s p e e c h

Language is a mental construct…

Language attempts to define what’s in our heart….

“Language is a mental construct. Language attempts to define what’s in our heart. Language that we are born with is pure love. So let us remember that all of these words today are an attempt to describe this moment, but rather the language is LOVE + it is unspeakable.” - Melissa (our officiant + friend at our wedding ceremony )

What happens when you loose the ability to physically communicate? What happens when your partner is unable to express themselves or how they’re feeling, thinking, + wanting to express to you? Its. FUCKING. hard.

For a long time communicating my feelings + expressing myself was hard. It still is. I’ve come to understand that all relations need communication. FREEdom of speech. We as humans, as souls, as lovers we need to be able to express ourselves in order to grow + move forward. I have had such a difficult time with that. Past + present.

And it’s hard to talk and express ourselves with the person we want to talk to is closed off. Shuts down. Gives up.

And to make it even harder, add on the loss of the ability to speak. The loss of the ability to find + form the right word(s) to say. What happens when you even lose the ability to say a word. Its frustrating. Fucking frustrating. And I can’t even imagine. I am on the other side. I am trying to guess. I am trying to understand but I am unable to fully. Sometimes I feel helpless. I want to make it easier, better + fix it.

From Brian’s accident he suffered a stroke. That affected the right side of his body physically. In February, when I noticed his challenge communicating I thought he was suffering more little strokes so we went to the ER. He spent a week there + after many tests the neurologist looked at Brian + asked him about the Addisons Disease. I was on FaceTime with them (because of covid I wasn’t allowed to visit him that time) + in her notes she said that Brians face sank. He said that his brother passed from the disease just a few months after he was diagnosed.

I was unaware that the disease could be triggered from trauma. So essentially what that means is the disease is beginning to progress. Brian’s brain is swelling and instead of his brain cells repairing and helping themselves they aren’t. Progression means that his brain will continue to swell. The swelling of his brain will continue to worsen his ability to speak. He may eventually stop speaking. The swelling will potentially worsen his ability to walk. He may eventually stop walking. The swelling of his brain will eventually result in a transition of him leaving this life…. this is the hardest to type. I have been saying “his disease is progressing” …. but what Im really saying is…. he will pass + transition…. + I am on this journey with him. I am grateful to be on this journey with him + along side him.

This is such a rare disease that we are unsure what exactly will happen. We don’t know exactly how much time but we are already talking with Palliative Care with USCF as well as talking about setting up Hospice…..

All of this has been a wave. It has been the worst + BEST year of my life… I am so grateful to be here with him. I am so grateful we found each other again. I am so grateful…… but all the gratitude doesn’t take away the sadness. The anger + frustration. All the tears + fears. All the worry + anxiety. ….. This is our moment + its the hardest thing ever to go through….