We all have something to say. My job, my area of specialization, is to help students who can’t verbally communicate with an alternative or augmentative (AAC) means of communication. It is an honor and a privilege to be able to do so. I help them find their voice. But sometimes, I lose mine in the desert. My path is not straight, I stumble and fall, thirsty and tired. So very tired.
I have held back for a long time speaking about all the pain I am in. Not just the physical pain, but the emotional pain. Sometimes, most of the time, the physical pain is easier to deal with than the emotional pain. I have dealt with depression, but that isn’t the pain I am referring to this time. It is the pain of the loss of a normal (typical may be a better word here) life. The pain of not being able to get done the tasks others do without thinking. The pain of not having the energy to spend with loved ones. The pain of not being able to travel easily. The pain of always knowing you are letting others down. The pain. The scream. I related to that painting long before I got photographed next to a replica of it. My voice, it is screaming. But you can’t hear me. Just like you can’t see my illnesses.
In chronic illness, there is a never ending cycle of grief. It doesn’t necessarily follow a more typical pattern of shock/denial, anger, bargaining, depression, acceptance. It cycles through all of those feelings, and more, and not always in order. Denial was a big one of mine, I didn’t deny I had fibromyalgia or Interstitial Cystitis, I denied that it created loss for me. I had them, but didn’t allow for the profound way they effected and changed me. These days I toggle mostly between anger and sadness (it really isn’t depression, been there, done that, have the T-shirt, sadness is different). The past year or so was a lot of sadness, both losses personally (my grandfather and one of my kitties), and the realization of losses due to illness. But now I am hitting mad, per my previous post. And mad is the hardest one of all. And my voice is screaming. But you can’t hear me.
I am blessed in all this though, because God can.
A voice of one calling:
“In the wilderness prepare
the way for the Lord[a];
make straight in the desert
a highway for our God.[b]
4 Every valley shall be raised up,
every mountain and hill made low;
the rough ground shall become level,
the rugged places a plain.
5 And the glory of the Lord will be revealed,
and all people will see it together.
For the mouth of the Lord has spoken.”
Isaiah 40: 3-5 NIV