The Secret World of the Indigent

I grew up enjoying an affluent lifestyle. My dad was the owner of a popular Chicago nightclub. The house where I lived, along with two siblings and both my parents, boasted 10 large rooms with a finished basement. Summers, we vacationed at our lake house in Delavan, Wisconsin. During the school year, my parents sent us to an elite private school.

When I broke my collar bone (twice) I was rushed to ER in a cab where the situation was immediately tended to. When my sister came down with measles, the doctor came to our home to treat the condition.

Food, shelter, clothing, and medical needs were more than amply met. My world was safe. Needs and wants and greeds were at my fingertips.

Many years later, I was employed with a school district and I had insurance. When my  children came along, they were included on my medical care. Though we weren't wealthy (on a teacher's salary) we didn't lack for much.

And here I am, many years later, on the brink of retirement, caring for my adult son who is mentally ill and has been unable to work for 3 years. Thankfully, he is not on the street as so many are. Matthew lives in my home.

For three years we have applied for social security for him. I say 'we' because Matthew is unable to do this by himself. Finally we secured a lawyer to fight that ongoing situation.

Meanwhile, Matthew is with a wonderful Denton, Texas organization MHMR. I will forever be grateful and indebted to them for literally saving my son's life. Matthew is on a cocktail of ever changing meds, has a team of case workers, a full-time psychiatrist, and a nurse who comes to the house to treat him and check on him each week.

And then it happened. His anxiety rose to dangerous levels and his blood pressure went through the roof. He ended up in the ER twice. And then went back to the hospital two more times for sciatica, and experienced a very unsympathetic doctor who only handed him a list of exercises to do.

"Mom, where do I go if I have a medical need?" he asked. "I can't keep going to the ER."

Good question.

Not only am I now in the world of fighting for disability for my ill son, but he also is developing physical problems. Where to go? No insurance. I haven't money to pay out of pocket. I only knew a world of earning a paycheck for working, and paying a deductible for doctor visits.

I woke up. I had to find new ways to help my son meet his needs. Surely, my son was far from the only one with these problems. There had to be an underground network. How could I tap into that? Where should I go? Who to ask?

There is a world of people who are homeless; no shelter, a bag of questionable clothes, churches that provide lunch, but where is there help for medical needs? I had no idea.

Many suggested I ask for credit and then pay it off monthly bit by bit. When one is already financially stressed, its not really a possibility.

Last night Matthew and I went to Walgreen's to find something to help relieve tooth pain. Before we left, a friend suggested I ask the pharmacist about any charities (charities can be hard to find and they must be flooded with requests). The pharmacist suggested First Baptist Church of Denton, where I spoke last fall about one of my books. I felt right at home calling.

The church sponsors First Refuge. It's run by dentists who volunteer their time on certain days. The indigent must qualify. According to their guidelines, Matthew should qualify (fingers crossed, prayers said).

In these past months, I  learned that there is a secret world of the indigent. The people we sometimes do not notice, or care to notice, living on the fringes of society. Hungry, dirty, needing medical and perhaps psychiatric assistance.

I think back to my happy, lazy days of summer. How easy life was for me. How blessed I was.

Not everyone has had it easy. It makes me grateful for what I do have. But I need just a bit more for my son Matthew because he needs it....

just as millions of others need it; children, men, women, teens, vets. Please lets not forget.

Let's stop arguing about who is using the bathroom, what face is on our dollar, and tackle real life problems. Make a difference.. If we all pitch in, what a beautiful difference we can make. We are God's hands on earth. Let's use our hands and open our hearts.

Saturdays with Matthew and My New Normal Life

 I used to be afraid of those with mental illness. I didn't understand it.  It was spooky. Unknown. People with mental illness didn't act within the norm.

I glided through most of my life without giving it much thought until my adult son was diagnosed with Schizoeffective disorder, PTSD, anxiety disorder, and paranoid His life living skills, along with much of his personality, changed.

Neuron's in the brain can cause a lot of damage to one's perspective, and how one chooses to live life from that moment forward. It involves ongoing care with close psychiatric monitoring, an ever changing cocktail of medications, constant monitoring, and being there for someone 100%  24/7. I never knew what that really was like until my son's illness bloomed.

A new normal means setting aside your entire life, forever, to be at the whim of someones brain function. It's not only my new normal, but his new normal as well.

Many have suggested I put Matthew into a mental health community. First of all, there aren't any, unless you have millions to spend.

I want Matthew to relearn what its like to live a life as fully and as normally as possible. Part of that is education. Not just education for my son, but educating others, who like I once was, are afraid.

I will not isolate my son. If someone has cancer, we do not even consider  putting the cancer patients into a community, hiding them away. We envelope them with our love, acceptance, and make life for them as normal as we can.

I want to give you a peek into our typical Saturday.

"Matthew, I have errands to run. Want to come along?" I ask.
"Yes, let me get dressed."
Translation: I need to put on my clothes, take a handfull of pills, and sit on the backporch to gather my thoughts.

