by Frances Edstrom, columnist
I love being retired! I get to see my kids and grandkids. I get to play bridge with my friends. I get to go on trips, short and long. I get to go to dinner with friends and not worry about work in the morning, and have long lunches in the middle of the day.
I also get to wonder what I’m contributing to the world.
One day, after a few years of retirement, I was having lunch with my friend Paula Krage, and she mentioned that HCO, where she is a director, may be looking for someone to help out in the front office. “Hey,” I said, “I could do that!”
Next thing I knew, I was being interviewed by HR and Becky Wolfe, the administrative coordinator, who were explaining what the job would entail. In short order, I was hired. Part of my job is to answer phones, greet people, do some bookwork, and generally help out Rose Cyert, the fulltime receptionist. The other part of the job is to interview HCO staff and individuals we serve for little articles in the newsletter. (That’s my favorite part of the job! Don’t tell Rose.)
Why HCO? I have an answer for that.
When I was 13 years old, living with my family in Massachusetts, my baby brother was born. It was a difficult birth. When I went to visit my mother in the hospital, clutching a couple daisies, I ran into one of the nurses in the hallway. “I’m sorry about your baby brother,” she said. I was speechless. I wondered if he had died, and walked into my mother’s room with dread.
No, my brother didn’t die, but he had many problems. He had epilepsy, hearing loss, speech problems, and learning disabilities. It’s not like today, when the health professionals can tell these things nearly right away. My parents brought my brother home, and little by little, taking him to doctor after doctor, submitting him to test after test, discovered the many ways my brother was challenged.
My mother and father set high goals for Michael. He went to the regular school until he couldn’t keep up. Back then, kids with learning disabilities went to a different school from the rest of the kids, so Michael transferred there. He went to special speech therapy that my parents paid extra for, and they were not wealthy people. My father was a teacher, and there were six kids.
I left for college when Michael was four years old, so missed much of his struggles growing up. But I was close to my family, and was kept abreast of his progress. He was keeper of the guest book at my wedding, and charmed all the guests. Even though he had trouble speaking clearly, he loved to talk to people, a trait that lasted almost his whole life.
He went to technical school and graduated; however, he was clumsy with his hands, so couldn’t work very successfully in a trade. Undaunted, my father found jobs for him. Michael’s favorite was bagging groceries and helping people take the carts to their cars, and then collecting the carts. My father drove Michael to his job and picked him up. He smoothed over any problems with superiors, and he and my mother constantly coached Michael at home on proper conduct at work.
My father had the idea that Michael could get a driver’s license, which made me shudder. But he passed the test and became a driver. He bought a used, small pick-up truck with his earnings from the grocery store. In hindsight, it was probably not a great idea, but it made Michael feel like he belonged.
Michael craved company. He loved to go to Dunkin’ Donuts for coffee — and to chat up the other customers (especially any pretty waitresses). When he was old enough, he started to go to bars, where he drank coffee or soda, because his epilepsy medication would not allow him to drink alcohol. He would come to spend a week or so with us in Minnesota, and after his visits, for weeks people would say to me, “Hey! I met your brother …”
He had a hard time discerning whether people were genuinely interested in him, or just wanted to use him. Soon he became known around town as an easy mark. Unscrupulous people would send him in to convenience stores with a stolen paycheck, telling Michael that they couldn’t go in because their ex-girlfriend worked there, or some other lie.
Michael would get caught, the police would be called, and soon my father was picking him up at the police station.
My father and mother both began to have health problems, which severely limited their ability to monitor Michael’s comings and goings. Michael moved to an apartment complex for people with disabilities. He was quite proud of his ability to live on his own, but the situation created its own problems.
After my father died, my mother didn’t have the stamina to continue shepherding Michael to his job, and he eventually was fired because a woman he had met showed up at the store where he was working, and told him she needed a ride to her drug counselor appointment. Michael wanted to be a hero and help her “kick the habit,” so he walked off his job in the middle of the day and drove her to a city 40 miles away. A cynic might say it was not really a counseling appointment, but rather that she had found an easy mark.
No amount of talking could convince Michael that a good-paying job was more important than what he considered a mission of mercy, what the rest of the family saw as nothing more than Michael being used.
He was never a good driver, and managed to total two cars before the family (and probably the police) said, “No more driving!”
So, he walked everywhere. Everywhere. He got into less trouble because he didn’t have a car for people to commandeer. He began to have health problems, most because of his lifestyle. His personal hygiene wasn’t the greatest. He had to have ear surgery and lost the hearing completely in that ear. He was a heavy smoker, and was soon having problems related to that.
He did go to a doctor. He loved ambulance rides, and would call 911 for silly reasons. One doctor he saw did a chest X-ray, and told him he had spots on his lung. We didn’t find this out until years later, when he developed stage-four lung cancer. He then told us about the doctor visit.
“What did the doctor say about the spots on your lung?” we asked. “He said to keep an eye on them,” Michael replied. What kind of doctor does that without scheduling follow-up appointments? Michael didn’t really know what was meant by “keeping an eye on them.”
By the time the family discovered his lung cancer, it had metastasized to his brain. He had brain surgery that did nothing but deprive him of his ability to speak, devastating to him. My mother died, and Michael moved out of his apartment and into the home of one of my sisters. As his health worsened, my two other sisters who lived in Massachusetts drove from their homes to take care of him during the day.
Finally, it became so bad that they were all living there practically full time, and hospice was called in.
He died at age 42, not able to speak, in terrible pain, still nearly bald from the brain surgery.
When I discovered HCO in Winona, I wished dearly that there had been an organization like that for Michael. I sincerely believe that not only would he have lived longer, but that perhaps without the strain of trying to raise Michael without professional help, my parents would have lived longer.
HCO would have provided Michael with a safe place to live, with people he could socialize with who wouldn’t be plotting to take advantage of him. HCO would have made sure he had gotten quality health care, and that he understood what health care providers meant when they gave him instructions. They would have made sure that he was attentive to personal hygiene. He would have had good nutrition. He would have had a job where he was valued, and where they understood his capabilities and limitations. He may have met a good woman and gotten married, a thing he yearned for.
If Michael had had HCO in his life, he and his family, including me, would have been much happier and fulfilled, safe in the knowledge that Michael was getting the best care possible from the best caring people I have ever met.