Help for Healing

Bitter & Sweet, living daily with grief


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Exceptional

I’ve noticed that people fit into categories. Take waiters, for instance.

There are those who don’t do their job. They goof up your order. Your food is cold. Maybe they charge you the wrong amount.

There are those who just do their job, the minimum amount. When I go to Denny’s and ask for a cappuccino, they say, “We only have iced, no hot.” Fair enough. Hot is not on their menu.

Then there is Sharon. She is Summer’s and my favorite waitress at Denny’s. We ask to be in her section. When I ask Sharon for a cappuccino, she says,”We only have iced, but why don’t I put a cup in the microwave for you?” Now that is exceptional service. She isn’t required to go the extra mile, but she suggests it and then she does it. Summer and I always make sure we tell her how much we appreciate her. We both have lives that involve taking care of others. We love going to Denny’s for an hour and having Sharon take care of us. It means the world to us.

People are like that in general. There are those who just aren’t around when you need them. You don’t even ask because you know they aren’t going to say yes. Maybe it isn’t their “job” or maybe it is, but it doesn’t matter. They aren’t going to.

There are those who help, but only if it is convenient for them. “Sure, I can do that because I don’t have anything else going on.” Sometimes this is the hardest group of people to deal with. It’s not like they never do anything, so they can easily defend themselves. Often times, these are the people who say, “All you have to do is ask. Any time, day or night. I’m here for you.” And they believe that it’s true. Often, there is little insight into their own behavior. Self-awareness is not one of their fortes. You are grateful for what they offer, but you know there are great limitations to what they will do.

Then there are those exceptional Sharons in the world. They are the ones that actually sacrifice. Sacrifice. Give something up for someone else. I’ve come across a few exceptionals lately.

One is Dad’s urologist. I asked her for her phone number so I could reach her any time of day or night. She gave it to me immediately. I’ve had to text her a number of times with all of his emergencies. She responds every time.

Monday was Labor Day. Dad was out of a medical supply that I frantically tried over two and a half hoursto find. It was beyond ridiculous. His doc and I texted several times. I traced lead after lead after lead just hitting brick walls thanks to medical bureaucracy, which generally has no common sense whatsoever. Eventually, I came across Eric’s name, the district manager. He said he lived in Syracuse and wondered if I could meet him half way. Syracuse is over two hours away. I could do it because I was desperate. But then Dad’s is another 45 minutes away.

Eric called back and said that no way was he asking me to drive on a holiday. He drove over two hours to arrive directly at Dad’s apartment with plenty of medical supplies. Then he apologized to me for having to call several times to find the right place. Are you kidding me? I couldn’t believe he did that for us. I don’t care if it was his company’s fault that Dad had run out. That man didn’t have to do that. It was a holiday for him too. I couldn’t even explain to him that I could care less that it was a holiday. But I was truthfully overwhelmed with the last five days with Dad’s enormous medical responsibilities. I had spent hours and hours every single day to care for him, canceling work, etc.. I could have cried for joy when he said he would take care of it. Total stranger. Eric, you rock!

The next day, the nurse from the doc’s office called. I had put a call in earlier because Dad was also out of his medication samples and needed a script. She called me back to inform me that he needed authorization from insurance and it would take several days. She said she would bring me samples. Where could I meet her? She chose a diner between our houses and I met her there. I asked if I could buy her breakfast. She said she would eat with me but that I wasn’t going to buy. She handed me 12 bottles of samples. I absolutely insisted I buy breakfast. Almost total stranger. Amy, you rock.

We all have legitimate bitches and complaints about the world we live in, and the people who occupy that world with us. But I don’t ever want to lose sight of those who are exceptional. They are truly out there. I try to sacrifice for others, but I fail at times. Thanks to those of you who remind us what it means to care sacrificially about others.

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Frustrating “Treatments”

It is well-known that sometimes when you treat a condition, you create another problem. All you have to do is listen to the medication commercials and hear all the possible side effects. My dad went through this recently. He had a hernia operation. That was successful, but for no known reason, it threw his bladder into chaos. He got a foley to relieve that, then got a UTI (most likely from the foley) and developed severe sepsis. The only way to treat that is with antibiotics, but they also had to drain the urine with the bacteria. Foley back in.  If that’s not a vicious circle…

I was recently talking to a close friend about depression. I probably have known this for a long time, but I had never consciously articulated it. I don’t know any official statistics, but I think the majority of people who suffer from more severe bouts of depression tend to isolate themselves. Sometimes you don’t know for days or even weeks because you don’t see them or talk to them. For whatever reason, I am the opposite. I am like, “Hey! I’m depressed. I need you to get over here ASAP.” I have no idea why, it’s just the way it is.

