Part 3 in the series I've been writing about the REAL side of chronic illness. It's getting down and dirty, vulnerable, and shows a more realistic-human side of being a young woman whose life was turned upside down by disease.
GUILT:
I would imagine that depending on the role one plays in the family, GUILT will come in many different forms. As the mother, the heart of the family, and the glue that held us together, guilt has been a very active component of my chronic illness. While I became sick without any fault of my own, it hasn't lessened my feelings of responsibility for the trauma it has caused my loved ones. After all, a mother's job is to protect her children and her family from as much harm and pain as maternally possible.
Nothing can tug at a mother's heart strings like watching your child hurt and knowing there is nothing you can do to ease that pain. To add insult to injury, 'YOU' are the reason the child is hurting! I have cried many a night at having to watch my children hurt, be afraid, or lead a different lifestyle because of my illness. In the beginning, it was much more difficult because it was all so new. The missed sporting events, school plays, special moments, birthday parties, family outings, doctor appointments, or daily carpools were all equally life altering for each of us. With time, the children became more acclimated to my absence, but their sweet attitudes still didn't make it less burdensome to me! I remember telling my doctor that I didn't care if I ever walked in public again, I just want to be able to drive my child to their daily commitments so that they didn't have to continue being 'abnormal'. No one placed this pressure upon me...it was given to me by my natural drive and longing to meet my family's needs. It has been, for me, one of the more challenging aspects of having a serious, chronic illness.
Going from being your spouse's other half to suddenly being their new caregiver would make anyone wince! Watching my precious husband go from being a husband and father to now being both father and mother, from husband to nurse, from cared for to caregiver has been gut wrenching. While it's all beyond my control, it doesn't hurt any less. I have to watch as his 'plans' and needs are put on the back burner. I have to watch as all the dreams, goals, and plans that we made go unfinished and most of them shelved permanently. We both had envisioned what our future would look like, and now our visions are nothing but a puff of smoke in the past. While I know deep down my husband would never want me to shoulder this guilt, it's still a very big part of my world. After all, it is MY disease that has changed our future, his world, our plans, and our family. Even the smallest things can bring on this intense sense of guilt. I know how much David hates to go to functions, church, or kids' events without his wife. I sigh a little each and every time!
Putting the role of wife and mother aside, I also had many other roles in life that I've had to curtail. The guilt of being a 'bad friend', an uninvolved parent in extra-curricular activities, the absent volunteer, the no longer go-to-gal, the always exhausted daughter-sister-aunt, and all my other roles in society that are riddled with deficiency. Despite the understanding of many, my feeling of culpability resounds each and every time I'm forced to admit I can no longer meet the expectations. I'm positive the feeling of guilt is often self-induced! It may have to do with my own desires and needs to meet other's necessities or possibly expectations. By nature, I am a 'Martha' (in both the Biblical sense, and the 'Martha Stewart' connotation). Removing me from all roles of care-giving has only made the guilt increase in intensity. After all, I was programmed to care for my family, and I loved every moment of it.
There is also a sense of guilt every time the medical bills come in the mail. If you have known anyone who was very sick for a long period of time, you know that financially, it can be an immeasurable burden on the family. As a sick mother, everything I used to contribute to the family has to be contracted out. The cooking, the cleaning, the driving, the planning, the decorating, the shopping: all things that we have to pay to have done for us. This section alone could illicit a whole new chapter. It's a tricky and intricate subject that I may tap into some other time.
How have I learned to deal with this extremely predominant emotion? Honest answer, I haven't been able to get this one under wraps, as neat and tidy as I have with other emotions. My counselor has been helping me talk through this one, somewhat. However, I feel that as long as I am a mother of young children and a wife of a man that I adore and long to care for, I will have this intense guilt that it was my body who failed our family. I could pretend that I understand there is nothing I could do to fix the problem, and I must yield to the knowledge that it is all beyond my control. But when the lights go out at night, I know that it is me-Melanie, that is sick and has changed everyone's world! I've worked very hard lately on not letting guilt be my guide. I'm learning that 'trying' to do things I cannot do, usually only makes me feel worse in the long run and makes everyone else's job much more difficult. Recently, I wanted to do something myself, so I didn't have to ask anyone to do it for me. It ended with my children having to care for me while I lay unconscious on the kitchen floor. The guilt got in the way! It also can produce more stress on me and on those around me. As I try to work through this in a healthy way, I realize it's all par for the course. I will not eliminate guilt from my repertoire of emotions, but I can, at least, begin to lessen it's repercussions by continuing to realize that I am much more than just my limitations. My thoughts often need to be redirected to what I am able to do, and how I can still minister to my family...even when I fall short of life's expectations. It will continue to be an evolving evolution!
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