for a few very brief periods over those years but always landed myself back down hard in bed for a long stretch within a week of even trying to work outside our home. Our long-awaited son was born 7 1/2 years into our marriage and I learned a quiet but consistent schedule that allowed us to lead what seemed to me to be an amazingly "normal" life, including a weekly MOPS (play group) meeting. At my very best I got up to about 70%, or maybe on my very best days 80% functional, compared to my life prior to illness, still with ongoing setbacks day-to-day.

There has never been a day in the past 20 years where CFIDS did not impact my life on at least some level, but there was a beautiful season of several years where, overall, my health concerns were on the back-burner and I could move through life and think of myself as a pretty normal person. This is not to say I was ever symptom-free, and I certainly had setbacks like moving into a new house nearly 6 years ago and spending that entire first year quite sick from new carpet and pain smells, triggering multiple viral and bacterial infections and a new battle with asthma. But through my season of "better" years, Hannah's Prayer Ministries flourished under the hours I poured into it, we were blessed with three living children (now 10, 7 and 4, with birthdays upcoming in December and January), and I wrote my first book.

I started noticing some strange symptoms that concerned me after the births of our daughter in 2003 and even more so after our youngest son in 2006, tingling sensations in my arms and legs, loss of grasp, and other mild "MS-like" symptoms, but doctors couldn't find anything of significance. In the spring of 2007, when our youngest was 16-months old, life dramatically changed once again. We were excited to enjoy a family vacation to Disneyland. We went with my husband's parents so we had four adults to care for three children. They spoiled us with the gift of a hotel room right on the Disney property so everything was easy and accessible. I tried to pace myself, but woke up significantly dragging and visibly limping the second day. We rented a wheelchair and I pushed on, staying in bed for a large portion of our third/final day.

It was all too much. I came home and landed down hard in bed for the next 5 months. It has been an ongoing daily battle every day since. The MS-like issues have escalated with involuntary muscle twitching at rest, and many random nerve sensations ranging from pain to tingling to numbness. I battle vertigo frequently and when I'm especially tired I drag one foot when trying to walk. I rarely leave the house without a wheelchair and often hold my hands out for balance when walking in my own home. I completed a survey this week that helped me see that my current ability is around 35-40% of my pre-illness ability, and that's a marked improvement from those first earliest years as well as the setback that had me in bed for much of 2007. I grieve that my children are growing up without ever knowing the mom I so long to be.

20 years ago today I woke up feeling (relatively - see here for background) great. And then life changed...


Anonymous said...

Sweet, Gentle friend, I have one thought...

You ARE the Mom God planned for those children. He knew the struggles you would face, yet he still brought those precious babes into your life On PURPOSE. You may not jump and run with them, but I know you spend hours reading in bed and snuggling them. You ARE the mom you are supposed to be.

Like our beloved Paul, you have a thorn. Why? No clue! But, God has used your thorn(s) to allow you to open doors to minister to others in ways you never could have dreamed would happen. My very best and closest friends have come into my life through YOU and your ministry. Really, it is selfish of me for sure, but I am blessed by who and what you are...faults, illnesses, and beauty all wrapped up into one package.

I love you like a sister.

You are in my prayers.

Sue Jackson said...

Wow, Jenni. Thanks so much for sharing your story. Mine is the same in that one day I was vibrant and healthy and the next I was sick and never recovered. But I was 37 when that happened. I can't imagine getting so sick at such a young age.

You are a strong and courageous woman.


MandyRae said...

You are such an inspriation to me. I dont think we'll ever understand why God chooses some for such heartache but you can be sure your trials and how you've made it through them have encouraged so many others. Thank you for sharing your story. Mandy Stevenson

Anonymous said...

Your story is so familiar. Thank you for sharing it with all of us. This also happened to my husband, when he was beginning his senior year of college. He was a worship leader and on-air radio personality at a local Christian station. We married in the midst of illness also, October 16, 1992. Only we didn't yet know what he had (CFIDS) as he had been misdiagnosed. I look forward to looking at your blog more, as I have time.

Tina said...

This is the first time I have heard/read your full story Jenni! Thank you for sharing with us.
It's so hard to understand sometimes, but God certainly has accomplished much through you!!

Lori said...

I'm so appreciative you shared so much of this. I know it couldn't have been easy to share, much less live. I pray for your strength and acceptance daily and am so appreciative of the ministry that has come from your misery!!

Pippa said...

Hello there.

This post drew my attention to some bizarre things we have in common: I also have M.E. (5 years now), I am a believer too, AND you were studying Deaf education - this autumn I started a Masters in Deaf Studies (but had to stop because I wasn't as well as I thought I was).

Really great seeing so many answered prayers on your blog. Just thought I'd say hello and encourage you because you've encouraged me.