After recently falling into record lows for myself, as well as interacting with people I love who also struggle, I am reminded of what I have been telling clients for years. Medication is definitely helpful and probably even required. There are a whole lot of other “interventions” that have been deemed useful as well. Most of them are common sense things that relate to health in general. Eat healthy (avoid sugar!). Exercise. Do activities that you love and/or fill you with pleasure. Interact with support people.

Here’s the frustrating part. How the heck do you do any of those things when you are depressed? They are helpful in preventing depression. They might even be helpful if you struggle a bit with the blues but don’t really cross over into actual depression. But if you are really depressed? Forget it.

Eat healthy? Lots of people eat nothing. How can you when you don’t get out of bed? Lots of people eat crummy foods. I go back and forth between the two. Eating healthy requires more prep and work. If I am lucky enough to move around the house, I’m going to grab what is easy. AND… I’m going to eat what I like instead of what I should. There’s another vicious cycle. Carbs taste great on the way down, sometimes briefly lifting my mood. Then you crash even harder after the sugar high goes away. Plus you feel bad about yourself because you  know you are going to gain weight and not feel so great about your attractiveness level.

When I crashed a few weeks ago, I had gone out to the pool. I was out of earshot of Frankie that way. Plus, I didn’t feel as bad about the friends who were staying with me if they were sitting in the sun. The problem was, I knew I was starting to get sunburned. It was also contributing to my light-headed feeling which then was adding to my panic symptoms. I knew it was happening, but I couldn’t move. Eventually, my peeps took a beach towel or two and soaked them in the pool water. They laid them over my body so I would at least stop getting burned.

If you’ve never experienced this kind of debilitating depression, that probably sounds crazy to you. How could you not just get up and walk back to the house? I remember a brief conversation about moving to the gazebo but that would have required moving furniture around. The mere thought paralyzed me. Way, way too hard.

Simple solutions. Impossible to do at certain moments in your life. Sure, do these things to get out of depression. Just know you probably can’t do them if you are depressed. Frustrating, to say the least.

If you love someone who struggles, please just be patient. Listen and listen some more. It will be tempting to offer a host of suggestions that would seem simple and possible to the average person. But trust me when I say, there are times when you just can’t.

Thanks again to my many friends and loved ones who sat and sat with me, and knew to put cool coverings on me. If you are loved by someone who can accept you at your lowest points, you are truly lucky. (Of course, when in the middle of your struggle, you might know it intellectually, but it won’t make a difference in the quality of your life in that moment.) That’s ok, because those kind of people stick by you anyway.


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Running Amok

First, before I start my blog, please notice the “badge” on the side of your screen. I didn’t even realize it was a thing, but I made #62 out of the top 75 blogs on the web that focus on healing of some sort. I am honored to be a part of this! Thanks to my small but devoted readers who are making me visible out there.
Scott, my therapist, talks about “the perfect storm” that I seem to find myself in often. You know the kind. Your boyfriend breaks up with you the same week that your kid has a birthday, your dad has surgery, and you have two funerals to attend after just attending one last week. The thing is, I am actually kind of a pro at this kind of thing. I have perfect storms somewhat regularly in my life. I get stressed, have my intense reactions, but always power through. So what the heck happened?
The only thing that makes sense to me is this. I have heard for years now about how strong I am. “One of the strongest women I know” is something I hear often. I know I am strong. I know I’ve managed several perfect storms in my life and handled them pretty well. I’ve been to hell and back a few times. “You’ve been through so much” is another thing I hear often. Why the breakdown now?
If I could talk to Jay one more time, if someone I knew could run into him, what I would communicate is this. You did it, Jay. Something we didn’t think was possible. You broke her. One of the strongest women around.
Yep, that’s how I feel. Fair or not, my relationship with Jay broke me. Granted, I’ve been chipped away at for years. Every break-up, every jerk, the years of taking care of Dad, the years of being a single parent, being a business owner… I’ve been slowly chipped away at.

What was left of me was crushed.

When I went in for my emergency session with Scott, he told me about a book he had been reading. It studied a tribe/culture where when people reached their threshold, they would take off all their clothes and really let it rip. They would cry, scream, yell, and run around naked for as long as they needed. They called it “running amok.” Then guess what happened? They were done. They would be fine.

