On July 17th Rich was admitted to the hospital from ER. Today, September 17th Rich was admitted to the hospital for what was not resolved from the previous admission.
What a struggle to get him to his 11:45 appointment with Dr McGee today. The original plan was to get the chest x-ray and blood work first because what little energy Rich has peaks in the morning. Every half hour hour I tried to wake him, he begged for more sleep like to break my heart. So finally I get a bit of breakfast and his new anti-biotics down him and urge and cajole and prepare and warm his rice pillow in the micro-wave, make sure I have his urinal, his puke bag and a bottle of water in my bag; his cane, an extra jacket and a blanket in the car. For some reason I cannot explain I was fully graveled up by the time I pulled out of the drive and started out. I tried desperately to talk myself out of it, but some car pulled out in front of me not a ¼ mile up the road (and there was NO ONE behind me), at about the same time Rich turned on the heat, and I realize I have to stop for gas AGAIN, and I must reconcile myself to driving a sauna to yet another doctor's appointment with a man who may or may not be able to negotiate the journey, who's only words to me in days have been those of needs or complaints.
I am so tired. I am tired of fighting, begging, pleading and kissing ass. I'm driving like I'm on auto pilot. I'm trying with all my might not to surrender to the flaming desire to pull over, step out of the van and just walk away. (Like Forrest Gump when he just started running because Jenny had left him.) Instantly followed by the mental flagellation of what an awful person I am for wanting to escape because the man I adore has left me and a stranger inhabits him with the faintest scent of familiar.
I want to shake him, shake him, shake him back to me. Is this what “shaken baby syndrome “ is? The last ditch effort to … ?
Our ETA is seven minutes. I feel my anxiety rising. I hear words coming out of my mouth.... “Richard...you have to have the chest x-ray and blood work the doctors ordered, so if you're not able to do that after this doctor's visit, I'm taking you to the ER. That's it. It has to be done.” And Rich agreed and told me he felt good. I love it when a man lies to me.... it makes me feel like a woman.
We finally make it to the waiting room, and Rich is sitting like a whipped pup. I know it's because I was rough on him—not just in words, but in the energy he feels pouring from me. I feel so totally crappy that I have to be rough on him to be heard, and then I have to feel guilty for how it makes him feel. I feel a brief surge of anger with that thought. I swallow it down and feel the love wash in. I lay down my knitting and take his hand. I tell him I love him, no matter what. He says he's sorry. His name is called and we continue the gauntlet.
Rich sits on the exam table in four layers of clothing clutching his blue plastic puke bag, shaking so hard we can hear the exam table rattle. Dr McGee asks how he feels and nods like he already knows, and says all the right things in all the right ways so that we are shortly waiting for transportation to take us to admitting. (Many blessings on Dr McGee!!)
We check in with admission and then sit in the hospital lobby for an hour and a half waiting for a bed to become available. Rich is now exhausted beyond all reckoning. This is a man who is so patient that he makes me look like a screaming banshee. He sits in his wheelchair looking about to pass out from sheer misery, but every now and then looking around like he's ready to rip flesh with his bare teeth. While we wait I get a voice message on my cell phone. It's the NEW Infectious Disease doctor. He's letting me know that the culture from Rich's drain is spilling all kinds of bacteria not sensitive to vancomycin. I tell him we're waiting for a bed. Everyone's on board. I'm trying to believe.
Finally frickin' Floyd, they come and tell us the bed is ready. For hours I've been begging this man to hold on for the comfort of lying down, and now we're finally on our way. So the slow elevator is tolerable, and the maneuvering and pausing through hallways of gurney and wheelchair traffic is still blessed movement forward. FINALLY we reach his room and... there is no bed. I swear to God, I can't make this shit up. There is NO bed. I feared he would pass out. I couldn't look at him. I stood in the center of the bedless room and turned slowly like a special effect in a movie, trying to comprehend, wondering if I had found the key to my parallel universe. Shortly the nurses create a bed and comfort and understand and help us through these final steps towards relief and rest.
