Individuals facing physical challenges have challenges that also affect the people close to them. Each individual handles challenges in different ways. The new challenge of physical disability can be frustrating, but efficient communication and a unified effort can make the situation smoother. The loved ones of someone with a disability have a tendency to “smother” the individual, which is accepted by some people with disabilities or found annoying by others. I fall in the latter category.
Nine years ago I was a young Doctor of Physical Therapy in an exciting new city, San Diego, California. I was rarely home: going out to dinner, going out to happy hours, catching one of the local sports teams, surfing, or training for my next race/triathlon. My world got rocked when I was diagnosed with a golf-ball sized brain tumor between the cerebellum and brain stem. The cerebellum controls fine movements and balance. The brain stem (primitive brain) controls basic unconscious body functions like breathing rate, heart rate, swallowing, facial muscle control, etc. The tumor was located in a very dangerous area but required removal. I feel very blessed because the surgery alone could have left me with severe impairments like “locked-in syndrome”, deaf, life on a ventilator, or in the worst-case scenario dead. Determining my treatment plan of care was a very difficult decision to make considering that at the time the toughest decisions I had to make were: what to wear for work that day and what to eat for lunch/dinner. Surgery and treatment left me trapped in a wheelchair with new physical and emotional challenges. I knew what I was up against, but I was more worried about my family. They were probably more frightened about the situation than I was. My background as a healthcare professional in physical therapy has given me a unique perspective on disability/survivorship. I have experienced both sides of the exam room as both a healthcare professional and brain tumor survivor with physical disabilities.
Making the transition to life with a disability or even a tumor/cancer diagnosis is an on-going process that requires everyone around the patient to be on the same page. There is no simple cookie cutter way to address how to treat someone with a disability. This is how I handled my situation, so it may or may not work in your situation. This transition is a continuous system of verbal and non-verbal feedback that must be considered when in this situation. I’m Filipino-American so I expected “smothering” from my family and friends, but I laid down the ground rules. It is very important that this be established early on to keep everyone’s sanity. It is really easy to simply ask someone with a disability if they need assistance with something. If there are communication issues, FIRST establish what they need before jumping in to assist. It is very IMPORTANT that the patient be directly addressed. It is very easy to assume the patient needs assistance and ignore feedback from the patient. At times the helpful deeds of complete strangers make situations more difficult to manage. This communication is a two way street: care givers must acknowledge needs AND patients must efficiently communicate their needs. My advice to caregivers is: don’t ask every single time an obstacle arises. It gets annoying. Simply ask them if they need help with anything. For caregivers or people who are with people with disabilities, ask them this once. Use the phrase “Just let me know if you need help.” That way the focus is shifted to what “they need.” Some will prefer that you just automatically do things for them if you continue to “baby” them. At least get these issues out in the open early on.
One of the things that bothered me when I was in the wheelchair was when people would talk about me to who ever was pushing my wheelchair right in front of me. I found that just plain rude! They probably assumed that I couldn’t understand them. That used to drive me nuts! I will never forget the looks of pity and the curious stares I got when I was in my wheelchair. I’ve never felt so helpless and insignificant in my life. I’ve learned to ignore the stares, but I’m told I still get those looks when I’m cruising around in my mobility scooter (AKA the mAss Kicker Mobile.) Destroying assumptions and stereotypes has become a hobby of mine! It takes a lot of confidence/bravado to do this. One of my coaches in high school taught me a great quote that I’ll never forget, “When you assume, you make an ASS out of U and ME.” So in a way, when people have preconceived notions about people with disabilities and treat me in a condescending tone, I respond by becoming a smart-alec. You treat me like a second-class citizen, and I’ll respond accordingly. The first time I felt like a normal person was when I was in my wheel chair with a bunch of friends downtown and a street-person told me to “go to hell” after I didn’t give him change (actually what he said was a little more rude.) I had grown tired of people babying me, so it was refreshing to hear someone insult me. Granted, you don’t want to hear that all the time, but I felt “normal” for the first time in a long time! The take home from this article for caregivers is “Don’t assume anything until you ask.” There will probably be conflict due to frustration, but don’t take it too personally! Prepare yourself and EMPOWER THE PATIENT. Patients lose control of some much, so there are A LOT of emotions at play. Help them regain some control over their situation. Try to resist the urge to “baby” them.
Eric is a Doctor of Physical Therapy turned brain tumour patient, and brain tumour patient turned tumour/cancer advocate. He is the founder of mAss Kickers Foundation www.mAssKickers.org and the author of two books: Reversal, When a Therapist Becomes A Patient and Awakening, Becoming A Brain Tumor Thriver. Eric is currently researching ways to increase the maximum speed of his mobility scooter.