I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: lunadatura on April 30, 2010, 02:24:39 PM
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There is another thread on here somewhere about what we are all learning about ourselves as a result of the suffering we are contending with.
I stumbled into a book WHEN YOU ARE FALLING, DIVE by Mark Matousek - that speaks directly to this topic - i this IHDers might want to read it - on line book club anyone?? - here is an excerpt from his website about the book. I lived with a diagnosis of HIV for 12 years but never actually got full blown HIV.
2. You say in the introduction to your book that survivors are our greatest teachers. How do you think that life-threatening or catastrophic illnesses and experiences actually help us?
It’s simple: they remind us that we’re not immortal. This is the greatest gift we can be given in our lifetime, though it may not be easy to receive: the wakeup call that shakes you out of your everyday trance and forces you to pay attention. Remember that scene in “Moonstruck” when Cher slaps Nicholas Cage and screams, “Snap out of it!” Provided it doesn’t paralyze us, that’s what crisis can do in a life, whether it’s illness, loss, emotional trauma. The fear becomes fuel for change – the loss becomes grist for self-realization. If you’re only going to be here for a few more years, say, how do you want to spend that time? One woman says in my book that in deep grief, there’s no room for anything but the truth. This is the paradox of so-called misfortune: it can bump up our quality of our life. We’re no longer willing to waste so much time. We focus on the things that provide inspiration and joy. We separate the wheat from the chaff (including relationships that aren’t healthy or helpful), drop mediocre old habits. Our time on earth becomes more precious to us. The reminder that we’re not immortal becomes an enormous blessing. Some people learn this from mid-life crisis. For me, it was HIV – but the wakeup call can come from anywhere. The irony is that I never got sick, so I’ve been able to apply the principles I learned on the gang plank to life as a healthy person. Anyone can do this, get off their own “bed of woes” and use life’s fragility to their advantage.
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The irony is that I never got sick, so I’ve been able to apply the principles I learned on the gang plank to life as a healthy person.
Oh yes...how ironic. Just think of how much more the author could have learned if he had ever been sick. I'm sure he would have relished the opportunity to savour life's great gifts as his bp tanked and his legs cramped because some bored tech took off too much fluid. I personally don't need ESRD to teach me to smell the flowers; I'd prefer better health so that I could plant more of them.
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Lunadatura, You wrote some powerful words. It took me awhile, but I have learned to not let the disease control my life--even if it may be shortened. I won't let it take precious time when I could be enjoying every single moment. I have days that aren't too much fun, but it isn't like it was when I was first diagnosed. Today, my granddaughter and I sat in a swing and watched a Mama bird feeding her babies. Would I have stopped and taken the time before or would I have been to busy? My house needs cleaning, laundry needs done. I don't care anymore. It gets done when it gets done. I have made my world smaller and unfortunately, dropped some friends along the way. Getting toxic people out of your life helps so much! Tomorrow our family will spend the day at our Aids Walk and Ride (my daughter is the director of developement for the Aids Alliance) and then Sunday we have a team for the Kidney Walk. They will all be riding bikes and walking. I will take my comfy chair and watch the festivities. And I will have a wonderful time. Next week, I will probably collapse, but I do when I can and stop when I have to. With the two communities we are involved with, we see how fragile life is. One day my name will be on the roll call, but not today. Not
tomorrow. Thanks for sharing. I will look for the book.
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The problem with looking on your illlness as an opportunity to do all the things you ever wanted to do before you die, is that we may still not have that opportunity.
We may be too sick to do those things.
We may be disabled, now that the illness has ravaged our bodies.
Or we may be too tethered to a dialysis machine or to a hospital, waiting for the kidney transplant call, to go traveling.
And we may not have the financial resources anyway. Many folks were barely scraping by financially even before illness struck. Then once illness strikes, they may be in an even deeper financial hole.
Sure, I would love to have a lovely home and travel all around the world and do all kinds of stuff. But I couldn't afford to do it before and I still can't afford to do it now.
For many of us, we'll have to be content with the simple pleasures of life: A walk on the beach or a walk in the park or something of that nature.
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One woman says in my book that in deep grief, there’s no room for anything but the truth.
Okay, I have done my best to enjoy what quality of life I could while on D. But I guess I don't remember having any great slap-in-the-face moments of how wonderful the little things in life are because of it. A childhood that began scraping the poverty line (before my parents' business became a success when I was a pre-teen) had already made that a habit. Mostly, getting slowly sicker was simply a constant struggle with lowering my personal expectations to a point where I could stay sane when considering what I was now capable of, when compared to what I used to do. Heck, I just got some of the same lessons everyone gets as they get older, just a bit sooner than most.
