There are a lot of times these days that I walk away shaking my head. Things that confuse and confound me happen daily it seems. I think that maybe my long years of marriage or the fact that I actually believed the words “for better or worse” made me a rather sheltered soul. The illness and stress that went with it caused me to have rather a razor sharp focus in crisis. I really wasn’t capable of panic. It was life as I knew it and I soldiered on through everything. What I think I really thought was that anyone with a catastrophic illness in a marriage, did what I had to do everyday. More often than not, I did not then realize the extraordinary amount of love, honor and respect that it took for my marriage to survive the struggle. As I am reminded by people who were present and some who were not this was certainly not a marriage of convenience.
I was in that God forsaken Wal-Mart the other day just to pick up some dog food and sinus medicine. (Yeah, that’s why I was there.) Actually it was about 2am so the store was almost deserted. I went there specifically in the middle of the night to avoid the happy greeter at the front door and all those damned people that congregate there during the waking hours. Now the disadvantage is that the good sinus meds are now kept by the pharmacist and he was at home snug as a bug in bed. Therefore I was actually looking at the ingredients when I heard a discussion across the isle. A man that looked to be in his 50’s was berating his wife for losing her glasses earlier that day. He told her she was careless and ungrateful for the things he does for her. I was so very embarrassed for her. So I quietly rolled my cart away so hopefully she wouldn’t know I heard what he said. When I got to the check out they were in front of me and I saw that she was in a wheelchair. Mr. Man is a caregiver to a chronically ill spouse. As I went across the parking lot I saw him lift her in his arms and lovingly put her in the car, tucking a blanket around her legs and kissing her before he shut the door. He loves her. I thought about the argument and I thought, that’s really not about those glasses. He didn’t say “the things I buy for you” he said, “the things I do for you.” That made me wonder if she had ever truly uttered the words “Thank you” to her husband.
If you have ever been the caregiver to a chronically ill spouse or family member, you know that somewhere within you, there is a feeling of being taken for granted. I am not too proud to say, that Richard’s illness wore me down emotionally. It exhausted me fighting everyday to have another day. If the catastrophic illness is of the nature of cancer or another terminal beast, I would assume the panic and the fright would override the fight or flee instincts. I have lost family members to cancer but they were long and horrid battles that did not span my 10 years. I cannot speak to how that feels. My experience is that of a war rather than a battle. We always had to fight another minute, another hour, another day and another year. There were days I did not think I could take another step. But I did. Day after day, week after week, year after year, crisis after crisis. I never allowed myself the illusion that it would be okay or that it would ever stop. It was my life. But, I also never thought that I would lose. I am not put together to lose. The professionals actually say that in living in and learning to function under extreme stress for an extended period of time can cause Post Traumatic Stress Disorder. I was on call 24 hours a day, 7 days a week for a little over 10 years. I would call that an extended period of time. I developed TMJ in my jaw and cracked the molars in my mouth from clenching my teeth during the 10 weeks in 2002 while we dealt with the failed pancreatic transplants. I know more about diabetes than anyone who isn’t a endocrinologist or a diabetic. I can actually identify the smell high blood sugar. I know that if you pass out and your vision goes black, it’s blood pressure, and if it goes white, it’s blood sugar. I informed Richard’s doctors of this phenomenon and they use it with their patients and primary caregivers now. I know the major hospital in Charlotte, NC better than the doctor’s do as I have given many an escort to a lost doctor at 3am who was a rat in the maze that couldn’t find the cheese.
I remember a lot of peanut butter sandwiches and Sunny D at 3am. I remember being scared so bad that my insides shook but holding myself steady and never letting him, my son or the people who depended on me see fear in my eyes. I remember looking into those beautiful green eyes and saying “It’s going to be okay baby” when I was certain of nothing but that whatever was coming was bigger and badder than me and that I had to stop it dead in it’s tracks. For lack of a better term, I strapped up for war everyday. I would never tell you that I did not have a sharp tongue or a short temper. I am human and flawed as a result. But I have censored myself when it was warranted and I raised hell like it was my job when the situation required a force of nature. It has effected every facet of my life and twisted my personality in such a manner that survival is just instinct. His family still relies on my calm and quick thinking when anything within the family is not right. His mother’s struggles with pancreatitis, his father’s lung cancer, his stepfather’s issues with diabetes and resulting kidney failure, my brother in laws two kids that had H1N1 last fall, and a Christmas where we were all lost. Family issues, legal issues and financial issues are brought to me. They are not gentle with me because I have always been gentle with them and had a strength that they could rely on. They love and respect me. They believe me to be of uncommon strength and unflinching vision. The mantle of matriarch has been bestowed on me by this family by love and respect, not through true kinship. But I am uneasy beneath this mantle because I am not blood related. What right do I have to have any say in the way this family runs or the decisions that it makes? Selfishly I sometimes think, if they look to me, where am I to lean? His parents, in their own way, have even told me that they understand that I must live. That I must find my way and build anew. For the first time in my life I can say that I am looking toward more than just one more day and it is overwhelming.
I have insulated myself from much of the things that go on around me but that gentleman’s words rang in my head. The times that it took everything I had to keep a civil tongue in my head echo behind it. I wondered if he had ever thought about going to talk to someone regarding his stress over the situation? Do their children help him? What must his days and nights be like? Does she understand what her illness is doing to him? All of those questions have danced in my head with the partners of my experience. Rich’s illness spanned from the ages of 31 to 41 for me. It took the bloom of my youth and left me with gray hair that I am far to vain for the world to see. It took my innocence and left me with a twisted view of the world that calculates how long battles and wars are made to last. As a result, I no longer believe in happy ever after and I am no one's damsel in distress. I am incapable of asking for help. From diagnosis to cure or death I can measure these things and never say what I know to be true. I can preach hope when I know that deaths cold breath is at your neck. It's just the cost of doing business in my psyche. In my mind’s eye, I always knew that I would lose my husband. But I thought it would be a long drawn out battle, not a swift event that leveled my life like Hiroshima ended World War II. I had no help with Richard through the years because to him and those around us, I was invincible. I would not fail because I am incapable of losing. I did not cry and I could not crack. These are the things that I wrestle with everyday now. I won every battle, but I lost the war.
