WARNING: Rant ahead!
The accusations of sexual abuse and misconduct rife in our politics today has brought many women to a place of courage that they have been searching for most of their lives. Announcing to the world that you are a victim of sexual abuse is not an easy or pleasant thing to undertake, even if that abuse happened 20, 30, 40 years ago. Such abuse never, ever leaves you. It scars you and feeds into who you become, how you interact with the world for the rest of your life.
People ask questions like: "Why didn't you report it at the time?" and "Why did it take so long for you to come forward with your accusations?" The simple answer is: "Take a look in the mirror and tell me how you feel about me making these accusations today." Their answer will be suspicion and disregard for anything the woman has to say. *She* becomes the target of investigation. *She* becomes the slut who drank at a party and was asking to be raped. *Her* life is torn open and flayed on the floor of public opinion while he gets the "boys will be boys" treatment. *This* is why women don't come forward.
After a sexual attack -- be it rape or attempted rape -- the only thing a woman wants is to forget, to erase the feel of the man touching her, to gloss over what happened to the point of even suppressing the memory. The last thing most victims want is to recount what happened to the police (who are usually male) or go to the ER for treatment where they'll be dehumanized further by being exposed to an exam and possibly a rape kit. Reporting a rape is the last thing a victim wants.
So, when something occurs later in her life that brings that event back vividly, it is *normal* to want to speak up. Perspective grants clarity and desperation can grant courage to face that attacker, to bring the event into the light so that someone with that kind of temperament doesn't end up in a place of power or influence. Say, like the US Supreme Court. Clarence Thomas has been sitting on the Court for 26 years as of 2018. Anita Hill stepped forward to tell the nomination board that Thomas sexually assaulted her and she was turned into a raving harpy by the men hearing her testimony. Had she been making her accusations today, I don't think the public would doubt her at all.
Since so many women have come forward in recent years (whether the subject is Bill Cosby or Donald Trump), I think the sheer number of victims coming forward is its own proof that there is a "boys club" attitude in this country that insists "boys will be boys" and "girls need to shut up and do what they were put on this earth to do".
There are supposed Christian leaders spewing this attitude, that boys are just young and full of hormones and if a girls doesn't want to be attacked she should stay home with her knees glued together and not venture out in the world where men deserve to be men. Apparently that includes rape as a "normal" thing. There are no repercussions for "boys" (I'm not sure a 17 year-old is still a boy) who perpetrate these crimes, no consequences. And that teaches them that it's okay. That behavior, having been given the stamp of approval by a bunch of old men, then becomes normalized and these males who attack women when they're young end up having no respect for women when they grow older.
Dozens and dozens of women I know have spoken up on Facebook and Twitter. They've said #MeToo. They've said #EnoughIsEnough. Why are they speaking up now? Because they're not alone anymore. We all know women who've been assaulted. If this was anything but a crime against women, the entire world would have put a stop to it by now. But because it *is* a crime against women, it doesn't seem to matter.
I have experienced this myself. I have personally seen how a male's needs/wants superseded my own only on the basis of gender. *He* was more important than me, a mere girl/woman. But it always rubbed me the wrong way. I knew, even when I was a naive and innocent child, that it was wrong that I was bullied and abused and disregarded. It didn't seem to matter much that I was terminally shy because I had learned not to trust men. I wasn't as important as the male involved. His needs, desires, wants absolutely came before mine.
That shyness turned into major trust issues with men, issues I have to this day and I'm 59 years old. I still haven't spoken to anyone about what happened to me when I was young. I probably never will. And so I seem odd, a bit antisocial and weird to others. They can't understand why I don't have a life mate, why I live alone and always have since I was 19. *This* is why. I have no trust of men in general and for very, very few in specific. To an extent, I'm afraid of men -- not physically as much as emotionally. My mind pulls up all those ridiculous lessons I learned as a child: I'm a female so I don't matter.
Monday, September 24, 2018
Tuesday, July 31, 2018
But When You Get There...
When I was in my 20s, I had two cervical spine surgeries. When I was in my 40s, I had a third (see other blog posts). At the time those first two surgeries happened, I was told that I'd have problems when I got older; possibly arthritis, muscle issues, nerve damage issues, etc. When I was in my 20s, that seemed so very far off that it had no meaning whatsoever.
But, now that I've reached that point -- that "when you're older" point -- everything seems to be falling in on my head at the same time. Physically speaking. Which, of course, has more mental and emotional consequences than my younger self ever could have imagined.
I also have Rheumatoid Arthritis. There are complications with treating that because of my other physical issues. RA has intensified all those "when you're older" issues. It's somewhat like adding water and glue to newspaper; you get something that's kinda mushy that doesn't have a clear form on its own. If that makes sense. In other words, it's confusing and extremely complicated to manage all these different physical problems.
I have handfuls of doctors. My friend, Taerie, says I have a "pit crew"! I do. I have so many different doctors that it's like wrangling cats some days.
So, life is filled with doctor appointments and tests and therapy and treatments and just trying to take care of myself while trying to live as "normal" a life as I can. And it's bloody hard. Every day is hard. Even on "good" days it's hard. It's demoralizing and dispiriting and aggravating and depressing and frustrating. To put it mildly.
I'm a strong person. I think I would have been no matter what came my way in life, but what actually did come my way made it imperative that I be strong or die, and I mean that literally. That I'm strong now often makes feeling weak, feeling needy or small or young or lost or in pain seem like something I can't feel, that I shouldn't feel. Because I'm "strong". I understand that the strongest thing you can do is admit when you're weak. I understand that. But doing that is another matter.
