To Whom it May Concern;

The letter I never sent sits on my desk. I can't do it. I cannot say all that I feel, my anger would overwhelm you. It's not fair to put that on you, but neither is it fair to leave it inside, dwelling and lingering.

Dear person-

While I appreciate your personal pain, please do not assume that you in anyway understand the scope of all that has happened. You haven't taken the time to listen, let alone understand. You assume and perceive my life through your own narrow lens. You make assumption after assumption, imagining that somehow I actually share all my pain. I may write about some of my challenges, more as an expression that they are real, but I in no way dwell on them. My life is made up of more than my injury, of more than my pain and I would much rather amplify the positive aspects of my life. Never fear, I am very aware of the realities, of the pain. Trust me, it never leaves long enough to forget. Please allow me to correct a few of the misconceptions about my life demonstrated in your letter.

"Well, at least you are home..." Factual yes, but this does not encompass the extensive support network that makes me living in my community possible. My husband is sometimes father more than spouse and I feel consistent guilt that I am, as yet, unable to be a full partner in our marriage. Every part of our relationship is a balancing act of my abilities and tolerance levels. My neighbors are aware and available should the unforeseen occur. I have hired help to get me through the days and do simple things like run and play with my children. I am home with oversight, care, and extensive support networks.

"You get to get better..." Yes, but again this is not without extensive support and effort. Every part of my day is weighed and measured. I have made many sacrifices of time and money to do everything I can to heal and improve, those efforts are paying off, but it is not without cost. I exist in a state of pain. That pain can wax and wane with the barometer pressure, dietary changes,  temperature, and even hydration levels. Here's the kicker, I am through less than 1/2 of my lifespan- I will live much of my life struggling with executive function issues, and when it gets bad, even basic bodily functions.

You go on to share your desires, despite what is best for others, with "I want...' Great, so do the rest of us. We all want but all of us must weigh the responsibility of what we want with our capacity. Endangering others for your wants is unacceptable. Period. That's it. You do not get to endanger others for your wants. Wants are not needs.

I love you. I know you are hurting, but I beg you to never assume that you understand the full reality of another persons life. You can share, empathize, and be with them, but you are not them. You can share, but you do not know. As long as you continue to use what you do know to justify your own actions and excuse your wants you will never know. Knowing is placing the needs of others over your own wants. Knowing is moving, even if it hurts, because it will be worth it. Knowing is showing love and hiding pain when it hurts the most because someone else needs the space for a time to grieve themselves. Only by working to really know can we actually see one another as they are, and not as we are.

-Me

Pajama Day

So, had my audiology follow-up today. Or not. Since my doctor did not make the proper recommendation we did not have the necessary equipment in office to do the tests today. Got some real input and advice however. I was clearly informed that waiting does nothing for hearing loss if the cause is not cranial swelling. Because mine is not caused by cranial swelling I  get to return to the hospital for more evaluations.

My husband is really struggling because at my 4 month follow-up we brought up my hearing loss and it was dismissed out of hand. "I don't know why you would have that." No evaluation, no recommendations, no follow-through. Today we found out that time is our enemy if the nerve is functional. The longer I go not hearing, the harder it will be to relearn. We also began talking about the possibility of needing a second surgery for a cochlear implant. (God, I don't know how to do this.)

I hadn't considered it before but I really want that PA to not ever interact with a patient again. Mixing up paperwork, dismissing symptoms, and not following through on files and documentation- these are big problems when you talk about peoples lives. I'm so tired of trying to heal and then to feel this angry again is really hard. I have no way to express it. No way to feel or show it. The people around me have been through so much, breaking down and sobbing is just too much.

I declare today a pajama day. I'm going to go eat my feelings; chocolate, must have chocolate.

 

Just Keep Swimming

I just got out of my neuropsychologist appointment.

Relieved, hopeful, and ready to go - after I take a very long nap.

The neurological testing was extensive, but given in a watered down version so as to avoid wearing out my system. We reviewed visual skills, memory, tracking, spatial awareness, and so many other things that I am amazed at the ability our minds have to filter out so much accessory information on a daily basis.

In discussing overload, I found that not only do we have our 5 basic senses, we additionally have other senses. Sense of time, sense of space, sense of reality, sense of awareness, and many more. The mind is bombarded with millions of pieces of information each minute and we miraculously sort through all of that to form thoughts, plans, and behaviors. My sorting system is broken and gets jammed up with all of the daily stimulus.

Removing and reducing stimulus has been the plan. Now we are going to slowly increase stimulus, increasing my tolerance for functionality.  My team and I will work together on a plan that will support function and make use of coping skills such as touch/memory techniques to allow for the most efficient function possible.

I was encouraged to pursue nerve testing for my hearing loss. Essentially it was explained that when one is determined to increase physical strength, you don't sit on the couch waiting for your muscles to grow. The mind operates on the same principle. After trauma, weak or damaged nerves and functions can be improved by careful and focused work. A team approach helps to ensure the fastest road to recovery possible and waiting to "see what comes back" is not an option for me. I have never been a "wait and see" person. I am "give me a direction and watch me go".

I now have hope for a more focused direction.

My friends also on this journey; if your doctor has told you "I don't know why you feel that way." or "No, that wouldn't happen." Request a referral to a neuropsychologist. Request referral to speech pathology, occupational therapy, physical therapy. Do what you need to do to ensure that you have a successful recovery. Your team works for you. You are not inconvenient. You are not wrong. You feel what you feel and you are the patient, therefore, you are the priority. Stand up and ask for what you need to be successful.

You've got this.

God bless and keep you!