Thirty minutes later, we are in the car.
"Where are we going Mom?"
"I need to stop at Lowes. Will you be able to come inside with me today?"
"I will try."
Translation: I am really afraid of the unknown. I have to wait to see how many people are there before I decide.
We arrive at Lowes. My son swallows hard and looks around. "I will try."
"Good."
He follows me inside and gets a cart. As we walk through the household plant section, he becomes mesmirized and wants to look at each plant. I, on the other hand, am in a hurry. "Why don't I leave you here with the cart? Stay right here. I need to pick up a paint brush. Give me 5 minutes. Stay here, okay? Matthew, do you hear me? Wait here?"

But, it takes me 10 minues, not 5. I return to the succulents, exactly where I left him. Matthew and the cart are gone. My heart beats hard. Where is he?

I walk back into the main part of the store and search. Finally I see him running toward me pushing the cart in front, screaming, "Mom! Mom!"

We leave the cart and return to the car. He works at getting himself together--measuring his breaths, trying to calm his heart rate. He heard voices taunting him from the vents.  He tells me that I am his anchor and I was gone.

We go home.  I finish the errands alone. Later he says he would like to try going out again.
"How about if we go for dinner somewhere?"
He picks a place he went a lot before the illness overtook him. He feels safe there. We sit in a booth. He puts on his headphones to block out voices that arent there; they are there for him. We make it through a meal. He is fine. We return to the car triumphant.

I remember I forgot something at the grocery store. Matthew decides to wait for me in the car. He refuses to go inside. Thats okay. I never push. I get the item and a few more. We go home.

He sits on the backporch.

The sky is dark now.

He feels safe.  

Do NOT feel sorry for me. Do NOT feel sorry for my son. Instead, seek to understand the mentally ill.  Understanding is the perfect gift.

I am far from the only one who goes through this with my son. My son is far from the only one who is cursed with this. You will make us both feel less alone by understanding and acceptance.

PS Today is Sunday. We went to the grocery store again. This time Matthew ventured inside with me. He clung onto the cart as though it was his life preserver. His hoody was draped over his head in a hiding manner. An elderly lady stopped him and sweetly commented, "I love your beard young man! Its a wonderful beard!"

Matthew lit up. He smiled, and pulled off his hood so she could get a better look at his face and the foot long red beard. "Thank you very much!"
He glowed.
I cried.
We both were ecstatically happy.

I Found It! ...And Other Matters of Loss

Have you ever lost misplaced your car keys, or a pair of earrings, or important papers? What do you say when you find them? "I found it!" Or, when you find the perfect dress to wear on a special occasion. "I found it."

Have you ever felt you have lost your mind and couldn't locate it? Hold that thought for a moment.

I was hired at Ottawa Township High School in Ottawa, Illinois, straight out of college. The year was 1975 and I was now the new special education teacher with one additional class of Sophomore English in general education. I called my mom, "Guess what? I found it! A job!"
A few weeks later, I bought a car. Happily I squealed to my best friend, "I found it! A cool green Dodge."

A year later, I renewed my faith and joined the popular Jesus Movement of the time. Taking off on the idea of what was lost, is found, was the motto, "I Found New Life in Jesus", or the shortened version, "I Found It!"

I had that sign hanging on the door to my classroom. One of my sophomore students said, "I'm so glad you found your room this morning."

Fast forward 30 years of lost loves, lost opportunities, lost dreams, lost friends; I find I have gained more than any loss. In fact, most of my losses have turned out a gain for something better.

And yet, there is a great loss that is unrecooperable (I coined that word. Hope it works for you) for my son; his mental illness. It has stolen his personality, his freedom, and his future. These days we are 'recalculating' his entire life. Sometimes, he will go to the places he used to go before his nuerons began to miscommunicate. Once in a while he will feel fearless enough to go to the grocery store with me. At times, he will walk two doors down to the library. His world has shrunk. As a result mine has too.

Its been three years since  Matthew has been unable to work. Trying to live with the constant voices in his head, the creatures he now sees, and the invisible bugs he feels crawling on him, I have helped him apply for social security time and again, and again, and again. Always,  he is turned down for various reasons. The first time it was because he isn't blind. Sweet Matthew, who always thinks of others first, said, "Someone who is blind does need it more than I do." He had no idea it was just a put off response. I will spare you of all the paperwork, the social security office visits, and phone calls I have made trying to get assistance for him. Its been an impossible journey.

Nearly two years ago, we secured a lawyer. This Thursday, after waiting 3 years, we finally have a court date. Its in Dallas. My daughter knows my feelings of driving along the high five in major morning rush hour traffice. FRIGHT. This morning, Matthew and I did a dry run before the big day of April 14th. We found the place! I FOUND IT!

I bought the respectiful  navy blue dress for the court. I found it! My son has a wardrobe he will actually wear and I found it! Let's hope we can sleep between now and then.

As Matthew finds his way through this life peppered with invisible threats, and I find my way to Dallas on Thursday morning, may you find your journey in life to be an easy road so you may help others find their way.

God Bless.