Lessons Learned... Surviving Tremendous Adversity

Dear Reader,

I need to apologize for seemingly falling off the map. Sadly, I have experienced tremendous adversity that just about consumed me. I simply needed to survive, and wasn’t in a place to write for pleasure as were the Conversations with Elena I shared with you. I so hope they were equally enjoyable and meaningful for you. 

Now my goal is to write a new column on lessons I learned during this very extended period that began 3.5 years ago, August 2021. My wonderful editor has urged me to share my experiences as they may offer inspiration. Certainly these past years have been challenging for us all.

Thank you for your patience and interest. Thank God, after being in a very deep, very long tunnel, I’ve finally returned to the light -wiser, stronger, empowered and sincerely grateful, however changed I am for it. 

With sincere thanks, 

Danielle Brahinsky 

MENTAL ILLNESS and FAMILY

When mental illness is in your family, it’s extremely difficult terrain to navigate. This is because, generally, it comes unexpectedly, in part because society, as a whole, not only has a stigma against the mentally ill, but there’s a deficit of information. The first challenge is where to look for guidance and help when the problem is mostly kept under wraps. My heart goes out the most to parents who suffer because there’s such a sense of helplessness to protect or cure their loved one.

However, as someone who has mental illness, and a child and sibling also so affected, and now parents with dementia, I can say with complete confidence, there is HOPE amidst extremely difficult adversity. What most people don’t know, for the most part, mental illness is TREATABLE. Once treated, it can then come to a point of management, always with steps back and forward, but continually in an upward trajectory of recovery over time. 

However, this column is about surviving tremendous adversity, and indeed, it’s very much a matter of survival. With my background and success in treatment, I am grateful to feel unusually empowered to help our precious Elena. In fact, there is a silver lining. She not only inspires herself, but all who know her story. She has a village of people who help and care for her, and she leads them all. She truly is our pied piper.

Elena has mild to moderate autism, and severe apraxia. Apraxia is somewhat rare, but not entirely to the world of autism, however, they are completely different illnesses. Apraxia is not having the ability to speak because the brain does not send the signal to muscles in your mouth. You may know the word and how to say it but you are unable to because your mouth won’t cooperate. Instead you need a therapist who specializes in Apraxia who painstakingly teaches the child all the sounds.. Now that I know how hard it is to acquire language, I find the fact that most people speak, to be nothing short of a miracle. Those with Apraxia do not speak until they are much older than those with other speech disorders, usually not until the ages of 9-13 years. 

I am frequently asked, “How do I deal with not being able to communicate with my beloved daughter?” I have learned to become Elena’s advocate and to accept that I am doing the best I can. I am lucky because it’s likely Elena will one day speak. She is already starting, but many parents aren’t as lucky, but still the grief is heavy at times.

So how does one survive such powerful grief, especially when it’s your child? 

•    First, Education - This is necessary for everyone. Seek help, knowledge, and support from those that understand, and work in mental health. Take classes. Actually, I now work for the National Alliance for Mental Illness, or NAMI, as a speaker for Los Angeles County, as well as being on the Board and having been on staff.

•     Be open to treatment. For example, be open to medication and seeing a psychiatrist, who is an expert in the field, accept the diagnosis and follow through on appointments. If your child or family member refuses medication, take classes on how to better communicate. And please never forget that ultimately, it is up to them to become healthy. 

•    Self-Care – Exercise; Meditation; To Do Lists; Taking classes; Joining Support Groups and much more.

•    Cultivate other dimensions in one’s life that bring joy. Have a creative outlet that is for you and you alone. My Conversations with Elena serve as an example; starting a blog; growing a garden- anything that helps one grow as a person and has nothing to do with the hardship in one’s life. 

•    It can be easy to fall into a victim mentality if one focuses on difficulty and the life-long journey, but please KNOW that actions emanating from hope and positivity are part of the solution, in fact, critical for success. 

•    Lean on people, whether it be your spouse, your parents, or your friends. If you are part of a spiritual community go there to ask for support. 

•    Bottom line, though at times things may seem dismal, KNOW you are not alone. Always, always ,always have HOPE

In closing, I have learned to accept that no matter how little one achieves,being part of the success of any progress whatsoever, is a source of inspiration and gives one a new surge of life and the ability to live another day. Whenever there has been a small win for Elena, my heart, for a moment, feels free and soars. It’s incredibly empowering knowing you are being productive and not just taking it and feeling desperate and alone. 

Be your child or your mentally ill family member’s advocate. In other words, fight. Fight like your life depends on it, because it does. When you do, and know you are responsible for the things that are going right in your child’s life, it’s a huge source of feeling good, amidst the chaos and unfairness of the things that come your way. 

We grow with our challenges and, taking that oft repeated advice, “one step at a time” really is the answer. Showing up for each challenge prepares one for what may come next. Truly, that is the way! 

I hope this was helpful. Mental illness is the thread that binds nearly every hardship I’ve had, in one way or another. So what’s my first lesson? Do not take adversity lying down, and there were those days when the bravest thing I could do was to wake up and fall back asleep. But I now KNOW that every day is a chance to build on getting stronger. Every day is a new day and the sun will shine again after every period of darkness. What a powerful lesson for me that I passionately share. I hope my story offers some inspiration. 

Thank you.. Love, Danielle