- Everything is going to be okay: When “Everything is going to be okay” is repeated by multiple people, life feels like it’s falling apart, it feels like what they’re saying is a lie. I believe that everything will not be okay, until we warrant a plan of action that will have a positive outcome. Hoping and wishing for everything to be okay does not make me feel better. If I stayed doing the same things and not changing, I would have never found comfort. Just constantly affirming a false belief. Do not be blinded by the illusion of others because they are afraid of what is happening too. Stand strong, stay grounded, learn the new you.
- Sorry: I’m tired of everyone giving me “SORRIES” it feels condescending at times because they just glaze over your pain and go back to their reality. I’ve gotten used to it but I’ve learned who to share with and not. I know they don’t know what to do, or say, and it is the social norm. I would rather someone life my spirits with encouraging self care, love, and connection. I have changed the way I talk to people about my injury and illness so they don’t treat me as a sorry pitiful being.
- Way to walk slow!: Someone yelled, as I was struggling to cross the street. I still struggle with social situations. PEOPLE TREAT YOU DIFFERENTLY if you have a wheelchair or not. If they can SEE your disability or NOT! I HATE IT!!!!! but It helps me see people and things more clearly. People are a lot nicer to you when you have a wheelchair. If you look as if you can’t walk they get mad and impatient.
- Can I request mental health services?: I asked the VA if I could get mental health services, since the lapse of insurance and losing my abilities was starting to take a toll. My appointments and some type of wellness plan/support was taking too long. I kept feeling like I was getting worse, and was perpetuating constant flare cycles because I didn’t understand my body and how my subtle actions affect it.
- Have you thought about getting a wheelchair?: The disability office at my College was the first to help me identify that I needed a wheelchair. I couldn’t walk the campus anymore. I kept getting burnt out. I could walk 10ft increments constantly looking for a place to sit, if there was no chair I sat on the floor. Lots of stares but who cares, I am not in physical pain. Just the crushing emotional pain of losing my abilities with no proper support. I remember breaking down a few times. 😿
- You need to have a wheelchair to use this benefit: I asked the VA if I could use the ride service they have for service connected disabled veterans. I needed up going to my many appointments to help my chronic pain. I am not able to sit for a long time which includes driving, the nearest VA was 1hr away. My social worker said I needed to have a wheelchair to use that benefit. I told her I think I need one and it requires me to get to my appointments, to get one. It was only a matter of time where It was hard to walk around the VA. My mental health therapist was able to get me a ride. The hardest part of dealing with change and chronic pain was fighting to get my needs met and trying to FEEL SEEN AND HEARD!!!
- Push through the pain: Some things people and doctors suggested. It DID NOT WORK FOR ME. I get so good at pushing through the pain, I don’t feel pain anymore, I just start to get motor dysfunction. It feels like I can’t lift my feet anymore and open my legs to take a step. Afterwards it takes me over a Month to get through the flare. I NEED REST. It was hard for people to encourage rest. So it was hard for me to break all the limiting beliefs that others and myself have put on me. .
- You look fine today: Wow, how is it one day I can walk, get the rest I need, then be able to walk, again? When people see that, it’s a miracle, your fine! No! This is a pattern and I don’t understand why! I know you don’t understand and believe I am ok, or you may think I am faking it. #spoonie
- Hot Wheels!!: Y’all this one irritates me the most. Please do not identify me as my wheelchair. I have a name, I am a person. Look at me, not the person pushing the chair, or the chair itself. Something about losing your abilities and people treating you in a condescending way makes me realize how much dignity is lost and why do we accept it. Let’s change the norm.
- What do you do for a living?: I used to struggle with this when I couldn’t keep up in the workforce anymore. I realized that most of the time it is an ego question. I just tell people All the things I like to do, I am a painter, singer, healer, graphic designer, ect. My job is to heal and come back to myself.
- Move away from this lady she is disabled: Chronic pain, being a disabled veteran, and having a wheelchair in public scares people. When I go out to make some human connection some people run away. I understand people don’t know what to say or do, it doesn’t help with loneliness felt having to cope with my disability.
- The only elevator is out: The challenges faced when you have a wheelchair and understanding how society is here to help. It’s a cold world 🌎 but there are people here to help, they can be rare to find but don’t stop looking for them. KEEP FIGHTING!
- That’s Neurologies problem I can’t help you with that: When you have chronic pain you have to see a lot of different specialists. It is easy for them to keep passing you off to each other. I keep trying so hard to rally my medical team. I have only been successful with Ayurvedic Medicine and actually creating a Wellness plan that really manages my pain. The VA has felt toxic at times, full of stress and more questions, no actual relief guidance on pain management (unless I want lots of Medications).
- Disabled veteran: having the title is a double edge sword. Yes, you get the benefits but you’ve lost an ability. It’s about finding and creating a new life with where you are In the present moment. Even though I may have suffered a loss, I am feeling I have a lot more freedom than I used to.
No matter what anyone says to me, I need to stay grounded and keep protecting my energy. Our words are powerful and our actions are valuable. Learning to respond and not react to my environment has been the key to detach from any toxic situations or people. It is important to keep loving and understanding yourself everyday.
Roaming Rogi 