Help for Healing

Bitter & Sweet, living daily with grief


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Not Fun To Write

This is not a fun blog to write and I’ve been struggling all week with how to word it. Let me start by saying that I do not blog with the intention of airing my dirty laundry, or anyone else’s. I write mostly for two reasons.

  1. Writing helps me to process what is happening in my life. It is for my own mental health.
  2. It appears to help other people process things in their own lives. Being able to identify with someone who is brave enough to voice their inward thoughts and feelings moves them along in their own growth. That is why I say all this work (the books I’ve written, blogs, my career path) are the lemonade I have attempted to make with the lemons I have been handed (mostly the deaths of the people I loved dearly).

Obviously then, the goal is to heal, not to hurt. I am completely aware that when you post anything on the Internet, you are making yourself vulnerable and subject to criticism. I’ve never been a fan of that but I understand it comes with the territory.

What I find disturbing, is when people use my writing to hurt me, or even worse my family. It has come to my attention that “people” (I don’t know who or exactly how many) have been telling my kids that I write awful things about them on my blogs.

The worst part of that is why the hell someone would do that? What motive do they have? It can’t possibly be for the good of my kids. It only hurts them to think the one that cares for them is not actually caring for them. And how could it be good to try to create division in someone’s home? The only motive that makes sense is that that reader doesn’t like me and wants my kids not to like me either. That is selfishness of the worst kind- hurting others for your own “gain” if you could even call it that. Or maybe the reader just wants to hurt me? If so, congrats! Hurting my kids is about the shittiest thing you can do. Any mother knows there is no worse pain than seeing your kids hurt.

What else sucks is that telling my loved ones that I trash them is completely untrue and false. I do write about the struggles of parenthood at times. I do write (rarely) about things my kids do that are hurtful. But the intent is not to bash, it is to learn and grow and heal from. Any parent recognizes the truth in that. When you look at the big picture of my writing, most things are positive when it comes to them.

When I was approached by one of my kids with this idea that I am “negative” about them, I responded with two things.

  1. I reminded them that a couple of years ago I had a SPECT image done of my brain. (Blogged about that, too.) It uncovered that I have “refractory depression” which means lifelong depression and also resistant to treatment. My “negative” slant in life (my ability to identify often with pain) is part of my hard wiring, not part of a plan to hurt the people I love.
  2. I read an excerpt from my PUBLISHED BOOK that spoke to the high heavens about how I feel about them and the deep love I feel for them, proving that I do not go around trashing them. It was obvious to them at that point, that the sources who were feeding them information had completely misrepresented me. Perhaps in the future, they will ask their “sources” to be silent, or maybe they will read for themselves before assuming the gossip is true.

Although I was surprised to even know that many people bother to read my blog, I do have a couple of things to say to those readers who are doing so in order to hurt my family. First, why don’t you contact me personally instead of hurting my kids? Or better yet, why don’t you post comments on my blogs and see what kind of reactions you get? Just because I share my rawest emotions, doesn’t mean it is easy to be that vulnerable for the world to see and criticize. It isn’t. So instead of attacking me behind my back, have the courage to speak up. If you can’t match my bravery, then stand down.

Lastly, shame on you. My family has been through enough heartache. Stop spewing poison. Whatever reasons you think you have, they are not appropriate. Our family may not be perfect, but we are all here together. We have been since Tim died. We have survived and we love each other. LEAVE US ALONE.


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Spect Imaging Results

Last year, I started surfing the net about Spect Brain Imaging. Dr. Daniel Amen is the name I had been turned on to and I began listening to his many lectures on-line. Since then, I have spoken to a couple of critics of his work. Overall, the feeling is that he claims brain imaging can do more than it actually does, but there is merit to the concept.

My interest was twofold. One, my son plays hockey and is a defenseman. He takes a lot of hard hits and is a tough player. Dr. Amen works a great deal with NFL players and has done a ton of research on concussions and the effects on the brain. Secondly, being a psychiatrist, he showed some fascinating brain scans related to depression, ADHD and other conditions.

As a mom, I want to know. As a mental health counselor, I want to know. And as a person that has had several decades of struggling with depression, I want to know.

Turns out there is one psychiatrist in western NY that does Spect imaging. I waited several months and finally got in. An MRI and Spect image together seem to offer the greatest combination of information, so I complied. Last week I got the results.

“Impression: Abnormal Resting Brain Bicisate Spect Due to:

There is diffuse frontal cortical hypoperfusion with pericallosal medial frontal sparing, most consistent with long-standing or refractory depression.”

What the heck does that mean? As the local skeptics suspected, the results didn’t do much of anything to change the course of treatment for me, which is why there is question as to its usefulness. However, it did something less tangible for me, but still quite important.

People who don’t struggle with depression often have difficulty understanding it. For people like me who have a good family, an excellent support system, and a host of other “blessings” in my life, understanding how I could be depressed sometimes is almost impossible. And for people like me who are self-critical, there is a huge level of guilt that comes with the depression because I am fully aware of all the gifts in my life. Feeling depression seems wrong and ungrateful.

I’ve tried absolutely everything over the years. I couldn’t even list all of the medications that I’ve gone through. Counseling, of course. Psychiatrists. Acupuncture. Spiritual Direction. Daily affirmations. Gratitude journals. Vitamin D. I can’t even remember all of the latest and greatest hopes and remedies to help cure depression that I have tried.

Now I’ve “tried” brain imaging. I actually found it to be validating. I can now articulate in another way what is going on with me, especially when talking to the people I run into that think I should be able to change how I feel if only I would really try. My brain indicates refractory depression. When I asked what that meant, I was told, “resistant to treatment.” The doctor said that is perfectly consistent with how I describe my life. Medications help me manage, but I’ve never been free from depression.

