Hope you have a good weekend everybody!
Hope you have a good weekend everybody!
Cathie Curtis writes, “My daughter finally succumbed to her personal struggle with mental illness and took her life four months ago at age 26. As parents we cannot let go of our children and need to find comfort in knowing that their lives will forever matter.” Cathie shares a few of Ashley’s reflections written shortly before she passed:
I entered college severely anorexic. I wasn’t really alive. But I also was so eager to learn. In high school I loved Hemingway, Steinbeck, and Sartre. I’ve always been a high achiever.
Frequently, I wonder what I’d be achieving if I wasn’t ridden with this illness. Eventually, I overcame it. I had three research assistantships. For my MA, I received a full tuition scholarship. I was presenting at national conferences. But there were dark days. Tomorrow is the anniversary of my first sexual assault. I tried to scrub myself clean with no avail. I went to my professor’s office the next day and cried. But I had so much support. It’s a feeling that I can’t describe.
I moved halfway across the country for a doctoral degree. From day one, I was physically ill. I have never seen as many emergency rooms and hospital beds in the entirety of my life. I had a subdural hematoma. My brain was bleeding. I had severe withdrawals that compromised my health. I’ve had three spontaneous seizures. But I went above and beyond to prioritize my education.
However, my institution didn’t see it that way. They ignored the fact that every research assistant under a specific professor is problematic. I lost it all during the time that I was gaining control of my life. It’s messy and not logistical by any means.
I am here because I respect and value my co-chairs and dissertation committee. I respect and value Northwestern for my acceptance. Last night, I realized that both of my professors had already submitted letters of recommendation and I almost cried. I emailed them my sentiments. These are the things that keep me going in academia when I feel like everything is falling apart. These educators are incredible to say the least.
I value education. Perhaps I’m a bit compulsive in nature. But I am ALIVE. I look at that picture of a girl on her high school graduation day that could hardly fake a smile. Sometimes, I still do that because I know that my ambitions have not exceeded my talents and I will exhibit that explicitly.
I conquered something that almost killed me and lost everything I worked for.
But there are still sunflowers. And I still open my blinds to let the sun in. Yes, it’s degrading. But I force a smile and remember that I have always given 100%, and that helps me sleep at night.
Growth is painful. Change is painful. But nothing is as painful as staying stuck where you do not belong. I grew amidst a time when I was losing everything I worked for. And no, it is not okay.
I cried because it does things to you to always come second.
More from Ashley that her mother, Cathie, recently found on her cellphone:
I seldom use this platform anymore so it’s all the more difficult to be vulnerable, but I’ve discovered this wonderful organization called “Project I Define Me.” If you know me, you know that I’m committed to destigmatization and promoting awareness surrounding mental health. Recently, I have overcome some of the most difficult things in my life and I’m proud to be where I am today. I want to empower and inspire others to do the same. Person-first language is so important and during this ongoing journey I’ve really learned how grossly misunderstood mental health is. I am more than a label or a diagnosis — I am a daughter, friend, sister, girlfriend, and PhD student. I am Ashley, and I’m here to tell you that I define me.
Earlier in the week, Jerri Clark’s 23 year-old son killed himself. On March 28, Jerri wrote:
Today, extended family of our beloved Calvin Clark arrive in Vancouver, WA, to celebrate his brief but spectacular life and to mourn with us. Deborah Wang, reporter for KUOW, released this article (below).
Deborah interviewed my husband and me as we packed up Calvin's apartment in Seattle last week. She captured some of the complex emotions that flooded us that day and that continue to surge through our systems as we process this tremendous loss and seek a path forward. My goal is not happiness but human understanding and compassion within the complexity of life. I'd like to explain this a little more.
Accepting that happiness is a momentary and fleeting aspect of life and not the "goal" leaves room for grief, struggle, and confusion. Those equally important experiences cannot be disregarded as bad, wrong or something to avoid. Families impacted by mental illness can seek comfort in accepting that happiness is not the only experience worth feeling.
My family and I are going to be with our emotions this weekend, in all of their complexities. Peace and gratitude to all who have reached out with love. Please find courage to sit with whatever you are sitting with right now and see the path lit before you. What is yours to say or do? What does that action look like? How will you make it manifest?
Anne Frank: "How wonderful it is that nobody need wait a single moment before starting to improve the world?"
Jerri Clark is the founder of MOMI - Mothers of the Mentally Ill
Read Deborah Wang’s article: Click here.
I don’t see you. You don’t see me.
Hope you have a good weekend everybody.
My book, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life, has been six years in the making. In a few days, it will become available on Amazon. The journey continues.
(page 445 in Sooner Than Tomorrow)
First, thank you to my son, Patrick. Thank you for your poetry, your Facebook posts, and your life. You’re the most courageous person I’ve ever known.