Today, I feel weak. I feel needy and small and young and lost. It's been a long day. It's been a day of decisions and acting on those decisions. It's been about entering a new phase in taking care of my teeth. I'll be starting Invisaline within the next month or so to try to save my 3 front upper teeth that have slowly been moving apart and loosening over the past few years. They wiggle ever so slightly -- which is wonderful when I have them cleaned. If I don't do something now, I will definitely lose those teeth. Then I'd have to look into implants and I may not have enough bone there for implants. Not to mention implants cost a fortune -- Invisaline cost their own fortune. So, I made that decision, which wasn't easy. This will most probably increase my pain to new levels which, you know, JOY. Not. And the orthodontist and my pain doctor agree that it will likely take me longer than the projected 18 months to go through the entire treatment; I may have to take more time with each stage than a "normal" person might. Again, I am so full of joy. Not.
While this may not seem like a huge step, for me it's a very, very large step. It's opening myself to more unpleasant physical and emotional stress; it's opening myself to more pain. I live at about a 7-out-of-10 pain level. This potentially can kick that number up significantly. I've been hesitant and anxious about this and am not less anxious than I was before I chose to do this. It may all turn out to be no big deal -- let us hope. But, on the other hand...
My patience is gone today. I'm aggravated by everything. I've chosen to shut myself up in my lovely air conditioned bungalow, ignore the phone, leave the TV off and just read. I can't really take any extra pain meds because it's already 6:00 pm and I have an early morning tomorrow (I'm usually hung over the morning after taking pain meds this late) for physical therapy and an ultrasound of my abdomen because my liver enzymes are high and we can't figure out why. No, I do not drink. At all. It's likely a side effect of one of my many, many medications.
So, this post is mainly for me to bitch and moan. Thanks anyone who read this in full.
But, now that I've reached that point -- that "when you're older" point -- everything seems to be falling in on my head at the same time. Physically speaking. Which, of course, has more mental and emotional consequences than my younger self ever could have imagined.
I also have Rheumatoid Arthritis. There are complications with treating that because of my other physical issues. RA has intensified all those "when you're older" issues. It's somewhat like adding water and glue to newspaper; you get something that's kinda mushy that doesn't have a clear form on its own. If that makes sense. In other words, it's confusing and extremely complicated to manage all these different physical problems.
I have handfuls of doctors. My friend, Taerie, says I have a "pit crew"! I do. I have so many different doctors that it's like wrangling cats some days.
So, life is filled with doctor appointments and tests and therapy and treatments and just trying to take care of myself while trying to live as "normal" a life as I can. And it's bloody hard. Every day is hard. Even on "good" days it's hard. It's demoralizing and dispiriting and aggravating and depressing and frustrating. To put it mildly.
I'm a strong person. I think I would have been no matter what came my way in life, but what actually did come my way made it imperative that I be strong or die, and I mean that literally. That I'm strong now often makes feeling weak, feeling needy or small or young or lost or in pain seem like something I can't feel, that I shouldn't feel. Because I'm "strong". I understand that the strongest thing you can do is admit when you're weak. I understand that. But doing that is another matter.
Today, I feel weak. I feel needy and small and young and lost. It's been a long day. It's been a day of decisions and acting on those decisions. It's been about entering a new phase in taking care of my teeth. I'll be starting Invisaline within the next month or so to try to save my 3 front upper teeth that have slowly been moving apart and loosening over the past few years. They wiggle ever so slightly -- which is wonderful when I have them cleaned. If I don't do something now, I will definitely lose those teeth. Then I'd have to look into implants and I may not have enough bone there for implants. Not to mention implants cost a fortune -- Invisaline cost their own fortune. So, I made that decision, which wasn't easy. This will most probably increase my pain to new levels which, you know, JOY. Not. And the orthodontist and my pain doctor agree that it will likely take me longer than the projected 18 months to go through the entire treatment; I may have to take more time with each stage than a "normal" person might. Again, I am so full of joy. Not.
While this may not seem like a huge step, for me it's a very, very large step. It's opening myself to more unpleasant physical and emotional stress; it's opening myself to more pain. I live at about a 7-out-of-10 pain level. This potentially can kick that number up significantly. I've been hesitant and anxious about this and am not less anxious than I was before I chose to do this. It may all turn out to be no big deal -- let us hope. But, on the other hand...
My patience is gone today. I'm aggravated by everything. I've chosen to shut myself up in my lovely air conditioned bungalow, ignore the phone, leave the TV off and just read. I can't really take any extra pain meds because it's already 6:00 pm and I have an early morning tomorrow (I'm usually hung over the morning after taking pain meds this late) for physical therapy and an ultrasound of my abdomen because my liver enzymes are high and we can't figure out why. No, I do not drink. At all. It's likely a side effect of one of my many, many medications.
So, this post is mainly for me to bitch and moan. Thanks anyone who read this in full.
Thursday, February 16, 2017
Miracles Actually Do Happen
I am not a believer in miracles, religious or otherwise. I don't believe that a higher power is paying particular attention to my life. I think we each have the responsibility to live a good, honest, kind, thoughtful life and, if we mange to do that, then we're following the design of life, however it first came into being.
Anyone reading this likely knows the history of my neck injury; I've blogged about it here. It has now been 12 years since my 3rd cervical spine surgery, 43 years since the initial injury. Neither figure is a number I ever expected to live to see. I was bluntly told over the years, especially at the beginning, that I wouldn't survive more than a handful of years, that even surgery was not going to solve the ultimate problem, that I'd require even more surgeries.
Last year I was turned away by 3 neurosurgeons who would not tell me why I was being turned away. So I went back to the doctor I'd followed from USC to Cedars-Sinai to Glendale Presbyterian to private practice in Pasadena. He finally told me that surgery was far to dangerous now and that my neck was fairly stable. He told me to come back in 6 months.
That 6 months ended yesterday.
I had a new MRI to take with me yesterday. As I sat waiting, though not very long, I couldn't help but see the words in the MRI report (yes, I understand MRI reports after all this time!) that cited a "severe stenosis at C-6/T-1". That was the only place that the word "severe" appeared in the entire report. So it was on my mind. Also, I have a bit of a... hump, I guess, at the base of my skull and it has become larger and much more a source of discomfort. So, such was my worrying since I'd read the report on Monday.
