I read a book recently, fiction, in which the main character was a guy who had a medical condition that would eventually render him totally functionally impaired in every way. The character in the present, was an ace hockey player, who refused to get involved with any woman because he was convinced that as soon as she knew his fate, she would stop seeing him as the hero jock he loved being, and feel sorry for him, possibly even leave like the last one he gave his heart to, and worse, if she was willing to stick around, no way did he want to subject her to the total care he would eventually require. It turns around for him in the end of the book, and leaves us with him at his peak of happiness, letting that pesky future fade off into the distance where we would like it to stay.
Another book I read not long ago, (I don’t go looking for these story lines, sometimes I think God has something to do with it), was about another young couple who were married, starting out with young children, and the husband/father was up-and-coming in his accounting firm. In this story, the man’s wife knows very little about her husband’s father, only that he had gone away when her husband was very young, and neither her husband nor her mother-in-law ever spoke of him. The story itself is set back in the nineteen forties. The book seems like a fairly average account of a family life until the day the husband in his late forties, begins losing things and having difficulty keeping track of his schedule. It turns out he has a rare early dementia, which tends to progress rapidly. The wife/mom struggles to raise three kids, two of whom are very challenging, while the dad fades away in an asylum, and the story has some surprising twists and turns. It has a good bit of heartbreak, and still some elements of redemption.
This week has been one of the periods of heaviest fatigue that I have experienced in a while. One of my frustrations in having narcolepsy is the fact that in general people don’t realize fatigue is a major factor for many of those who suffer narcolepsy. Even doctors. They tend to jumble up sleepiness and fatigue into one “thing”, when it is not. Sleepiness can be treated with counteracting stimulants. Fatigue isn’t helped by much of anything except a nap, and even then, when your sleep apparatus is the thing that is broken, a nap only goes so far. It is a brief break from the total and never-ending awareness of how tired you are, which is nice, but what a nap does for me, I have found, is it does refresh my mind, though never my body.
I remember when Joni Erikson (Tada) had her diving accident. I remember her testimony all through the years. And yesterday I somehow landed on one of her videos on YouTube, her testimony of how God has continued to weed out sin and pride and a complaining spirit from her heart and life.
I thought about what it might feel like, for her, to travel to speaking engagements and get up on platforms helpless in her wheelchair, even to position her hands in such a way that they won’t spasm. I can’t imagine being sweet under those circumstances. She describes the periods when she prayed with such faith, to be healed and restored, and God said no. She admits that there came a time when she said “if I cant walk, if I can’t be whole, if I can’t even feed myself, then please, God, just let me die”. And she would lie in her bed and refuse to let her sister or the many friends and family members who were willing to assist her, get her out of bed. She wanted the curtains closed, and to be left alone.
I have a different challenge than any of the ones of those people above, (the real, and the fictional depictions of real conditions), and I know that what I deal with is not “as bad” not as devastating as those other things.
Yet I do feel a sense of having been “benched” from my own life. Whatever that might have been like “otherwise”. Knowing that time is short on this Earth, (no matter how you look at it, but especially in this present age when we really do see signs that Christ could return very soon), rather than this lighting some kind of a fire under me about living life to the fullest while I can, not even that is powerful enough to overcome the constant fatigue. And yet I feel such a sense of failure at times. The inevitability of it all just gloms together, and like Peter, whom Jesus warned would deny Him three times before the rooster crowed twice, even knowing what Jesus said, Peter still did it. I relate to Peter. Peter who enthusiastically stepped out of the boat, took a few steps and realized his human limitations and immediately began to sink. What a sense of utter failure Peter felt after the third denial and the sound of the rooster. He cried bitterly. The inevitability of our insufficiency is the point, though, isn’t it? How good are our intentions, and yet how totally incapable we are of prevailing over the flesh. (Until that day when He shall transform us and deliver us from these bodies of flesh!)
