- Posted May 4, 2014 by
This iReport is part of an assignment:
Going public with mental illness
She is Nancy a person and not a diagnosis.
Have you ever walked by someone and felt envious of their life? Have you ever thought in your head, she must have a great life or look at a family and think they have it all? You might be right, but on the other hand, you also don't know what their inner struggle might be. Mental illness doesn't have a face or a name and it comes in all shapes and sizes. From the outside, there is no difference and truthfully, from the inside there isn't either. No matter who we are, we all have personal struggles that we battle. Mental illness is no different. It is a brain disorder, and should be treated the same as any other diagnosis.
In many ways when you looked at my family growing up, it was true, we did "have it all." That didn't mean there weren't struggles, there were many, especially when we were all faced with the stigma surrounding mental illness. We were a family of six that kept to ourselves although many of us excelled in academics, sports and had active social lives. Beneath that though was a woman's plight to have a great life despite her diagnosis, and it is a story of hope, courage and dignity.
Growing up, I knew my mom had a mental illness. I knew what mental illness was, and I didn't know that anyone thought of it as anything different than any other illness. I celebrated my 5th birthday on the lawn of a psychiatric hospital during visiting hours and truthfully, it was one of the best days of my life. I had really missed my mom, she had been gone for awhile that time, so getting to see her was the best present. Even then, I remember her determination to get better. She would say, "I am going to get better and be home." She was right too and with hard work and committment to recovery, that stay was the last time she was hospitalized, and then she was free of major episodes for the next twenty years of her life. She lived a great life with her kids and family and fought to reduce stigma the entire time. You see, my mom was a true survivor and her story can provide hope for each person that has been diagnosed with a mental illness and feels hopeless and lost. She is proof that mental illness is maneageable and that you can live a full life. It may have some bumps in the road along the way, but what life doesn't?
Growing up, she excelled in school and was the Valedictorian of Rockland High School in Maine. She continued on to earn her teaching degree and met my dad when she was teaching and he was going to Graduate School at Boston College. They married and moved to Michigan, where my father was from and she had her first child, my sister. During the first year of my sister's life, my mom started to show symptoms of a mental illness. She had her first hospitalization and was diagnosed with Schizophrenia, which was the same diagnosis her mother had. Over the course of the next several years, she had episodes on occasion and would have to go to the hospital. The main issue was she was inconsistent with taking her medication. When the symptoms diminished from the medication and she started to feel better, she stopped taking her medication, which would end up resulting in her symptoms becoming front and center again. The last time she was hospitalized, she told me she realized that she needed the medication in order to care for her family on a regular basis. Once she finally accepted her diagnosis and took her medication as prescribed, she was able to raise her four children and live a life that was balanced and happy.
My mom was a silent hero who did not let her diagnosis stop her life. That isn't to say there wasn't times of suffering, just like any illness. People with diabetes have setbacks too. During an episode that resulted in long term hospitalization when I was little, things were rough. Prior to her hospitalization, she had noticeable symptoms and people who my mom thought were her closest friends, abandoned her. Some of my friends stopped being friends with me because their parents made them. It was not an easy time, as the stigma of the diagnosis scared people, due to the way mental illness is portrayed in social media. My mom fought through it, she made a comeback and taught us how to hold our head high and live life with grace. Once she found a medication that worked for her and accepted the fact that she needed to take a pill to help her live each day, her life became stable. I hated it when people whispered and stared at us. I used to beg her to not make us go to church at the same place because a lot of people stopped talking to us after she got sick. My mom told me, "You never let someone take your faith. They can look down on us all they want and we will walk right by them with our heads held high and we will show them that they did not win. We will show them our strength and we will forgive them for their unkind treatment." My mom stayed a member of that church her entire life and showed them by example her strength and courage. She also taught them that mental illness does not mean you are any different than others who have a health diagnosis and she won their hearts over. She was a warrior who battled her illness and the stigma surrounding it.
For the next 20 years she lived her life in the fullest. She raised her children, went to church, taught us how to play piano, helped with her grandchild and lived a fulfilling life. On occasion she had a symptom or two and needed her medication tweaked or she would need to take rest extra. She had to take care of herself in order to care for us. She eventually gave up teaching, but mostly that was because she was raising four kids, which was a job in itself. My mom did her treatment that she needed to in order to maintain her diagnosis. She took her medication daily and never skipped a dose. She went to therapy every other week and she saw her Psychiatrist monthly. She also had her faith and she journaled at least once per day, often more. She always told us that if we were feeling down or stressed out, we needed to have things in our life that would provide an outlet and give us strength.
Early on, we were told to hide her diagnosis since she and our family had been shunned and treated poorly. As years went on though she realized she needed to stop hiding her diagnosis and she became a living example of recovery being possible. She told me that she wanted the world to know that her diagnosis is not a life ender, it is a life changer, and that a good life is possible. She taught us to live for others and showed us how to not live for ourselves. She would give her last dollar to help someone and was the most selfless person around.
