No matter where you go, there you are

Somebody nudged me the other day and asked when I was going to post to this blog again. And again today, someone wanted to know how I am doing. It’s been far too long since my last post and there’s a reason for this, one that I’m not particularly proud of. As a rule, when I post it is because there is something interesting and worth sharing. And I want it to be profound and engaging because frankly I get a lot out of your responses. And I don’t like posting some boring, day to day stuff because there probably won’t be any spectacular response. It never occurs to me that the people who love me just want to include me in their lives. This is pride, the foremost of the Seven Deadlies, and the one that underlies them all.

I have been home a month now and have settled in to what, for now, is the new normal. Maybe you want to know what that is, maybe not. But I’ll share this with you all.

One of the most significant developments for me is that I am finally being fitted for the devices that soon will allow me to produce sounds via a voice prosthesis. It won’t be speech, but it will be a necessary first step. I’ll be back to Michigan in January for the placement of the prosthesis and several intense weeks of speech therapy. As my therapist said, my success is up to me. It’s a long road ahead but he feels that I have the right attitude to pull it off. We shall see.

One side benefit of this is that I can now use a button called an HME (heat/moisture exchanger) that eliminates the need for nightly humidification. One less piece of medical equipment. We returned it the other day. The HME is also a filter that removes larger contaminates like cat hair (no shortage of that here), and the usual junk that floats around. Normally your nose does all of these things. But since mine is now merely decorative, it’s a necessary and welcome replacement.

It’s good to finally be back in familiar surroundings, but I am beginning to realize just how much I need to adjust to function in a world where speech is expected. So I carry around my Boogie Board to write on. And there is a voice to text app on my phone that helps a lot. But other people don’t quite know how to act around me. One guy started writing back at me, assuming that since I couldn’t speak, I couldn’t hear. An understandable but humorous response.

Another thing that is turning out to be harder than I thought is developing a simple sign language that Charlotte and I can use to communicate. It takes a lot of work and we’re usually short on time, or too tired to work on it. So it’s not moving along as I had naively hoped. Patience is the requirement here.

Participating in group discussions is proving to be very problematic as well. I got a taste of it when I was in Michigan during my recuperation, but now it is becoming a point of real frustration for me. We have a bi-weekly bible study that I used to actively contribute to, but it’s the same problem of being ten steps behind the conversation so that by the time I have typed what I want to say I am hopelessly off topic and I end up erasing all the typing I just did. We went to our Marriage Encounter sharing group last night and they started to wrap up the meeting before I had a chance to “say” anything. It’s no one’s fault. I just feel left out and minimized. It’s obvious that people don’t understand what I need from them. Our little Sunday AA meeting in Rochester gave me a chance to actively participate because they came to understand my limitations. From that a comfortable dynamic emerged. But I can’t expect that to happen in most groups, at least not at first.

I developed a pretty bad strep infection in my chin which the doctor is treating with an arsenal of antibiotics. There is still a lot of edema in my face, and it is always at risk for infection. I am getting regular massage by a physical therapist trained in lymphedema massage. But even with that, it will probably be a year before the swelling fully subsides.

Still, it’s good to be home and able to go in to work a couple of days a week. Everyone has become so accustomed to my working remotely that I usually have no reason to go in. As a result, I have become a house husband, something Charlotte is enjoying. Every day that I work from home, there is a list of chores for me to do in addition to doing my regular job. And I’m happy to do it. If I ever really retire, I suspect I will have a “honey do” list every day. I don’t mind because it means I have a wife whom I can care for.

So that’s where I am. My life is pretty ho-hum. And that’s just fine with me.


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4 Responses to No matter where you go, there you are

  1. Pat Schultz

    Hello Steve, so good to hear from you. Although I continue to get the Care updates, not the same as hearing from you. And believe me – your life is far from mundane! I love that you are doing some house husband things – I know how much Charlotte appreciates that as I did when Jack had to quit work and stay home. You are doing double duty though because you still get to participate in your work, at which I know you are most proficient. I’m sorry to hear about the physical challenges that are still disturbing – the edema, and the strep infection. Encouraging to hear you have been able to get rid of one piece of medical equipment w/the fitting of the voice devices. Does that mean you now can make sounds? Or will sounds only come when the voice prosthesis is fully in place? I know you both must be looking forward to that no matter the long haul, because I know you both have the courage to sustain the work. How frustrating it must be for you, who has such good conversation to make, to find the logistics of conversing too slow for you to actively participate. I believe that would bring me to tears in very short order – or maybe even rage – I don’t know which because I’ve never had the kind of challenge you are encountering and it amazes me how well you seem to cope. I think that must be where your faith come in w/the strength to keep doing and trying rather than throwing up your hands. I admire you both for continuing w/your groups, and hope that there will be some kind of accommodation made so you can more fully participate. In the meantime, you have this venue to express yourself and I hope you continue to do so. I have missed hearing your conversation here – you always give me something to think about more deeply. Hugs to both you and Charlotte.

  2. Steve

    I won’t be able to produce sound until the prosthesis is in place. I will be getting an electronic external larynx device which you hold to your throat. So I will ahead of time what I am already capable of doing.

    You’re right about the frustration. I’ve come to realize that being a part of a group requires vocal participation. People don’t do it deliberately. But if they are not aware that I am typing in order to say something, I get passed by. I can’t say tears or rage would characterize my feelings, but I certainly get frustrated and not a little upset. Fortunately, Charlotte or someone else in the group are sometimes there to bring my to their attention. It’s almost more trouble than it’s worth, but I’m not going to sink into isolation because of it.

  3. Michelle Schulz

    So glad you’re home with your beloved Charlotte and of course your furry friends. Great that you’re working from home and being an awesome house hubby, I’m sure! Maybe having life be a little boring is just right for you at this point. I’m sure you’re looking forward to the prothesis being put in, and of course that means I get to see you again in January. You’ve been through SO much Steve. My prayer for you is that you continue to move forward and I know you will. Love and blessings, Michelle

  4. Donna Okray Parman

    Hello, friend. I finally had a chance to sit down and give my full attention to this post. I saw it drop in last week, but I never want to run through a post from you or Charlotte in a hurried fashion. So. What a great post. Very informative, personal, and interesting.

    I’m so sorry for your challenges in speaking. Your description was quite thorough, and I felt the frustration. It’s MADDENING to type out your thoughts and feelings, only to delete them because the moment has passed. It would be tempting to stay home and turn on the TV. Honestly. But I am SO GLAD you are forcing yourself to engage with people, Stephen. Everyone will learn, as your Rochester group did. I’m sure that what you have to share will be worth the wait. But I am sorry that you have had to suffer like this.

    Your amazing mind is functioning at the top level, thank God, because frankly…speech deficit is one thing, but cognitive thinking loss would be the death of you!

    We are still praying for you and Charlotte, as you travel this road. Keep fighting, Brother. It is working.

    Love ya.

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