I sometimes feel if I read one more article about ISIS militants slaughtering Christians, or the butchers of Planned Parenthood “harvesting” the organs of living newborn babies, I will lose my mind. Again. By the way, if it’s not a baby or a person then what “parenthood” is it they are “planning?”
When I had the going-away party for Ben about this time last year, one of my friends whose known me only since I’ve been unwell, commented that “I could tell you were feeling good that day, you were just glowing”. There were people present who did know me when I was well, and with them knowing the real me, it was a lot easier to recall it myself. Just an aside, here, but if you know someone who suffers from well, anything debilitating, and they have a good day, it is kind of cruel for you to point out how massive a contrast their good day is to their normal state. Because we already know, believe me.
What she witnessed that day was a tiny little glimpse of the real me, as I once was 24/7.
You think I don’t miss that?
It only took weeks of planning ahead, a very early start to the decorating and food preparation the day of, and a long nap obtained only by taking a dose of the (highly controlled) medicine that lets me sleep at night, taken in the early afternoon, which made it all possible. Forget the exhaustion I would feel the next few days. It is worth it, and I knew the price going in.
I really am not interested in singing the blues. “Nobody knows the trouble I seen”. I just really abhor feeling like a life drop-out.
And that’s how being around busy people makes me feel. It’s how my doctor made me feel. It’s nearly six weeks later and that remark still stings me. (See the first page under Morning Glory Memoirs).
I started asking myself yesterday if maybe I have fallen back into some depression. I certainly dealt with that for many years. Is it that I have not really accepted the limitations God has allowed me to have. Or is it that I am settling for less than I could have. If Joni Erikson had not come to really accept her quadriplegia, she would not be the in-demand speaker she is. I can’t even imagine being able to deal with the constant focus on my disability if I were in her shoes.
I would resent God asking me to talk about it. And that would be wrong of me. But I’m just being honest and real here.
Although I have been obedient to discuss things with people that were personally painful for me many times in my life, when God has led me to, and seen Him turn that into encouragement, I never relish it. I guess the challenges of others are unimaginable for us by virtue of the fact they are not the challenges God assigned to us. Maybe that’s how it is meant to be. God giving us what we need to handle that which He has asked us to bear, and all.
I find that while people are sympathetic enough about a visible and obvious disability, they are not so understanding with the invisible ones. Maybe if I were to have a conversation with Joni Erikson Tada, she would tell me she would rather her own challenges than mine. I know the inverse is true for me.
The thing is, I always had this inner desire to be that person that was going to live life to the fullest, to always just be upbeat and not let stuff get me down. I already had an innate appreciation for things in life that it seems many people tend to overlook. I didn’t know there would or could come a day when maintaining that outlook and attitude could become real hard, honest-to-goodness work!!!
I remember a girl named Jeannie Thompson. Thompson is my maiden name, but she is no relation. She was a resident in the nursing home near where I lived growing up (and still do), where I volunteered as a Candy Striper at fourteen, and later did a clinical rotation during nursing school, and still later, returned as an employee on the Nursing staff for a brief stint. Jeannie was always smiling. She was the youngest person in the nursing home, I want to say probably in her twenties when I first met her. I don’t know how long she has been there. I imagine all of her adult life, and maybe as far back as her teens. And every time I encountered her again, she remembered me, and I certainly remembered her, and she was still pleasant and happy.
I can’t imagine being that sweet in disposition in those circumstances.
I wonder if being semi-capable of some things some of the time, is in some ways a bigger challenge than knowing certain things are gone forever. I have always pushed myself and challenged myself. I used to be a distance “jogger” (I don’t call it running because I was never fast lol). I pushed through soul-sickness in my early twenties (these statements will make more sense if you have read my blogged autobiography “Purple Morning Glories and Gold Ladybugs”) through the psychological torment of my late twenties, and the fatigue and other issues I have dealt with ever since. I pushed to keep going. I pushed to accomplish finishing my degree, and to continue accomplishing little things here and there, and I gave my kids my “all” during the mommy-hood years. The transition from “Mommy” to “Mom” wasn’t easy. There is an art to pulling back enough to make room for them to take their first steps to adulthood and independence, and then there is the wrenching farewell to that whole precious, singularly exquisite period of ones life, and the delicate re-attachment in more of an adult-to adult oriented relationship.