When the doctor came into the room yesterday, he sat down opposite me and said that my MRI actually shows an improvement. It shows no progress of the mess that is my C-spine. None. I have never, ever had a doctor look at a new test result and tell me nothing has progressed. What he said made no sense to either of us. We sort of just stared at each other for a moment, then he smiled and told me that when he saw my name on his patient list, a familiar sense of dread overtook him. I am his "nightmare patient", that's how awful my neck is.
I asked him about that word "severe" in the MRI report and he told me he's not concerned about that. It will cause numbness in my right little finger (too late, it's already done that!) but is no concern at the moment. The hump on the top of my T/C spine is my neck deforming but it's not any worry as far as paralysis is concerned.
He got up and left the room to look at the MRI again because I asked if he was sure he was looking at the correct film. He laughed and said there was no mistake; this was my MRI.
Then he said the word that no one, anywhere, ever has said to me about anything. He looked at me and, with joyful shock, told me it was a miracle. He was serious.
I'm not sure how to express exactly what this means. I have been concerned about become paralyzed most of my life. I don't go round with a cloud over my head labeled "paralysis" but it's very much at the front of my brain. For 43 years. Last year, my doctor told me, he was sure that I'd call him for a surgical referral (he no longer does complex surgeries, damnit) and that he'd never see me again. Which explains his reaction when he saw my name on his patient list for yesterday; he was sure he'd be walking into a disaster.
Instead, this... miracle happened. Then he said more words I'd never, ever heard before: "Come see me in a year with another MRI from the same place." ''Come see me in a year." I've always gone in for progress checks every 4-6 months. But he released me for an entire year. THAT'S how well I'm doing... which was an impossible circumstance according to all my history with my neck, according to every doctor I've seen for my injury (and there have been a lot of them). I've been turned away by doctors because the situation is simply too complicated and dangerous for them to even consider treating me.
The conclusion yesterday was that I should keep doing whatever I'm doing because it's working miracles.
I can only credit my water therapy/exercise that I do 2-3 times a week for about 1 1/2 hours (though I've been out of the pool for 2 months because I had the Plague!). I'm eating better, too. And my attitude has improved markedly in the past 5 years. I honestly think that a huge part of the improvement is positive thoughts, positive actions, positive emotional work (which I'm doing and it's really, really hard...), positive living.
Even though 2016 seemed to be nothing but stress and loss, I've somehow gone from a somewhat isolated, withdrawn person to someone who is no longer afraid of life and what it might have planned for my future. I try to take every morning I can get out of bed and stand up as a good day; anything else that happens can't negate that fact.
So... yeah. As I made the 2 1/2 hour drive home (as opposed to the 1 hour it took to get to Pasadena -- 46 miles) I kept laughing. Then I'd cry. Then I'd laugh and cry. I'm sure I was an odd sight to anyone looking. The first thing I wanted to do when I got home was call my dad. My health has been as difficult on my parents as it has been on me. I can't even imagine what they've gone through because of my accident. My mom was always overly cautious about me but had a very "get it done, get it over with, move on" attitude. Dad I think has felt my struggles more personally; it's been hell for him to see me go through my very rocky journey. Usually, I ask him to go to the neurosurgeon with me but I didn't yesterday. So it was natural to want to talk to him first.
But he wasn't home, so my sister got the good news first. Then a friend who'd been on the phone with me the previous night talking me off the ledge that was that word "severe" in my MRI report. Then, finally, I told Dad. His reaction was utter lack of even understanding what I was telling him. I had to repeat myself. Then he kept asking "really?", "are you kidding?", "I can't believe this", etc. We were both incredulous but there's a sense of freedom and utter joy about this... and hearing those same emotions in Dad's voice made the day complete.
Now, as I go about my new job (I am now a production assistant at Fullscreen Studios -- I data process at home!) and prepare for my old job (another data-processing job 1 day a week), I feel strong and light, calm and utterly agitated. It's going to take some time to really understand that something this good, this positive has happened to a life that has been followed around by a very big sword on a very thin string.
The doctor warned me that I'm very precarious, that everything is a constant tightrope of "have I gone too far" and "have I gone far enough". The pain control and body work is on me; this is my responsibility, not something anyone can do for me... or ever could. So, even though there's a time bomb still in my neck, the clock has frozen for now and, at least for a while, I feel like I can do anything.
Anyone reading this likely knows the history of my neck injury; I've blogged about it here. It has now been 12 years since my 3rd cervical spine surgery, 43 years since the initial injury. Neither figure is a number I ever expected to live to see. I was bluntly told over the years, especially at the beginning, that I wouldn't survive more than a handful of years, that even surgery was not going to solve the ultimate problem, that I'd require even more surgeries.
Last year I was turned away by 3 neurosurgeons who would not tell me why I was being turned away. So I went back to the doctor I'd followed from USC to Cedars-Sinai to Glendale Presbyterian to private practice in Pasadena. He finally told me that surgery was far to dangerous now and that my neck was fairly stable. He told me to come back in 6 months.
That 6 months ended yesterday.
I had a new MRI to take with me yesterday. As I sat waiting, though not very long, I couldn't help but see the words in the MRI report (yes, I understand MRI reports after all this time!) that cited a "severe stenosis at C-6/T-1". That was the only place that the word "severe" appeared in the entire report. So it was on my mind. Also, I have a bit of a... hump, I guess, at the base of my skull and it has become larger and much more a source of discomfort. So, such was my worrying since I'd read the report on Monday.
