Talking About Grief and Mourning

Once again I’m the first and only person writing about a topic no other mental health writer or agency has tackled before: what it’s like in bereavement for a person diagnosed with bipolar, schizophrenia, or another emotional illness.

My father has been gone over two years. An aunt died over a year ago. After my father died I started to have conversations with him. He appeared to me in dreams.

The older you get there will be different kinds of losses–of  the people you love, of friends that no longer suit you, of dreams that go unfulfilled.

As the years roll by, our accreted sorrows can engulf us even though we’re doing well and able to function. Our grief as we get older can become unbearable not just in mourning our loved ones. Our pain over not getting what we wanted in life can also consume us.

I haven’t yet had a boyfriend come into my life or a book contract for my second book.

One, just know that you are not alone.

There’s hope that you can get what you want even though it might take longer or you might have to go about it differently in your method for achieving something. It took me 13 years from start to end to publish Left of the Dial.

Two, just understand that you shouldn’t take other people’s bull crap.

They have no idea–most likely they have no compassion because they’re in this world for self-gain so don’t value kindness.

Only I understand what it’s like to have a mental illness. I identify as a person diagnosed with schizophrenia.

I’m 53, and I’ve had to survive by my wits and grit all these years in recovery. I decided long ago that I wanted to act as a cheerleader for others with mental illnesses to give them the hope, support, and encouragement that has been often lacking.

With the “everyone can recover” mentality what gets lost in the message is that even though you’re in recovery your life can still be hard.

A therapist once told me: “Your pain can be greater because you’re aware that you’re different.”

So-called normal people just don’t get it about what it’s like to live with a mental illness. They can’t possibly truly understand.

You’re left to yourself to make your way in the world. No one asks you how you’re doing. No one calls you on the telephone to brighten your day.

To add to this the feeling of grief you have over a loss can threaten to overwhelm you, to consume your waking thoughts, to settle on your chest like a weight, to make you lose hope.

Grief and its twin rejection can seem like immutable forces that will keep us on the sidelines of life.

My analogy is that there’s not a glass ceiling for us, there’s a glass wall separating us from others. We can see the outside world and want to be a part of it yet there’s a glass wall separating us from that world.

There’s a counter-intuitive solution to combat sliding into permanent despair. I can’t take credit for this strategy. It was my own mother who told me:

“Love life. That’s the only one you have. You have to live your life.”

Then my mother said:

“It’s about getting up every day and getting your job done.”

Each of us is doing the best we can with what we were given.

One some days our job will be simply to get out of bed. On other days our job might be to go to a coffeehouse and buy a hot chocolate.

I”ll end here with this:

I understand what it’s like to be in mourning. I understand what it’s like to have ongoing setbacks.

 

 

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Self-Care 101

Like I wrote in here recently you have to expect that setbacks will happen. It’s not a matter of if but when you’ll experience a setback.

As this is true it’s imperative to adapt to the changes happening in your life. You need to be flexible and open to doing things differently.

Be flexible  while you’re experiencing the setback and in an ongoing way after the setback ends.

The point is if you ask me to change as you go along in your life.

Your needs will change as you get older.

It’s also critical to remember to be kind to yourself when you’re not at full speed and are unable to do what you were ordinarily able to do.

Be kind to yourself. As long as you’re doing the best you can there’s nothing to be upset about if you’re experiencing your own kind of retrograde period.

This setback time is perfect for editing and revising, taking stock of where you’ve been, thinking about where you want to go in the coming weeks and months.

We are all human. You and I might always mourn the passing of our “glory days” like the baseball pitcher in the Bruce Springsteen song “Glory Days.”

I’m here to tell you to have no fear: the best is always yet to be.

It’s possible to emerge on the other side of the setback stronger and more confident.

None of us can predict the specifics of our future lives.

Yet by taking consistent action to move forward in the direction of our goals we can bloom.

Yes: the best is yet to be. I firmly believe this.

Refrain from agonizing over what you’ve lost or haven’t been able to do.

As long as you wake up and God gave you another day it’s possible to make positive gains.

I’ll report in the next blog entry about setting up a home gym.

Mother’s Day Message

This is a Mother’s Day greeting to every women reading this blog entry. It’s thought that all women are mothers in some way taking care of other people.

My mother turned 80 this year. I’m 53 now. In 1987 when I was 22 I was diagnosed with schizophrenia. My mother had driven me to the hospital within 24 hours of my breakdown.