Despite my desire to live life to the fullest, here I sit. I feel I do way more sitting than I would like and definitely more than I had anticipate for this age. I have always found meaning and fulfillment in giving. something. of myself.
Now I find I not only have nothing to give, but have developed a reflexive protectiveness and desire to hoard anything I might have rattling around inside me that is left. Maybe because if there is some vein or pocket left in me of something worthy of giving to others, I haven’t discovered it yet though I keep hoping. But if I do find it, I’m not sure I will or can be as generous with it as I typically have been. Virtually any interaction with others seems a threat to my energy reserves. I probably have dispensed out of it indiscriminately in times past. I know I have. Not saying it is ever a bad thing to give of oneself, except in cases which amount to casting pearls before swine. Lessons learned!
I read a medical abstract that established the existing differentiation between the excessive daytime sleepiness of Narcolepsy patients, versus fatigue. It was found that there indeed is a difference! All narcolepsy sufferers deal with excessive sleepiness, but only roughly 62% of those with Narcolepsy report fatigue being a life-disrupting issue, and that although stimulants help with excessive sleepiness, they don’t help the fatigue, and yet the fatigued patients take them more. (A sign of our desperation, I assure you!).
We determined the prevalence of severe fatigue in a group of narcolepsy patients and its relation with excessive daytime sleepiness, psychological distress, functional impairment and quality of life. Severe fatigue was associated with a significantly increased functional impairment, increased depressive symptoms and a lowered general quality of life. In conclusion, a majority of patients with narcolepsy suffer from severe fatigue, which can be distinguished from daytime sleepiness, and results in severe functional impairment.
BINGO! Thank you European Sleep Research Society! I could kiss you right square on the mouth, just for saying that out loud for the whole world to hear!!!!
Writing about it is something I can do. I can’t go back, can’t lay a better foundation that might somehow have mitigated against an autoimmune glitch. How do I strengthen that which remains, and redeem the time now? That is the thing I am ruminating on presently. All I really have to share is who I am. I do that by writing, and also in my painting and jewelry-making. I guess that is why I have never been able to bring myself to sell stuff that I create. I don’t have my nursing career anymore. I’m not much of a cheerful conversationalist. I definitely can’t zip around in perpetual motion like the busy do-ers that encompass me on every side. But stillness has its virtues, too. I have had people, when they do come in and sit down in my home for a visit, comment “your home is very peaceful and inviting”. It’s not the décor, nor the ambiance. I can tell you that. I think it is probably the absence of commotion that they are enjoying, though they don’t realize it.
We have this nifty mechanism God built into us that relies on adrenaline to help us keep going for a while even after we have burned through our normal energy sources and stores. Some people use it to single handedly lift a two ton truck off their loved one after an accident, but I used mine to keep meeting the demands of raising my little chuckleheads. Either way it was a super-human effort and that was not the intended capacity for which God created it, but I sure am thankful He allowed me to make it through those years and do the job.
I thank Him too, that there “remaineth yet a rest for the people of God”. (Hebrews 4:9).
A statement made by a preacher recently (in some video I watched online) said “we can only minister to others in our lives out of the overflow”. Huh! No wonder, I thought. Not that I am not seeking the Lord in the Word and prayer as a matter of habit. But we had been going to a church for a while that depleted more than it exhorted and frustrated more than it facilitated function of the body as a whole. And other things in life, like my fatigue, my husband’s cancer, life in general, that try to suck out all your joy and vitality.
I don’t know. Sometimes I think God doesn’t fill our cup because we don’t stay there in front of Him refusing to budge until He does so. That’s sort of what I’m up to more than anything right at this juncture.
Next Entry: Being Me, Thinking My Thoughts