Help for Healing

Bitter & Sweet, living daily with grief


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At 50?

I can’t believe at age 50 I feel like I’m back to square one. I know I’m not alone in this. Who would have ever believed that the big questions like career and partners would still be up in the air and a struggle when your life is more than half over?

I did a presentation this week about two hours away. A whole group of us participated in a death/dying conference like the ones we had done in Buffalo. It went great. Almost every speaker was dynamite and the audience seemed receptive and even enthusiastic.

I was the last speaker of the day which was tough because I knew everyone was tired. It went over extremely well though and I knew I had reached people by the feedback. The problem was, I didn’t make a penny.

So frustrating. I know I possess a good skill set. I can speak and I can write. I can do them both very well. The other panelists all came from companies or hospitals they represent. They are getting “paid” because it is part of their salary. I’m the only lone ranger in that sense so if there isn’t a speaking stipend (which 90% of the time there is not) then I can only hope I sell books.

I didn’t sell one book. I watched the woman next to me sell about 10 books. Same topic, different angle. Both of us good speakers. WTF?

This is not new. This is the scenario 99% of the time. I am well past the point of being able to write/speak simply because it is helpful to others. My heart is there, but my pocketbook is not. I am the sole breadwinner in my house. I have a family to provide for. And my social security is being cut in half in less than a year. Holy crap that is scary.

I’m going to have to reinvent my career and I have no idea what to do. Well, actually I have tons of ideas, but knowing which path to follow is confusing at best. Add coping with severe depression on almost a daily basis now, and it is beyond overwhelming.

What do I want to be when I grow up?

I thought that was settled years ago. I even had a brave moment this week and attempted to go on a date. I got stood up. I know it isn’t personal because we hadn’t even met yet, but cripes. Stick your toe back in and find out the water is frigid.

That’s was scary about being so depressed. You have to take risks in life and be proactive if you want to meet your goals. But if you are already down and out, you can’t afford to fail. At anything. What a freaking catch-22.

For the moment then, I will just stay stuck. Not sure what the heck to do with myself. I know I can’t stay this way, but I’m terrified to do anything else, with any of these areas of my life.

Maybe 80 is the new 50. Maybe I just have to wait another 30 years and things will fall into place. One can only hope :).

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Shut Out

I am presenting next week as part of a large panel and am going to attempt to integrate Power Point for the first time. I know, I’m behind the times.  They are very simple slides, but I’m long past due for getting a more polished look for my lectures. Same topic as usual. Why is it important to confront the uncomfortable concept of death and dying?This presentation is going to be a little different in that besides talking about my experience with Tim, I am also going to talk about a current situation.

I met a very, very dear friend after Tim died, who has become in some ways like a second father. He’s just a couple of years younger than Dad and bears some physical resemblance to him as well.  He has actually met my dad a few times. He has been in the hospital the last several weeks. I have visited when I can, but recently the family has requested no visitors outside of family. I certainly would not ever want to offend the family, especially in such a stressful situation. The problem is, what is the family wants something different than the patient.

My friend had reached out to me and said he wanted me to visit. I even double checked to make sure I understood correctly. That is quite a dilemma. Why would the family not want me to visit? I don’t know, but I can attempt to make an educated guess.

Things can sound quite sensible in theory when you are talking about them outside of your personal experience, or especially outside of an actual acute situation. When you choose a health proxy, for example, many people think the appropriate person would be the person you are closest to. Actually, much more important than that, the proxy should be the person who is most likely to honor your wishes. Sometimes what we want for our loved ones is not what the actual patient wants. When the time comes, you might find it difficult to do what your loved one wants if it is different from your own desires. If you are emotionally in deep, doing the “right” thing (in this case what the patient wants) can become very cloudy.

My often mentioned friend Darren articulated something that really struck me. We were talking about this situation and in general about how I often am trying to do the right thing and somehow end up “being the bad guy.” He said it is because I bring light to the dark corners of the room that haven’t been swept out yet, because I’m not afraid to go to the difficult places. I loved that. Not sure I deserve that much credit, but it felt really great to hear.

One time when I was visiting my friend, he started to open up to me about what I loved “end of life stuff” such as how his illness was affecting his family. Then there is the big question of why is this even happening? That is the one I always say I don’t think there is an answer to. Why do we die? Because humans don’t live forever. We all have to die at some point. Every one of us. Because there are cancer cells we can’t control. Because there is disease, violence. Because people make bad decisions sometimes. But sometimes it is just because we are mortal.

I did my best to work through the labyrinth with my dear friend. In the background, one of his family members was bustling around saying things like, “Don’t worry. This is just a bump in the road,” or “You will be back to normal in no time.”

I cringed. He has stage IV cancer and there are no treatment options left. No, this is more than a bump in the road. This is nearing the end of the road. No, he will not be back to his old self.

I think he must know deep down. I think that is why he wants to talk to me. I can handle the conversation. I wonder if deep down he understands he can’t really talk to his family member. But now it feels like I’ve been shut out.

