Last January I went trough a major scare, in December a considerable toumor were uncovered in my abdomen and the doctors believed it to be cancer. I was sure ti was not. I cant explain why, it was just a feeling, maybe my ancestors told me in a dream or when I gazed upon the northern light. I live above the article circle in Norway and people here are more into alternative medicine, sami medicine and believe that there is more than what can be explained. My family and partner were afraid but I felt safe and sure. The doctors laid out plans about treatment and how to proceed during surgery. I agreed but were confident it would go my way, Having a surgery no matter why is not unusual for me as a disabled person. I have done it before and will most likely do it again. My body is fragile and strong. One of the things that make me feel strong and confident before going into surgery is my personal assistance services.
I live independently in my own home and I have personal assistants 24/7. Due to the hospital defining my care as complicated and time-consuming, I am always allowed to bring my personal assistants with me to the hospital. It feels like a privilege, and I know that they are detrimental for my recovery. When I am weak, in recovery, and trying to regain what has been paused by anesthesia/medicine, my personal assistants are vital support. The nurses in the hospital are great, but they don’t know me like my personal assistants. The nurse only knows the patient that is in front of her, she don’t know the hopes dreams, humor or music I like. My personal assistants they do, they knew which songs to play from my Spotify and what meditation videos to put on, and they could read how I was doing just by looking at my face. This lifted a huge barrier, cause I could be given what I needed almost without asking, just a look or a nod. They read me like a book.
The independence given to me through independent living and specifically personal assistance allows me to heal and it gives me peace. Beeing in hospital can be scary for everyone, and when I can bring my own team I know that my assistance and care don’t have to be part of the scary. I can focus on recovery and being present while I am supported by someone who understand my needs and my need of being independent. Offcourse the nurses handled all the medical aspects as they should but my personal assistants handled all the practical stuff. Not having to use energy to explain five different nurses how I like to go to the toilet or shower or use my breathing machine made me be able to save energy on what is important: recovery. My personal assistants also helped me raise my voice when they didn’t listen and made sure that my needs were meet.
The tumor was benin. Surgery were still life changing and huge. Tumor of the size of a basketball does something with your insides so there were complications. I got fitted with a stoma bag and had to relearn a lot of skills. But I am alive. The last year had been about regaining life, regaining control, and feeling that my body is my body and not a medical project. Personal assistance have made this easier and made it possible for me to start taking back my life already from day one after surgery.
This is why independent living and personal assistance is so important. It gives us the power in our own life. How we want our care is over decision we should be able to decide. Having personal assistants with you during surgery and hospital stays I would say for many of us can be detimentral. It should be a choice and we need to listen to the disabled voice. The doctors and nurses my be expert on our illness and treatment, but never forget that you are the expert on your needs and you deserve that they listen.
