[Image description: A young woman with dark hair pulled back in a ponytail wearing an orange blouse is seated and smiling at the camera.]
It is a running joke in my family that I jerk involuntarily and freeze whenever there is too much stimulation around me, or if I’m anxious or stressed.
This is why I have always avoided crowded places, or went out with a friend that I could hold on to for support in a crowded environment. The shock on my friend’s face when she first saw my hand spasm entirely of its own accord was priceless!
Up until recently, I didn’t attribute my ‘freezing up’ to the spastic cerebral palsy that I have had all my life.
You see, spasticity comes with pain. While I will be the first to admit that my spasticity is quite mild, there a few times a day when my muscles freeze up, it takes some serious breathing exercises to get through the pain while they relax again.
Imagine you’re walking down the street and you get a sudden muscle pull in your leg. How painful would that be?
Now imagine having involuntary muscle pulls of varying lengths, and varying pain levels, in various parts of your body throughout the day. That’s a thought to banish, right? Well, that’s a reality for a lot of us who live with cerebral palsy and we function with it every day.
Even though my spasticity is relatively mild it is still something I experience every day, so I have developed a few “hacks” to help me cope:
- Breathe through the pain. Be deliberate about going against your natural inclination to hold your breath, and breathe.
- Study and understand your spasticity triggers. One of mine is extreme cold, and also anxiety.
- Eliminate the triggers you can: for example, try to keep yourself warm in colder weather by wearing lots of layers.
- Manage the triggers you can’t completely eliminate. For example,there will always be times when I will get anxious and will therefore become susceptible to becoming spastic. Knowing when I am in a tense situation, and starting my breathing early, helps minimize the effects a little.
- Ask for help. Spasticity will sometimes immobilize you. No matter how good you are at controlling your spasms it will sometimes happen, so ask for help.
This last hack has been the most difficult hack for me to use, but interning at UCP has helped me learn to do this, and I have found that most people don’t have any problem helping out– all you have to do is ask!
Spasticity does not have have to stop you from living a life without limits. Find what helps you relax, and use it often to get back to living your life on your terms.
For more information about spasticity and how to manage it, visit www.spasticityalliance.org.
Tobiloba (Tobi) is a three- time published author who believes so much in the power of words- written or spoken- to change the world, one person at a time. She has spent her career working with various NGOs in Nigeria and beyond improving the lives of people living with disabilities, with a special focus on cerebral palsy. She currently does this in her work at www.benola.org. Her reasons behind this are personal. Tobi was diagnosed with cerebral palsy (CP) at 20 months and has continued to push the limits, chase after her dreams, and redefine what it means to live life with a disability. She holds a law degree and was called to the Nigerian Bar in 2008. She also holds a Masters degree in International Law from the University Of Hertfordshire in the United Kingdom. She is currently a fellow at United Cerebral Palsy’s national office as a part of the 2016 Mandela Washington Fellowship, a flagship program created by President Obama to spur growth and prosperity, strengthen democratic governance, and enhance peace and security across Africa.