This greeting goes out to every mother whose adult children and or the mental health staff have blamed them for what happened to their kids.

Ever since I decided to become a mental health Advocate in 2002 – over 15 years so far – I’ve credited my mother’s one courageous act to drive me to the hospital as the number-one reason I recovered. Recovered with an ed at the end of recover because of my mother.

I will go to my grave championing getting the right treatment right away when a person first experiences mental or emotional distress.

My mother isn’t well. For 40 years she smoked two packs a day. Though she quit when she was 61 it was too late to prevent smoking-related disability. She has emphysema because of her addiction. Today she sleeps and travels everywhere with an oxygen tank.

Though I’m the one diagnosed with schizophrenia I’ve become my mother’s caregiver. Unlike how a lot of mothers are the caregivers for their adult kids with schizophrenia.

No one at mental health organizations like NAMI talk about this reverse dynamic: how adult children are becoming caregivers for their parents. Hell NAMI isn’t even addressing the mental health needs of senior citizens living with mental health issues.

What will happen after our parents are gone and we have no one to care for us?

I’m fortunate that I’ve recovered and have always been independent. I will continue to be fit and active because of my own efforts.

Yet what will happen to people diagnosed with schizophrenia who can’t care for themselves after their parents are gone?

What will happen to our parents if we can’t care for them when we’re older?

Nobody’s talking about this. Not NAMI. Not anyone else.

Over five years ago I first wrote about geriatric psychiatry when I was the Health Guide at the HealthCentral schizophrenia website.

Back then I was a pioneer in writing about this. Today I’m still a lone wolf crying out about senior citizens with mental health issues.

We need to think about the passing of this health baton. We need to get real and start talking about the services and supports available to people with schizophrenia and other illnesses that are becoming senior citizens.

We need to talk about the reality that soon those of us who are caregivers will need someone to take care of us.

I’ll end here by sending every women reading this blog entry words of compassion, appreciation, and gratefulness for all you do.

What Goes On At Work

My goal is that more and more peers are able to obtain jobs where we can then hire other peers to come on board at our companies.

You have to be aware of something that happens in the workplace even to the best workers among us.

This scenario makes disclosure on the job tricky for me to recommend in most work environments.

Employers will hire people with disabilities for temporary or transitional employment. This covers their ass and makes them look good.

As to whether those employers will hire mental health peers for full-time positions with paid health insurance and other benefits that remains to be seen.

I had attended a small business hiring practices event. It was suggested that for mental health peers seeking employment “the door slams in their faces.”

Sometimes it’s still an Old Boys’ (or Girls’) Network. Which is why I make the case for those of us who are peers to hire other peers. Getting in the door is what’s important.

As someone who is set to publish a career guide titled You Are Not Your Diagnosis I’m interested in hearing from peers ourselves what you perceive as the reason why the door is slammed.

I would like to add new information to my career guide that can be like the key that helps peers open the doors.

I’m simply interested in hearing from peers what their experiences have been in this regard.

My experience has been that employers love to interview people with disabilities for promotions. This shows they made a good-faith effort at being receptive.

In reality the position might go to another person.

In one interview for a supervisor job I was asked this very question (I kid you not): What single event in your life has made you who you are today?”

OK–I flubbed everything I said in the interview and didn’t get the position. It wasn’t a great interview so I understand not being chosen.

Years later I interviewed for another promotion. I was totally on and totally confident and thought I was the most qualified. Most of all because I had years of supervisor experience and that’s what the job called for.

They gave the job to someone else because they already knew they were going to choose this person. They went through the charade of interviewing other people they weren’t going to offer the job.

Folks: this happens all the time. It’s a dirty little secret.

Knowing this I think you can see that you have to be judicious in deciding whether or not to disclose your diagnosis on the job.

In the next blog entry I’m going to talk about something central to mental health peers’ success on the job: having autonomy versus having a job with narrowly defined duties and a rigid power hierarchy.

Remembering Carolyn Dobbins, PhD

Carolyn-Dobbins-1517838422

Years ago I interviewed Carolyn Dobbins, PhD when I was the Health Guide at the HealthCentral SZ website.

Recently I was fortunate to have Carolyn write a chapter for the career guidebook I expect to publish shortly.

Alas, she is no longer here. It wasn’t the SZ medication that killed her it was something else.

A bright light snuffed out too soon.

Won’t you join me in honoring her legacy? At the end of this blog entry I link to another testimony to her life.