When the doctor came into the room yesterday, he sat down opposite me and said that my MRI actually shows an improvement. It shows no progress of the mess that is my C-spine. None. I have never, ever had a doctor look at a new test result and tell me nothing has progressed. What he said made no sense to either of us. We sort of just stared at each other for a moment, then he smiled and told me that when he saw my name on his patient list, a familiar sense of dread overtook him. I am his "nightmare patient", that's how awful my neck is.
I asked him about that word "severe" in the MRI report and he told me he's not concerned about that. It will cause numbness in my right little finger (too late, it's already done that!) but is no concern at the moment. The hump on the top of my T/C spine is my neck deforming but it's not any worry as far as paralysis is concerned.
He got up and left the room to look at the MRI again because I asked if he was sure he was looking at the correct film. He laughed and said there was no mistake; this was my MRI.
Then he said the word that no one, anywhere, ever has said to me about anything. He looked at me and, with joyful shock, told me it was a miracle. He was serious.
I'm not sure how to express exactly what this means. I have been concerned about become paralyzed most of my life. I don't go round with a cloud over my head labeled "paralysis" but it's very much at the front of my brain. For 43 years. Last year, my doctor told me, he was sure that I'd call him for a surgical referral (he no longer does complex surgeries, damnit) and that he'd never see me again. Which explains his reaction when he saw my name on his patient list for yesterday; he was sure he'd be walking into a disaster.
Instead, this... miracle happened. Then he said more words I'd never, ever heard before: "Come see me in a year with another MRI from the same place." ''Come see me in a year." I've always gone in for progress checks every 4-6 months. But he released me for an entire year. THAT'S how well I'm doing... which was an impossible circumstance according to all my history with my neck, according to every doctor I've seen for my injury (and there have been a lot of them). I've been turned away by doctors because the situation is simply too complicated and dangerous for them to even consider treating me.
The conclusion yesterday was that I should keep doing whatever I'm doing because it's working miracles.
I can only credit my water therapy/exercise that I do 2-3 times a week for about 1 1/2 hours (though I've been out of the pool for 2 months because I had the Plague!). I'm eating better, too. And my attitude has improved markedly in the past 5 years. I honestly think that a huge part of the improvement is positive thoughts, positive actions, positive emotional work (which I'm doing and it's really, really hard...), positive living.
Even though 2016 seemed to be nothing but stress and loss, I've somehow gone from a somewhat isolated, withdrawn person to someone who is no longer afraid of life and what it might have planned for my future. I try to take every morning I can get out of bed and stand up as a good day; anything else that happens can't negate that fact.
So... yeah. As I made the 2 1/2 hour drive home (as opposed to the 1 hour it took to get to Pasadena -- 46 miles) I kept laughing. Then I'd cry. Then I'd laugh and cry. I'm sure I was an odd sight to anyone looking. The first thing I wanted to do when I got home was call my dad. My health has been as difficult on my parents as it has been on me. I can't even imagine what they've gone through because of my accident. My mom was always overly cautious about me but had a very "get it done, get it over with, move on" attitude. Dad I think has felt my struggles more personally; it's been hell for him to see me go through my very rocky journey. Usually, I ask him to go to the neurosurgeon with me but I didn't yesterday. So it was natural to want to talk to him first.
But he wasn't home, so my sister got the good news first. Then a friend who'd been on the phone with me the previous night talking me off the ledge that was that word "severe" in my MRI report. Then, finally, I told Dad. His reaction was utter lack of even understanding what I was telling him. I had to repeat myself. Then he kept asking "really?", "are you kidding?", "I can't believe this", etc. We were both incredulous but there's a sense of freedom and utter joy about this... and hearing those same emotions in Dad's voice made the day complete.
Now, as I go about my new job (I am now a production assistant at Fullscreen Studios -- I data process at home!) and prepare for my old job (another data-processing job 1 day a week), I feel strong and light, calm and utterly agitated. It's going to take some time to really understand that something this good, this positive has happened to a life that has been followed around by a very big sword on a very thin string.
The doctor warned me that I'm very precarious, that everything is a constant tightrope of "have I gone too far" and "have I gone far enough". The pain control and body work is on me; this is my responsibility, not something anyone can do for me... or ever could. So, even though there's a time bomb still in my neck, the clock has frozen for now and, at least for a while, I feel like I can do anything.
Saturday, May 28, 2016
The Girl In The Pool
As part of my pain fighting routine, I swim 3 times a week at the Physical Therapy facility I was treated at recently. I now have a gym membership which allows me access to all the equipment they have, including their lovely, warm pool. I have been doing this for about 2 years.
A few months ago, I noticed someone new in the pool. I'd see her once in a while and my only -- admittedly short-sighted and somewhat prejudiced -- thought was that she was obviously an athlete because she was in excellent shape, the kind of shape anyone would be envious of but those of us who've spent our lives as non-athletes can really envy.
Most people in the pool stay to themselves unless in a class or you've simply seen each other far too often not to say hello. By nature, I tend to stay to myself and go about my routine, which takes about 1 1/2 hours. It seemed to me that this girl -- who is probably in her early 30s but that's young to me -- was of a similar mind: keep to yourself, do your thing and leave.
Last week, I arrived just as the arthritis class of about 4 women were leaving. This girl was also in the pool but was in the jets at one end which usually signals the end of your workout. So I expected her to leave soon and to turn off the jets. But she stayed. I started, as I do every workout, by walking up and down the pool -- forwards then backwards 30 times. After about my 5th lap, I glanced up to find this girl half kneeling on the seat by the jets nearly in tears. I couldn't remain silent.
I said, "I can feel the waves of pain coming off you. You're having a bad day, right?"
And she started to cry. Just tears coming down her obviously agonized face.
I added, "I honestly do know how you're feeling."
And she started to tell me her story.