I leave way too soon. As soon as he's laying in his freshly made bed, and I've confirmed all I know with his nurses, and he's nearly passed out with exhaustion I slither away. From his room to my van is a long labyrinth that I maneuver with experience. I want to cry but I can't. The shame of guilt and relief is clogging my tear ducts. I never should have allowed the idiots to drive the bus this far. Now I'm just relieved that the inevitable won't drag us into the same ER that asked me to sign the papers to let him go.
I want Rich back. I want the laughing, joking, ebullient man that taught me how to be better than I was before I met him. I want Rich, not the stranger that's taken his place. I want him back so hard and so deep that when I creep into the bedroom to confirm the rise and fall of his breathing I become paralyzed with the confusion of holding on to what is now, what was, what could be....
Tonight I'm working towards laying it down and taking a break from a long haul. I know he's in excellent hands. I'm trying not to think about the fact that I should not have allowed things to come to this....I'm trying to believe that tomorrow will be better. That somewhere inside the shell of the man still exists the spirit of the man. I'm trying to believe he will come back to me. I'm trying to remember that what I want or need is only a whisper on his path. Still...Come back to me.
Friday, September 17, 2010
Thursday, September 16, 2010
Another One Bites the Dust
I fired another doctor today. Dismissed might be a better word since I fired him in the same manner he has dealt with me—mostly silence and a general lack of interest. I have no delusions that this will even be a blip on his radar screen, and that suits me fine. I'm sure he, and the family doctor I recently fired, are both wonderful men and fine doctors. But, they have both made it crystal clear that they are not engaged in, let alone committed to our current struggle. No hard feelings, but if you're not going to be a team player, I need you to get off the field. I need a team that the man Rich who has cancer, rather than the cancer, infection and fevers as separate, unrelated events. Every day since his discharge from the hospital August 11, he has become weaker, sicker, and more despondent while the Infectious Disease doctor continues with a blasé wait-and-see approach. It's no longer acceptable.
What hit us both this morning is that we cannot go on like this. Rich stated it clearly before we left the house while struggling with his hacking cough. He can't sleep, he can't eat, he drenches the bed with sweat then he shivers under a mound of covers. He has 2 seconds warning for a pee and 3 seconds for a BM, and his cane is not motorized. For the first time in his life he's experiencing migraines every other day, and now diagnosed as a diabetic. He can't talk without a debilitating cough, and he can't walk ten steps without becoming winded. Left alone he would attempt to sleep non-stop and take nothing more than sips of water. He can't take a bath or shower so personal hygiene is adequate but certainly not enjoyable. He is constantly exhausted with aching joints. This has been going on for two months and the end is not in sight. He said very quietly, “This is NO quality of life, and I'm not going on like this.”
Great. Now I'll be struggling with tears the rest of the day while trying to deal with medical people.
Today we saw a new Inf.Dis. Doctor. Considering his schedule I was shocked he was able to fit us in at all, not to mention so quickly. He seemed thorough. When he was done taking the history he said he was told we were there for a second opinion. “No,” I smiled. “This was an interview. You're hired.” I considered feeling a bit guilty for bush-whacking him like that, then just as quickly dismissed it. I'm no longer sorry for anything I have to do. Especially since I got what I wanted—the good doctor is actually addressing the situation. He asked when the drainage was last tested. To my knowledge, not since the drain was placed, and not for my lack of requesting the lab work and offering the specimen. So he actually took a specimen to see if there's something new growing since a petrie dish would not be a better environment than Rich's liver. He double checked recent blood tests and wrote scripts for cipro and flagyl. And we'll see him back in the office in a week if Rich isn't in the hospital before that.
