July 19, 2013:
Today, my white cell count is now officially "too low to count." In the days following my stem cell transplant I have been anxiously awaiting my blood counts to drop. The sooner they drop; the sooner they come up. The sooner they come up; the sooner I go home. You get the idea.
Other than being at a greater risk for infection, the plummeting blood counts are wreaking havoc on my energy level. I have been advised, cautioned, and directed to listen to my body over the next couple of days. So, as I let out a sigh of submission, I vow to listen to my body. Even though I had planned to take both a morning and an afternoon walk and catch up with some of my friends in the hall; I will listen to my body and accomplish these tasks when it is time. The bad news for those around me is that while my body is resting my brain and mouth never stop moving.
This journey was started by the need to find some physical healing, but it has steamrolled into so much more. By coming to Chicago, I have had the opportunity to meet and connect with people from all over the world who are gathered here for one mission-Taking our life back. There is a woman from Australia who has MS that is about one day ahead of me. There is a man with MS from New York who has, as of today, been accepted into the transplant study. There is a man who lives in Chicago who has seen the success of this study and is hoping for a confirmed CIDP diagnosis so that he can begin his healing. Lastly, I cannot forget my hospital neighbor, Ben.
Ben is from outside of London and has suffered for about 10 years with this disease. He is running about one week behind me in the study. When I met him it felt like I was seeing a long lost relative. For Ben, I am not sure it was the same, but he did say that I was only the second CIDP patient he had ever met. Our stories are eerily similar in the fact that we both have beautiful wives and two daughters of similar age. Ben plodded along for years not being able to get the medicine he needed and having to wait over two years to see a neurologist. Like me, Ben was no longer willing to just sit idly by and let the disease take over his life.
Everyone has difficulties in their life. No one difficulty is more trivial than the next. What may be hard for me may be easy for you. These are all great statements and ones I have used to make excuses for myself. Chicago has allowed me the opportunity to make no more excuses. A spark has been lit in me to reach out and lift people up. I no longer am willing to hide my disease for fear of not fitting in. I write these words, not only for myself, but in the hope that one person may find comfort from my life.