Our Loved Ones’ Needs
“My illness is not a rejection of you. It is simply my reality.” This phrase came to mind when a Focusing friend and I began to see similar patterns in the behaviors of some of our friends and family member’s relation to our disabilities. Our loved ones seemed to be responding to our disabilities from the point of view of their loss of our presence. They seemed to want us to somehow overcome our limitations so that we all could return to our pre-disabled selves.
My Reality vs. your Perceptions
My husband and I live isolated lives because of his severe pulmonary disease. In addition, I had Salivary Cancer in 2017 that was treated with high levels of radiation. This treatment greatly damaged my immune system. While I am physically able, I also need to keep myself healthy to protect my husband from infection. A friend of mine is regularly insisting that we make an effort to be more available and spend more time doing things that require us to be among a lot of people. She believes that our need to isolate is no longer necessary even though my husband’s prognosis has not improved.
We are not Rejecting our Loved Ones
A friend has developed a disability that, at this point, has no treatment. In her case, an important person in her life insisted that she learn to overcome her disability because it makes that person not want to be with her.
My family lives in another state. My husband and I do not go to family parties because driving is out of our range and the family parties include mostly people who have never vaccinated. I need to remind relatives each time we are invited why we cannot participate. They seldom discuss what they can do to remedy the situation of the loss of contact.
Awareness
We are aware that this problem isn’t only something that my husband and I experience, but seems to be something that other disabled people experience as well. Knowing this helps us look at the situation from a different perspective.
I sense a distinct sense of grief among friends and family. It could be grieving the end of how we interacted in the past and expecting the disabled person has the power to turn back time.
Recently, I experienced a number of people expressing these sentiments. After my conversation with my focusing friend I decided to find a way to help not only my loved ones but also myself to clarify how disability can lead to new lives. Here is what has helped.
Acknowledgement of the disability
The nature of each person’s disability is unique and unpredictable. We need to allow ourselves time to take in what is different, what was lost, and what we might have gained.
Acceptance of this new way of life
Once we identify how we have changed, we can begin to accept our limitations and even be able to see some advantages. For example, certain types of immobility can lead you to find ways of expressing yourself without interacting in person or spending more time being willing to read, write, and contemplate, the world around us. My husband, used his time alone to chronicle his life including the time he had dedicated his life to stoping the Vietnam War and fighting racism in our society. I have spent my time helping to extend Wholebody practices to a larger audience. This blog, for example, has readers in 60 countries. I also help focusers in different countries to communicate with each other.
Appreciation of the gifts it can bring
I take time to do more things that require that I have time to think, explore ideas, and write about what I find. I also spend time learning new ways to manage my digital life that include, films I create with friends and writing letters to government officials regarding responses to laws or lack thereof.
When I was in grammar school my parents realized that I was more advanced than my grade. They sent me to a tutor. She was a teacher in a wheelchair. I went to her home once a week. She asked me what I needed and I told her I wanted to be a writer. She taught me how to think and write about the things that were important to me. Without this training I may never have been able to fully enjoy my abilities. That experience showed me that a disabilty is not the end of life. Our friends and family members need to appreciate what we are able to do in spite of the things we can’t do.
Allow our bodies to find their own reality
My WholeBody practice encourages me to hold space for what is challenging, what needs support and what needs to be celebrated. We have to help our friends comprehend the complexity of being disabled. They also need to be aware of their emotional response to the changes in our lives. If they don’t, it can lead them to demand that we change in impossible ways. It is important to remember that your friends and loved ones have their own reality in response to your illness. Some people will begin to understand your reality on their own and how to support you. Others might need your support. Most importantly hold space for the love and concern that you know is there.