Help for Healing

Bitter & Sweet, living daily with grief


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Good Grief!

My clients teach me more about life and human relationships than I ever teach them. It’s been a week with some very moving sessions. The first one was a woman who is confused and upset about loving and hating her former husband at the same time. And why miss someone who hurts you terribly? I saw myself in her. I was only with Jay four months and I am still regularly tortured by the same thoughts she has. I can’t believe how difficult it is to move forward and how deep the pain still is. This woman had ten years invested and had children with him. Trying to reassure her, I realized I am usually much too hard on myself. Loss is complicated and difficult, but it is what it is. No way around it, only through it.

Yesterday, I had a session with Natalie. Natalie is only in her early twenties, but she has one of the oldest souls I’ve ever met. She lives her life outside the box, yet has a simplicity about her that is soothing and refreshing. A couple of months ago, she found herself with an unexpected pregnancy. Talk about mixed emotions. She and her significant other did a tremendous job of managing the complexity of the excitement with the difficulties of an experience they weren’t quite prepared for.

They got through the first trimester only to have a frustrating week of sickness and illness that had no apparent explanation. And unfortunately, a team of doctors that you could make a case for being nothing short of negligent. This turned into one of the most difficult and traumatic miscarriages I have heard about.

Natalie and her partner took this new experience on with the same grace and maturity that people twice their age find hard to accomplish. She talked about trying to cope with this loss that seemed to be hanging in the air. Having had a miscarriage myself, I could understand. It is incredible that these tiny not-fully-formed lives completely capture our hearts and devastate us with their loss when we haven’t even laid eyes on them.

Yesterday she came in for session, and had just had access to the pathology report. Turns out she had an infection that is relatively rare which caused preterm labor. The baby was a perfectly formed boy.

Suddenly, her grief had a shape, a face, a gender. There was great comfort in knowing that he was healthy and perfect.

And yet… doesn’t that make it even more tragic? And maddening that earlier intervention from the medical system might have prevented this. She understands that maybe not, but maybe it would have.

Again, the bitter and sweet complexity of human emotion and connection. Such happiness and relief from knowing, mingling with gut wrenching grief.

At the end of session, I stood up and said, “Good grief, Natalie!” which I realized was a bit of a pun. Natalie said it was ironic that I said that because of being a grief counselor. Then it hit me. My God, Nat. There it is. The perfect description of it all. Good…Grief. I watched her face as she caught it too. It was one of those sacred therapeutic moments that don’t come all that often in a career.

I hugged her goodbye, but I couldn’t hold her tightly enough to let her know how incredibly grateful I am that she trusts me to share in her journey. What a privilege to share in someone’s pain and joy.

Thank you my dear Natalie. You are my teacher.

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The Real Talent

Some of you that know our family might remember when Frankie was 6 years old in kindergarten. It was his big year. He wrote a story called “The Kite and the Snowflake” and won third place in the Reading Rainbow contest out of 700 entries. (He clearly should have gotten first, of course!) It was an amazingly thoughtful and poignant story. The principal made it into an actual book and held a school-wide assembly for him to read it to the student body. He got invited to the Board of Education for the same. It put him on the map. I credit his teacher for discovering it, buried in the middle of a scribbled journal.

He is now 15 and I ask him to clean out his folders once every six weeks. He puts everything in the recycling bin and then I fish it out. I keep a few things here and there for his memory boxes. I caught this poem written on the back of a sheet of paper. I confirmed he actually wrote it and he even gave me permission to post it which surprised me. Anyway, I know I have a mother’s bias (obviously) but I think he is the real writer in the family. Let me know if you agree this is pretty great. It has the hallmarks of a teenager that make you chuckle, but overall I thinks he captures a deep understanding. The assignment was to write a poem from a Jewish perspective. (Thank God I never got assignments like that when I was in school!)

Where is my God?

My fellow Jews and I stand alone.

There’s nowhere to go or no place to call home.

My friends hidden behind ash.

Here I stand with no cash.

We are torn down by being beaten or blasted.

Maybe Hitler thinks all Jews should be trashed.

One thing that is not really cool?

All Jews are segregated from the great German schools.

Our God seems to be unreliable.

