Sunday, November 17, 2013

Part Sixteen: Living with Chronic Lyme Disease: a long and difficult journey

Part Sixteen: Ten Lessons I Have Learned Along the Way 

1) I have learned that I remain valuable to God, myself and my family as a person, and not just as the functional role of mother or wife or work I perform. What I am able to do and what I am able to be throughout my life will continue to change (hopefully increase as well as decrease) and to accept this is critical to survive.

I believe all losses bring gains with them. Even helplessness has purpose, no matter how difficult it might be. In caring for my mother, I learned that her helplessness provided me with lessons as to how to love in a deeper and more real way. Perhaps my time to be helpless will do the same for another, though the timing of that will be God's decision and not mine if I can help it.

2) I realize that I am not ultimately in control of my life or death, but hopefully will have some control over how I accept it and deal with it and that will make a difference to others.  I have accepted pain and loss as part of life, and I believe that there is redemptive value in suffering . I thank my father, mother and brother, as well as Mother Teresa, Pope John Paul, and others whose example strengthens me!

3) None of us can pick our death process, but we can alter it somewhat by the care we choose, and I hope with as much as has been possible, to have changed the course of my illness and death. The MP has high risks, but I prefer taking the risks to arrest or change the course of my illness, rather than to give up and into what was inevitably the downward progression of my illness. I believe that maintaining a positive attitude and hope are everything when it comes to fighting illness. Ongoing learning as well as prayer does this for me.

4) I don’t assume what my family will or will not sacrifice for me and my care.  That decision of commitment is their’s to make and not mine. I am, however, grateful for the support of my family thus far in all that I have struggled with as well as sought to accomplish. I pray that my strength in facing whatever I need to face will be an example and source of strength to them in facing the illnesses and decisions in their lives. That might, in fact, be my greatest gift to them.

5) My girls, having acquired Congenital Chronic Lyme Disease from me, is a good reason for me to be a guinea pig for scientific research for the betterment of medical treatment for the next generation of Lyme patients or those with chronic inflammatory disease. I hope that my participation in, what I consider to be, the next leading edge of treatment of chronic inflammatory diseases will in fact make someone else’s journey easier than my own, most especially the journeys of my own daughters.

6) I have seen that chronic illness debilitates versus kills quickly.  It is my goal to maintain what function I can for as long as I can, for that, to me, is what it means to live and die with dignity. Giving into illness robs us of what function we might be able to preserve and it is important to me and to my family to preserve whatever functioning I can.  I often joke about still being able to feed myself and wipe my but. There are no tasks too small to take for granted!

7) I pray that I can preserve what brain function is left to me despite several brain lesions caused by my illness. I value others and being able to read, write and communicate with them means that I can practice what I value. Pursuing on-going treatment is a good investment in keeping this damage to a minimum.

8) To euthanize myself is not an option for me—I believe in living or dying according to what God has in store for me and I am hopeful and trusting that the cost of my care will remain reasonable and affordable. I am committed to working at this goal.  This means being a careful consumer of health care. Tests or treatments that aren't likely to maintain or improve my care or contribute to what will help my girls should be done only with careful consideration as to its gain.

9) I learned in caring for my mother, that long term end-of-life-care is so expensive, that it can deplete most people’s financial resources. On my worst days, I will choose to fight my illness to eliminate or at least shorten the amount of time I might need this sort of care and thus be as small a burden to my family as possible.

10) I read on facebook once that a chronic illness is like holding a glass of water.  For a few minutes, is no big deal, holding it for half an hour, a bit inconvenient. The longer one has to hold it, the more tired, and frustrating the experience, and for a very long time, it can be likened to torture. The same can be said for having or supporting another with chronic illness.  Support given short term is easier than long term support, and the more care required, the more stressful care-giving can be. It is important that we all set the glass down as best as we can from time to time, making “holding it” or “caring for another” tolerable or even a learning experience versus a torture.

There are good lessons to be learned by experiencing an illness or dealing with someone that is dealing with chronic illness. The more that I can do for myself, however, the easier on all those around me. Setting down the burden of my illness is a spiritual activity that I will practice and  it is important that I encourage others to do the same with my illness, their own or for caring for those that they love. Stepping away from it as best as you can in either mind or body will help to maintain mental and spiritual well-being and freshness to be better able to better cope and deal with it when you have to.(To be Continued...)

(The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)