Nothing I had assumed was true. Her body's excellent condition is genetics; she hasn't worked out since 2000 because of a back injury which lead to neck problems which lead to low back problems and on and on and on... with no real relief. She wears a pain patch (I don't know what kind of medicine it is) that she rolled her eyes at and said how much it didn't help. She talked about her doctor and the rest of her pain team, all of whom she likes except the pain doctor himself (on a team with a neurosurgeon, pain psychologist and others). She said he was an ass and didn't hear anything she was saying and she was beyond frustrated.
Sounded like deja vu and I told her some of my own story. We talked as I continued my routine and she lingered in the pool, doing more stretches and floating, as we all do when we're done working out. She told me she's not a talker or a cryer but she'd reached her saturation point that day. As we were alone in the pool for about an hour, we talked and compared notes and commiserated. It is rare that you, as a pain patient, have this kind of opportunity to actually talk to another pain patient. Unless you're in a support group -- and so many of us aren't joiners by nature and our pain makes us even less likely to join -- there is no give and take between people going through the exact same thing, dealing with chronic pain, as we are.
She left the pool before me but I followed a few minutes later. When I got to the locker room, she was showering and I could hear her efforts to just move in the shower. By the time I was dressed, she was drying off and nearly in tears again.
I said, "It hurt to even get dressed, I know."
That's when she turned to me and said, "Thank you for talking to me. I'm usually not a talker but you really helped me today."
I got a little choked up, I admit, because helping people going through the same horror I've been going through for 40 years feels good. I actually find something -- finally -- good in what I've experienced with pain. If I can give one person a little understanding, then that helps me in return, to feel I'm accomplishing something for someone else. It's a great feeling.
I told her, she was welcome and to just remember there really are people out here to understand.
She told me her schedule and I told her mine. I wasn't able to get back to the pool this past week but I'll be there this coming week. If I run into her again, great. If not, I know I gave her a moment of understanding and, sometimes, that's all it takes to lift our burden, at least for a few moments.
The girl in the pool said I helped her but she helped me just as much. I got a kick in the ass for making assumptions about other people but I also got validation in return for my empathy and that is as a better pain pill than most.
A few months ago, I noticed someone new in the pool. I'd see her once in a while and my only -- admittedly short-sighted and somewhat prejudiced -- thought was that she was obviously an athlete because she was in excellent shape, the kind of shape anyone would be envious of but those of us who've spent our lives as non-athletes can really envy.
Most people in the pool stay to themselves unless in a class or you've simply seen each other far too often not to say hello. By nature, I tend to stay to myself and go about my routine, which takes about 1 1/2 hours. It seemed to me that this girl -- who is probably in her early 30s but that's young to me -- was of a similar mind: keep to yourself, do your thing and leave.
Last week, I arrived just as the arthritis class of about 4 women were leaving. This girl was also in the pool but was in the jets at one end which usually signals the end of your workout. So I expected her to leave soon and to turn off the jets. But she stayed. I started, as I do every workout, by walking up and down the pool -- forwards then backwards 30 times. After about my 5th lap, I glanced up to find this girl half kneeling on the seat by the jets nearly in tears. I couldn't remain silent.
I said, "I can feel the waves of pain coming off you. You're having a bad day, right?"
And she started to cry. Just tears coming down her obviously agonized face.
I added, "I honestly do know how you're feeling."
And she started to tell me her story.
Nothing I had assumed was true. Her body's excellent condition is genetics; she hasn't worked out since 2000 because of a back injury which lead to neck problems which lead to low back problems and on and on and on... with no real relief. She wears a pain patch (I don't know what kind of medicine it is) that she rolled her eyes at and said how much it didn't help. She talked about her doctor and the rest of her pain team, all of whom she likes except the pain doctor himself (on a team with a neurosurgeon, pain psychologist and others). She said he was an ass and didn't hear anything she was saying and she was beyond frustrated.
Sounded like deja vu and I told her some of my own story. We talked as I continued my routine and she lingered in the pool, doing more stretches and floating, as we all do when we're done working out. She told me she's not a talker or a cryer but she'd reached her saturation point that day. As we were alone in the pool for about an hour, we talked and compared notes and commiserated. It is rare that you, as a pain patient, have this kind of opportunity to actually talk to another pain patient. Unless you're in a support group -- and so many of us aren't joiners by nature and our pain makes us even less likely to join -- there is no give and take between people going through the exact same thing, dealing with chronic pain, as we are.
She left the pool before me but I followed a few minutes later. When I got to the locker room, she was showering and I could hear her efforts to just move in the shower. By the time I was dressed, she was drying off and nearly in tears again.
I said, "It hurt to even get dressed, I know."
That's when she turned to me and said, "Thank you for talking to me. I'm usually not a talker but you really helped me today."
I got a little choked up, I admit, because helping people going through the same horror I've been going through for 40 years feels good. I actually find something -- finally -- good in what I've experienced with pain. If I can give one person a little understanding, then that helps me in return, to feel I'm accomplishing something for someone else. It's a great feeling.
I told her, she was welcome and to just remember there really are people out here to understand.
She told me her schedule and I told her mine. I wasn't able to get back to the pool this past week but I'll be there this coming week. If I run into her again, great. If not, I know I gave her a moment of understanding and, sometimes, that's all it takes to lift our burden, at least for a few moments.
The girl in the pool said I helped her but she helped me just as much. I got a kick in the ass for making assumptions about other people but I also got validation in return for my empathy and that is as a better pain pill than most.
Friday, May 27, 2016
DNA Pain Study
I am a patient at the USC Pain Management Clinic (Los Angeles, CA), have been for approximately 30 years. About three months ago, I became part of a DNA study about how the body of a chronic pain patient processes pain medication. It involved a DNA swab of the inside of each cheek and filling out some rather long, in depth questions about different aspect of my pain, of my daily ability to maintain my health, myself and my life. I got the results this past Monday.
The outcome told me that I am NOT susceptible to opioids . I already knew that from my lengthy dance with pain meds; trying this, trying that, etc etc etc. But having it written in medical-study ink gave some power to me as a patient. This study indicated strongly that I can be given opioids with no risk of physical addiction.
