Well, I certainly didn’t plan to be on hiatus this long. We have been a busy family since my last post. We gained a Daughter-in-Love in October and took a little road trip in December to bring our Sailor back home for Christmas. Medically, things have been relatively quiet for my husband, for which I am very thankful. Aside from a small procedure right before Christmas, he stayed out of the hospital the entire Holiday season, breaking a three year streak.
Which brings me to this day. Today I have been busy with my quarterly (actually, every four months, which really means twice a year) clean the dust off everything, top to bottom,”event”. A woman systematically vacuuming the dust off everything that doesn’t move is a thinking woman. Just me and my thoughts. I began on my husband’s side of the room, carefully lifting and dusting things: the boxes of blood thinners, defibrillator monitoring device, blood pressure machine….objects of a life spent fighting a chronic illness. I began to think of how our circumstances has slowly changed my overall attitude. That is not to say that some days I don’t have a crappy attitude…I do. I feel sorry for myself, sometimes even a little bitter that the prime of our lives is spent mostly in doctor’s offices and hospitals. But my attitude has been undergoing some subtle changes. For instance, cleaning my husband’s side of the room just 2 or 3 years ago would have made me resentful and angry. The alcohol pads on the floor near the garbage can, the syringes also there would have made me angry that he doesn’t care enough to throw things away properly. Now I see those items as a by-product of his vision limitations. I pick them up and throw them away. I just do it. Other chores that I do are done without comment. Taking out the garbage, even doing home maintenance, is just second nature now.
I began to wonder then, during all the years before the diagnosis, just how long he had been feeling unwell. What I could easily mistake for laziness could have actually been fatigue…..one of the symptoms of his illness. This made me incredibly sad to think of the years of misplaced resentment. Of course everything we have learned has been hindsight…this entire experience has been learning by trial and error. Unfortunately, trial and error blurs everything, making it hard to keep track of symptoms, etc. The puzzle pieces do not fall into place. There are too many missing pieces to get the clear picture.
I will use my mom as another example. I lost her just over a year ago. Although she died as a result of heart issues, she battled Lupus, another autoimmune disorder, for over 30 years. In later years of talking about her illness, she mentioned she thinks she battled it much, much longer, saying that in her teen years she felt sick pretty much all the time, and no one could figure out why. Now her hindsight tells us that it likely was Lupus, a disease that was ultimately “discovered” in the 1980’s.
Two examples of years where the blessing of good health eluded two very important people in my life. Two examples of being misunderstood. It would have been so much easier if I had just taken his efforts for what they were, and given him the benefit of the doubt. He did what he could….he was not one of those dads who played catch until sundown every day, but he certainly signed up to be Cub Scout Den Leader. He was there for our boys and me in his own way. If I had it to do all over again, I would have lost the resentment. My days would have been spent living in our own very real way, not in the picture perfect ways of my imagination. Letting go of something that is unattainable is the best, most liberated feeling in the world. Now, take a deep breath, figure out what is realistic to accomplish in your own life, then let the rest go. Most importantly: talk about expectations, or goals….whatever you would call it. Just get on the same page with your “other half” so that, together, you can write a new chapter of understanding. Focus on what works for you. Let go of the rest. And breathe.