When I “lost it,” both Scott and I knew what happens in our culture when you run amok. You get hospitalized. And we both know what happens then. They sedate you. That’s about it. While a rest would be welcome, not much else good comes from it. Then it is on your record and God knows what ramifications that could have. When I reached my breaking point, I knew that I had to find a way to help myself without going to the hospital. Crazy without going to the loony bin. My goal.

For me, I needed rest but that never means being alone. Alone is the last thing I need when I hit bottom. Not that I’ve ever hit bottom like this before. This is unlike anything I’ve been through. Like I said, I was broken.

My peeps started a babysitting schedule for me. I didn’t know what else to call it. I just needed someone to be with me, come whatever mood swing would happen. I have a ton of amazing friends and family, but it was still extremely difficult to pull that off because everyone has very busy and difficult lives of their own.

I’m sure I will write about this in weeks to come as I’ve by no means fully recovered. I will just tell you about the worst of it. That was day two of running amok. I had just answered a brief phone call from a supportive friend while lying on a chair. The next thing I knew, I couldn’t breathe. I knew it I was hyperventilating but I couldn’t stop it. My friend had experience with this from a family member so thankfully she knew what to do. Not sure I would have know how to handle it. She sat me up and then literally sat under me to give me physical support. I was worse than a wet noodle. I had no strength and my body was completely limp. At times I would stop breathing. At first, she just kept encouraging me to breath in a soothing voice. It was scary as hell. I would gasp for air and then found some muscle movement because I gripped her arms that were around me fiercely. I was so frightened.

Eventually, she led me through some beach imagery which got my breathing regulated. Then the sobbing started. I sobbed from the bottom corners of my very being. It was like wailing. I couldn’t stop. She mentioned in her soothing voice that I would get through this. That set up the vocalization of what was gripping my heart. I don’t want to get through this. I don’t want to survive. I don’t want to exist. I am tired of being at this place in my life. Not being loved by another. Not having anyone to give my love to. Suicide is not an option but I just wanted to be dead. Please God, have some mercy. I was horrified at what I heard myself saying but I couldn’t stop it.

She mentioned all the people who love me. All the people who need me. All the people who have a better life because I am in it. That started the anger pouring out. I know I help people. Who the fuck is going to help me? When is it my turn? Nope, don’t want to live like this any longer. Tired of trying to fix it. I’m broken. Just shattered.

Eventually, it all stopped. Then I was just exhausted beyond belief. Between the hyperventilating, the sun, and not taking my medication, I couldn’t walk well. I was very dizzy and off-balance. But we came up with the brilliant idea of settling me in my office. It was apart from the house which was my greatest concern. I didn’t ever want Frankie to witness any of that. Not one second of it. He doesn’t need that. My office became a place to escape to, and still is. Things have not gotten as bad as that one day, but it is a very slow climb back to a functioning life.

I’m not used to that. The way I’m wired, I feel things very intensely. It’s magnified and painful. But the upside, is that I’m done with it quickly. Break up with me on Monday, I’m back on Match by Wednesday. Not this time. Just not bouncing back this time.

The most maddening part of it, is that even though I’m furious at Jay for the way he played with a heart that has been through so much suffering, I still think about seeing him again, talking to him again, wanting to re-connect the deep way that we did. I want him to know how badly he hurt me because I know he has no concept whatsoever. But then I want him to fix it. Not feel bad, but come home to me. Whatever that might look like to start again, but let’s figure it out. Just give us a try.

I promise, love is worth it.


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Weight Management

If you’ve known me for a while, you know I’ve struggled with my weight most of my life. I look back now at pictures when I was younger and I think, what was I worried about back then for? The last decade or so, I’ve figured out what the biggest problem actually is. Sugar addiction. Really bad sugar addiction.

Once in my life, I met with a dietician and actually lost 25 pounds. First and last time I ever really had a big success to brag about. Since then, it’s just been that roller coaster thing.

I know when I’ve lost control again. The clue is when you are at your friend’s party and her aunt is waiting in line for the bathroom with you and asks you if this is your first pregnancy. I used to have a rule where anytime I am asked that, I have to get rid of the outfit I was wearing. After all, it must not flatter me, right? That rule didn’t last long when I didn’t have any clothes left. Luckily, that night I was with my super great boyfriend. He told me that in a few hours when we were alone, he would be able to reassure me that I was very attractive. We spent the night joking about “the baby being hungry” and other such lines to make a joke out of it.