This is a new study and I don't know if it's taking place anywhere other that USC. But it seems to me that this is a HUGE step forward in pain treatment. If doctors can run a DNA test to see which medications a patient is and isn't reacting well to or has the potential to react poorly to a drug or family of drugs, addiction from doctor prescribed opioids would drop significantly. Which would mean more effective treatment of acute and chronic pain, especially chronic pain. People who can chemically process opioids would be able to rely on them without doctors and hospitals and family and friends and the public thinking them drug addicts.
This is just a first step. But it's an excellent step. One I will continuing taking part in. My recent visit to my pain doctor also included filling out questions again. They are lengthy and address different aspects of chronic pain and how it effects your life but that's a good thing. Details given by patients along with the DNA information is how treatment of pain is going to grow past the sense that you're a criminal if you ask for pain medication, even with good cause.
I have been fortunate to be treated at USC Pain Management Clinic by Dr. Linda Rever for 30 years. She knows me. She knows my reactions to different treatments; we've tried everything there is to try over time. And we might go on trying new things to see if my treatment can be taken in a different direction for better pain relief.
The study also showed my body's reaction to the other medications I'm on; a cocktail of multiple pain blockers. It showed I have a tendency toward toxicity with two of the medications in that cocktail so now the doctor knows to track those two drugs more carefully, to test for side effects. This is also information for *me* to use. I now know what to watch for in myself and to track what is and isn't normal reactions to the medications I take each day.
This is a powerful step forward in the shadow of the CDC's recommendations about opioid prescription, it's advice to try everything BUT opioids before prescribing them. Which sounds fine unless you're the person in pain right now. Not in a week, not in three months, NOW. Trying hypnosis and meditation and using psychological tools to overcome pain sounds great. But from someone who is often stricken with pain so bad that I am immobile, the only thing that will allow me to live to the next day when I am stricken with this level of pain is serious pain medication.
Not to knock these other treatments. I've been meditating regularly for about 30 years. Every night and, if it's a bad day, more often. I regularly see a psychologist who helps me deal with living every day with chronic pain. I've tried hypnosis and acupuncture and acupressure and things that seem like Voo Doo. I'm not telling anyone not to try alternative methods of pain relief. But access to opioid medication is necessary. Until something else comes along to indicate more precisely how each person should be treated -- possibly a DNA study of chronic pain -- they are the best option we have.
The outcome told me that I am NOT susceptible to opioids . I already knew that from my lengthy dance with pain meds; trying this, trying that, etc etc etc. But having it written in medical-study ink gave some power to me as a patient. This study indicated strongly that I can be given opioids with no risk of physical addiction.
This is a new study and I don't know if it's taking place anywhere other that USC. But it seems to me that this is a HUGE step forward in pain treatment. If doctors can run a DNA test to see which medications a patient is and isn't reacting well to or has the potential to react poorly to a drug or family of drugs, addiction from doctor prescribed opioids would drop significantly. Which would mean more effective treatment of acute and chronic pain, especially chronic pain. People who can chemically process opioids would be able to rely on them without doctors and hospitals and family and friends and the public thinking them drug addicts.
This is just a first step. But it's an excellent step. One I will continuing taking part in. My recent visit to my pain doctor also included filling out questions again. They are lengthy and address different aspects of chronic pain and how it effects your life but that's a good thing. Details given by patients along with the DNA information is how treatment of pain is going to grow past the sense that you're a criminal if you ask for pain medication, even with good cause.
I have been fortunate to be treated at USC Pain Management Clinic by Dr. Linda Rever for 30 years. She knows me. She knows my reactions to different treatments; we've tried everything there is to try over time. And we might go on trying new things to see if my treatment can be taken in a different direction for better pain relief.
The study also showed my body's reaction to the other medications I'm on; a cocktail of multiple pain blockers. It showed I have a tendency toward toxicity with two of the medications in that cocktail so now the doctor knows to track those two drugs more carefully, to test for side effects. This is also information for *me* to use. I now know what to watch for in myself and to track what is and isn't normal reactions to the medications I take each day.
This is a powerful step forward in the shadow of the CDC's recommendations about opioid prescription, it's advice to try everything BUT opioids before prescribing them. Which sounds fine unless you're the person in pain right now. Not in a week, not in three months, NOW. Trying hypnosis and meditation and using psychological tools to overcome pain sounds great. But from someone who is often stricken with pain so bad that I am immobile, the only thing that will allow me to live to the next day when I am stricken with this level of pain is serious pain medication.
Not to knock these other treatments. I've been meditating regularly for about 30 years. Every night and, if it's a bad day, more often. I regularly see a psychologist who helps me deal with living every day with chronic pain. I've tried hypnosis and acupuncture and acupressure and things that seem like Voo Doo. I'm not telling anyone not to try alternative methods of pain relief. But access to opioid medication is necessary. Until something else comes along to indicate more precisely how each person should be treated -- possibly a DNA study of chronic pain -- they are the best option we have.
Monday, April 18, 2016
Some Sad Words
I am stunned and in shock and don't know what to say yet. But this is my Facebook post from this morning. For now, it will have to suffice.
My sweet friend, Tyr Jósue Rousseau passed from liver failure last night. He was 36. I met him as a teenager and over the years grew to love and appreciate the beautiful human being he was. Loving and generous and just so, so kind. He became my confidant and companion in silliness. He was a delight. His demons were strong but he fought as hard as he could. His body failed him but his spirit was so strong. Love and deepest sympathy to his husband, Finor André Rousseau and his sister, Margarita Valencia. Love you both so much. Tyr will always be in my heart.
Now, a week later on April 23, I'm not quite in so much shock, although this past week has seemed like a very horrible dream. I thought I'd just write and see what happens.
