A Cautious Joy

Hello and welcome to another week at Humbly Courageous. If you are new here, I’m glad you stopped by. 

The rhythm of life. When you think about that, do you picture a constant, steady rhythm or a rhythm that is ever changing, and one where you never know what will be played next? I guess the latter is the true statement, but I do love a good steady rhythm. It seems like once one fire is out out a new one is already burning. You would think we would get used to that, but somehow it always comes as a surprise. I've always struggled fully living in the joyful moments because a part of me is always waiting for the next challenge that lies ahead. Not a great way to live, but I think the life I have lived with a disability has somewhat cultivated that. The nature of the beast. I would say I live in a state of cautious joy.

Writing brings me comfort 

It’s not that I haven’t had days where my weakness seems more scary than usual. I have. I think those who live with Muscular Dystrophy can certainly relate. Also relatable, I think, would be the frustration that comes when you are trying to describe this weakness to others who just don’t understand what you are saying. They are comparing what we are saying to their reality of what their tired muscles may feel like, because like us, it's all they know. It’s not the same. Also important to note that, for me anyway, when I discuss a setback with someone, I have no expectation that they will be able to “fix” it. I just tell about it because it’s a scary thing to keep to yourself, especially when living with a progressive muscle disease, and it can be comforting to share the fear. Often times, it can backfire though and the person I tell often starts to come up with every idea under the sun of how I can fix the weakness. They want to help. If only a stretch, or some heat and ice, a yoga session, deep meditation, or a visit with the chiropractor could take away my weakness! I would have done that long ago. Oh wait, I have done all of those things and while I enjoy those things they don't “fix” me. It can be a source of contention because I get frustrated and feel guilty about not being able to self-heal my genetic condition. I urge you to proceed with caution when speaking like that with someone who has a disability. That can be very mentally damaging.

Recently, I dealt with a rapid decline of strength in my left leg. It lingered for weeks. When this happens, I know the drill. Rest more than usual and it should be back to baseline the next day. But, that didn't help. My panic was taking over. I was terrified that was my new normal. Luckily, it seems to have come back around with maybe only a slight decrease in strength from my baseline. I am thankful, but I can't help but to think about what the next time may be like, or wonder when it's coming. I try to push those thoughts out of my mind and focus on the present, but truthfully it's nearly impossible. It's senseless to dwell on what is out of our control. A waste of our time, yet as humans, we often can't help ourselves. 

It is impossible to be positive all the time. It’s just not how life works. You can be a generally positive person, but at some point, life will pin you down, and the negativity creeps in like an unwanted visitor. Living with Muscular Dystrophy, the bad days can make it really difficult to stay positive. When that weakness overcomes you and swallows you whole, it’s dark, it’s lonely. Empty. Scary.

However, this week, I just keep having the feeling, be grateful. Don’t ignore your pain and your hurt because it will eventually surface. I wholeheartedly believe pain and gratitude can coexist. I can feel sadness and gratitude at the same time. I didn’t used to believe that, but I now recognize, I live it and I see others living that as well. As we head into Thanksgiving week, I am going to do my very best to humbly courageously LIVE IN THE MOMENT, taking in all the goodness that surrounds me in my life. Monumentally thankful, grateful for the gifts I have been given. 💚

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