It's that time of year again. The time where I reflect on how fragile and short life really is. And not because it's cold, or dark, or looking like winter. It's also not because I don't appreciate or value life. On the contrary, because I've seen first hand how fragile life is, I hold on to it and realize how much I have to be grateful for. At the same time, I also acknowledge the deep and personal losses that I have experienced in this month. My grief is selfish, but necessary. I am very much aware that this earthly life is nothing compared to the life we have with God in heaven. They no longer have any pain, sorrow, or tears.
That being said, I have a very difficult time processing my losses at times. For one thing, having a chronic disease is a source of grief in and of itself, and at times very difficult to process and deal with. Sometimes I become angry, frustrated and become somewhat of a recluse. I avoid people because I can barely deal with myself at times. My anger sometimes get projected at others and I become pretty miserable to be around. I have a difficult time relating to people, because I don't always feel like people can come close to understanding the way life is for me. And the only person who could come close that I have actually known is gone.
My Papa, who was my un-officially adopted spiritual father, had a neurodegnerative disease called Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease. He was diagnosed when his children were 3 and 4. Within two years, he was almost completely paralyzed and needed a tracheostomy and ventilator to keep him alive. I met him when I was 15 or 16 years old, and we instantly had an incredible connection. Over time, we became very close and were able to talk about just about anything. At that time, things became worse with my own disease process and talking with him about things really helped me to deal with things at least slightly better than I had previously. He gave me a level of love and support that I hadn't really experienced prior. But Papa's story ended the way everyone's story with ALS ends. He died.
And my point isn't that he died. My point is that he suffered greatly but also with great courage. But after 14 years of fighting ALS, Meningitis took more of his vision and eye control. He was dizzy much of the time and overall pretty miserable. In October of 2010, Papa made the decision that he was going to turn off his ventilator. The ventilator was something which he was totally dependent on for life, as he was unable to breathe without it. Despite that, ALS took everything from him anyway. Because that is what ALS is and that's what it does. Sometimes I get so angry because he's gone. I miss talking with him, I miss the hum of his vent, the clicking of his computer, his smile and the comfort of knowing he was there for me. I know that he is still here for me now, but in a very different way. I miss him, all day, every day. And I have since the day he left four years ago.
And Papa's death wasn't the end of my long grief journey from losses caused by death. Just 13 days later I lost yet another precious person from my life in earthly presence, but that's another blog post entirely.
With that being said, I am not doing well lately at all. I have had countless days of pain, fatigue, and being unable to eat much at all. My PCP has been on vacation and will be back next week. However, he is still at a loss of what to do with me. So, looks like we will be heading to Georgia to see Dr. Fran Kendall who specializes in Mitochondrial disorders. I hope and pray my efforts to stay stable will not completely fail. I also pray that Dr. Kendall will be able to shed light on what's going on with my body.
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