Posts tagged ‘phantom limb’

May 20, 2011

Raise your glass

by Living with RSD: what comes next?
Raise your glass

Raise your glass

Don’t adjust your clocks. It really is 5 in true morning. Insomnia strikes again. I recently saw a newscast that talked about momsomnia about mother’s who don’t sleep because of household worries. I have the not so unique qualifier of living with a disability added onto that. Pain wakes me up. I am robbed from sleep when it’s time to take a new pill, to turn over because my incisions are hurting or because my dreams betray me and remind me of the loss that I’m not supposed to talk about. You see, when colleagues and family ask how I’m doing, they want me to be okay so badly that I don’t have the heart to tell them the truth. But, to my unknown readers and the entire web word, I will give you the truth that I can’t tell them. My body is healing, undoubtedly. But, I realize that I no longer have control of this body. My RSD has taken over. I can’t wear the shoes that I want, the beautiful heels that are a symbol of days gone by. I can’t type some days because my hands are shaking so badly that I can’t hit the correct keys. I can’t walk some days without falling. People will tell you that they are there to pick you up. They aren’t. They are there to hope that you get up on your own. Doctors have discharged me, only to say that I have they have done all they can do. The cruel reality is that this is true. They have. But they haven’t returned me back to normal. This reality is supposed to be my new normal and I fight it with everything that I know how to do. This isn’t the reality that I want. So, what’s girl to do?

Sleep evades me just like my beautiful Calvin Klein peep toe sandals with the 4 inch heel. In my sights, but something that I can’t have. There is no one in control. The RSD took that from me. Every question, every decision that I make, now has the question “Will my RSD let me do this, let me wear this?”.

Medical specialists have long talked about phantom limbs. It’s a medical condition seen in patients who are recent amputees or who experience sudden paralysis due to a trauma, such as a stroke. Patients still can feel the arm or leg that was removed, but their mind hasn’t caught up with their body. They still reach for things, try and use it, and believe that it’s there. I feel like I have four phantom limbs, but they are there. Everyone can see them, but I’m not in control of them. I remember the day that I made the decision for the first implant. My daughter reached out to hold my hand. I had extreme sensitivity to touch at the time. When she reached for me, the pain shot through my arm. My arm, the same one in which my mind wanted to reach for her and hold her forever, my RSD decided this same arm would swipe at her to push her away. She fell back on the sofa, shocked. She was 6 at the time. The worst part about it was that she said “It’s okay Mom. I’m sorry that I tried to touch you”. She wasn’t being snarky. She meant it. But, it wasn’t okay. I looked at her and realized that my ability or inability to cope with these changes in my body weren’t all about me. That was the day I decided to pursue these doctor recommendations. I don’t regret any decisions that I have made. I regret that I had to make them.

So, how do you heal….mind, body and soul, when your body can no longer be what your mind and soul believes and needs it to be? I don’t have these answers. Apparently, I have inherited my mother’s need to look at the silver lining. The secret is that no one, including myself, has the control over their body that they think they do. Otherwise, no one would be overweight, have diabetes or experience heart attacks or strokes. The difference between them and me is that I have the cruel realization that I’m not in charge. My RSD is.

To quote one of my favorite songs Raise Your Glass by Pink…
So raise your glass if you are wrong in all the right ways.