Three weeks ago, I was walking down one of the sky walks at the Cleveland Clinic, with a friend who was so kind to go with me. I had just finished one appointment and I was headed to the next. We weren't in too much of a hurry as I had time between the appointments. This particular Sky-walks felt like it was half a mile long. As we were walking, I could feel the presence of someone coming up quickly behind me. Soon after my friend made a comment about the speed at which we were walking. I realized I had sped up to keep the person behind me from passing me. Call me competitive but it reminded me of the feeling that had been fine tuned during my many years of competitive running, so I naturally sped up.
I have reflected on that experience many times over the last few weeks and I have been constantly reminded of how amazing the body is. I haven't been able to be competitive for well over a year and haven't been a competitive runner since 2008. The thing that amazes me is that the skill of spacial awareness is still very much there and my body, instinctively, did what it had been trained to do. I know that if I were to pick up a basketball today, I would be able to dribble a ball, and I would be able to shoot it (although it would be ugly). The thousands of hours I put in years ago still have left their impression on my muscles. Muscle memory is an amazing thing but it can also be frustrating.
The frustrating part can come when your muscles have learned something that isn't good. I have heard from some smokers that have quite that it isn't just the nicotine that they miss but also the motion of smoking. Their arm is so used to bringing a cigarette to their lips that it miss the motion and the fingers miss, the cigarette that they used to hold. For me, it is my abdomen muscles and stomach that have acquired a poor muscle memory; Vomiting.
While I was at the Cleveland Clinic, I had a montomitry test done that looks at the motility function of the esophagus. They put this awful sensor up your nose and down into your stomach and It measures the pressure of the esophagus. After the standard test was done, they had me eat some food to see what my esophagus would do while eating and while vomiting. I was extremely nervous for this test to be done because I was afraid that I wouldn't throw up and the test would be a bust. We'll I didn't have that problem and I ended up trowing up the Cheerios that I had brought with me. Once I started throwing up. They monitored me for about 20 more minuets to see what would happen when I would sit up, and lay down on my back and side. After the test was done they removed the tube and told me that Dr. Gabbard would review the results the next day.
When I received his phone call, he informed me that he thinks I have something called Rumination Syndrome, which is the involuntary force of the abdomen muscles upon the stomach that induces vomiting. In essence the muscles of my stomach have learned, due to the vomiting from the SMA syndrome, that is what they are supposed to do.
At first I struggled with this diagnosis. I felt like this was something I should have been able to control and if I could have controlled it, then I wouldn't have had to put my family through so much. I felt guilty. I have had to work through that feeling and understand that this condition is INVOLUNTARY. It is not something I chose, I didn't choose to have SMA syndrome, I didn't choose to begin throwing up over 2 years ago, and I didn't choose for my muscles to imprint with the memory of vomiting. This is something that happened over time. Just like my muscles didn't learn how to shoot a basketball over night, it all takes time and it will take time for my stomach/muscles, to unlearn how to vomit.
I met with a Dr. today who is going to be connecting me with the support that I will need, to help me retrain my muscles and hopefully get back to being healthy again. She wants me to do a form of Biofeedback, which I have determined it is going to be like Physical/mental therapy for my diaphragm and stomach. It should be fun right? It was very nice to hear hope in this doctors voice verses the hopelessness that has been effervescent lately. She explained to me that there isn't a lot of research that has been done on this syndrome and that it is more common in children and adolescents then adults and so although some of my symptoms don't fit the "Standard" rumination, they very well could be related to it. She is very hopeful that I will be able to regain the ability to eat and get this vomiting thing under control. She did warn me though that it will take some time but her goal is to get me off of the feeding tube and as she walked out of the door she said "and I would be more then happy to take it out right here in my office!"
On a side note, to my friends who are familiar with animal, yes this is a syndrome named after ruminant animals, like cows and any animal that chews it's cud, but no I don't have more then one stomach and I would like to identify more with a giraffe. ;)
Thank you all for your love and support through this journey. I am praying that this is the answers to all the prayers that have been said on my behalf and am feeling hopeful for the future and to being able to regain my health once more!