And yes, even when you feel like you are dying.
Scleroderma is a progressive, degenerative and fatal illness; but the fatality part can take decades. When I was first diagnosed with scleroderma in 1994, I was expected to rest and wait and see if I lived through it. I was discouraged by well meaning friends and family to buy and do whatever I wanted, because it was said, but implied that I was going to die. And I did those things. I spent money I should have saved or invested, but luckily someone did say something to me right after my diagnosis that I have kept in the back of my mind for twenty years. It was my boyfriend at the time. He went with me to the VA hospital doctor’s appointment and was in the waiting room after I was given the news I had scleroderma. During our conversation on our three-hour ride home to La Crosse from Madison, he said, “Karen, you can be hit by a bus tomorrow. You don’t know if this is going to kill you.”
And he was right. Of course I’m going to die, but because I had this horrible diagnosis it did not invalidate that I felt pretty normal except for the Raynaud’s in my fingers and toes. I could still exercise. In fact, in 1996 I moved into an apartment down the street from an amazing running trail and began running. I wasn’t dying. Horrible things were happening, like the scare I had the first time I had to be admitted into the hospital for abdominal pain in 1995. I had crippling abdominal pain and after the usual appendicitis and ectopic pregnancy diagnoses were ruled out, the next step was surgery. That was the day I learned that Raynaud’s can happen anywhere in one’s body. Well, not everywhere. Just the blood vessels of any kind. The team of doctors, after much deliberation were now trying to rule out the blood vessels to my colon were not in a severe Raynaud’s attack and caused a part of my colon to become necrotic. CT scans were run, and as we waited for the results, the team was preparing for surgery because if that were the case, part of my colon if necrotic, would have to be removed. I was waiting for test results to confirm a diagnosis that would require surgery. If surgery was necessary, I was going to be put under anesthesia not knowing if I would wake up with a stoma and colostomy bag.
My room mate brought me to the ER, but she had to go to work. I was alone, but I soon found out I wasn’t completely alone. This also may have been the event that has endeared the state of Wisconsin to me, and it’s people.
For those of you who may not know, I moved to Wisconsin with my boyfriend to go to nursing school. He was from West Salem, and his family consists of the nicest people I know on the planet. By the time of this event, we had broken up. Even though we were no longer together, his family still treated me like family. If I needed something, they were there to help. They were my “family” in Wisconsin, so I was never completely alone. The luxury of that relationship and not having blood relatives nearby, which I learned from this experience, is that I did not have to watch a relative sit next to me for hours, feeling helpless and frightened. Sure, I felt helpless and frightened. But for some reason, when someone is with me when I go to a medical appointment, test or treatment, I feel responsible for their feelings. I feel I need to comfort them. Maybe that’s how I avoid feeling the fear and helplessness, by focusing on a person I am with. I was alone in my hospital room. I think I had called my mom. But I was in the hospital, alone.
This was probably the longest I have ever waited for CT scan results. Sure, the test was STAT, but I was in excruciating pain, and pain medication could not be administered until they knew what was happening. You might be thinking: How cruel! They let me lay there in pain. I have a very high tolerance to pain, and I rarely cry from it. This time, I was sobbing. But, because there was no other way to know what was going on inside me, pain was the messenger. I needed to feel if the pain would travel, or progress to a larger area. Yeah, sure that sucks. But I use pain all the time to let my body tells me what’s going on, and that has served me well these past twenty years. It’s not easy to do, but I’ve done and continue to do it. Don’t worry, I’m not crazy (as far as you know). As soon as pain as a tool is no longer needed, I will take a morpheme injection without hesitation. But while I waited for those results, time seemed to stand still. There were times the pain got worse or less worse, but nothing below an 8 on the pain scale.
Finally, my doctor came in with the CT film (This was the 1990’s) and a nurse holding a dose of morphine. As she injected the shot into my IV, the doctor told me Raynaud’s in the blood vessels of my colon was ruled out. He showed me my abdominal CT scan and my ovaries had these spots all over them that looked like exploding firecrackers. I had fibroid cysts, and they were bursting, causing severe abdominal pain. It wasn’t caught on an ex-ray, because it was all blood and it was like Disneyland fireworks in there. I think if I took a stethoscope to my abdomen, I could probably have heard Julie Andrews singing, “If You Wish Upon A Star”.