As for me, I'm just tired, mostly of watching Rich suffer, of torturing him with the energy it requires to get cleaned up in a sink, get dressed, ride forty minutes, pray for space near the door, or a handy wheelchair, maneuvering the halls, chairs, exam table when he's desperate to just lie down. I'm also very tired of dealing with people along this journey. At this point in my blog career, I'm thinking it's obvious to one and all that I am NOT a People Person. I liken my condition to being high functioning learning disabled. I can compensate. I do fairly well one-on-one where I can either discover that I'm in the presence of a kindred spirit, OR I am not outnumbered by stupidity. I also do well in large gatherings where I can easily make myself invisible to others yet continue to observe them. That's just good, clean fun. In my current situation I'm not able to use either of those coping mechanisms, so not a day goes by that the needle on my BullShit Meter doesn't redline.
Our appointment today was with a doctor two doors down from the endocrinologist—they share the same receptionist. But yes, I had to provide Rich's insurance cards and driver's license to be photocopied by the same receptionist that copied the same paperwork last week. Then she gives us a piece of paper which needs Rich's name, address, DOB—all the things on his driver's license (a copy of which is attached; and the policy numbers of the insurance cards also photocopied on the attached sheet. Why have computers? Why.
I come home and deal with the mail.
There is a large envelope (postage of $2.77) Inside the package is a list of the contents—A “Diabetes Dictionary”, three 8-1/2 x 11” full color brochures, with inserts; shopping list of additional materials along with their prices and how to order. All fitting into an oddly folded full color card board sleeve. It came to us courtesy of the US Department of Health and Human Services. From Bethesda, MD. I'm guessing it was initiated by some rule that doctors have to notify the government of all newly diagnosed diabetes. I really don't care how or why I got this package. Once my needle is in the red zone, “how” and “why” are sitting three Stop signs back.
First of all, the expense—printing and processing each package, ON A GOVERNMENT CONTRACT?!?!? When very decent clinic and doctor's office is full of info on all of the top ten diseased, not to mention the ads in magazines for corresponding drugs. If I had the time, I'd try to find out the price per piece. That money would have been better spent on research, OR funding prosecution of Insurance companies and mail away pharmacies for practicing medicine without a license.
Second—anyone with the ability and desire to research their newly diagnosed disease would most likely have already Googled, Yahood, or visited their local library. Anyone not willing or able to seek and consume the information is going to ask their doctor, nurse or cousin who has a friend with diabetes. They are not going to read these 8th grade level brochures. I know this for a fact because I often pick up brochures in the waiting room that were discarded on chairs, dropped on floors. They for damn sure aren't going to waste time on the nutrition pamphlet because they are not going to give up their yummy foods when a pill or shot will “fix it”. And everything in the book is about selecting and cooking healthy foods and reading labels. There are precious few healthy foods being dispensed from drive-thru windows and people aren't going to cook anything that requires more than opening a package and setting a microwave. And unless McDonalds comes up with a way to print directly on the bun, nobody's gonna be reading nutritional labels. Come on, if Wilford Brimley can't get people to get with the program, smart money says this package doesn't stand a chance. Just more to haul to the recycle center. What I could really use is a coupon towards test strips. A 14 day supply was $63.
In the same pile of mail is a form letter requesting a donation to the American Cancer Society's Research Fund. If I had a couple days I would add up all the money I have spent on cancer in the last eighteen months. Since no one seems to know what to do with Rich, I'm thinking he IS a research project. Yeah, I'm good. Besides, before I would give them a red cent I'd demand to know how many different computer software programs they use, if they can talk to each other, and how much time is spent hand writing information that has already been scanned. I need to see some level of efficiency before I volunteer funds.
A form letter from the hospital requesting Rich fill out a four page survey on the care he received during his recent hospitalization. No, really. How about I just write my blog address across the survey in big red letters.