The next weekend we were out late and ended up ordering dinner about 11 pm. I ate an entire fish fry and then was still a bit hungry. I joked about the baby being hungry again and I watched his face turn white. He stuttered, “Are you trying to tell me something?” and then I reminded him of the joke. It was hilarious. For me, that is. Poor guy.

Today I was with my dad and sister at the doctor’s. I offered to help this sweet elderly lady ride up the elevator. She didn’t want to go by herself. I was feeling pretty good about myself because she and the staff thought I was so sweet. After the doors closed, she looked at me in her kind voice and asked, “How many months are you?”  Sigh. Definitely time to concentrate on losing weight.

We went out to lunch after the doctor’s. Old Country Buffet. Gorge festival. You know the kind of places. You eat  until it is painful. My favorites filled my plate (more than once). Carb city. Mashed potatoes, french fries, rolls, mac and cheese.

I WILL concentrate on being more healthy.

Tomorrow I guess.


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Being Mortal

One of the big books on death/dying is “Being Mortal” by Atul Gawande. Recently, Hospice sponsored a viewing of a PBS show Frontline that interviewed this doctor and several other “specialists.” It was produced only a few years ago. (It is available online for viewing at pbs.com if you are interested. I will have a link at the end of the blog.)

I don’t usually get emotional much at these events because I am so consistently immersed in the topic, but this one got to me. There was a video of a man who they were discussing Bilirubin levels with. He was strikingly yellow from jaundice. It all came back to me with a rush. All the same lingo, walking in and seeing Tim’s face and body in strikingly yellow color. That was it, I was done for.

This is not meant to be criticism, just observation and it was fascinating to me. Here was this documentary with doctors, some actually oncology doctors. One was considered a “palliative care expert.” Their ability to handle medical information and dying patients was a bit abysmal. Most of them deal with it day after day, and yet that had no grasp on how to handle the dying with dignity. In fact, usually the patients were much more comfortable than the medical teams working with them.

The author and narrator said it himself. Three doctors in his own family. When terminal illness struck, not one of them knew what to do. Wow.

One of the things I walked away with though, is what I’ve heard over and over again. Doctors feel like anything less than cure is a failure. Of course everyone knows we eventually die, yet somehow they expect themselves to do the impossible. What’s worse yet, is that living forever (in any condition) isn’t even desirable for most. What a mountain of a problem.

Yet I felt hopeful. Here is a doctor that has put his failures on TV for the world to see. That is extremely rare in our culture. In fact, the scene opens with a family who has lost someone relatively young. He tells the widower that he outright lied to his wife. He gave her hope to live when there was none. He couldn’t tell her the truth. Being willing to admit all of that in hindsight though, is incredibly brave in my opinion. And it leaves the door wide open for change and improvement.

The biggest lesson from the documentary, was that the conversations all were happening much, much too late in the game. By the time the doctors faced the truth, it left little or no time for people to attack their bucket lists, say goodbye, get their affairs in order.

The other thing I took away, was how incredibly blessed and lucky Tim and I were. Somehow, we knew to always ask about prognosis. We were able to make the most possible out of the five months we had. We had lots of docs and medical peeps who were honest and open with us. At the very end, our Hospice nurse Patty was beyond outstanding when Tim was grappling with the truth of the end of his mortal life. She didn’t stumble, not even a tiny bit. She was strong and steadfast and honest.

One of the closing comments was short but profound. We need to treat persons, not patients. Period.

My last observation was this: Someone needs to design those damn hospital beds for the end of life that are double in size. It is beyond heartbreaking to admit the reality and not be able to climb in next to your loved one at such a sacred time. Footage after footage showed people in their dying hours with their loving support next to them, but not near enough. If someone wants to market that little nugget, please feel free but mention me when you make your millions.

Thanks Dr. Gawande for making such a courageous documentary.

Link: http://www.pbs.org/video/2365422384/


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Care Calendar

There ought to be a name for people who are elderly, but not in need of a nursing home. My dad fits right in that in-between category. He is able to live on his own, but not without some assistance. He needs more than nothing, but doesn’t need to be in full-time care.

He and I recently had a talk again about where he lives. He is in a one-bedroom apartment. He isn’t quite ready to move in with me and my family, and he doesn’t want to live in an assisted living home. Frankly, they can be a bit pricey. The next thing you know, your life savings is gone. (I mean your LIFE savings… a person’s entire work life savings.)

