My mother has been dealing with a lupus, a chronic disease for about 16 years. Lupus is an autoimmune disease most easily described as the body attacking itself. Normally the immune system reacts and attacks a virus or bacteria like when we get a cold, flu or a cut. People with lupus have this happen internally just because.
To put it in context – Seal has lupus, it manifested in skin ulcers. The scars on his face are evidence of a lupus flare(s) and luckily he has been in remission for many years. Aside from skin problems lupus can also effect the joints, pulmonary system, even the brain. Unfortunately, my mother has not been as lucky as Seal. She has had to deal with a little bit of everything. She is in pain more often than not. And when she has a flare all bets are off. She constantly battles with 103 fevers, pain, loss of appetite and it is not a pretty sight.
Three years ago my mother had a major flare. As her only child I took on the role of caregiver and I wouldn’t have it any other way. For thirty days she was hospitalized and each day had a fever so high that we used ice packs to cool her off. During the course of that month we dealt with the inability of the doctors to determine if she was having a lupus flare or something else. One doctor thought it might be tuberculosis so they put her in isolation. She was subjected to taking the TB drugs which have horrendous side effects – and we knew it was the lupus. On a daily basis we joked that we wanted to see Dr House. Only he could solve the mystery and relive my mother’s suffering. But unfortunately there was no brilliant doctor with cane in hand to save the day.
One day I called her room and she was barely coherent. I went to the hospital to discover her trying to get out of the bed –her eyes rolling to the back of her head and the doctors staring with perplexed looks on their faces when they finally arrived. That day my mother lost her ability to walk. She could barely talk and her motor functions were horribly decreased. I had witnessed my mother having a stroke but it took a week for the doctors to finally reach that conclusion. After that things became progressively worse.
She had 3 blood transfusions and was barely making it. The look in her eyes conveyed her weary soul. And I knew her wishes if her heart stopped and as her health proxy I had to stay true to her desire. My aunt called me at the hospital (where I spent most of my nights and days) to ask me about my mother’s Will. Not wanting to upset my mother with tears of anger or fear I immediately ended the call.
Eventually she got a little better and with the help of a physical therapist and a walker she began to walk. After 30 days she had enough and said she wanted to go home. Since the doctors were doing little more than giving her Tylenol to break the fever and TB was ruled out, everyone agreed she could leave. It seems home was the respite she needed. With rest and exercise the flare finally passed.
Flash forward to today. As I write my mother is suffering from something – it could be another flare. She has already been hospitalized for an infection and has progressively lost weight. For her nothing tastes good (thrush can do that) and she has had the inability to keep anything down- including her medication. This has caused her body to go into withdrawal and the cycle starts again. The good news is that her appetite returned yesterday and she will probably begin to gain weight.
She is supposed to visit next week to see the baby but living a plane ride away that is not going to happen. She is too weak to walk let alone travel alone. I know she wants to see her grand baby but we will have to travel to see her. All of this is background for my moment of catharsis.
I am frightened. And I have only two responses to fear: fight or flight. Three years ago I chose to fight. Today I am choosing flight. To understand this you have to know who I am. I am the “emotional” one in my family. As long as I can remember people have hidden things from me because I will drop everything and be by the side of whoever is in duress. Many times becoming an emotional wreck in the process.
Living miles away from my mother at this juncture I maintain my sanity by retreating into my corner of the world. As each day passes I fill it with activity. I write my blog. Do consulting work. Make cakes. Care for my family. Repeat. And in the back of my mind I hear the tiny voice that says, “be prepared.”
Tearfully I admit that I am not prepared, I will never be prepared and I stay distracted to keep my mind from going down that road. I am doing a disservice to my mother but my sanity is contingent upon my denial. This is the space that I am in as I write. I will tuck this away until I am brave enough to face it again head on. Do not be quick to judge. Until you walk a mile in my shoes you will never know how this feels. And trust me. I judge myself the hardest anyway.