As always the daily queries and offers from acquaintances and family. I know it is so well meant, but let's be real....even “Happy Birthday” will get on your last nerve if you have to hear it in the triple digits every week. Yet another scolding for Rich failing to return a phone call. (That one doesn't even hit my radar anymore.) Followed by a few phone calls from telemarketers trying to sell Rich life insurance and cruises. Finally, a phone call from my employer to remind me that my FMLA ran out today. I totally forgot I had given a return date that would give me five weeks from discharge to get him back to self-care. Now I have to find a doctor that will write a sufficient reason to extend my FMLA until heaven knows when because no one can decide what to do next. I go upstairs to check on Rich and find that the rain is leaking through my bedroom ceiling in three different places. Another two days of this and there will be large chunks of ceiling on the floor. Seriously. I don't want to play anymore.
Tomorrow I have to get him up and to the lab for a chest x-ray and more blood work, and then to another visit with Dr McGee. All before 11:30. Yee-hah. Looking forward to that. Think I'll take the cats along. It would probably be great fun to herd them too. Then again, they'd just be batting and clawing at the Pom-Poms I have to wave. Lest I sound bitter and bitchy, I assure you that I feel placid and resigned. I'll kick into operational mode as the tasks demand. I try to keep telling myself that things will turn any day, a decision will be made, progress will begin. Fear of disappoint is my biggest obstacle.
I think I'll break the rule and leave my cell phone on and pray it rings. My ring tone is “Close Encounters of the Third Kind.” When it rings, for a split second I'm aglow with happiness because I think maybe my ride is here.
What hit us both this morning is that we cannot go on like this. Rich stated it clearly before we left the house while struggling with his hacking cough. He can't sleep, he can't eat, he drenches the bed with sweat then he shivers under a mound of covers. He has 2 seconds warning for a pee and 3 seconds for a BM, and his cane is not motorized. For the first time in his life he's experiencing migraines every other day, and now diagnosed as a diabetic. He can't talk without a debilitating cough, and he can't walk ten steps without becoming winded. Left alone he would attempt to sleep non-stop and take nothing more than sips of water. He can't take a bath or shower so personal hygiene is adequate but certainly not enjoyable. He is constantly exhausted with aching joints. This has been going on for two months and the end is not in sight. He said very quietly, “This is NO quality of life, and I'm not going on like this.”
Great. Now I'll be struggling with tears the rest of the day while trying to deal with medical people.
Today we saw a new Inf.Dis. Doctor. Considering his schedule I was shocked he was able to fit us in at all, not to mention so quickly. He seemed thorough. When he was done taking the history he said he was told we were there for a second opinion. “No,” I smiled. “This was an interview. You're hired.” I considered feeling a bit guilty for bush-whacking him like that, then just as quickly dismissed it. I'm no longer sorry for anything I have to do. Especially since I got what I wanted—the good doctor is actually addressing the situation. He asked when the drainage was last tested. To my knowledge, not since the drain was placed, and not for my lack of requesting the lab work and offering the specimen. So he actually took a specimen to see if there's something new growing since a petrie dish would not be a better environment than Rich's liver. He double checked recent blood tests and wrote scripts for cipro and flagyl. And we'll see him back in the office in a week if Rich isn't in the hospital before that.
As for me, I'm just tired, mostly of watching Rich suffer, of torturing him with the energy it requires to get cleaned up in a sink, get dressed, ride forty minutes, pray for space near the door, or a handy wheelchair, maneuvering the halls, chairs, exam table when he's desperate to just lie down. I'm also very tired of dealing with people along this journey. At this point in my blog career, I'm thinking it's obvious to one and all that I am NOT a People Person. I liken my condition to being high functioning learning disabled. I can compensate. I do fairly well one-on-one where I can either discover that I'm in the presence of a kindred spirit, OR I am not outnumbered by stupidity. I also do well in large gatherings where I can easily make myself invisible to others yet continue to observe them. That's just good, clean fun. In my current situation I'm not able to use either of those coping mechanisms, so not a day goes by that the needle on my BullShit Meter doesn't redline.
Our appointment today was with a doctor two doors down from the endocrinologist—they share the same receptionist. But yes, I had to provide Rich's insurance cards and driver's license to be photocopied by the same receptionist that copied the same paperwork last week. Then she gives us a piece of paper which needs Rich's name, address, DOB—all the things on his driver's license (a copy of which is attached; and the policy numbers of the insurance cards also photocopied on the attached sheet. Why have computers? Why.
