Help for Healing

Bitter & Sweet, living daily with grief


Leave a comment

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.

Advertisements


6 Comments

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.


Leave a comment

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.


3 Comments

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.


3 Comments

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?


1 Comment

Stay Tuned

To my faithful readers:

Experiencing the equivalent of a nervous breakdown. Old fashioned word, I know but it is the best description. I have my amazing people around me and we are going to lick this without a hospitalization. So stay tuned. I will have much to blog about next week, I’m sure. In the meantime, say some prayers and know we are ok.

Much Love,

Darcy


Leave a comment

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/