Don't Let People Tell You That You Can't Do Something

Though you have a condition that greatly impacts your life, it’s essential to learn how to balance that out and still live your life.

When I was growing up, my parents never told me, “Jon, because you have Sickle Cell, you can’t do that.” In the words of my mother, “I didn’t know for sure what you could and couldn’t do. So there was no way I was going tell you you couldn’t do something.”

As a result of not being restricted by my parents, I tried many different things throughout my life. Whether it was martial arts, weight lifting, racquetball, basketball, tap or jazz dancing, each activity taught me how to better manage my illness and what my limits were. To a large degree, I learned for myself what I could and could not do, rather than having somebody decide that for me. Sometimes doing an activity triggered a crisis. Sometimes it meant hospitalization. Some activities I had to give up early because they were too hard on my body. Snow skiing is a good example. After doing it twice, I learned it was something I couldn’t do without paying a heavy price.

What matters, however, is I tried new things and was able to do them for a time. It’s in your best interest to discover for yourself what your limits are. Occasionally people might try to restrain you by telling you what you can and can’t do. The thing is, you know your body. You know how it will respond to certain activities. You know your own boundaries. And if you don’t, you will learn what they are.

Having said that, I want you to understand this. When testing your personal physical limitations, be prepared for whatever consequences may follow. For instance, my brother has a boat. When I was a teenager I enjoyed skiing behind his boat on a kneeboard. I was smart and only did so in the warmest summer months. Despite the fact I wore a wetsuit, I often paid a price for that water fun in the sun. I had to make sure I took pain medicine before I dove in the water, that way if and when the crisis came as a result of the cold water, I wouldn’t have to wait long for the medicine to kick in. I also made sure I had towels waiting for me in the boat when I returned. Afterward, I was quick to get out of my wetsuit, dry off and put on warm cloths. At the time, the fun was worth the price I paid. As I grew older, I felt differently about that and gave it up.

Though I tried many different activities and eventually gave nearly all of them up for the sake of my health, I was made a better person for having done them. They helped me to feel good about myself for at least attempting them and not telling myself, “No, I can’t do that.” Dancing is a perfect example of this.

Tap and jazz dancing was something my mom forced me into at the age of twelve. “I’ll grow up to be gay,” I exclaimed in protest. Finally she got me to agree to try it for a month and said I could quit if I didn’t like it. I stopped dancing seven years later. I’m eternally grateful that she forced me into dance. It was something I was loved doing and I was good at it. And just for the record, I didn’t grow up to be gay; “not that there’s anything wrong with that.”

I was blessed to have a teacher who was patient and understanding of my illness. Dancing proved to be a positive physical outlet for dealing with the emotional stress of living with Sickle Cell. It also built within me a self-confidence I didn’t have before. The person I am today is largely due to those years of dancing.

Now let me say, as you explore what your physical capabilities are, don’t twist my words or use them to the extreme. Be wise. Don’t do things you know will hospitalize you or truly endanger your health. For instance, if your doctor tells you the deep-sea diving trip you have planned would put you at high risk for suffering a stroke, you’d be wise to listen; unless you wanted to permanently swim with the fishes.

My point is, try new things. Don’t be afraid to live your life. Discover what your limits are, but use wisdom in doing so. Maybe a small crisis now and then is worth the fun you want, and need, to have. Sometimes that little bit of enjoyment will be necessary to maintain your mental health. In making those choices, always listen to your intuition and use good judgment. That often includes trusting the guidance of those who love and care for you most, like your parents and doctors.

By trying new things and learning for yourself what the boundaries of your health are, you may discover you’re able to achieve more than you thought possible. You may also discover a talent you didn’t know you had or find an enjoyable outlet that will help you cope with life. Remember, often the only limits you have are the ones you give yourself.