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I started going to the Clinic with my parents as my mother’s disease progressed. It was grueling. It began with the long van ride (with no shocks) and ended with us all in a glazed-over state of exhaustion. Yet, my mother really did appreciate the work of the many doctors who attended to her. She turned “on” when each one of them walked in the door. I think she wished she had a microphone in hand, as I am sure she had (as she often said) a “three-point sermon in her pocket.”
What she hoped was that her whole life, especially these visits to the Clinic, would bring glory to God. She joked that the time was all about her. Yet she knew that God was about bigger things, and she was given a front-row seat from which to observe his touch over so many people, details, and circumstances.
–Tricia
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The first word that comes to mind today after yesterday (Friday, May 3rd) is “exhaustion”: physical, mental, and especially emotional. Yesterday was my three-month ALS doctor(s) clinic visit. In previous blogs, I mentioned the visit lasts a minimum of four hours because of the multidisciplinary model the UC Davis ALS clinic uses. Before I go further, it is important to understand Cliff and I both appreciate the process because we feel heard, cared for, and never rushed.
During the visit, we see a plethora of caring people. Yesterday, we were seen by three neurologists, two dietitians with an intern, an occupational therapist, a nurse, a researcher, a medical supply consultant, a psychologist, and representatives from the ALS and Muscular Dystrophy Associations. One at a time, they meet with us, ask questions, and test my breathing; swallowing; talking; leg, hand, and arm strength; mental attitude; and even take some blood. They are supportive and encouraging as they offer ideas and suggestions as to how to make this journey a little easier. It is not a secret my body is shutting down.
Yesterday, Dr. Joyce, one of my favorites, gave me two challenges: to not dwell on feeding tubes or vents for the next three months since they are not immediate problems (which is nice to know); and also to know at some point we will need to have a plan for my final stages of this disease (home or hospital, caregivers, equipment, etc.) which is a little mind-boggling. Shouldn’t we all be doing a little of that now, or am I the only one?
Most days, I can live in a semi-state of denial because Cliff and I keep busy. Having the power bike allows me to go almost anywhere in public because of ADA regulations. Another factor that plays into my fairly decent good attitude is good friends.
However, when I am at the clinic, there is nowhere to run and hide. I am forced to face the realities of my disease. They, them, those people ask too many questions trying to get to the root of where I am physically so we can be proactive with my health plan. It takes everything I have to keep a smile on my face and a positive outlook in my soul.
The minute I say that, about the smile and positive outlook, immediately everyone (yes, everyone) feels obliged to tell me it is okay to be sad about this. I know that is true, and I do have my moments of sadness, but I really don’t want to spend much time there. Sadness, depression, and grief are downward spirals that go nowhere and help no one.
You see, my life purpose has not changed just because I have this disease. It just looks and feels different than I planned for at this point in my life, but then…I am not the One making the plans. I choose to trust God with my journey and believe it is as much about others as it is about me. If I am sad, depressed, or grieving, I only focus on myself. I do not want to go there. It is quite possible you will have to remind me of this later, but for right now, I am okay.
Are you?
–Susan
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