By Steve Hayes
“Hey! Why do you walk like that?” “Do you have boomerangs in your pants?” “Can’t you be Normal?” Growing up, I was plagued with questions like this all the time due to my disabilities. While it made things difficult for me, it has also allowed me to learn some strategies for my mental health and to navigate the daily challenges of having, in my case, permanent physical disabilities and still lead a happy and fulfilling life. In this space, I hope to share a bit about myself, what I have overcome, and some of the strategies that have helped me that will hopefully be supportive to others, whether navigating physical disabilities or not.
My experience living with Disability
There are two disabilities that I was born with: Cerebral Palsy and Hydrocephalus. For anyone who does not know what those are, Cerebral Palsy is actually the name for a group of disorders caused by damage to or abnormalities inside the developing brain that impacts the brain’s ability to control movement and maintain posture and balance.. While it can be severe and impact the whole body for many people, the type that I have primarily impacts my legs and knee joints which impacts my gait, walking, and, occasionally, my balance.
I also have a disability called Hydrocephalus, commonly called “Water on the Brain”. That caused me to need to have shunts implanted to drain the fluid that was putting too much pressure on my brain and skull. With one installed on either side of my brain, they are quite visible and noticeable, especially if my hair is cut short.
These disabilities caused me to be seen as “the weird kid who walked funny” or had people asking questions like “What’s that weird thing growing out of your head?”. Over time, this had a profound impact on my self-esteem and, certainly, on my mental health. I found it difficult to have or make friends and was forced to put on a tough skin to deal with being made fun of or laughed at. Sadly, this shifted as an adult in ways that I never thought about. While I am no longer made fun of as often, I now deal with statements that I think well-meaning people intend to be more complimentary than they actually are. Phrases like “You’re so inspiring” (which I have heard often), for me, can feel less positive or complementary than the speaker may believe it to be.
Over time, I began to isolate more and even recognized that I am a person who has received messages and heard things that others did not. I also (though I did not know this or have words to describe it until much later) became very depressed. Having these disabilities gave me a totally different view of myself previously than the view that I have today. So this begs the question: What changed from then to now? Well, I can tell you that it wasn’t my circumstances, disability or mental health struggles! This is what I hope to discuss and give, not just insight into, but share strategies that have been helpful to me for dealing with my mental health struggles while simultaneously living with a physical disability. Hopefully, no matter what you may be dealing with, physical or not, these tips can be helpful to you too.
Strategy #1: Honoring What You Have
The first strategy that I want to share is also possibly the biggest: Honor What You Have. I spent so long in my life either wishing that my body was different or wishing I could look like or be someone else that it wasn’t until quite recently that I have begun to really honor and appreciate the body that I actually have. Is it perfect? No. Do I still have disabilities? Yes. But I recognize that this body is mine and, even with the limitations I may have, I can honor my body. That can be via stretching and yoga, exercise to build more strength, meditation to keep my mind in a peaceful state, or writing a love letter to my body thanking it for all it can do… even if “all” doesn’t mean it can do “everything”.
Strategy #2: Don’t Hold it In
The second strategy that I want to share is one of the ones I didn’t fully grasp the value of until much later in life but it has meant so much: Don’t Hold It In. There were many nights that I cried by myself wishing I could be “normal” or “like everyone else”. Nights or times when my thoughts toward myself got very dark but still real to me. I thought no one would understand or no one would want to hear how I felt. When I finally shared how I felt, whether it was speaking about my depression or when my joints hurt, I found that there were genuinely caring people willing to hear me and stick with me. Finding a network of friends and even professionals has been so supportive to me because it makes such a difference to not hold all of my feelings, thoughts, and emotions in…or just talking to the voices in my head. It’s better to speak to people I can actually see…and their advice isn’t as negative as what my own thoughts can say to me.
One of the big ways that I have learned to not hold in how I was feeling is by going on Youtube and hearing the stories of others with disabilities. This can help me to see myself and my story in someone else and, as they share how they keep going, I am inspired to do so as well. I can relate because I see that my emotions, thoughts or stories are not unique to me. Whether that is laughing at the comedy of Josh Blue (a comic with Cerebral Palsy) or hearing an inspirational speech from Nick Santonasstaso (a powerful speaker who also has disabilities but has truly overcome a lot), I become stronger just knowing that others are out there too.
Strategy #3: Hold On to Hope
While I could share many more strategies, I will just share one more: Remember to Hold On to Hope. I know this may seem the most difficult one, especially if there are days that your body is in pain or your mental health is not in the best place.. This isn’t just a broad statement to inspire or encourage (though I certainly hope that it does); this can be the fight you are in for a while! What I will say is, no matter how difficult this can be, it really is always worth it. Find the reasons to keep going. These could be small or simple things like planning to see a film that weekend that you don’t want to miss or, as I have done many times, finding out when one of my favorite artists is coming out with a new album that I don’t want to miss out on.
These could also be larger reasons and goals that you have or want to make. What is most important is having them and holding on to them. Finding reasons and goals helps combat the thought that may come that “you have no reason to keep going”. Having a list of even little or simple things allows you to say in those times that this is absolutely untrue!
In the end, I hope that these tips can be helpful. I know the struggle can feel overwhelming but I believe that, as Bob Marley once said, “You never know how strong you are until being strong is your only choice”. Don’t give up! Let’s be strong together.