So let's talk the real deal about the holidays. I am taking this "Family to Family" class put on by "NAMI" the National Alliance on Mental Illness and the class is made up of over 20 people who have loved ones with some form of diagnosed or undiagnosed mental illness. We broke up into groups a couple of weeks ago based on our relationship to a mentally ill loved one. The group of parents had about six people in it. We ranged from the 70's down tot he 30's in age and consequently had children ranging from teens to 40's in age. We were asked several questions but one of them was "How does having a loved one with mental illness affect your family?" and what surprised me was the over all consensus of the group that it has torn the family apart. Half of the parents spend holidays completely alone because they can not have their mentally ill child with the rest of their family. Many siblings of the mentally ill will not visit the parents if they are care taking for their mentally ill loved one because it is just too hard to be around. What a realization of overall sadness we had for a moment.
It almost feels like somewhere we make a choice, to love our mentally ill family member at the cost of the other family and friends. Whether that is an outsider's reality or not, it seems to be the way it feels to the parent. Myself, I have one family member, from a distance without actually asking details, who has chosen her fear over what she has perceived my sons mental illness to be over her love for him and will not be around us anymore. Another family member I have wiped my hands of due to my disappointment and frustration in the lack of care, thought or empathy. I do not have time to make others okay with their self centered ideology. My own best friend has become distant to me and my family because she can not understand. Other close and dear friends have stopped calling or emailing or visiting because it is just too hard, our lives are too intense and the ups and downs are more treacherous then the roller coaster rides at the local amusement park. "Please keep your hands and arms inside the crazy for your own protection".
The truth is that unless you are in it, day to day, moment to moment, it can not be understood. It was sort of that way with autism for so many years. Nobody could believe the crazy that goes on with autism. The rage tantrums, the weird stemming, the social awkwardness and blunt statements that offend people you care about. Yes, there were countless times I had to tell my son it was not okay to tell people that their perfume "stinks" etc. The autism and it's own brand of ugly grew a level of acceptance among my family and friends though and admittedly, it wasn't for the weak at heart, but it was not shameful. Mental illness is much scarier and holds more shame and gets upgraded to f'ugly.
The crazy mania leads to impulsivity that is just weird and sometimes dangerous. The darkness that over takes a person with serious bipolar is deafening. It sucks away all light around it. The fact that these extremes can be sudden and unforeseeable are uncomfortable, scary and exhausting. Then there is the delusional thinking. I think we have all had this form of thinking in one way or another either through our own typical acute depressions or our elation during certain moments of celebration or even the crazy thoughts that can come from sleep deprivation. The thoughts are not right, out of whack with reality. Nobody knows how to handle this situation.
What if your loved one hallucinates, hears voices, sees demons or people or objects? Can you imagine the discomfort around family when all of a sudden the loved one yells out, "Whoa...what in the heck was that?!?!" and nobody else saw anything or heard anything and everybody is looking around. Or if your crazy loved one is aware enough to know that delusions and hallucinations are embarrassing and would scare away those she loved or might scare people. Sometimes, the hallucinations or voices are so scary to the mentally ill that they are afraid to talk about them to anyone, they can even come with a level of paranoia or fear of punishment if others might be told. Let's try bringing all this to Thanks Giving shall we?
But as the parent, we see it, feel it, hear it...maybe not directly but on their faces, in our discussions, as we try to lift them from their darkness or tether them during their mania. We help them battle their demons and quiet the voices. It is my child who has mental illness and it is my commitment to him that I will love him and care for him through his darkness, his delusions and no matter what his voices might tell him. It is my heart ache that so few can help me love him through it too.
I have described mental illness as if it is a cancer of the thoughts. Medications can be like chemotherapy and bring recovery but it can be an intensive toxic process. Sometimes one ravaged with cancer may end up with physical deformities or the chemo therapy may change them somehow, even hair growing back a different color or texture. When someone has cancer, people offer to help...they bring casseroles, and give rides to doctors appointments or come and sit with the ill and comfort them, read to them, pray with them. Nobody brings casseroles to autism flare ups or psychotic breaks. Nobody offers to give rides or come pray with the family. Other family members get anxious about their visits and worried if they have reached out at all or even invited the crazy to join. It isn't that I don't understand and even appreciate other's discomfort, fear, concerns. It just makes me sad.
I remember once someone was telling me a story of someone they knew who had an autistic child. They brought that child to church and the child had a neurological storm in church and began screaming and needed to be restrained and brought out of church. This person told me that it was just wrong of that family to have come to church and bothered everyone with that poor child. "How could they be so thoughtless to the rest of the congregation?". Oh how I would love to bring my son to HER church NOW!!! *a moment of self amusement as I consider the possibilities*
I am sad to know that at least 3 people who sat at my parent table in the NAMI class will be spending Thanksgiving alone. I am sad to know that those who are surrounded by darkness and demons and fear need more then ever to have their loved ones simply surround them with light and love and brave the intensity enough to be physically close and spend time with them, talk to them, share with them a space and time. That those of us who care for our loved ones feel separated, isolated by our love for crazy.
I know that my son is beautiful, autistic, crazy and intense and I am grateful that most of the time, if I take the time, I can find him through his thought cancer and his neurological storms and his darkness and I will never stop loving him. I will show it in any way I can. That is what family does for one another. That is what a mother does. That is what I do and who I am. No matter what kind of a day he is having on Thanksgiving this year, I will be with him. If we can muster up the strength, the neurological storms are calm enough and the thought cancer has not ravaged him too much that day, we will try to be with some of our extended family. And we will be grateful.
A NOTE: I am no longer tolerant of statements like "do you think he is making all of this up for attention". I have seen my son cowering in corners from his thoughts in his head. I have seen my son bleed for five days due to his efforts to try to release the pain he feels inside. I have taken him to several doctors and specialists who know WAY more then me and swear that his mental illness is real and intense and significant. In the same way that others did not see the tantrums of autism and feel the pain of restraining him when he was younger as he screamed through his neurological storms, his autism was and is real and his mental illness is just as real if not more devastating. Because you do not see it and experience it does not give you the right to doubt it. You do not need to understand it to accept it without question, you just need to have trust and faith in our process and journey. Please do not express this level of ignorance to those you meet with mental illness. It is demeaning and minimizes their reality and struggles.
A SECOND NOTE: For the statement, "I don't know what to do or how to help" prayer is wonderful, a card of thoughtfulness, an email, etc can bring light on a dark day for my son, myself and my daughter. Come visit and hang out, play a game, take a kid to a movie, bring a casserole, a cup of coffee or tea, a hug. Showing you care is priceless and invaluable. If you have a loved one with ANY form of illness, physical, mental, neurological please show you care. All of those who have donated to my son's fundraiser for his autism service dog have brought light and hope...it has been a wonderful way to show you care. I mean it when I say that no donation is too small because it ALL means that someone cares and to us that care is HUGE!!!! Thank you for all who care in whatever way you are able, prayer, donations, reaching out, coming over and helping our family, offering rides, offering hugs and so on. THANK YOU!
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