Thank you to my daughters, Megan Mace, Marisa Farnsworth, and Kerry Joiner, for reading Sooner Than Tomorrow and giving me permission to put it out there, sharing our family with the world. Your endorsements mean everything to me.
Thank you to everyone I mentioned in the telling of my story. We’re all in this thing we call “life” together.
Thank you to early readers: Ann Hedrick, Pat West Guinn, Kathy Hayes, Mary Lyn Rusmore-Villaume, Rosemary Sarka, and Irene Underwood. You gave me the cojones to believe in myself.
Thank you to the cheerleaders, those of you read my book excerpts week after week at soonerthantomorrow.com and sent me emails, text messages, cards, and letters: Joan Andersen, Tama
Bell, Chris Biswell, Judy Bracken, Madeleine Cunningham, Bev Chinello, Deborah Fabos, Anne Schmidt Francisco, Heidi Franke, Sheila Ganz, Jeanne Gore, Joyce Herrerias, Swannie Hoehn, Rose King, Nancy Krause, Joan Logue, Grace McAndrews, Jan McKim, Mary Murphy, Fran Neves, Liz Noel, Teresa Pasquini, Den Proudly, Karen Riches, Mary Sheldon, Stace Shurson, Sandy Turner, Kimberlee West, Annette Williamson, and to so many more of you who left comments, likes, and loves on Facebook. You kept me going, especially on the days when I thought, what am I doing?
Thank you to Sharon Lefkov, Kerry Joiner, and Michele Joiner for proofing my pages for spellings and typos. Thank you to my little brother, Jim Moon, for bringing my old photos back to life. Acknowledgments also to Sue Clark, my first editor, who read every page out loud with me and assured me, “Yes, this is interesting.” And to the Lincoln Library writer’s class who listened, in the beginning, when Pat was still with us.
Special hugs to Pat’s Facebook friends.
Thank you to Michele DeFilippo and Ronda Rawlins at 1106 Design for your professionalism and guidance.
And finally, thank you to all of you—those I know and don’t know—who are reading Sooner Than Tomorrow. Readers are the whole point of writing. The why in the what if.
P.S. Love to my heroes—the millions of mothers of the seriously mentally ill who fight for their children every single day.
NSSC is a nonpartisan alliance of diverse individuals and organizations who are uniting to ensure that mental illness, health, and criminal justice systems count those with SMI, SED, and their families in all federal, state, and local policy reforms. We are voices for the 10 million adults and 7 million children living with and dying too young from serious mental illness.
March 22, 2019
The Honorable Fred Upton
2183 Rayburn House Office Building
Washington, DC 20515
Dear Mr. Upton,
Our coalition is approaching you today in an effort to persuade you to introduce a bill which would clarify the cost of untreated and under treated serious mental illness (SMI) in America. We refer to this as “The Cost of Not Caring.” This bill would ask our federal, state and local governments to provide a report detailing the exact amount of monies allotted each fiscal year to address the effects of untreated serious mental illness on our society.
Our coalition is currently attempting to quantify the personal cost to our families related to caring for a loved one with a serious mental illness. Through a conjoined effort, we are calculating the cost of items such as out of pocket mental health care costs -- i.e., lost wages, psychiatric services required for caregivers and family members, homes lost to second and third mortgages to gain treatment or to pay legal fees, and 401Ks/Retirement Accounts that have been exhausted because of the need to secure help for a loved one with SMI. These are just some examples of overlooked expenses that we are personally left to deal with when we are responsible for a person with a serious mental illness who is not receiving proper care.
However, we cannot assign a dollar amount to unquantifiable costs -- such as, the marriages that have been destroyed, the family relationships that have fallen apart under the stress, the careers destroyed and jobs lost, the physical injuries or deaths of family members and others inflicted by those with SMI--and the dreams and futures of our loved ones that have been shattered when serious mental illness presents itself. These expenses we understand all too well.
We need your help to address the other expenses; the ones that are affecting our nation. We would like you to introduce a bill that would require an account of the actual total expense that untreated mental illness has on our society as a whole. This is going to be a formidable task, but one that must be accomplished. We need to determine exactly what the cost of not caring is having on our society. We hope that having an accountable system of recorded expenditures will help our government finally understand that being proactive, rather than reactive in the treatment of serious mental illnesses, not only makes more sense on a humanitarian level, but also on a financial level.
Particular areas of interest that this bill should address listed as sample costs -- at federal, state, and local level:
1. Cost of physical illnesses. Please bear in mind that 75% of persons with SMI have at least one chronic physical illness, 50% have two, and 33% have 3 or more.
2. Cost of homelessness with the focus on persons with untreated SMI, including costs to courts, police, prisons, judicial systems, and medical systems.
3. Cost of not allowing for AOT (Assisted Outpatient Treatment) to treat those who suffer from serious mental illness and anosognosia living with family, including contact with police, crisis services, and courts when we cannot get help for our loved ones. Involvement of treatment teams, in communities where those resources even exist, who continue to engage with patients are often necessary several times a week because patients are in crisis, but there is no improvement when patients are refusing medication.