I asked him if it would help if his family/friends set-up a calendar so he had some things to look forward to. He thought that was  a good idea so I was glad. I was also overwhelmed though. I knew that I would have to be a lot of phone calls and also figure out a way to keep everyone informed. I felt the stress radiate through  my shoulders. Then it hit me.

Care Calendar! When Tim was sick, our friend from church was kind enough to be the administrator for our Care Calendar site. For those of you who haven’t heard of it, take note because it is an amazing site. You can find it on carecalendar.org and it is free. They encourage you to make a donation if you want, but it is free to utilize.

I spent the afternoon setting up a page for Dad. It was well worth the time investment. It is literally just what it says, a calendar. On that calendar, you can put as many “needs” as you would like. I set up meals, grocery shopping, transportation, apartment cleaning. and visiting. People (“helpers”) can then visit the site if given a code, and sign-up to take care of any of the needs listed. There is even a separate code for more sensitive/personal items that you wouldn’t want the general public to see.

When a person signs up, they give their name and email address. When it is time, they will receive a reminder email that says, “Don’t forget, you are bringing Joe Schmo dinner today.” As the coordinator, I also get an email that says, “So and so is bring Joe Schmo dinner today.” It’s an excellent system.

With the meal example, it will also show relevant information. For example, I set it up to tell people what Dad’s diet restrictions are. Currently, he is on a “mechanical soft” diet, which I define for them and also give examples of things that would be good for him to eat. The calendar can show what the person plans to bring him too so others will know and he won’t get the same type of food every day.

It really is an amazing tool and I can personally attest to the remarkable difference it made for Tim and I when he was sick. We were able to concentrate on him because our basic needs were totally cared for. I have such fond (and humbling!) memories of that part of our journey. People’s kindness was overwhelming. I am hoping that this works well for Dad too, although his needs are minimal compared to someone with a terminal illness.

Thank you to the family that started this brilliant site. And we will definitely be making a donation in the future 🙂 !


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Cinnamon Toast Crunch

Well, nobody is perfect.

I said to Frankie, “Hey, remember when you were younger and I asked you to write my blog and you did?”

“Yeah, but I’m not writing it again.”

“Come on! I’m looking at a blank screen.”

“Well, think of something.”

“Frankie! At least give me an idea.”

“Fine, Mom. Write about how you ate all of the Cinnamon Toast Crunch this week.”

Last week I blogged about my attempts to eat and sleep better. I am happy to report that I did follow through with what I said I would. I set up an alarm appointment that reminded me to go to bed at 11 pm. Last night was my first night at 10:45. Unfortunately, I couldn’t fall asleep for anything.

I also set an alarm for 8 am to drink a protein shake. I am happy to say I either did that or ate bran flakes every morning to start off the day correctly. I haven’t felt like it is habit yet though, but soon I am hoping to add “no eating after 9 pm” then gradually work back to 7 pm.

I try. I really do. I have no idea if I’ve lost weight or not, but I try not to focus too much on pounds anyway. The goal is to be healthier. I don’t think that is just rhetoric, I really believe it’s an important dynamic to success.

But I still fail miserably sometimes. I might eat well all day, but at 10 pm I will eat something I shouldn’t. Thus the Cinnamon Toast Crunch. I knocked off a box the other night, which consisted of two really full bowls plus another half.  Frankie informed me he doesn’t eat it anymore anyway, so I told him I won’t buy it. He said I buy it for me because I want it, and I told him that of course I WANT it, but I try not to eat sugar cereals so I really WON’T buy it anymore if he isn’t going to eat it.

He’s such a tattle tale. When he was really little, we went across the street to a neighbor’s party. I walked into the living room after visiting outside for a while to find a room of laughing adults. Frankie was in the center. He was telling them all about his mom’s Wii-Fit program. It has my weight down to a tenth of a gram. Also my BMI. He also delighted in showing the crowd several of my non-sexy exercise poses.

Traitor.

I went to a birthday party last weekend where we had a homemade cake from scratch with dark chocolate ice cream on the side. My “always eats healthy” friend mentioned a cake recipe that replaces sugar with beets. I could have died. I yelled out to the guests, “Anyone interested in a cake made with beets instead of sugar?” He almost slugged me. Definitely not me.

I will never be good at this weight and eating stuff. Never. But I also probably won’t ever stop trying to at least move in the right direction.  As they say in Alanon, “Progress, not perfection!” Amen, sister.