A Personal Experience of a TPC Community Member

My daughter had an accident and broke her ankle at her home. The day after she had surgery to repair the break, she was having some serious issues so I drove her to the emergency room. It was a warm day and while she was being taken care of, I spent some time sitting outside the emergency department (ED) on a bench. My immune system is compromised and at risk of becoming exposed to illness and so sitting inside the ED isn’t the best place for me to be. Because of my own health issues, sitting in one place is hard to do so I was walking around a grassy area of the parking lot. Suddenly, a white truck screeched to a stop in front of the ED doors. A gentleman got out and went through the doors and a few minutes later a gurney was brought out. I could not see who was being removed from the truck and did not try to; it was none of my business.

About three hours later, I was again sitting on the bench waiting for my daughter to be discharged. A gentleman came out of the ED and asked if I might have a lighter or matches. As I got in my purse, he told me he had been in the ED for several hours and was glad to be finally out of there. He went on to say he didn’t like hospitals and was glad they had finally let him go; he doesn’t like medical people. He lit the cigarette he had in his hand, thanked me and walked over to a post and leaned up against it and started talking on his phone. It is a small area that we were in so even though I was not trying to listen to his conversation, I did hear a few words here and there. He was trying to find someone to pick him up. I wondered for a split second if he was the gentlemen that the white truck brought in but then moved on with my own thoughts.

I was hoping they would let my daughter go home soon as I had been there for hours and was hurting myself the longer I waited.  You see, I live with rheumatoid arthritis, osteoarthritis, degenerative joint disease and a few other things that cause me to live with chronic pain. Sitting, standing or lying down in one place for very long is impossible for me, so I am forever searching for a position to ease the pain a little. We had been at the ED for hours, and my body was telling me it wanted and needed to go home where I could use the heating pad to help ease the additional pain I was feeling from sitting on uncomfortable chairs and benches for hours.

About 20 minutes later my daughter sent me a text message saying that she was just waiting on her release papers and they would be bringing her out. I went to the car and started it so I could cool it off for her. I then saw the nurse wheeling her out in the wheelchair so I moved the car up to the pickup spot and helped the nurse get her into the car.

At this point, I need to share that my daughter is a registered nurse (RN) and worked at this ED for years. I also want to go back to what I mentioned earlier about living with chronic pain and in case you do not know exactly what that entails please allow me to share. The National Institutes of Health (NIH) states the following; “Chronic pain is often defined as any pain lasting more than 12 weeks. Whereas acute pain is a normal sensation that alerts us to possible injury, chronic pain is very different. Chronic pain persists—often for months or even longer. Chronic pain may arise from an initial injury, such as a back sprain, or there may be an ongoing cause, such as illness. However, there may also be no clear cause. Other health problems, such as fatigue, sleep disturbance, decreased appetite, and mood changes, often accompany chronic pain. Chronic pain may limit a person’s movements, which can reduce flexibility, strength, and stamina. This difficulty in carrying out important and enjoyable activities can lead to disability and despair.”

So, in layman’s terms, chronic pain is 24/7; there is no cure. There are FDA approved prescription medications that do help to ease the pain to give those who live with chronic pain the chance to have a little bit of normalcy in their lives. It allows them to leave their homes, to work, to go grocery shopping or spend time with family and friends.

Okay, now that we all know what chronic pain is, we can go back to that day. I helped the nurse get my daughter in the car and as comfortable as we could considering she has a cast that starts at her knee and ends at her toes. She cannot put any weight on that foot so there was a lot of lifting and arranging that I needed to do to help her get in the car. I am not complaining even though I knew this would increase the pain I was already feeling; I would do it a billion times over if my daughter needed me.

I then got back in the driver’s seat and was putting my seat belt on when my daughter said to me, see that guy that is standing leaning against the pole? It was the same gentlemen who had earlier asked me for a lighter. My daughter went on to tell me he had just overdosed earlier. She went on to say Mom, that is why you cannot get your pain medications. I was stunned for a moment and said, “What? He looks fine.”

She went on to tell me that someone had brought him into the hospital in a private vehicle and as they were taking him through the hall in the ED, they were preforming CPR and administering Narcan. For those of you who do not know, Narcan is a medication that is given to reverse an opioid overdose. It saves lives.

I was frozen for what seemed to be hours but really only seconds.  I could not believe that someone could overdose and be without life signs and then just be walking around and talking like nothing had happened, like they had not just died a few hours earlier.

You see, because of those who are fighting the monster of addiction like this gentleman and because they either misuse or abuse drugs and overdose, I am being told that I should not be treated with legitimate FDA-approved pain medications for my pain because another person is grappling with the disease of addiction.