I come home and deal with the mail.
There is a large envelope (postage of $2.77) Inside the package is a list of the contents—A “Diabetes Dictionary”, three 8-1/2 x 11” full color brochures, with inserts; shopping list of additional materials along with their prices and how to order. All fitting into an oddly folded full color card board sleeve. It came to us courtesy of the US Department of Health and Human Services. From Bethesda, MD. I'm guessing it was initiated by some rule that doctors have to notify the government of all newly diagnosed diabetes. I really don't care how or why I got this package. Once my needle is in the red zone, “how” and “why” are sitting three Stop signs back.
First of all, the expense—printing and processing each package, ON A GOVERNMENT CONTRACT?!?!? When very decent clinic and doctor's office is full of info on all of the top ten diseased, not to mention the ads in magazines for corresponding drugs. If I had the time, I'd try to find out the price per piece. That money would have been better spent on research, OR funding prosecution of Insurance companies and mail away pharmacies for practicing medicine without a license.
Second—anyone with the ability and desire to research their newly diagnosed disease would most likely have already Googled, Yahood, or visited their local library. Anyone not willing or able to seek and consume the information is going to ask their doctor, nurse or cousin who has a friend with diabetes. They are not going to read these 8th grade level brochures. I know this for a fact because I often pick up brochures in the waiting room that were discarded on chairs, dropped on floors. They for damn sure aren't going to waste time on the nutrition pamphlet because they are not going to give up their yummy foods when a pill or shot will “fix it”. And everything in the book is about selecting and cooking healthy foods and reading labels. There are precious few healthy foods being dispensed from drive-thru windows and people aren't going to cook anything that requires more than opening a package and setting a microwave. And unless McDonalds comes up with a way to print directly on the bun, nobody's gonna be reading nutritional labels. Come on, if Wilford Brimley can't get people to get with the program, smart money says this package doesn't stand a chance. Just more to haul to the recycle center. What I could really use is a coupon towards test strips. A 14 day supply was $63.
In the same pile of mail is a form letter requesting a donation to the American Cancer Society's Research Fund. If I had a couple days I would add up all the money I have spent on cancer in the last eighteen months. Since no one seems to know what to do with Rich, I'm thinking he IS a research project. Yeah, I'm good. Besides, before I would give them a red cent I'd demand to know how many different computer software programs they use, if they can talk to each other, and how much time is spent hand writing information that has already been scanned. I need to see some level of efficiency before I volunteer funds.
A form letter from the hospital requesting Rich fill out a four page survey on the care he received during his recent hospitalization. No, really. How about I just write my blog address across the survey in big red letters.
As always the daily queries and offers from acquaintances and family. I know it is so well meant, but let's be real....even “Happy Birthday” will get on your last nerve if you have to hear it in the triple digits every week. Yet another scolding for Rich failing to return a phone call. (That one doesn't even hit my radar anymore.) Followed by a few phone calls from telemarketers trying to sell Rich life insurance and cruises. Finally, a phone call from my employer to remind me that my FMLA ran out today. I totally forgot I had given a return date that would give me five weeks from discharge to get him back to self-care. Now I have to find a doctor that will write a sufficient reason to extend my FMLA until heaven knows when because no one can decide what to do next. I go upstairs to check on Rich and find that the rain is leaking through my bedroom ceiling in three different places. Another two days of this and there will be large chunks of ceiling on the floor. Seriously. I don't want to play anymore.
Tomorrow I have to get him up and to the lab for a chest x-ray and more blood work, and then to another visit with Dr McGee. All before 11:30. Yee-hah. Looking forward to that. Think I'll take the cats along. It would probably be great fun to herd them too. Then again, they'd just be batting and clawing at the Pom-Poms I have to wave. Lest I sound bitter and bitchy, I assure you that I feel placid and resigned. I'll kick into operational mode as the tasks demand. I try to keep telling myself that things will turn any day, a decision will be made, progress will begin. Fear of disappoint is my biggest obstacle.