But the idea that grief makes us face the truth just doesn't ring true for me at all. How many people do you know who are mourning some idealized version of a lost loved one? I could name quite a few just among immediate friends and family. And it's not always a prettied-up version of the truth, either. One of my dear friends died last year at 29 from intestinal cancer. His mother, unable to deal with it, has openly and loudly blamed his wife for causing his death. The mom's theory is that his wife didn't make him quit smoking when he was diagnosed (at stage 4, which is the pretty much the end of the road, anyhow,) so his wife must be to blame for the cancer. One of his docs estimated that the cancer, given how wide-spread it was in him when they diagnosed it, had been growing since he was 15 or 16. That's 10 years before he even began dating his wife. His mom lost her daughter several years ago to suicide, and her husband to a heart condition just months after her son passed away, so she has plenty to grieve about - but she has little truth to keep her company.
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We all of us employ coping mechanisms that help us survive ESRD. For some, the idea that there is some great cosmic lesson to be learned from suffering IS the coping mechanism that works for them. Me, I find it to be some tarted up version of psychobabble. There is no great truth that comes with renal failure in my world, but if you can learn to appreciate life just that much more as you take those 25 pills each day, more power to you.
I don't think I'm stupid, and I don't think I'm insensitive or unappreciative to the point of needing an incurable disease to put me on some path to self-discovery. I've lived with myself for over 50 years, and I don't need dead kidneys to teach me anything I don't already know. That's not to say that I know everything, but it IS to say that I am happy to be open-minded without the added benefit of ESRD.
It really gets up my nose when people attempt to ascribe some sort of nobility to chronic illness and suffering. This notion that those of us with incurable maladies are also blessed with grace and strenth and bravery and other mythic qualities is dismissive and just plain wrong. It is a challenge each day to reclaim my life from ESRD, a challenge I most heartily do not welcome.
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This is a great topic! I have been on dialysis for just over 3 years. I sometimes feel like oh poor me/us. Then I see people with other even worse illnesses out there enjoying and living their life to the fullest, and I start feeling selfish and guilty for feeling down when they seem to be able to just live life. I am going to take starting school on Monday as an opportunity to start over, and really try and focus on the positives in my life, because we never know when it will be over! :flower;
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I think you should take the author's advice. I've been thinking about dying for almost 25 years now! In 1987 my kidney's failed. I've been running from that dark cloud ever since. If I had known then that 25 years later I'd still be running I would have not wasted so much time planning my funeral and who gets what. I've out lived 3 dogs whom I spend time and hours worrying who would take care of them when I was gone! Unfortunately, now I feel that I MUST not have much more time, so I continue to think and plan. What a waste of my time. It did make me step up my career and get rid of a bad husband. That helped things.
My advice is don't worry or more of a reality..... plan your funeral and leave it. Don't change songs and places!
:flower;
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This is a great topic! I have been on dialysis for just over 3 years. I sometimes feel like oh poor me/us. Then I see people with other even worse illnesses out there enjoying and living their life to the fullest, and I start feeling selfish and guilty for feeling down when they seem to be able to just live life. I am going to take starting school on Monday as an opportunity to start over, and really try and focus on the positives in my life, because we never know when it will be over! :flower;
Two things...One..don't burden yourself with feeling guilty or selfish about feeling sad. Your feelings are normal and you are entitled to them. You don't need the extra burden of guilt. Sometimes you just have to accept the negative feelings and vow that tomorrow will be better. Two...don't assume that other people with even worse illnesses have never felt sad just like you. You don't know how frightened they might be at 3AM when they can't sleep.
Good for you for taking control and starting school. That's a positive thing!
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don't assume that other people with even worse illnesses have never felt sad just like you. You don't know how frightened they might be at 3AM when they can't sleep.
Agreed! Never envy other folks' emotional state till you know all the facts.
I remember I was once flying on business, and the plane got caught in nasty thunderstorms. I never enjoyed flying, and this time I was starting to get rather nervous as the plane kept being knocked around sharply.
A gentleman and his wife were sitting next to me, and they didn't seem nervous at all. In fact, they seemed relaxed, joking, laughing. He saw how nervous I looked, and he kept trying to reassure me.
I said to him, "I really appreciate your trying to trying to reassure me. But I'm surprised that you and your wife can stay so calm through all this. Are you a pilot yourself?"
He replied, "Oh, no. I've had three bourbons, and my wife's on Valium."
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My husband always refers to my "suffering" and I get soooo mad! :Kit n Stik; I tell him I don't have time for suffering or for being sick!! I'm living - I've got far too much to do to worry about my dialysis! :boxing;