I met Tyr, as I said, when he was about 18 years old. He and his friends (George and Scorpion) would hang out behind the booth my business partners and I had at the Palm Springs Street Fair every Thursday night. The boys caught my eye because they were Goths but also because they were sweet when they bought incense from us. As time passed, I got to talking with them, especially Tyr, and he eventually joined me in the booth to help sell intense on Thursday nights. Between customers, we'd talk about anything and everything and came to know each other pretty well.
He and I started meeting up for lunch and/or a movie or just to browse Borders in Palm Desert. I was invited to his house and he pet/house sat for me in Yucca Valley when I had 7 cats. After the first time, he swore he'd never sleep in my house alone again; it spooked him. He also saved me from several computer tantrums, always patient with my low-tech knowledge.
Then came my obsession with the TV show, The Sentinel, and in particular with one of the stars, Garett Maggart. Tyr joined me for a charity event in Big Bear, California at the Moonridge Zoo (an animal refuge for injured wild animals that cannot survive in the wild and which has a different name now that they're moving to a new site: Big Bear Alpine Zoo). The zoo is Garett's chosen charity and every year fans of The Sentinel would get together for an online auction to raise money for the zoo. There was also an on site auction the day of the event. We raised well over $10,000.00 each year.
The first time Tyr and I went, in 2002, we had a great time looking at the animals and talking with fellow fans and just hanging out at a really cool place. The zoo was on a hillside with dirt and gravel terrain which could be a bit slippery. Without any fuss, Tyr would offer me his arm, worried that I might place a step wrong. He was like that, gave what was needed without any attention being paid to what he was doing or why he was doing it. He gave me dignity when I might have felt uncomfortable asking for help.
We waited in line for Garett's autograph and, as we drew closer to the front of the line, Garett had already mentioned the presence of another "dude" (the people who attended the even were mostly women) but when he finally saw Tyr clearly, the first thing he did was stand up and say, "Ozzy fucking Osborn!" See the picture below for clarification.
I love this boy, this gentle man he grew into in front of my eyes. He was a website designer and did my website for me in exchange for tattoos (when I was a tattoo artist). I always enjoyed tattooing him because he complained the whole time but never wanted to rest when I offered. While tattooing winged lips on his thigh right above his knee, I heard some of the most creative cursing I've ever encountered. He called me names, laughing and crying and just generally trying to get through it any way he could. But he came back for more so it couldn't have been too horrible an experience! Such a good guy. So caring and generous and fun to be around.
I will always love him. Though he was 20 years younger than me, there was rarely an age issue. Once in a while he wouldn't get a reference I made -- and I often was clueless about things in his life, which he then taught me about -- but, other than that, we were equals. He went to a few plays with me. He came to my parents' house in Huntington Beach to help with computer problems. He called a few days after I had my 3rd neck surgery and was healing at Mom and Dad's. I was so out of it on pain meds that I didn't remember talking to him but I apparently talked to him for quite a while. *That* was something he always liked to bring up to tease me about.
Tyr meant the world to me. When he met Finor, I saw how happy he was. I saw how important this new man was to his life. And I kinda fell in love with Fin a bit, too, because he made my friend so happy. I attended their formal wedding at their house in Palm Desert. It was such a beautiful day. The yard was gorgeous, as were the grooms. I cried a bit, I'll admit. Fin came to be my friend, too.
When they moved to Portland, Oregon, our lives separated, as lives will when distance becomes involved. But I talked to Tyr on the phone and we e-mailed a lot. I saw him and Finor only a few months after I moved to Corona. They came to my house and we had a good time before they had to leave to drive home to Portland.
That was the last time I saw Tyr and I didn't talk to him much after that, either. Do I wish I'd been more insistent on communication? A little. But Tyr's life had gone in a direction I couldn't be part of and so did my life, veering off from his. I thought of him often, though, and continued to consider him a dear friend. I always will.
His passing has been extremely difficult to deal with and I don't know what will become of Finor. I worry about him now. I know Tyr would want him to be cared for and I will always care for Finl. He knows I'm here for him forever and always.
I will miss my sweet friend. I will always have regrets that he didn't get to experience more of life. But Tyr was someone who grabbed life and strangled every bit out of it he could. His life was as large as he was.
I've run out of words. I love you Tyr. RIP.
My sweet friend, Tyr Jósue Rousseau passed from liver failure last night. He was 36. I met him as a teenager and over the years grew to love and appreciate the beautiful human being he was. Loving and generous and just so, so kind. He became my confidant and companion in silliness. He was a delight. His demons were strong but he fought as hard as he could. His body failed him but his spirit was so strong. Love and deepest sympathy to his husband, Finor André Rousseau and his sister, Margarita Valencia. Love you both so much. Tyr will always be in my heart.
Now, a week later on April 23, I'm not quite in so much shock, although this past week has seemed like a very horrible dream. I thought I'd just write and see what happens.
I met Tyr, as I said, when he was about 18 years old. He and his friends (George and Scorpion) would hang out behind the booth my business partners and I had at the Palm Springs Street Fair every Thursday night. The boys caught my eye because they were Goths but also because they were sweet when they bought incense from us. As time passed, I got to talking with them, especially Tyr, and he eventually joined me in the booth to help sell intense on Thursday nights. Between customers, we'd talk about anything and everything and came to know each other pretty well.
He and I started meeting up for lunch and/or a movie or just to browse Borders in Palm Desert. I was invited to his house and he pet/house sat for me in Yucca Valley when I had 7 cats. After the first time, he swore he'd never sleep in my house alone again; it spooked him. He also saved me from several computer tantrums, always patient with my low-tech knowledge.
