Revisiting Grief: What Mental Illness Steals

June 8, 2012 Randye Kaye

I can't complain. Really, our family usually lives in a place of gratitude these days. Ben is doing well. He actually has a job, after eight hospitalizations and ten years unemployed, and has celebrated his one-year anniversary there. He cares about school now, and made Dean's List once again at college. (Got a grade of 98 on his Final Essay on how his stasis was changed by reading Macbeth. Wow.)

Yes, we can't complain. This is miraculous, compared to where Ben could have been. Compared to where he would be, without treatment.

When asked how Ben is doing, I usually respond, "Today is a good day." I look to the sky to see if the other shoe is falling, but these days we are okay most of the time, certain that Ben is taking his meds and therefore inching forward with his life. We are grateful and relieved.

But - every so often - grief sets in, for what we have lost. For what Ben has lost. For what could have been, if schizophrenia had not become our reality.

This happened to me twice this week. I fill in as a radio personality sometimes at our local NPR radio affiliate, WSHU. This particular station is housed at Sacred Heart University in Fairfield, CT - and, as a result, I get the occasional glimpse of campus life - not a commuter college like the one Ben attends part-time, but the living-on-campus life.

As I drive in to work this week, I see beautiful, cheerful, smiling students waving all visitors onto campus. Signs: "Welcome, Class of 2016."

Freshman Orientation! And there they are: 18-year-olds walking ahead of their excited parents, toting pillows, sleeping bags, cell phones and huge smiles.

Monday and again on Wednesday, I see those young, fully present, smiling faces. The look I miss seeing on Ben's face, so much. Bright eyes, full of hope. Energy that points outward to the world.

This is the sight that, unexpectedly, brings tears to my eyes. Especially the Sacred Heart "Ambassadors" - the experienced students, guiding the newbies to their new possibilities.

Ben's face now, once so dulled by blunt affect, is more expressive than during the worst times - but that spark is hard to bring out now, and to maintain. He shines, still, but the flame is unsteady.

Mental Illness and Young Adult Life

Ben never got to have this experience. He'd always hoped for it, mourned its loss, and still
occasionally wishes he could "go away to college." He's earning the right, certainly: almost done with enough credits for an Associate's Degree and admission to a Junior Year somewhere. And, at last, a good study/work ethic and excellent grades.

But, let's face it. He is too old to go away to college - and I doubt he'd survive the stress. Still, he wishes. Ben was robbed of most of his late teens and early twenties. He was busy developing schizophrenia, and he missed out. He is now 30 years old. Campus life has passed him by.

Yes, Ben was robbed. Robbed of the chance for a normal timetable of development for his young adult life. Sure, he is doing great. But sometimes - well, it's just not fair.

Mental Illness steals. Young adults, in particular, miss out on a normal timetable for their lives during the time most are going through predictable stages. They don't get to have experiences, and the things we learn from them, like:

  • High School

    [caption id="attachment_938" align="alignright" width="153" caption="What Schizophrenia Steals - or Stalls"]friends talking[/caption]

  • Sports Teams
  • Graduation
  • First Love
  • College Life
  • First Job and/or apartment.
  • High School and/or college friendships.

Families miss out, too. Siblings lose "big" brothers and sisters, and pass them by. I'll never forget the look on Ben's face in 2003 when his little sister went off to college. Ben was in the hospital, finally on his way to stabilization. He was well enough by that time to tell his sister how happy he was for her when she showed him pictures of the college she was going to attend. Ben had missed "family day" there, and would miss Ali's move into the dorms as well. So Ali was robbed too. And so was I.

But on this day, it wasn't until his sister left the room that Ben turned to me and said, "Mom, how come my little sister gets to go off to college before I do?"

It broke my heart. Sometimes it still does - but only for a moment. That's all I can allow.

I never go and seek out grief. But sometimes it comes to visit , unexpected and uninvited. And I have to let it visit for awhile, have a a moment in its grasp, to let off some emotional steam, before returning to a more positive state of mind. If I reject its grip, it comes back even stronger.

You have to let it have its moment; then let it go. Grief and loss are part of the mental illness picture, but so are, if we are lucky, hope and accomplishment. As I often repeat to myself, it is what it is. Acceptance is vital - but sometimes, it needs to step aside for grief. For just a moment. Because there is still so much work to do - so we can keep hoping, and moving forward.

APA Reference
Kaye, R. (2012, June 8). Revisiting Grief: What Mental Illness Steals, HealthyPlace. Retrieved on 2024, June 17 from

Author: Randye Kaye

September, 2 2012 at 5:56 am

I just discovered your blog on a day when Grief knocked my door down and took a seat. I have just made the decision to have my thirty five year old son placed in a group home setting. He has been hopitalized for three weeks, and at 66, I realize I must face the reality that I will not always be here to provide a safety net for him. After wailing for fifteen minutes over my Loss, I went to the internet and there you were...a comfort in my Grief. Blessings on you and your Dear Ones.

