People used to tell me that if I had enough faith I would be healed. In the energy world it's the secret. The power of positive thinking will make everything work in your favor. I know I have talked about this before but when the going gets tough I always come back to it. Hope is my thing. I am Positively Susie. I plan for everything to go my way. Always! That is the way I live my life. The year that I ended up back on disability my new years resolution was to not use my vacation days for illness. What has been proven to me time and time again is that control is an illusion. That is what people are trying to do with faith and positivity. They are trying to control the outcome. I recently learned that controlling adults had traumatic childhoods. The more controlling they are, the more traumatic their childhood was. Telling them that they are controlling will not heal their trauma. Trust me. I have had many people tell me in my adult life that I was controlling. It has not protected me from having trauma in my adult life.
So, what happened today to trigger this insight? Why am I talking about faith and positivity again? Let me tell you.
In March 2020 as the world was turning into chaos at the rise of the covid 19 pandemic, the stars seemed to align and bring me everything I ever wanted. Well, almost. I was still disabled. My husband was still disabled. Some of my relationships were less than perfect and I didn't live on a beach. But! We were able to buy a home that felt perfect and adopt a couple of adorable puppies and go into a ton of debt to make our house just the way I wanted it. It was ok because I had a plan. I was excited. Part of this plan was that my husband would continue to drive for Uber part time so I could pay off the debt.
Uber was such a gift to my husband. Since he became disabled back in 2000 he has been looking for something that he could do part time, when he felt well enough, and that he enjoyed. He didn't find it until 2017. In Uber he found a job where he didn't have a boss and he didn't have to show up if he didn't feel well. It wasn't meant to be relied upon. It was just meant for fulfillment.
That was a year ago. What does that have to do with today?
Let's go back to September 28, 2020. My husband has a rare condition called Multiple Venous Malformations. One of these malformations is in his head and presses against the eustachian tube in his left ear, sealing it off. That caused pressure to build up in his ear. It was uncomfortable. So, we went to an Ear Nose and Throat doctor who kindly offered to put a tube in the tympanic membrane so that air could circulate and relieve the pressure. My husband accepted. Unfortunately, the relief never came. You see he ended up having a bad reaction to the tube. His ear got infected and his tympanic membrane disintegrated. He was finally referred to a surgeon to reconstruct the membrane.
Fast forward to January 7, 2021. That was the day of surgery. It turns out that a tympanic membrane is pretty important. Because of the exposure he had chronically inflamed tissue in his ear and the bones in his inner ear had fused together. The surgeon reconstructed the ear canal because it was oddly shaped and made it difficult to work. He replaced the incus bone with a prosthetic, removed the inflamed tissue and used a cartilage graft to make a new tympanic membrane. He anticipated that my husband would be back to rideshare driving within a couple of weeks.
He was wrong.
Today is March 23, 2021. My husband is basically deaf in his left ear. He is finally recovering from another infection in that same ear. Since the surgery he has had to go to a hearing and balance center to deal with vertigo in his inner ear. He has had 2 emergency hospital visits because of pressure headaches in his central nervous system. He has worked with his neurologist to find the cause and treatment to no avail. The vertigo is slightly improved. The pressure headache has improved. But he is still miserable. Today we found out why.
When humans are babies they have more bones. That is because some of the bones fuse together as they grow. Part of these bones form a container that houses the inner ear. My husband had a CT today. In the CT the doctor was able to see that my husband was missing some of the bone that is supposed to protect his ears. This is true for both of his ears. The doctor believes that when my husband was a child he had a lot of ear infections. Because of the ear infections he formed scar tissue in places where he should have bone. The scar tissue is not able to regulate pressure in the same way that bone does, Because of this my husband has always been extra sensitive to pressure changes. Because of the surgery, this is now worse in his left ear than it was before the placement of the tube last September.
We don't know if my husband will ever completely get rid of his vertigo. We don't know if he will ever regain his hearing. Most likely he will need to adjust to a new normal. We don't know if that new normal will include driving for Uber. He said that he is starting to get used to the ringing in his ear caused by the hearing loss. He has an appointment to see if hearing aids are an option. He is going to see the hearing and balance specialist for exercises to help with his vertigo. If his situation hasn't improved in 6 months he can decide if he wants to undergo another surgery to repair the bone that didn't form as a child.
What we do know is that life for my husband is harder than we thought it would be. Before his surgery, in January, we started a vegan diet in hopes that we could be healthy old people. But for us it seems that being diagnosed with new strange things is our normal. Even when we believe it will be different. Even when we think positive and have faith. We get knocked down and we get up again and we say, ¨We got this.¨ But then there is another this to get. and another. and we get tired.
Tonight I am tired. We have been knocked down too many times. We are tired.