I don’t know how it will play out. At this point, he has changed his mind about visitors. Was he told that I am acting crazy? Or is he just not up to company? All I know is that at one point he specifically asked me to come and I couldn’t go. Well, I could have but I would have greatly upset the family. That is certainly not my goal.

It’s all heart breaking. I dream about him and I keep thinking if I don’t get a chance to see him again, I am at least relating to him on that level. I just don’t want him to think I have abandoned him in this very fragile time of his life. He has given me hugs and hand holding many, many times when I’ve been down and out.

Keep him in your prayers, and the family as they grapple with accepting the upcoming loss of such a wonderful human being.


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Whining

A week and a half ago I hit my elbow. I remember that I did it and yelled out because it was ridiculously painful. I can’t recall where I did it or how, just remember the incident. I was surprised that over the next few days I couldn’t use my arm in certain ways (like pulling the garbage can) without it hurting. Then it got better. Then I attempted yard work. I was using the long-handled cutters to trim bush branches and suddenly, there was seering pain from my elbow to my wrist.

Excellent reason not to do yard work anymore. So I got that going for me, which is nice.

It seemed like a silly thing to call the doctor for, but I bit the bullet. Now my doctor rocks. I love her to pieces. The nurses are also pretty cool for the most part. But the staff in general is a royal pain. I complain quite often and my doctor seems as frustrated with them as I am.

First is to set up my appointment. My usual doc is booked up so I am seeing the other one. I don’t mind that at all. He is pretty cool too. I really wanted though to ask some questions about whether coming in to my primary was the best step. I ask who are the nurses on duty are today.

That did it. The nonsense started. It’s a straight question that requires a simple answer with the names of the nurses. The staff is not confidential, the patients are supposed to be. The receptionist is completely flustered and does everything possible to evade the answer. Bizarre. Then I just ask to speak to the nurse I am quite close to. More craziness and finally a blurted out, “She’s not accepting calls today.” Ridiculous.

“Can you please leave a message for her to call me.”

When I came in later, she tells me she is sorry but that the staff was protecting her because she was slammed. I get it and I listened politely. I just said, “So and so is here today. She is extremely busy so if you don’t get a call right away, please be patient.” Would that have been so hard to say? Instead, he (the receptionist) acted like I had asked an extraordinarily inappropriate question.

What I didn’t say (but wanted to) is that this is MY medical team. I pay for your services. Therefore, I help pay for your salary. Isn’t the medical field supposed to be protective of the patient? Sounded exactly like what I went through at Roswell with the patient advocate. He did not advocate for Tim at all. Clearly, his job was to keep us quiet so the doctors were less stressed. Maddening.

Anyhow, turns out I have tennis elbow. Now if you know me, you will find that to be hilarious because I am utterly and morally opposed to exercise. Tennis elbow is usually a chronic condition over a long period of time due to repetitive movements such as swinging a racquet or golf club. I however, have an acute case. I smashed it, then re-injured it. There is blood in the bursis (where bursitis comes from) so he couldn’t give me a shot because he didn’t want to put a needle in all that blood. Ice 3-4 times a day. Elbow brace 24 hours a day except for showering, for six weeks. And he really, really wants me to baby it, coddle it, hardly move it.

Now if you know me, you will also now be rolling your eyes. By nature, I am already a massive baby. You will never hear me making fun of men who are sick. I am the absolute worst.

It’s my left arm and I’m right-handed.  Didn’t think it would matter much, but it has turned out to be like anything in life that you take for granted. You don’t realize how much you use something until you can’t use it anymore. The biggest culprits are:

Driving a car (because you close the door and get your seatbelt with your left hand)

Flushing the toilet (because the handle is on the left side and it is a power flush and requires force to get it to work)

Unbuttoning my jeans to go to the bathroom (buttoning is no problem for some reason. Unbuttoning makes me squeal.)

Unsnapping my bra. (Ok, smart ass. For those of you that know me well, YES! I have actually been wearing a bra!) Seriously, putting it on is no issue but taking it off is awful.

So I have been whining and complaining and babying myself, and it has all been sanctioned by my doctor. Aren’t you glad you don’t live with me?

 


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Same Old

Hate to be negative, but I write best when I write about what is genuine inside of me. Unfortunately, for those of you that prefer the glass half full, I have struggled with depression for years.

I woke up twice last night with hot flashes. It made me wonder if menopause is adding to my decline. I know that the older I get, the less I seem able to cope. You would think that with age comes wisdom and experience. For me, it seems like I just carry the accumulation of blows without ever fully healing. Nothing has changed drastically in my life, I just don’t cope as well anymore.

The last couple of days have been bad again. Yesterday I couldn’t force myself out of bed until 11, and then by 1 I had a full on crying spell. I panicked. I was so scared that I was having another breakdown like I did in August. And I promised myself I would never go there again. What happened?

Unlike lots of depressed people, I don’t isolate when I tank, I reach out. I followed my gut and turned to an interesting trio of people. One was my doctor. The upshot of that, is that we are going to mess with my meds a bit. I am waiting to hear from her today to figure out which option we are taking. I only want to try one strategy at a time so you can know what and if it works.

