This letter was adapted from Sandy’s book, “The Patient Experience with Transverse Myelitis.” This book holds over 600 pages of vital information drawn from the lived experience of Sandy and Pauline, as well as other featured community members, navigating life with a rare neuroimmune disorder. Please know that although the transverse myelitis is mentioned in its title, it holds great value across the board for those in our community. It is available on Amazon here.
When change happens gradually in our lives, we have lots of time to prepare for those changes.
Some preparations involve physical and logistics planning. Some adaptations involve practicing how we are going to think and feel about those changes. As change takes place as a constant in our lives, we all have experience with going through this process. When a couple finds out that they are having a baby, they have nine months to prepare for becoming parents. A process of adaptation is set in place in American society that involves changing diet, reading lots of material about the baby’s development before and after birth, purchasing furniture, equipment and clothing, and lots of painting and decorating. Nine months of thinking and feeling is also set into motion. A lot of mental and emotional practice goes on regarding what it means to become parents. The changes are going to be enormous, but nine months is a fair amount of time to do some good adaptation work to prepare for these changes. Many of life’s changes are predictable and/or have sufficient lead times that allow for good adaptation planning.
Other experiences can occur with little or no time to adapt. Getting transverse myelitis is an extreme case of immediate, unpredictable and devastating change. There is no time to adapt to what is going to be the most difficult change a person is ever going to experience. There is no warning and the changes are, for most people, enormous and devastating. Adaptations are going to be a challenge.
Some people find ways to adapt. It is not easy, but they do. They speak about their situation with some amount of resignation; not giving up but an acceptance. They remain positive and hopeful about their futures. They seek strategies to take control of their lives, because they still feel like they have control over their lives. Those strategies involve educating themselves about their disorder, the best treatment strategies and where they can find the best medical care. They are interested in learning about changes they can make to participate in trying to get better, such as diet, exercise and positive mental health options. They are in control of their lives, even in the face of their life being totally out of control.
I talk to people who wake up every morning with a positive attitude. They are finding meaningful activities for themselves. They continue to grow and to develop their capacities, they have positive relationships, they look forward to events and they find satisfaction.
That doesn’t mean they are happy about what happened to them. They mourn their losses, what has been taken away from them, because when you can’t move, there’s a lot of life unavailable to you. They don’t dwell on those losses all day long. They find joy and satisfaction in what they have in life.
This positive spirit is so dramatic for me to hear. Are these people being courageous in their reaction to this adversity? I believe that they are. This notion is reinforced for me by the fact that none of them considers what they are doing as courageous. They are just living their lives, taking as much control as they possibly can, moving on and trying to make the best of difficult circumstances.
There are people who struggle with these changes. They are angry, bitter, and frustrated. They are focused on not being able to walk or to urinate. The more they think about these losses, the angrier they become. They are frustrated and angry about not getting answers from doctors about why this happened to them. They demand the answers and then they are bitter and frustrated about the medical community not understanding their disorder. They are even more bitter and angry that the medical community doesn’t have any great solutions to their medical problems. Their nerve pain and fatigue fuel these angry fires.
I have no idea whether these people are depressed. I’m thinking that being pissed off about something that they have every right in the world to be pissed off about was not one of the criteria for diagnosis of major depressive disorder. I also have little doubt in my mind that there are neurologists and general practice doctors who are handing these people anti-depressant prescriptions while they are ducking for cover under the examination tables without considering any criteria for a major depressive disorder diagnosis. While the person’s anger is rational, the physician is, in their own pharmacological way, recognizing that these feelings are going to be self-destructive.
Many of these people feel as though they have lost control over their lives. They are victims of everything going on around them. From the loss of their ability to walk or urinate or have a bowel movement to the loss of relationships to the loss of their careers to the loss of their dreams and hopes to the loss of their marriages or families to the loss of their homes. As they recount every nook and cranny of their horribly devastated lives, they become more angry, bitter, and frustrated. They are victimized by the entire situation. They have no control over anything. They’ve been failed in every way by the medical institutions, by society, by the government and most significantly by their families.
I don’t lose patience with people who are bitter and angry, and I never blame them for how they are feeling. I appreciate and empathize with how they think and feel. Their thoughts and feelings are rational. I also think that how they are managing their circumstances is totally unhelpful, self-destructive and will get them nowhere fast in life’s great journey. So, here’s what I say to these people. “I totally get where you are in your thinking and feeling about what has happened to you. I’m not going to say a word to you about how your head and heart have gotten to this place. These are rational and legitimate feelings and thoughts. But I’m also going to make an observation. You are taking a difficult situation and beating yourself to a bloody pulp with it. All of life might have caused you this grief and misery. Why are you participating in this piling on? If you can find a way to put it down and stop beating yourself with it, you will at least experience relief from the self-inflicted wounds. I’m not sure how you are going to do that, and I make no judgment whatsoever about your doing it. All I know is that you need to try, and you might need some professional help in getting there. Please find yourself a good clinical psychologist who you like and respect and start exploring the possibility that you could be feeling better and thinking more positively about all of this. No matter what control you have lost of these other things, physically and in every other way, you still maintain full control of your brain. Please get help and a strategy for exercising that control in a more positive and helpful way for yourself. I think it would help you a lot.”
If I hear them being self-destructive, I implore them to seek help. I never make judgments about why they are in this dark place. It is remarkable to watch people who manage these challenges with courage, resolve, empowerment and a positive spirit. We all have personal choices to make about experiences in our lives. It is beyond gratifying to observe the resilience and creativity human beings can bring to even the most difficult situations.
Adaptation is possible. It is a true blessing to watch it, and even more so in people that you care about deeply.
Take care of yourselves and each other,
Sandy