I think I'll break the rule and leave my cell phone on and pray it rings. My ring tone is “Close Encounters of the Third Kind.” When it rings, for a split second I'm aglow with happiness because I think maybe my ride is here.
Monday, September 13, 2010
"I Don't Know What to Say..."
I hear that a lot. Sometimes I just hear the strain and awkwardness as someone struggles to “say the right thing”. I've got some helpful hints.
What helps the most is when people treat me the same way they did before the elephant entered the room. He's the strong, silent type, but I swear to god he follows me everywhere.
First of all, you don't HAVE to say anything. Really. Experts say >80% of human communication is non-verbal, so what I read from your eyes, your facial expressions, your body language—that conveys far more to me than Hallmark precision sentiments. And let's face it. You and I both know that nothing you say is going to “make it better”. I promise you that a sincere smile with eye contact and/or a pat on the back is not only sufficient, but preferable to canned, pat phrases.
I am absolutely fine with someone simply saying that they're keeping us in their thoughts and prayers. In my world and belief system, it doesn't get any better than that.
Another thing I hear a lot: “Call if you need anything.” Okay. I don't know what that means. Here's the deal, and I mean no offense, but what I need you can't give me. I need my husband to be healed. Anything short of that I can pretty much handle on my own. And if you are close enough to me that I would be comfortable imposing upon you, I wouldn't have to tell you what I need. That fact has been proven to me time and again over the past many months. (More on this at a later date when I'm at liberty to discuss the Angels in my life.) I know that phrase “Call if you need anything” is well-meaning, but it ranks right up there with “have a nice day.” Your order or request for me to have a nice day is yet another burden that I'm not up to since odds are strong that I'm going to disappoint you.
It seems I'm not much help when it comes to What To Say. I sure can tell you what not to say, based on things that were said to me.
After a while, it becomes soul-sucking to field the repetitive question “How's Rich doing?” (Or worse “How's your hubby?” That one just annoys the living bah-geezus out of me.) It's not so much the question as the tone attached. Trust me, I can tell who is making a sincere inquiry and who is striving to be on the cutting edge of the gossip mill, or those who ask merely because they think propriety demands it. I respond accordingly. I respond respectfully to sincere inquiries. To the rest I smile sweetly and say “thanks for asking.”
Admittedly I'm not a good barometer for this. I'm a VERY private person, and yes, I get the insanity of blogging that you're a private person, but there's a huge difference between telling someone you cry and actually crying in front of them. And isn't there a big fluffy buffer of anonymity in this format? Not to mention the fact that near as I can tell there's a total of six people reading this blog. So I will proceed...
My first day back to work after the initial diagnosis, someone asked me “So are you going to turn your bedroom into a dying room?” If Steven Hawkings needs a first hand account of a black hole, he can call me. I think I mumbled something about not having thought of that and I would certainly look into it.
Just recently someone said to me....”We want to do something for you... take up a collection... So...what do you want? Cash, gift card?” SERIOUSLY?!?! Wow, who knew this experience included cash and prizes. I was devastated. I have been a member of this group for a fair amount of time. Long enough to be a party to other members' situations—deaths, surgeries, illnesses. We took up a collection, collaborated on ideas and presented a thoughtful surprise to our 'friend' without asking the recipient what they wanted. How does one respond to such an inquiry? I stated sweetly that I'm truly fine, appreciate the thought, but it's not necessary. “Okay.”
For the record, it's all I can do to remain civil when people refer to Rich in the past tense. I truly do not need anyone to tell me “what a wonderful man he WAS.” Thankfully, the bearers of those tidings were blissfully unaware of how close I came to jumping ugly all over them. Yes, I endured such comments more than once from more than one source.