Obituary for Carolyn J. Dobbins

Dobbins, Carolyn J., of Knoxville, passed away on Thursday, February 1, 2018. Born in Memphis, TN on March 1, 1960, Carolyn grew up in Memphis and Denver, CO. An avid alpine skier, she graduated from high school at Stratton Mountain Academy in Stratton, VT and was on the Junior Olympics Ski team during this period. She graduated from Vanderbilt with a Masters of Science in Clinical Psychology and a PhD in Clinical/Community/Counseling Psychology. She served as Director of Larry Simmering Recovery Center in Branson, MO for over 12 years. She was also in a private practice there for a number of years. She published several professional papers and wrote a book, “What a Life Can Be”. Carolyn enjoyed many activities including alpine and cross-country skiing, tennis, swimming, and family camping trips. In 2009, Carolyn moved to Knoxville to be with her parents, Dr. and Mrs. William Dobbins. She is survived by her parents, a sister, Dr. Connie Lehman of Boston, and two nephews, Grace and Sam Lehman. Carolyn’s heart went out to the forgotten and less fortunate people and she worked to make this world a more compassionate place for all. She will be remembered by her kindness, her faith, and her beautiful smile.

Talking About Treatment Choice

In my Google Alerts yesterday I received a link to a revolutionary article posted on The Sun website. Now I don’t know the politics of The Sun, yet you can bet I’m more than willing to link to the article that appeared in my inbox.

I stopped taking SZ medication in 1992 under a doctor’s supervision. Yet even though I had a mild form I relapsed within 3 months and had to go back on the Stelazine. It’s why I choose to take a maintenance dose of Geodon every day.

It’s why I’m going to link at the end of this blog entry to an article in The Sun online.

My ancestors arrived here in the 1890s from Italy. Yes, mental health issues have run in my family since the 1890s–no kidding, this is a fact.

The quote is: “Genetics is the gun. Environment pulls the trigger.”

We each of us deserve better than to be told we’re wrong for choosing how we want to live. This choice might include taking medication for those of us who need it. We each of us have the right to choose recovery in whatever form our recovery takes.

Here’s the link to the revolutionary article in The Sun:

Neurotypicals Need to Cool It with the Advice

Women with SZ and Menopause

I find myself drawn to wanting to write about health topics.

Yet again I’m going to be the first person to write about a hot topic in recovery.

NAMI isn’t doing this and neither is MHA.

No one except me has dared to focus in detail on SZ and recovery at mid life. We need to have this conversation now.

For women, you’ve hit menopause when you’ve gone 12 months without your monthly period. As you approach 50, your primary care doctor can test your hormone levels.

Reading the book Menopause Confidential: A Doctor Reveals the Secrets to Thriving through Mid Life by Tamara Allmen, M.D. might be helpful.

It’s a short book yet has vital information. You can also read Body-for-Life for Women by Pamela Peeke, M.D.

Women as we age gain fat in our abdomens–the dreaded “menopot” according to Peeke.

Her book talks about the 4 stages of a woman’s life and how to cope with the changes we experience in each stage.

It’s possible to not have it so hard when you’re in menopause. Taking 400 mg of Vitamin E is thought to help with hot flashes. You can ask your mother what kinds of symptoms  she had at menopause if you’re able.

The average age of getting menopause for American women is 51. I’m 52, and I have 2 months to go. So far, I’ve had no hot flashes, I’ve been the same weight (because I strength train), and I still have a photographic memory and no fuzzy thinking.

It’s a joy not getting your monthly period.

Yet if you’re having sex, make the guy wear a condom and get tested for HIV/AIDS. People diagnosed with SZ have a higher risk for HIV/AIDS, according to research I reported on when I was the Health Guide at the HealthCentral SZ website.

A More magazine news article years ago reported that a significant number of women over 40 develop HIV/AIDS. If I remember right the statistic was 1 in 4 women over 40. They’re not having a guy use condoms, and they’re at higher risk.

I’ll end here with what I think makes sense:

If you have to take SZ medication, or thyroid pills, or whatever you have to take, do this to have a better life at 40 and beyond. You shouldn’t have to be in any more mental, physical, or emotional pain than is absolutely necessary.

A therapist told me years ago: “Suffering for the sake of suffering is bullshit.”

In coming blog entries I’ll feature a guest blogger–a guy who’s a peer in his fifties–to talk about mid life from a male perspective.

I’ll report more about the female view of mid life in the coming months.