In reply to by Anonymous (not verified)

Randye Kaye
September, 2 2012 at 6:07 am

Hi Sheila - thanks for sharing your experience here - and it helps so much to know that my blog was of some comfort. There's a whole chapter in my book that describes the grief - and guilt - when I had to make Ben "homeless" and get him into a group home setting. No, not easy - but yes, worth it. Blessings to you too,

August, 8 2012 at 8:03 pm

Grief is at the moment where I am stuck. My daughter made it through college (just barely, but graduated). The full onset of her illness came at age 24. So now it feels we are trying to find our way back from some huge steps (no leaps) backward, into earlier development somehow. Oddly, this presents challenges to getting her help because by earlier performance "she's too high functioning". That's a bit like saying yesterday, before I broke my arm, I was a great tennis player- so by that standard, I am prepared to do well in tomorrow's match.
I can't even contemplate at the moment how this is going to turn around. She is accepting treatment, but with apparent lapses, and behavioral problems to boot. My husband (her stepdad) and I are hanging by a thread. This is not what any of us had envisioned.
I like your way of saying that you let the grief in to visit, but don't let it stay.
For me at the moment, grief is lined up with overwhelmment, and I am having a hard time shoving them aside. I guess for now, I have to let them in so they can pass. Thank you for your candor. It helps to see other people's real feelings on the topic.

In reply to by Anonymous (not verified)

Randye Kaye
August, 9 2012 at 3:11 am

and your comment, Nina, has done the same for others, helping with its candor. I love the perspective you shared in the tennis player analogy. One of the things I learned at NAMI - helpful tho also heartbreaking - is the concept of our loved ones being "frozen in time" emotionally - to a time before the illness. Thanks for writing, and commenting - and know that, at least, you and your family are not alone.

July, 3 2012 at 9:09 am

Thank you for your article. Beautifully written. I am the stepmom to the 16 year old Kari wrote of above...and today Kari and my husband took her to residential treatment, where we hope she can get back to a healthier state so she can have a happier future. I think all four (parents and stepparents) of our hearts are heavy today, yet we know that we've done what we can in the past four years (20 months of DBT, day treatment, etc.) and in the big picture, this is saving her life.
Also, I connected to your writing because as a middle school language arts teacher, I see happy-go-lucky kids in the halls and in my classroom all the time, and yes, like you wrote, it is hard not to grieve. It is also hard not to wish that she had a different life, an easier life.
We will keep fighting for her in hopes that between a combination of medicine and continued therapy she will be able to loosen the grip of schizoaffective disorder and be able to look to the future.

In reply to by Anonymous (not verified)

Randye Kaye
July, 3 2012 at 9:30 am

Hi Michelle -thank you for sharing what's going on with your family. With four loving parents like you, chances are so much better for recovery.
At the NAMI National Conference last week, the producer of a photo documentary 99 Faces Project told us that for those with mental illness recently interviewed by a UCLA Psychiatrist,"the most important factor in recovery was someone who continued to love them."
Hang in there and thanks for writing,

Kari Larson
June, 28 2012 at 4:26 pm

I was just revisiting grief the other day as we were admitting our 16-yr-old to the hospital for the fourth time since Feb. 26. I wonder if she realizes all she has lost already, and what she won't experience. I think she kind of does, but Schizoaffective has made her regress so much, it's as though she's suddenly too young to comprehend it. It breaks my heart.

In reply to by Anonymous (not verified)

Randye Kaye
June, 28 2012 at 5:09 pm

Hi Kari -Yes. I know. Someday, with your love, I hope she will be able to move forward to what can be even though it means letting go of the past. But for the moment, the grief will take hold -no way past it except through it, sadly. Hang in there.

June, 16 2012 at 7:26 am

So many of us did not have the "normal" experience because of mental illness and just the plain job of surviving those many years of adulthood until the professionals caught up with what was really wrong with us. Thank you for being out here writing so others can see the hope

Marko Fu
June, 11 2012 at 1:15 am

Such a sad read. Hopefully, medicine will advance far enough for us to cure these illnesses.

In reply to by Anonymous (not verified)

Randye Kaye
June, 11 2012 at 12:23 pm

yes, I am all for medicines getting better and better! We need to invest time and funds on research that will keep helping our loved ones to progress, and Ben has been doing, to someone who can function (and contribute, is whatever way is possible) and even thrive in the world. The earlier the better. The potential payoff is so great.
thanks for your comment.

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