I was fine the first 87 times I had to express assurances and gratitude when someone reminded me that I need to eat and rest. For the past thirteen months I've just wanted to growl, “Well thank you, Captain Obvious.” OR, “No, thanks, I'm on a hunger strike until the medical community resolves STUPID, and I find that sleep deprivation clears my head.” OR “If you want to report your sleep and diet habits to me, I'll be happy to respond in kind”.... OR....“Holy crap, Batman, if you hadn't just said that....” Are you kidding me?!?! Would it help you to know that I've gained thirty pounds since January? Twenty to thirty times up and down stairs daily is apparently not enough calorie burning exercise for a post-menopausal woman. More on this later...
There is a precise number of people who have the right and privilege to comment or inquire on how I feel, act, think, or express myself. Outside of that group, I do not need to hear how I should be feeling, what I should be thinking, or what I should be doing. On more than one occasion I have looked into the eyes of (or held the phone to my ear while) yet another expert on my life imparted their knowledge, and I fantasized about sweetly requesting them to shove 'Should' right up their ass.
On many of these occasions I have thankfully had a witness. It's always helpful to have validation of your tea with the Mad Hatter lest you begin to doubt your own sanity.
These are among my most fortifying moments. The well meaning offender wanders away, feeling all warm and fuzzy for their valuable input and my blessed witness turns to me, mouth gaping and finally manages.... “oh. my. God. How do you manage not to.....”
“Points.” I reply. “I need the points.” I am pleased and relieved to state that short of pleasantly hinting at bodily harm to a couple of doctors, I have not lost my temper, been rude, curt, or in any way less than grateful and at times obsequious with all of my encounters. I am so sweet it's no wonder Rich is now on insulin. My motivation is complex. Mostly I need the Points. Call it Zen, call it Kharma, grab any label you like. I believe in Balance. I'm seeking Points to weight my side of the scale.
In keeping with Balance, I can't afford to waste energy on anger, angst or assholes. I need to kiss as many medical asses as necessary to insure the care of and concern for my Mate. I need to keep myself insulated from any and all who do not believe in our path. I need to protect us both from any and all negative energy—including my own. And I do know that people mean well. They just don't understand and that's not their fault. From day One Rich has told me there is a reason we have been put on this path. I try to live up to that with Faith and Grace, but the bottom line is... I think I need the Points.
What helps the most is when people treat me the same way they did before the elephant entered the room. He's the strong, silent type, but I swear to god he follows me everywhere.
First of all, you don't HAVE to say anything. Really. Experts say >80% of human communication is non-verbal, so what I read from your eyes, your facial expressions, your body language—that conveys far more to me than Hallmark precision sentiments. And let's face it. You and I both know that nothing you say is going to “make it better”. I promise you that a sincere smile with eye contact and/or a pat on the back is not only sufficient, but preferable to canned, pat phrases.
I am absolutely fine with someone simply saying that they're keeping us in their thoughts and prayers. In my world and belief system, it doesn't get any better than that.
Another thing I hear a lot: “Call if you need anything.” Okay. I don't know what that means. Here's the deal, and I mean no offense, but what I need you can't give me. I need my husband to be healed. Anything short of that I can pretty much handle on my own. And if you are close enough to me that I would be comfortable imposing upon you, I wouldn't have to tell you what I need. That fact has been proven to me time and again over the past many months. (More on this at a later date when I'm at liberty to discuss the Angels in my life.) I know that phrase “Call if you need anything” is well-meaning, but it ranks right up there with “have a nice day.” Your order or request for me to have a nice day is yet another burden that I'm not up to since odds are strong that I'm going to disappoint you.
It seems I'm not much help when it comes to What To Say. I sure can tell you what not to say, based on things that were said to me.
After a while, it becomes soul-sucking to field the repetitive question “How's Rich doing?” (Or worse “How's your hubby?” That one just annoys the living bah-geezus out of me.) It's not so much the question as the tone attached. Trust me, I can tell who is making a sincere inquiry and who is striving to be on the cutting edge of the gossip mill, or those who ask merely because they think propriety demands it. I respond accordingly. I respond respectfully to sincere inquiries. To the rest I smile sweetly and say “thanks for asking.”