This isn't to say there weren't dark times within the years, the stigma she was faced with was fierce at times. People made fun of mental illness and still do. That is why it is important to put stories out there that show that mental illness is not something to be afraid of, it is a diagnosis that requires strict treatment as do many other illnesses. I remember going to the mall with my mom one time when I was in my teens and she saw a shirt on someone that said, "the voices in my head told me to do it." My mom cried on the spot. She told me that those shirts were cruel and that they do not sell shirts that make fun of cancer or diabetes so why do they make fun of mental illness? I didn't have the answers for my mom but I did tell her we can try to change it. We wrote letters to the manufacturers of those shirts and discussed how terrible it made my mom feel that they were making fun of her illness. We talked about how the shirts only increased the stigma that we were trying to change. She continued to hold her head high though despite the stigma built around her diagnosis. I told her that she needed to let people know she had Schizophrenia so then people could see it can affect anyone. It doesn't discriminate.
Mental illness is often only portrayed in the media when a tragedy strikes and then it is discussed in the media sometimes if people with mental illness can have children. If someone is in an active episode of a severe mental illness, they will need additional support in their life to assist until their symptoms diminish but let's keep this in perspective, they would need the same support if they were going through cancer treatment. My mom raised her four kids, who went on to all be successful in their careers and I think her diagnosis shaped us to be caring people who help those less fortunate. My sister is an Occupational Therapist, my brother is a Lawyer and my little sister is a Psychologist and Author. She has opened two counseling centers in Florida called Reflections Counseling Center and they are in honor of our mother. She provides services to people based on need and helps reduce stigma of mental illness. It gives people the support needed to fight through their diagnosis and educates them on the diagnosis and teaches them how to live life to their fullest. She has a book called RELATE that is a marriage workbook that helps reduce stress in marriage. This book was based off of what my parents taught us. As for myself, I switched careers from a teacher to a social worker when my mom became sick again. As an adult watching my mother go through the system, I recognized the need for advocacy for those that couldn't find their voice.
During this time, my mom suffered from a stroke that complicated her Schizophrenia and twenty years after her last hospitalization, she was hospitalized again over the next few years. This time, her symptoms were stroke based, which caused many complications with the medication effectiveness. We tried ECT also and eventually found a medication that gave her quality of life. She needed 24 hour care due to her stroke, which my dad provided once he retired from teaching. He told us that our mother had given him 99% of herself their entire marriage and even if she could only give him 1% for the rest of their time together, he would care for her and we are still grateful to him for this. At this time, I was the Director of an Outpatient Mental Health Facility and it had a program that my mom could attend everyday. It was a program that held classes for people who are diagnosed with a mental illness and my dad volunteered there, helping her and others. Even in the end stages of her life, she continued to fight stigma and show people that recovery is possible and that people with a mental illness need to be treated as a part of society, regardless of what stage of recovery they are in. She loved her life and provided support and encouragement to others who were diagnosed with a mental illness. She drew pictures, sang songs and spread her joy to others. My mom was loved by many at church, at her program, at her piano lessons and by our friends and family.She made others around her happy and never stopped giving people hope. She did not let her mental illness, even when her symptoms were front and center stop her life or define her. She showed others that your life is not over once you get a diagnosis and in fact, it can be just as joyful as anyone else. She showed that it can affect anyone no matter their age, sex or ethnicity. She attended several groups and shared her story. When she couldn't talk she sang a song, shared a bible verse or drew a picture. She played the piano for hours a day and loved to play jeopardy with my dad and spend as much time as possible with him, her soul-mate.
She celebrated her 70th birthday in November of 2012, with all of her children and grandchildren, who had all made the trip home to celebrate her life.She was filled with joy and happiness with everyone that loved her around her. She died tragically by choking on December 28th, 2012. When she passed, I was 8 months pregnant with major complications and stress at work and truthfully I felt sorry for myself that she died, that I lost the most selfless person I had ever met. Then I remembered that the she left behind a legacy as a survivor of a diagnosis that needs people to fight to reduce the stigma against it. If you feel lost and alone, know that Nancy survived and so can you. She fought through and so can you, but that is not to say it won't take work. You have to make a committment to yourself to get better and live the life you dreamed of and you need to surround yourself with people who believe in you, as my mom believed in others.
Below are some key tips to remember when fighting through your diagnosis.
Tip #1: Do not be hard on yourself. Give yourself credit. Set reasonable goals to meet and once those are reached, set new goals.
Tip #2: Find a Doctor you trust. Let them do the prescribing, take your medication as prescribed and have good communication on your side effects, if it is working and how you feel on the medication. Do not just say, "I'm ok." Tell them how you really are so they can find a medication regimen that works for you.
Tip #3: Have an advocate/support person: Have someone in your life that will fight for you, in the event that you can't fight for yourself. If you do not have someone in your life who will do this, ask for an advocate during your treatment.
Tip#4: Do your treatment: own your diagnosis, don't let it own you. Find a therapist, case manager, psychiatrist, peer support, and other supports that will encourage, educate and teach you how to live life successfully with your diagnosis.
Tip#5: Learn your triggers, recognize them and become aware of them and of symptoms you might experience so you can get the proper care needed immediately.
Regardless of your diagnosis, these tips are beneficial and key to your recovery. My mom fought through the battle and made great strides until the day she died in reducing stigma, join her fight and remember, even when you feel hopeless and lost, there is help out there and people willing to be your voice until you can be your own voice again. This story is of a person's life who received a diagnosis at a young age, that society often backs away from, unless they are talking about a tragic event that took place. It is rare to see the side of mental illness in which people live full, successful lives and by sharing the journey of a diagnosis, I hope that it is able to instill hope in others to not give up the fight.