Yes, I know it makes no sense, right? After all, this person is fighting addiction at the same time that I am fighting to be able to live with less pain— two uniquely different circumstances. In fact, those who are fighting addiction and those who live with chronic pain are more commonly two totally different groups of people.

However, the government and general public do not see it that way. They see both populations in the same group but…and it is a huge BUT…while those fighting addiction disease deserve to be treated with dignity and Narcan should be readily available for overdose.  Do I deserve the indignity of lacking access to the needed FDA-approved prescription pain medications that allow me some normalcy in my life?!? I am the “unintentional consequence” of the crackdown on opioid abuse in our nation.

Does any of that make any sense to you? I didn’t think so…let me break it down for you.

The first group is the people who live with the disease of chronic pain. This group is not fighting “addiction;” we do NOT use our legitimately prescribed FDA-approved pain medications to get high! We are not doing anything illegal to obtain our medications. We go to a healthcare provider who uses medical expertise to help us live with the pain. We fill the prescriptions at a legitimate pharmacy by a pharmacist who also uses medical expertise to make sure we know how to safely administer our medications.

We take our medications home and we secure them in a safe bolted to the floor. We use the medication exactly as our doctors tell us to, we don’t take more than what we are supposed to take, and we don’t sell our medications or share them. We do absolutely nothing illegal to have access to these life changing medications. In fact, we jump through hoops as the medical community demands.

The second group is those fighting substance use disorder. This group is looking for one thing and one thing only…the next high to avoid withdrawal! They do not care that they are doing illegal things to obtain the medications. They do whatever they need to do to satisfy the addiction. They don’t stop even though they know that they could die from overdose. They do not stop even though they know they are hurting all the people who love them and worry about them.

Now that we have cleared that up, I will continue with what happened that day.

After the shock of being told that this person who is standing, smoking cigarettes and talking on the phone was near death a few hours earlier due to overdose, I got angry!

I got very angry and what I wanted to do was get out of the car and scream at this person. I wanted to stand in front of him and tell him how his addiction was keeping me from receiving adequate pain care for the painful diseases that I live with. I wanted to scream at him that he was nearly dead a few hours earlier and that just because the Narcan brought him back that it doesn’t mean he can go back and do the same drugs again because he could be saved with Narcan.

I wanted to scream, curse, and yes, in the moment, I wanted him to feel pain. The kind of pain I feel every second, every minute, every hour, every day of my life. I wanted him to lay in bed and toss and turn praying for sleep to come so the pain would stop. I wanted him to feel the pain of lying on the floor in the fetal position begging for relief from the pain because his body and brain could not take the pain anymore.

I wanted him to be told at the age of 26 years old that he would just have to learn to live with the pain because there is no cure. I wanted him to know what it was like to try to raise three little girls while living with pain every second of the day but he cannot show it because these 3 little girls needed him to care for them.

I wanted him to feel the stigma of living with pain. The horrible remarks people make when you get of the car after parking in a handicap spot. I wanted him to hear “you don’t look sick” or “you aren’t old enough to be disabled” or “you are a horrible person for parking in that spot, there isn’t anything wrong with you.”

I wanted him to know what it is like going to specialist after specialist searching for a miracle that would take the pain away, a miracle pill, a miracle surgery, hell, a full body replacement surgery so he could be who he once was.

I wanted him to know that because of him, I am treated as if my life doesn’t count as much as his does.

I wanted him to know that because of his substance use disorder, he is looked upon with empathy and concern and I am looked upon as a bad person who is “drug seeking” for just wanting the pain to ease off just a little bit, just enough so I could walk, just enough so I could take care of my daily needs, just enough to keep the dark thoughts of ending this life of pain away.

I wanted him to feel the pain that consumes my entire mind, body and soul. I wanted him to admit that it is because of his disease of addiction that I am suffering too.

I was angry and I am still angry and I don’t like it. I don’t like the anger because I have always felt compassion and empathy for those souls fighting the monster of addiction.

Something happened that day…I lost my ability to feel compassion and empathy for those fighting substance abuse. I lost it and I don’t know if I will ever be able to return to feeling compassion for them.

Something happened that day…it became crystal clear to me that my life doesn’t seem to be as important as his life.

Something happened that day…and it was revealed to me that the government who is fighting so hard to stop the opioid overdose crisis doesn’t care about my life. They don’t care that I live with unrelenting pain and they don’t care that legitimately prescribed FDA approved medications can give me back my life.

Something happened that day…and I lost a very important part of me, I lost my ability to feel compassion for the suffering of others. I lost my ability to give a damn about those fighting their addictions. I am angry; I am sad.

Something happened that day….