I call it "Situational Purgatory." The time span in between what could be and what will actually be. We have all been there - and it is not a pleasant place to be. For reflective people like the Baptist Rabbi and myself, we spend a great amount of time considering all the possibilities of a situation and what our reaction will be to each. Times of purgatory leave our minds in a state of confusion wondering what the reality of our situation will ultimately bring. Will it bring happiness or devastation? How do we prepare our minds for each so that we can adequately handle the final news that is delivered?
Dad has lived in such a purgatory since November. We don't realize what a large part of eating is to our social and emotional life until it is stripped from us. Dealing with aspirational pneumonia, Dad was told that he was aspirating on every kind of food/liquid, regardless of its consistency. A feeding tube would need to be placed in his stomach so he could receive the calories and nutrients that he needs to sustain. The "carrot" of therapy was dangled in front of him. There was a small chance that therapy could rebuild some of his swallowing muscles and the tube would be temporary. However, due to the degenerative nature of Parkinson's, there was also the chance that this was irreversible. Thus, he entered the state of situational purgatory. The first round of home health swallow therapy proved to be unsuccessful. The follow-up swallow test showed "no improvement." We were all devastated at the news. We had planned to take him for gravy and biscuit on the way home from the test. But he was unable to move to the positive side of this situational purgatory. My family was at a loss of words to say to him. For control freaks like me, I wanted to fix this situation, and this was simply beyond my control. The elevator stopped and he would remain in purgatory for yet another length of time. Would he ever be able to eat again or was this his new reality?
A new therapy was introduced called Vital Stim that showed some slight hope that it would help. A wonderful group of people from First Baptist made sure that he had transportation to his therapy while I worked. A HUGE thanks to them! Another six weeks was spent trying to grapple with the realities if he would be able to eat again or if the feeding tube was his permanent reality. I am deeply saddened to report that he went for his follow up test yesterday. Lori, the fabulous therapist that worked with him, walked out with tears in her eyes to report that there was, yet again, "no significant improvement." It appears as if Parkinson's has hit this area directly. He has developed a hard swallow, but his epiglottis has completely stopped working. Therefore everything that is swallowed goes into the lungs as well as the esophagus. We are to the point of no return. The purgatory elevator did not land where our prayers had repeatedly requested.
As I tried to pick up the pit from my stomach and determine how I was going to attempt to encourage the well-loved Baptist Rabbi, I was at a loss of words. Honestly, some specific words came to mind, but they would not be appropriate for this blog!! :) However, as the situational purgatory ended and we were informed of his permanent reality, I was once again surprised by the wisdom of my father. This is a summary of the words that he said to me, "If this happened to me when I was 56, this would be devastating. But I am 74 years old. I can't complain about the life that has been awarded to me. Many of my friends were never given the opportunity to see 70. If I can live 5 more years with the tube, it will be a huge blessing. If I can't, I still have been abundantly blessed." My anger toward God immediately was tempered through the Baptist Rabbi's wisdom.
He has always taught me that life is not fair. He has also taught me that prayers are not always answered in the way in which we choose. Ultimately, it is God's plan, not our own. Maybe this time of purgatory was part of the plan. Maybe this time allowed him (and us) to have time to reflect upon both paths and prepare our hearts and minds for each. My prayer was not answered the way in which I had begged, but I was amazed at the peace that covered the Dean household yesterday with the delivery of this new reality.
While situational purgatory is not a preferred place for us to be, it must serve a purpose. We will deal with this new reality with the love and support from a wonderful community of friends and family. As he continues to wrap his head around this new reality, my prayer is that he can continue to feel God's peace and continue to embrace the many wonderful things that life still has to offer.
As Alan Zimmerman, a member of our Parkinson's Support Group says, "Do as much as I can for as long as I can." The Dean family will try not to focus on what Dad can no longer do and praise what he is still able to do and embrace it as long as we can! I encourage his friends to come celebrate with him, as there is still much life to live!
Even when prayers are not answered the way in which we wish, God can provide peace in our new realities. I guess situational purgatory plays a role in helping provide that peace. My prayer is that God continues to show his grace and peace in the days ahead.
Update on sweet Marie: Mom also suffered aspirational pneumonia this past week and spent several days in the hospital. We spent a few days in situational purgatory with her as well as they feared she was also aspirating. However, her swallow test came back great and she is home trying to regain her strength. She never ceases to amaze me with her willingness to fight. We have joked for years about her "feisty" personality. It is this fabulous feistiness that allows her to do so well despite all the health issues that plague her. She is one amazing woman.
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