4. Cost of SMI for patients who go through revolving doors--in and out of hospitals and emergency rooms because they are not treated early enough and/or not kept long enough to stabilize them.
5. Cost of criminal justice involvement among persons with SMI with and without treatment.
6. Cost of disability payments.
7. Cost of lost income.
8. Cost to family members who bear much of the emotional and financial burden of these illnesses.
9. Cost of healthcare for co-morbid conditions such as substance use disorders (SUD’s).
10. Cost of the loss of productivity due to premature death or those with SMI who are institutionalized, incarcerated, or homeless.
We look forward to hearing from you and hope that you will accept this challenge. The time for us to quantify these costs is now so we can have a discussion, to detail its finer points, and move forward with a strategic plan that includes accountability for “The Cost of Not Caring.”
National Shattering Silence Coalition
Full disclosure: Dede Ranahan is member of the NSSC Steering Committee.
Click on the link below to see Sherri’s video of what her son’s apartment looks like when she checks in on him.
This video shows just a small piece of what fighting to keep your child, with brain disease, alive looks like.
Our Beautiful Mind was med compliant, yet the meds were not working. The VA MHICH (Mental Health Intensive Case Management) team visited every week. A nurse came to give Matt injections every two weeks. One said to me, “Your level of clean is different from another’s.” He was not her child.
We talked every day. We saw him almost every day. We cleaned every week. (The cost to hire someone to clean up bodily fluids was prohibitive.) Matt threw up “the evil,” for years, when he lived in our home and then when he lived, independently, in our community. He was isolated living with us and isolated living alone.
Today will be day 486 of 22 veterans dying by suicide each day, and Day 486 we’re thankful we still have our son. Tomorrow, Matt gets a pass. Today, he’s the best he can be due to care and treatment he’s receiving.
I’ve learned, if you’ve not lived it, you’ll never really understand the struggle. So I’m sharing our struggles, hopefully, for more understanding, more facilities, and more crisis teams. I’m not sure what more I can do, until laws are changed and people truly believe that taking care of our weakest is more cost effective than not caring.
Every day I learn a little more, and this angry mom simmers. What if Matt had received the proper care after that first psychosis? I take deep breaths and hang onto hope that younger moms never have to fight this hard, or have to worry if their child will live to see another day.
Cure schizophrenia. We have to do better and we need your help.
Hope you have a good weekend everybody!
I have been sick for three long days. Not from the flu, although it knocked me out just as much as a flu would. Not from the heartbreak of losing a relationship. I know how much that hurts, and this pain is similar, but my relationships are fine.
I have not lost anything or done anything wrong, but my brain is filled with thoughts of what a total mess I am in life.
Not one thing has happened to create this sickness. There are no obvious triggers. No problems. No diet changes or weather changes. Nothing has happened.
I have been sick for three long days from my bipolar disorder.
I did everything I could to get out of it. I used the ideas in my books. I asked for help. I changed locations. I let others know that my brain wasn't working. I got upset. I tried to be nice to myself. I did it all!
It took three days for my brain to get back on track. Three long days of frustration and pain. That is our life with this illness. I still kept going. I did the work that had to be done and put off the work that had a few days leeway. I simply had to wait it out.
It's so painful. It's so hard. It's so unfair. It is all of these things.
I can either accept it — this is my life — or give up and not do all I can to reach my goals.
I choose to accept it and keep going. My brain lies to me. It is not a reliable source — it tells me things about myself and my work that are not true.
What is your plan for when your bipolar is active and your brain is lying?
Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. She writes for Bp Magazine and was the original consultant for the Claire Danes character on Homeland. Julie lives with bipolar disorder and a psychotic disorder. Her official diagnosis is schizoaffective disorder. Her goal is to find stability in daily life. Please visit www.JulieFast.com for more information on her work.
My wonderful, heavenly angel son, Shane Watkins (39), was shot by Lawrence County Deputy Steven Moody because he thought all people with mental illness were dangerous.
My son called 911 saying I threatened to kill him and his dog. I told 911, “We have no guns in the house and please tell the cop not to kill my son.”
When the cop got out of his truck, he had his gun in his hand. I was standing in the doorway. My son was standing by my car. I begged the cop, “Please don’t kill my son.” Not even five seconds later, he shot my son three times in the chest. One bullet went into the hood of my car. Then he pointed the gun at me and threatened to kill me, too. March 19, 2015.
The police report stated that I said my son attacked me but he didn't. The police report said my son attacked the cop but he didn't. I'm still praying for justice and still waiting to get another court date. The last one was cancelled.
I just came to the cemetery to put flowers and Alabama memorabilia on Shane’s grave. Since he loved steak, I’ll eat a steak in honor of his life.
My love and prayers for all the mothers who have lost a child. Thank you for your support and for sharing your losses.