Power in Voicing Lived Experience

A Family’s Struggle with Substance Use Disorder and Loss

They were your typical upper-middle class, clean-cut teens and young adults. They excelled at school, getting good grades. They were star athletes on the soccer field and wrestling mat. “If you looked at my sons or if you knew them, you would have no idea what they were dealing with or what their struggles were,” shared Dr. Bonnie Milas. At the ages of 27 and 31 and just 18 months apart, Dr. Milas and her family lost two sons to accidental overdoses.

Stressors, societal influencers and just being teenagers were the start of her sons’ substance use. “After their first experience taking prescription pills recreationally, their brains craved more and they could not stop,” said Dr. Milas. Although each son’s use started during different points in their lives, ultimately I watched my sons’ lives unravel.”

“Having someone in your family who is affected by substance use disorder is all encompassing,” shared Dr. Milas. “A lot of what my family went through was trying to find treatment options for my sons, such as medication, therapists and treatment facilities. It took a great deal of time and energy for us to find a good fit for whatever it was that my sons were dealing with at that time. It also required us as a family to work as a unit, to monitor them and to keep a close, watchful eye – making sure that it was a safe environment and providing emotional support.”

It can be difficult in the beginning to detect if someone is struggling with substance use disease. Most, if not all, addiction starts in secrecy. For Dr. Milas’ family, it was not readily apparent early on. Her sons did not come to her or their father with their struggles. “It would have been nice if even one of my boys came to us about their addiction,” commented Dr. Milas. “I don’t think my boys thought their drug use would turn into a problem.” By watching her sons’ habits, behaviors and after finding things in their rooms, she realized that there was a problem. “There are certain red flags that the school systems or authorities teach that are associated with substance abuse, such as the slipping of grades, change in appearance or hanging out with a different friend group,” explained Dr. Milas. “My boys did not exhibit any of those red flags.”

When their use transitioned to intravenous drugs, Dr. Milas and her husband started to see the subtle warning signs and took action. “My sons experienced ‘dipping out’ where they would nod off while they were standing up or eating dinner,” explained Dr. Milas. “Often, they would make excuses that they were tired from staying up late the night before. They would ask for a stool softener because they were constipated, which is not normal behavior unless something is medically wrong. We would find small, odd shaped orange caps that belonged to syringes, small wax paper bags and tiny elastic bands in the waste can or on the floor. All of these are associated with heroin use.”

Dr. Milas had to revive her youngest son twice after accidental overdoses only 48 hours after he was discharged from a treatment facility. “I found him on the kitchen floor,” shared Dr. Milas. “His lips were blue and I yelled for my father-in-law to call authorities as I grabbed the naloxone [medication to revive him]. The following day, I noticed that his shower water was running too long. I went upstairs and was unable to open the door, his body was blocking the entrance. My father-in-law and I were able to remove the door hinges and revive my son, again, with rescue breathing and naloxone. I have saved hundreds of patients because of my profession and yet there I was at the risk of losing my most precious patient of all – my son. No one should have to go through that.”

Making a Difference
Dr. Milas is a cardiac anesthesiologist at the University of Pennsylvania Health System. She cares for patients in the operating room and intensive care unit during and after heart surgery, providing a safe environment, helping them breathe and placing then on a ventilator. She also routinely administers large doses of intravenous pharmaceutical fentanyl daily.

While her specialty hasn’t changed after the death of her sons, it has changed the manner in which she addresses patients. There are different screening tools that are used in clinical practice to get a patient to understand their substance use patterns. Dr. Milas prefers the ‘use conversation’ with her patients. “In the operating room while preparing for heart surgery, my patients and I have the ‘use conversation,’” explained Dr. Milas. “I ask them what they use to relax – medications or alcohol. I ask what pain medications they use or if they use drugs recreationally.” Dr. Milas asks all of her patients these questions; she doesn’t discriminate. The conversations can be quite revealing. “Frequently, my patients will tell me things they have never shared before about their substance usage,” explained Dr. Milas. “I am a sensitive listener, passing no judgment, and I am also a link to services.” She connects her patients to recovery experts, specialists and psychiatrists while they are in the hospital recovering from heart surgery.

“My experience has opened my eyes to how common this issue is and has changed my perspective,” explained Dr. Milas. It has led to increasing her involvement with the American Society of Anesthesiologists (ASA). “I proposed to my fellow ASA members that we, as a group who delivers opioids on a regular basis, should be educating families on how they can be prepared in the event of an accidental overdose,” shared Dr. Milas.

Dr. Milas is spearheading a campaign, REVIVEme.com, to help people recognize, respond and revive someone who is experiencing an overdose. “My family was fortunate to have the training needed to revive my sons, but I often think about someone without that training,” explained Dr. Milas. “Reviving someone is very frightening and puts the rescuer in a dangerous situation. Rescue breathing is a missing piece of education that is often not talked about.”

Coping with the Loss of Loved Ones
“Anyone who has lost a loved one to drug overdose initially experiences shock,” shared Dr. Milas. “Shock in the sense that, yes, you knew of their struggles and you always knew it was a possibility, but when it happens it is surreal. They are there talking to you one moment and now they are gone. They are never coming home and you will never get to see them again in the physical sense. It is profoundly sad. Overtime that sadness improves and gets better, but that sense of loss is always with you. It is a matter of acceptance.”

Dr. Milas copes with the loss of her sons by speaking publicly about her family’s experience in an effort to help others know they are not alone. She has written opinion pieces for USA Today and the Philadelphia Inquirer. She also speaks to professional societies so they can have a better perspective of a family dealing with addiction.

“I work with patients who are critically ill and suffering,” shared Dr. Milas. “Pain is part of the human experience and seeing that on a daily basis helps to keep me grounded. Whatever pain I’ve been through, many people are going through that same type of pain. Through my work, I can help others.”

Finding Hope
Dr. Milas’ sons have been gone three and four years, yet their family had been dealing with substance use since 2009. “At the time no one was talking about the opioid epidemic,” explained Dr. Milas. “We did not feel comfortable as a family sharing that with anyone. No one knew outside of our household what was going on.”

“Today, there is less of a stigma associated with opioid use, but there is still a significant stigma,” said Dr. Milas. “For us, back then, it was powerfully isolating. We all have unique stories, but we are not alone.”

“The most important thing for those who are grieving is to take action. Everyone has a powerful voice. By sharing and talking publicly they offer the power to overcome that sense of grief. Everyone has valuable, lived experiences that should be shared. I encourage people to lean in and talk about their experiences, whether it is in an elevator or grocery store. Simply telling someone that you have an understanding or offering advice about treatment, allows others to open up and know that they are not alone.”

On August 31, the Pathways Center will be observing International Overdose Awareness Day through a commemorative event. It is a day to acknowledge the grief felt by families and friends remembering those who have died from a drug overdose and serves to reduce the stigma of a drug-related death. The event will feature keynote speaker Dr. Bonnie Milas. For more information or to register, CLICK HERE.