Therefore, us Jews are considered undesirable.

My depression is growing because my God isn’t near.

I can’t numb the pain because I can’t afford beer.

One thing is for sure, my God is not found.

Life is hard without Him around.

 

Yep, I’m a proud mama.

 


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Endings

If you want to read the precursor to this story, check out “Shut Out.” The end of the story is not a good one and I wish I could say it isn’t so.

One of the days that Ed had texted and asked me to visit him and his daughters asked me not to come, I reached out to someone at Roswell that I had met who worked with “family engagement.” While I wasn’t sure what that is exactly, I wondered if my situation would fit in. I forgot that I called him, but a few days later he got back to me.

I told him that I had decided not to go to the hospital, but I said I would be interested in knowing what his opinion on the situation would have been. He went around a few times, but actually called me back later and said that the bottom line is really about the patient’s wishes being respected. While we both understood that accepting death is difficult and some families just refuse to go there, it wasn’t about that. It was about Ed. He suggested that he talk directly to him and find out what his wishes were. If he indeed wanted me to visit, then perhaps the social work department could get involved to help the family shift their thinking about how best to support their father.

I cautioned him by reminding him that the family believes they are doing the right thing for him so this would be an extremely delicate situation. It would have to be handled ever so carefully. He agreed and said he would get back to me.

He didn’t. Instead, I got a scathing text from one of the daughters that was addressed to me, and copied to the other siblings. It spoke of how disappointed she was when a social worker approached her because her dad’s counselor and called to complain that his family was keeping her from seeing him. She told the worker that I was not his counselor, etc.. She also went on to talk about my creating nonsense at a time when they are focusing on his well-being.

I was stunned. And angry. I texted them all and said that it was not true and that I had their father’s well-being in mind at all times. I told them I would like to sit down and talk with them and straighten things out because it’s much too important to text about.

I never heard from any of them again. I texted. I called. I left messages. I texted and called Ed but never got responses. I didn’t know if his phone was being monitored or if his family had told them I lied to the hospital and they all hated me.

I thought and thought about how to let him know I cared. I have several cards he’s sent me over the last few years where he called me his best friend. I would dare say I might have been his only friend. This was horrible. I decided to send a card to the hospital.

Only he wasn’t there anymore. I started looking for him in various rehabs that we had talked about as possibilities for him to go to. I peppered the search in between the calls to him and his daughters.

This weekend I found out the truth. I found his obituary. He was gone. And his wake and funeral were over as well. I reached out again to the family to ask where he was buried. No response.

To say I was devastated doesn’t really describe it. It was such a complex ball of emotions. Of course there is the loss of a very, very dear friend. There was shock that this family despised me this much that they wouldn’t even let me know about the wake. I know in my heart I absolutely did not one tiny thing wrong to deserve their hatred. Not one. And now I’m also experiencing a great deal of anger. I’ve had boatloads of loss in my life and I absolutely did not need to have a loss that was the result of a bad ending.

And then there is the anger at myself. Because I have been so depressed lately, I chose not to go to the hospital because I just didn’t have the strength it would have taken to stand up to the family and honor his wishes. If I wasn’t so depressed, I would have taken my strong patient-advocate self. But instead, a wonderful man asked me to come and he died thinking I ignored him.

I have always said beginnings and endings are crucial in life. You can’t have one without the other either. I was thinking about how sometimes people behave badly and then at the end of their life, they make peace or say they are sorry. The ending changes everything. Maybe it shouldn’t, but there has been lots of forgiveness that happens at the end. And I say hurray for that.

I realized that I assumed the reverse is true. If the ending is bad, it negates any good that happens before that. Darren reminded me that is not the case. He said the months and years before this ending, I was a good friend to Ed, and he was a good friend to me. Good enough for him to call me his best friend. The ending was only a small space in comparison. When he was lonely and sad when his wife was in the nursing home and then eventually died, that is when I was there for him. I mattered to him.

Thank you, Darren. You are so right. The reverse is absolutely not true. While the ending was sad and unfair, his daughters can’t take away the years of our friendship. All of the walks, talks, hugs, fires, and pool parties meant something. I love you, my dear friend. I am just sorry I wasn’t able to tell you one more time.


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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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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?