…and the Home of the Brave

Every time I see a Wounded Warrior Project commercial and hear Trace Adkins and his incredibly deep voice, I have a very strong and mixed reaction it. On the one hand, I think ‘well at least the Vets are getting their needs met because they should never end up panhandling at intersections, or living in every possible place other than their own, safe comfortable home.’ The next instant my mind goes to being angry. I think that anyone with a potentially fatal disease who volunteers to take an untested experimental medication in a clinical trial with no guarantee of anything coming of it — bad or good, should at least be guaranteed that they will be followed no matter if they complete the trial or they bomb out. If you don’t think that there are wars going on inside our borders, such as the war on Cancer, the war against AIDS, the fight against opioid addiction or the war on AIDS, you are sorely mistaken.

So many of us watched our peers decay and rot right before our eyes, and there wasn’t anything we could do but be there for them. I can relate to every soldier who comes home with PTSD mercilessly haunting them. When I was 25, like many of my peers, I watched my friends drop like swatted flies. We all did — I remember at the NIH, adjacent to our waiting room on the 12th floor, there was a room full of 7 or 8 women in the turbans of cancer hair loss, sitting in recliners, knitting and chatting away. Every one of them was being treated for Breast Cancer and had a bag of chemo dripping into a central line that led into their robes. They, like our clinic crowd, had become close friends over the period of their study, and the pall that beset that room when one of them no longer came to their knitting group was palpable. I used to chat with them and the first time I noticed that one was missing, I looked around the room — meeting every single pair of eyes, and as I inhaled to begin to ask, one of them said ‘Carole was having a hard time for quite a while’ and another ‘I’m sure gonna miss her’, then ‘she sure taught me a lot about resilience’ and another ‘and how use these damn knitting needles.’ They all nodded with a chuckle…..I thanked them and let them be. Knitting had become their armour, and boy did I admire them.

There are so many similarities between these clinical studies and traditional war, but the most striking thing is the bravery so many people have when it comes to helping our nation. That ‘damn the torpedos, full speed ahead’ energy is pervasive. In my day, it was a little different, because we were all so desperate that bravery didn’t cross my mind. This is not about me though. This is about respecting people, many of whom are disabled, and older for their amazing bravery for making that difficult decision, at their physically weakest moment, and usually against the counsel of family members, to give their all. There is a commercial for a new treatment for one form of small cell lung cancer that doesn’t promise anything like a cure, only that ‘X’ percent of those who took it lived longer than the month or two they were originally expected to live. The list of possible negative effects and ‘side effects’ is over the top, yet at the end of the commercial, they take the time to thank all of their clinical trial participants, as many of them didn’t live to see the benefits of the drug. To my knowledge, this is the one and only time that a pharmaceutical company has even thought about the people that gave their lives so that the company could potentially make a fortune with a drug. I have written previously about my belief that an essential, but missing, part of the clinical trial requirements is that any participant who is taken off study because the medication was harming them must be followed medically and financially compensated for the damage done them by the drug in question. When I was told by the doctors at the NIH that ‘the drug companies did not fund the follow up piece’ of the study I was in, and remembering how dire the consequences had been for the participants prior to my phase who received ‘the stronger dose’, I went off. It is high time that the Pharmaceutical Companies attend to this. The docs agreed with me, especially since I was the last survivor, but that is another story.

It continues to be my experience, whether one was physically maimed in military battle or by disease or an accident, the lengths that these people go to for not just their own recovery, but to benefit the greater good, is emblematic of how hard people with disabilities are willing to work in any situation. Many of the people working with newly disabled vets are disabled vets themselves. Similarly, at places like Rancho Las Amigos National Rehabilitation Hospital outside of LA, some of the most effective helpers are the alumni and outpatient clients who lead ‘peer led support groups’, and bring the needs of their fellows to the people who can help them. No one even questions either their capability or qualifications for doing what they do. A lesson can be learned here if people will only listen.