I had been taking Depro-prevera shots for about a year, and stopped when I broke up with my boyfriend. I hadn’t had a period in months, so my eggs had been on standby. So hearing about these bursting fibroids, I pictured my eggs fleeing my ovaries through the wrong exits and exploding. (Pandemonium and mayhem. I wish I knew how to animate, this would make a great cartoon. I would call it: The Great Egg Exodus.) So I got to go home with my colon intact. It was the first time I learned loosing parts like my colon were possible, but you never know. Here I am nearly twenty years later with an intact colon.
What endeared Wisconsin to me, was my small community. I had no family, but I had people who cared and showed it. My roommate brought me clothes. Friends from school stopped by to see if I needed anything. My ex-boyfriend stopped by to check on me and his sister called to see if I needed anything. As I spent the next few years in Wisconsin, my ex-boyfriends family continued to invite me over for holidays, weddings and dinner. I also had the privilege to get close to his sister Roberta, while I was her roommate.
I want to tell you about Roberta, because although we barely kept in touch over the years- well, I’ll just explain. I always thought that long after I had died from scleroderma, Roberta would have raised her family with her husband Chris, and live a long life watching her grandchildren come of age and showering them with the love and kindness she seemed to flow from the infinite source that was her spirit. A few years ago, Roberta passed away from metastatic breast cancer. As I write this, I am still puzzled I am here, and she is not. I have no words to share about the anger and confusion I feel over that. I know, I’m a writer and I’m supposed to have an imagination, but some things are too deep for me to bleed onto this paper. It only confirms my belief that Billy Joel was right: Only the good die young.
My point is that you may be diagnosed with something that might kill you, but there is a possibility it won’t. I read blogs and Facebook statuses of many scleroderma patients who are absolutely hopeless. I read the phrase, “It’s in God’s hands now.” Look, that may be true, it may be in God’s hands, but the passiveness of that statement disturbs me. I have read people going to the ER for things I have been there for a ton of times, and saying goodbye as though they don’t expect to return from the hospital alive. I’d be a liar if I said I didn’t have those thoughts sometimes, but they have become rare through the years. When I am being admitted for something or in an ER, I shift my focus from my fear of the worst to what I am going to to do when I get out. I plan for my recovery, and I plan to get back to my life. Of course, it has taken me years to get to this point. Perhaps I am overly optimistic because I have lived through so much. I’m not sharing this to tell patients everything I do is right. It’s not. Everything I do is right for me. But I am sharing this because I want patients to know the possibility of surviving the worst. I’ve had well meaning doctors and family tell me to just rest all the time and not do anything I think might be hard. To let people take care of me. And during the really bad progression of the disease, help was necessary. But I always believed their help would be temporary. I’m not telling you to ignore people encouraging you to take care of yourself. I am encouraging you as a patient, to try to do things that challenge you. even if it’s walking. In 1999, I went to Disneyland in a wheelchair, and not just to get to the front of the line. I’ve rented motorized scooters. When I go now, I walk around and wait in line like everyone else. I play at Disneyland, the beach, and anywhere I can. I even tried zip-lining. I said tried. I got the gear on and when I found out there was a rope course, I got the hell outta there. My hands couldn’t take that. But, maybe someday in the distant future they will. Okay, that may be a little pie in the sky. How about being able to open my hand, so that I can finally rub my son’s back with my hand and not my wrist and back side of my fingers. Now that’s a goal I can accomplish. But in order to do anything, I have to believe in the possibility. Of course I’m aware it might not be possible, but I won’t know until I try.
My point is, don’t live like your dying. Sure, jump out of an airplane wearing a parachute, but do it because you want to, not because you got a diagnosis and it’s uncertain you are terminal. Don’t live like you’re dying. It’s foolish. Live like there’s possibility. Look, we’re all going to die sometime. We have no control over that, but don’t give up because you may have to fight hard to live. Because the possibility you won’t die right away, is a very real possibility.