Admittedly I'm not a good barometer for this. I'm a VERY private person, and yes, I get the insanity of blogging that you're a private person, but there's a huge difference between telling someone you cry and actually crying in front of them. And isn't there a big fluffy buffer of anonymity in this format? Not to mention the fact that near as I can tell there's a total of six people reading this blog. So I will proceed...
My first day back to work after the initial diagnosis, someone asked me “So are you going to turn your bedroom into a dying room?” If Steven Hawkings needs a first hand account of a black hole, he can call me. I think I mumbled something about not having thought of that and I would certainly look into it.
Just recently someone said to me....”We want to do something for you... take up a collection... So...what do you want? Cash, gift card?” SERIOUSLY?!?! Wow, who knew this experience included cash and prizes. I was devastated. I have been a member of this group for a fair amount of time. Long enough to be a party to other members' situations—deaths, surgeries, illnesses. We took up a collection, collaborated on ideas and presented a thoughtful surprise to our 'friend' without asking the recipient what they wanted. How does one respond to such an inquiry? I stated sweetly that I'm truly fine, appreciate the thought, but it's not necessary. “Okay.”
For the record, it's all I can do to remain civil when people refer to Rich in the past tense. I truly do not need anyone to tell me “what a wonderful man he WAS.” Thankfully, the bearers of those tidings were blissfully unaware of how close I came to jumping ugly all over them. Yes, I endured such comments more than once from more than one source.
I was fine the first 87 times I had to express assurances and gratitude when someone reminded me that I need to eat and rest. For the past thirteen months I've just wanted to growl, “Well thank you, Captain Obvious.” OR, “No, thanks, I'm on a hunger strike until the medical community resolves STUPID, and I find that sleep deprivation clears my head.” OR “If you want to report your sleep and diet habits to me, I'll be happy to respond in kind”.... OR....“Holy crap, Batman, if you hadn't just said that....” Are you kidding me?!?! Would it help you to know that I've gained thirty pounds since January? Twenty to thirty times up and down stairs daily is apparently not enough calorie burning exercise for a post-menopausal woman. More on this later...
There is a precise number of people who have the right and privilege to comment or inquire on how I feel, act, think, or express myself. Outside of that group, I do not need to hear how I should be feeling, what I should be thinking, or what I should be doing. On more than one occasion I have looked into the eyes of (or held the phone to my ear while) yet another expert on my life imparted their knowledge, and I fantasized about sweetly requesting them to shove 'Should' right up their ass.
On many of these occasions I have thankfully had a witness. It's always helpful to have validation of your tea with the Mad Hatter lest you begin to doubt your own sanity.
These are among my most fortifying moments. The well meaning offender wanders away, feeling all warm and fuzzy for their valuable input and my blessed witness turns to me, mouth gaping and finally manages.... “oh. my. God. How do you manage not to.....”
“Points.” I reply. “I need the points.” I am pleased and relieved to state that short of pleasantly hinting at bodily harm to a couple of doctors, I have not lost my temper, been rude, curt, or in any way less than grateful and at times obsequious with all of my encounters. I am so sweet it's no wonder Rich is now on insulin. My motivation is complex. Mostly I need the Points. Call it Zen, call it Kharma, grab any label you like. I believe in Balance. I'm seeking Points to weight my side of the scale.
In keeping with Balance, I can't afford to waste energy on anger, angst or assholes. I need to kiss as many medical asses as necessary to insure the care of and concern for my Mate. I need to keep myself insulated from any and all who do not believe in our path. I need to protect us both from any and all negative energy—including my own. And I do know that people mean well. They just don't understand and that's not their fault. From day One Rich has told me there is a reason we have been put on this path. I try to live up to that with Faith and Grace, but the bottom line is... I think I need the Points.
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