I still remember the first time I met my great uncle. I was about seven and very eager to meet the family that was in from the big USA for my Great Grandpa’s funeral. When I met my uncle and his wife I fell in love with both of them instantly. They treated me like an adult and wanted to hear what I had to say. She was a teacher and I still had not met a teacher I did not like. For the time they were down in Colombia I was their impromptu tour guide.
When it comes to mentors, my Grandfather is the ultimate one in my life, but my uncle has been also very important to me. He believes in worth ethic and being a provider for your family.
Over the years my uncle and I have had an amazing relationship. We are a lot alike. We have somewhat of the black sheep streak running through both of us. We both like to do what we want with our lives and love to be happy people. He is a lot more animated that I am (those of you that know me, know that I can get quite animated… multiply that by 10 and you have my uncle.) He was one of the only people that when I was not living in Chicago actually made a trip to see me both in Michigan and KC. He even spent a New Years a couple of years ago with Bea and I.
Last time I saw him before I moved back to Chicago I noticed that he was not as quick when he was talking. He has always been a fast talker. I also noticed that he was repeating stories, and that is just not something he ever did before. I talked to his wife about it and said that they should mention that to his PCP.
When I moved back to Chicago I went to visit him every single time I was around his house. Since they always spent weekends shopping I associated him not being home with shopping trips. I talked on the phone with him once in a while, and left messages, but did not think anything of it.
Before Thanksgiving one of my Aunts saw my uncle and said that he was in bad shape and had recently had surgery. I had heard nothing about surgery at all… I did not even know he was sick enough to require any kind of surgery. My Mom then talked to me to go see what was going on, and I went the next day. Sure enough, he had surgery but nobody in our family knew about it. He had kept it from all of us… and I understand why. He has always been a positive force, laughter, energy and he was simply mortified by the though of not moving around properly.
Back then the prognosis seemed to be a pinched nerve due to some pretty invasive arthritis on his neck. The surgery was supposed to free the nerves and make him regain the strength on his right arm which was really getting weaker. The surgery was a “success” but my uncle was not getting better. Initially I thought it was simply that he was not following his physical therapy properly, or that he was expecting results too quickly. However, I started to become worried… to me this seemed neither like a pinched nerve and his speech was getting worse.
Then things got more interesting and his wife had a mild heart attack. She is fine, but I think the shock of the whole thing finally made him realize that he needed help. He finally started letting family help him out, and me to actually go with him to see his surgeon. This is when I started to wish I was equipped with denial.
As his surgeon started to talk “at” him about his surgery and refer him back to a neurologist, my fear started to creep in. The doctor was baffled that what he did had no positive result. I was baffled that he was just not giving me much information other than details on the procedure he did. I started to catch more and more little tidbits about my uncle’s condition. Bilateral was the first, the second was lack of pain. Then it started to hit me that my uncle in a lot of ways his condition was a lot more serious than nerves simply being pressed by his spine. The doctor said something that hit him like a ton of bricks, there is more surgery that we can do; but the surgery comes with no guarantee of making you any better. Go back to your neurologist.
I made the appointment for the neurologist and thanks to a lucky mistake by me, we get in a lot quicker than we should have. My uncle starts to talk about hope for a simple fix, a pill that will fix him… I start to see more muscular deterioration. When we get to the appointment that attending does the initial consultation and checks him out. Everything that he is making my uncle do is making me nervous. I have asked my uncle to do similar things and his test are starting to shape my ideas into actual fears. I knew from his lack of range of motion that his shoulders were not responding to him at all. Also his posture was pretty bad and that part worried me a lot because its more than just the neck when your whole posture is not working.
When I had ear surgery they had to mess with one of the nerves around the eardrum. My doctor told me that I had an unusually long nerve and that he had only moved it aside during the operation but that I should be careful while it was healing and that side effects could mess with the tongue. I was able to talk no problem, but for a while it was almost like the wires for my tongue were crossed… sweet tasted salty. That is when I learned just how sensitive nerves are. Just moving them aside for a procedure could make toothpaste taste like a spoonful of salt.
The attending finished his assessment and we went to another room to see the neurologist. This is when things really became irritating. I am used to doctors really not thinking of people as humans but as “patients.” I am always aware of it, and I am thankful when I have found doctors that actual make human connections when they see you and not just look at the chart to see how they can “fix” you. The doctors started to consult with each other on my uncles condition and I kid you not, almost excited when the young attending identified the same things that the neurologist was. Don’t get me wrong, I understand they are there to learn; but what is happening to my uncle, my blood, its very personal… I think they should compare notes in another room or something… take care of the patient, explain things to him, don’t just “high five” each other over finding the right “hyper-reflex” on an extremity. The doctor continued almost like we were not there… only after I started to ask very direct questions did he actually notice again that humans were involved and they wanted answers. He said the word I dreaded most… degenerative disease… he wants to run more test, he won’t tell me what it is because he knows I will be looking it up.
Now I am the point where I could use a little denial. I don’t want to come to conclusions just yet, but my brain is already connecting many of the dots… heck it connected them long ago and I just did not want to share it with anyone.
I have sat with him often this last month, and I see in his eyes a scared child… looking for a word of hope… looking for comfort that I desperately want to provide… looking for answers that I simply don’t have.
All I have been able to say to him is that no matter what, he is not alone and I will be there for him. I will be there to help him in any way I can.