The second person I called was my former pastor. I don’t have contact with him anymore and I have no idea what made me reach out to him. He called me back relatively quickly. The upshot of that is that he is going to meet with me sometime in the near future. Quite honestly, there really isn’t anything to say that is going to make things better. Yet the alternative is to do nothing but live in the hopelessness. So I am waiting to hear back on his schedule.

The third person I called was my former spiritual director. I haven’t seen her in years. I expected to leave a message but she answered. I found myself unable to spit much out verbally. She told me to come right over.

In the end, she said what I suspected. There really aren’t any words of inspiration to offer. But she was willing to try to help me on an energy level which she did. The conversation did yield one shift in my articulation of how I feel. I have no idea if it is an important shift or not, but it is all I have.

The bottom line is this. I don’t want to exist. Suicide is not an option. Now what?

The trigger has been the same for almost four decades now. I keep describing it the same way. I hate being alone. I am very capable of being alone, just don’t like it. Can’t seem to accept it. But after talking with her, I wondered if it is more accurate to say this: I hate knowing there is no one out there in the world that loves me in the way a healthy significant other loves. Then I realize I sound like a child having a temper tantrum. So I can’t have what I want. That is everybody’s story. Why does it crush me in a way that seems to be so different from everyone else?

I have no idea.

The other thought we touched on, was that maybe fleeting moments is all there is to experience. I had two months with Jay. I had six weeks with the salesperson I dated a few years ago, and I had five months with Tim during the time when he was dying. The most powerful connection was definitely with Jay. That doesn’t seem like much time in a life of 50 years, but maybe that is more than most people get?

I’ve been pondering on that, but the end result doesn’t really change much. I’m still left with where I am at. Which is where I am usually at. Where I have been at most of my adult life. This thing I am missing in my life seems to be larger than the big picture of my life. I see it happening but I don’t know how to change it. I have pockets of good times and experiences, but the rabbit holes are just a matter of time. And the older I get, the less time I have in between the episodes. The episodes result in going to sleep and praying that I don’t wake up the next day.

It’s no way to live, but what choice do I have?


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Preaching to the Choir

My dad moved into assisted living this week. I burned the candle at both ends for a couple of weeks, but he applied, got accepted and moved in rather quickly. On move in day, we had finished all the paperwork but the moving truck hadn’t arrived so we decided to go shopping for some items he needed for his new apartment.

I do not generally enjoy shopping, but this was actually kind of fun. I felt like a mom with a kid going off to college that needed to furnish his dorm room. We went in with a list. The windows are all new and sometimes people don’t even use curtains anymore but Dad is old school. He had the curtains already, but he needed new curtain rods.

We went to the appropriate aisle and I was prepared with the measurements from the maintenance man. There are so many options for curtain rods now. Dad? Well, he wanted those plain white metal ones that bend in an “L” at the end. I did my best to try to change his mind. “Dad, there are so many cute ones. How about this one?  Or this kind? Or this? They aren’t that much more expensive.” Nope. The curtains cover these rods anyway so what does it matter? “Jeeze, Dad. You’re no fun. I can’t believe you are picking the boring ones.” There was an older lady, probably close to Dad’s age in the same aisle. I heard her snicker a bit at our conversation.

We moved on to the next item on the list. We happened to bump into that same woman. Or perhaps not. Perhaps she followed us. She walks up to me, puts her hand on my arm and says ever so firmly, “Now young lady, you know that your opinion doesn’t matter one bit. After all, it is HIS house and he should pick out what he wants.”

I was a bit taken aback, but I thought she was really going to be embarrassed when I pulled those old, ugly white curtain rods out of my cart and showed her that he indeed makes his own decisions. I said that he always calls the shot but I like to rib him a little. It’s what we do.

She was having none of it. She went on to say that, “Someday, YOU will be a senior citizen too and THEN you will understand things.” Her disgust of me was crystal clear. My mind was racing. Me? The one who tends to my dad’s every need? Surely she should know that my sister and I both worked in nursing homes. There was no McDonald’s jobs. We took care of the elderly. Surely she should know that when I lived in Chicago I set up an “Adopt a Grandparent” program for those elderly folks that had no family. I have a lifetime of being respectful to senior citizens.

Her final parting shot (as if the first two weren’t enough) was, “My goodness. Your father and I were certainly raised very differently than your generation was.”

Huh.

She couldn’t have been more wrong about me. It got me thinking though. Jay pointed out to me that people like us go to all the trouble in our heads (or out loud) to defend ourselves when really we don’t owe anyone an explanation. But we even if there is no one to hear, we have to justify ourselves to ourselves. Crazy.

I also wondered how many times I have heard a snippet of our conversation and thought that I had accurately surmised the dynamics with all of my expertise and experience. What the hell do I actually know anyway? I can be pretty accurate with my intuition, but it’s nowhere near 100%. I will try to keep that in mind the next time I have an urge to confront a total stranger (or a beloved person for that matter).


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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.