Then came my obsession with the TV show, The Sentinel, and in particular with one of the stars, Garett Maggart. Tyr joined me for a charity event in Big Bear, California at the Moonridge Zoo (an animal refuge for injured wild animals that cannot survive in the wild and which has a different name now that they're moving to a new site: Big Bear Alpine Zoo). The zoo is Garett's chosen charity and every year fans of The Sentinel would get together for an online auction to raise money for the zoo. There was also an on site auction the day of the event. We raised well over $10,000.00 each year.
The first time Tyr and I went, in 2002, we had a great time looking at the animals and talking with fellow fans and just hanging out at a really cool place. The zoo was on a hillside with dirt and gravel terrain which could be a bit slippery. Without any fuss, Tyr would offer me his arm, worried that I might place a step wrong. He was like that, gave what was needed without any attention being paid to what he was doing or why he was doing it. He gave me dignity when I might have felt uncomfortable asking for help.
We waited in line for Garett's autograph and, as we drew closer to the front of the line, Garett had already mentioned the presence of another "dude" (the people who attended the even were mostly women) but when he finally saw Tyr clearly, the first thing he did was stand up and say, "Ozzy fucking Osborn!" See the picture below for clarification.
At the time, Tyr carried this lunchbox with him everywhere. He was seriously Goth. His hair was down to his waist but it was pulled back in this picture. Garett was fascinated with him and, ever after, I always teased Tyr that Garett liked him better, which never failed to make Tyr laugh. Even when I went to events alone, Garett would ask after Tyr. He made an impression everywhere he went.
By the following year, the Goth look had mostly faded away, leaving this beautiful face and knowing eyes revealed. This is a picture of Garett, Tyr and myself in 2003 at the Moonridge Zoo charity event. Garett insisted on all three of us being in the picture and was making jokes and all three of us were laughing so hard that this is the only picture of many that really came out clear, when one of us wasn't moving due to laughter. I think this was my favorite year in Big Bear.
As you can see in the picture above, Garett's about my height, which is far short of how tall Tyr was. So, in 2005, I guess he thought they had to be the same height. This is Tyr trying to be short and Garett trying to be tall. Tyr had cut all that beautiful hair off, too, and started wearing glasses. I took him to get his hair cut off and I think I cried the whole time; he just laughed, mostly at me.
And, finally, in 2006, the picture that embodies Tyr to a "T". He didn't want me to take his picture and actually refused to have a picture taken with Garett that year. He was feeling unattractive and had been depressed. It took some convincing to even get him to go with me that year. So, while he was sitting on a bench at the zoo, I just pulled out my camera and waited him out. He eventually looked at me and ducked away so I didn't get a picture of him at first. Then I got this one... with editorial comment.
I love this boy, this gentle man he grew into in front of my eyes. He was a website designer and did my website for me in exchange for tattoos (when I was a tattoo artist). I always enjoyed tattooing him because he complained the whole time but never wanted to rest when I offered. While tattooing winged lips on his thigh right above his knee, I heard some of the most creative cursing I've ever encountered. He called me names, laughing and crying and just generally trying to get through it any way he could. But he came back for more so it couldn't have been too horrible an experience! Such a good guy. So caring and generous and fun to be around.
I will always love him. Though he was 20 years younger than me, there was rarely an age issue. Once in a while he wouldn't get a reference I made -- and I often was clueless about things in his life, which he then taught me about -- but, other than that, we were equals. He went to a few plays with me. He came to my parents' house in Huntington Beach to help with computer problems. He called a few days after I had my 3rd neck surgery and was healing at Mom and Dad's. I was so out of it on pain meds that I didn't remember talking to him but I apparently talked to him for quite a while. *That* was something he always liked to bring up to tease me about.
Tyr meant the world to me. When he met Finor, I saw how happy he was. I saw how important this new man was to his life. And I kinda fell in love with Fin a bit, too, because he made my friend so happy. I attended their formal wedding at their house in Palm Desert. It was such a beautiful day. The yard was gorgeous, as were the grooms. I cried a bit, I'll admit. Fin came to be my friend, too.
When they moved to Portland, Oregon, our lives separated, as lives will when distance becomes involved. But I talked to Tyr on the phone and we e-mailed a lot. I saw him and Finor only a few months after I moved to Corona. They came to my house and we had a good time before they had to leave to drive home to Portland.
That was the last time I saw Tyr and I didn't talk to him much after that, either. Do I wish I'd been more insistent on communication? A little. But Tyr's life had gone in a direction I couldn't be part of and so did my life, veering off from his. I thought of him often, though, and continued to consider him a dear friend. I always will.
His passing has been extremely difficult to deal with and I don't know what will become of Finor. I worry about him now. I know Tyr would want him to be cared for and I will always care for Finl. He knows I'm here for him forever and always.
I will miss my sweet friend. I will always have regrets that he didn't get to experience more of life. But Tyr was someone who grabbed life and strangled every bit out of it he could. His life was as large as he was.
I've run out of words. I love you Tyr. RIP.
Thursday, November 19, 2015
Really just a new poem. I've been in Oregon since November 12 and will be here until November 22. I'm here hunting for a place to live as living in Southern California is an impossibility for me now; far too expensive. I'm not sure this is where I'll be going. I'm sort of on a fact-finding mission. But, on the drive up here, especially through central California's farmlands, the breadth of the drought the state is suffering was palpable. And disheartening. This is the poem that is the result of driving north on I-5.
Driving North
on I-5
(Oregon)
A
modern dustbowl –
signs
asking:
“Does
growing food mean
wasting
water?”
as
we fly past a
cutoff
for Yosemite;
grapevines
going rusty
in
the autumn sun as
we
pass Dos Amigos View Point.
The
land is bone-dry,
dry
as papyrus,
brittle
as a forgotten soul.
By
the time we pass
Crow's
Landing
the
sun is setting,
glancing
off the paper-thin
limbs
of desiccated trees.
As
we miss our last chance
to
turn toward Yosemite,
even
I begin to flake
into
peeled-back bark;
behind
us,
all
we see is dust.
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