Not long after we first moved to Waco, Matt, our oldest, made a new friend, a young guy named Brandon. Brandon was a very bright, slight, small fellow. He was kind of geeky like our son, they simply liked the same things. After they got to know we each we learned Brandon had cystic fibrosis, an extremely debilitating and chronic disease that is often fatal to children and adolescents.
I marveled at how Brandon's family handled his illness. They never stopped him from doing anything, they encouraged him to participate in the things he liked and they were almost professional in how they handled the many exacerbations of his illness and his recurrent hospitalizations.
Matt had one severe event which led to him being in the hospital for about two weeks and I didn’t cope with the whole adventure very well. It worked against my minimalizing skills and like many others, having someone I loved in the hospital was major trauma. I was lucky and had Marty who took care of everything. All I had to do was nod and be present. When Marty got sick I lost my fall back position.
What I didn't know then and I do know now is you get to the point where your psyche, your emotions, your body can adapt to any situation. Humans are amazing in how we evolve to survive trauma, how we change and adapt to live through major upheaval. You may not like what’s happening, it may be completely foreign and frightening to you but eventually you begin to adapt and understand how to exist in a foreign and frightening world. That's how hospitals and the medical world were to me, a foreign and frightening land.
With Brandon’s family, with my family -- you begin to know how to live and continue a life while dealing with the trauma of a chronic, debilitating disease. You learn how to work your way through the medical milieu, you learn how to deal and cope with sick, you learn how to hospital. You have to, you have to learn, adapt or be completely miserable.
For me, I found being prepared for the hospital or impromptu trips to the doctor or the emergency room assuaged my misery quotient. For me, I needed to know I had everything organized and I had all of the information I needed at hand to help health providers provide health.
For Marty, and for me, I keep a current list of all her our medications; what they are, the dosage, etc. in my calendar. My children have a copy of my list. I keep multiple copies of Marty's to leave with the triage nurse, it helps at check-in. I also keep a copy of her power-of-attorney with me. I also keep a one-page document where I have listed all of Marty's diagnoses, her past surgeries, her allergies, her doctors (phone numbers and addresses), and insurance information. In addition, I have copies of the front and back of all of her insurance cards, it makes it easier for the medical administrators and it makes me feel prepared and in charge. Clearly I have control issues., this is not news to anyone who knows me.
We keep a bag packed for Marty with a change of clothes, various hygiene articles, a scrabble book, and just assorted other niceties. I tried keeping snacks in the bag but I just ate them late at night even when we weren't in the hospital, so I decided that was a bad idea. We keep the bag in the car so if we have to go late at night I pick up my calendar, I pick up a book we have created where we keep all of Marty’s vitals and away we go. The nurses love this information and the nurses are the people who make Marty comfortable so I want to help the nurses. We love nurses.
Marty and I have been married now for 34 years. We were closing on 30 years when Marty had her first stroke. I knew my Marty intimately, better than anyone knew her, I knew everything about her, right? Not really, I promise I paid attention but I didn’t know all of her medicines, I didn’t know when she had various surgeries, I didn’t know all of her drug allergies.
Marty was smart and kept a list of her medications. I found that in her billfold or I would have never known everything she took. I thought I knew her medical history until I tried to remember it. I eventually found all of this on Marty’s computer, it was a great help, once I found it. Don’t make it that hard on your person, make sure they know.
This brings up a key issue. You really need a person. You need a person who knows you, who knows your history, who can come with in 15 pounds of what you weigh and who knows what legal and maybe illegal drugs you take. Find your person, talk to your person, get over the embarrassment and get straight that they are your person and you will count on them to be your person when you are in need. Maybe you should make it really good person, it helps if you can trust them.
Marty has taught me a lot over the years. In her illness she has continued to challenge me, in her illness she has continued to educate me, in her illness she has forced me to evolve from the frightened, self-involved man I could be, in her illness we have both evolved and accepted our new life, our new normal. We are a testament to adaptation and if we can do it, if I can do it, anyone can do it. You just need to make like a Scout and "be prepared" and get yourself a person.