Currently, we know about Serotonin and Dopamine. There is research happening that looks at entirely different types of issues. There is some success, but we aren’t close to having anything on the market yet. So until then, I will keep managing the best I can. But I also can now articulate what I have always known in my heart: My wiring doesn’t respond to the typical treatments. It just doesn’t. No amount of willing or wanting or self-discipline will alter that.

I will work on dropping the guilt from the list of emotions that come along with the struggle. THAT is useful.


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Impatience is Not a Virtue

I feel like I have a fair number of strengths but patience has definitely not been one of them. It took me until I was an adult to realize that I get that from my dad. He is one of those guys that when he wants an answer or needs to do something, he demands an immediate response. He is a gentle and quiet guy though, so it took me a while to figure that out.

I’ve been thinking about it the last 48 hours that I’ve been watching the snow fall in the month of April, feeling the freezing, strong wind. I walk the dog every day and still have layers of clothing along with a winter coat, hat and gloves. I know I’m not alone. Most people have been sick of this typical Buffalo winter since the beginning of March. We have paid up for the last two mild winters in full. When the heck is spring coming? Fine, skip it, but then let summer come.

That kind of impatience doesn’t really hurt anyone except me. It makes me complain about not getting away to somewhere sunny this winter after I promised myself I would all year. It gives me an excuse to give in if the depression knocks at my door. But mostly I only make myself miserable.

Being impatient with others though is a different story. Sometimes, people say I have the patience of a saint. Sometimes, I put up with things much, much longer than I should. I have a very high forgiveness tolerance too. I guess I don’t fall on the evil scale when it comes to the big picture.

But sometimes, I do hurt people with how impatient I am. I am a type A driven person who has learned to get things done yesterday. I have a hard time understanding why everyone doesn’t behave that way. What? You know you have to do that and you didn’t stay up all night to accomplish it? What? You know you have that deadline and you didn’t power through your pneumonia anyway? I’m exaggerating a little, but you get the idea.

I’m heading back for a refresher appointment with the spiritual director I used to see regularly. She was relentless with her acceptance of other people and distributing unconditional love to the best of her ability. I need her to remind me of the big picture and being kind to myself while also fully understanding that I don’t hold the key to the secrets of the universe. She helps me be true to my path, but recognize that other people have their own.

One of my dear friends reminded me today that as a single parent who has handled the myriads of things I have managed over the years, I have had to be tough and uber-responsible. I can’t lose some of those standards and boundaries I have shed so much blood, sweat and tears to earn. But I also want to remember to be kind and gentle, and learn to relax a bit. I’ve made some progress over the years, but life has a way of bringing things back full circle to you.

Moral of the story is, that in some ironic way, I am asking others to be patient with me and my growth, at the same time that patience is so lacking in myself. Kinda nervy, isn’t it?

Well, be patient with me.


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Callouses

Today I went to see my very much-loved doctor, Grace. My sister is in town this week so she went with me. I invited her because today was a depression/medication appointment and I know I worry my sister all the time and thought it might help her know who is watching over me.

It was a good appointment, as always. They are usually running behind because Grace spends so much time with every person. I can’t get mad when I have to wait because I know why it happens. Today, though, there was not even a wait.

We went through the medication thing and we added another one to my regimen. It needs to be taken in the morning. I need to figure out how to make that happen. I know it sounds like a simple thing, but sometimes I don’t get to my pill-box until 4 in the afternoon. Actually, today it was 5 pm. I will come up with something to train myself.

Scott, my counselor, suggested I do some research on Dr. Daniel Amen. Being the compliant client I am, I looked him up. I am going to spend time weekly reading/listening to some of his stuff. He is a psychiatrist that uses SPECT brain scans to treat his patients. He says we need to treat individual brains rather than clusters of symptoms. He made total sense to me and I was sold. Brain scan is not something I’ve tried.

I asked Grace and of course she knew what I was talking about. She is always mentioning the latest research on such and such. Do we even have anything like that in Buffalo? There is ONE doctor. That was actually more than I thought. I was envisioning traveling to Chicago regularly. She said I will probably have to wait several months, but that he uses SPECT scans and then farms to his mid-level staff once you are seen and diagnosed. That’s fine with me. Grace was in favor of it because she knows I have tried just about everything known to humankind to beat my depression and haven’t been able to. (I still think meeting a man who is actually a decent partner would help tremendously, but we all know how THAT has worked out!)

I will call his office tomorrow. I don’t care if I have to wait a year, at least I will get the process started. Grace, my sister and I chatted about my symptoms. We all agreed. Somehow, even though I seem to “heal” and “move on” from loss, I carry the scar with me throughout my entire life. That is why I feel so exhausted and used up, like my soul has been chipped away at for decades and I’m finally calling, “UNCLE”!

Then Grace said something that struck me. She said that when a bone/muscle is broken/injured, scar tissue forms over scar tissue. She said the fascinating part is that scar tissue can become stronger than the original bone ever was. I had never heard that. I just looked at her through my watery eyes and said, “Why do I feel anything but strong? I feel so spent.”

I don’t remember what her response actually was. I did walk away feeling like maybe I’m just not there yet. Like maybe my scar tissue is still just forming. The strength may be around the corner. Look out, because if this is true, I am going to be STRONG LIKE BULL with all the scar tissue I have accumulating.

Thanks Grace, and thanks Sissy. I am lucky to have people who care about me and weep when I weep. I promise, I will keep trying to heal.


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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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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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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.