Over the past few weeks I’ve been thinking a lot about how my life has changed since my official diagnosis in January of 2024. Definitely there have been physical changes but also changes in how I interact with my friends, family and acquaintances as well as the physical spaces that I’m limited to. I’m calling this article circles, bubbles & spheres as I keep coming back to the concept of circular metaphors to describe three major areas of my perceived life with ALS. When I started this blog style writing I made a promise to myself that I’d write about the good, bad and ugly. Just a caution that this post is on the bad and ugly side. But it’s what I’m thinking about and feeling lately.
Circles of family, friends and acquaintances
As most of my friends and acquaintances know I am a pretty easygoing kind of guy who doesn’t need external validation and communication from a lot of people at anytime in my life. Instead, I operate within a small circle of friends, coworkers and acquaintances and that’s enough for me. I’ve never been a person to need or tolerate a high degree of drama and don’t find it particularly useful for me to know all the goings on of other people especially if it’s more negative than positive. In my life, you’re either in my inner circle and I call you friend, family or neighbor, or you’re on the outside of that circle and you’re an acquaintance.
Over the past few months. it seems like a lot of my inner circle are far away and I haven’t seen or talked with most of them as regularly as I would like. This is partially my fault because I am living 90% of my life in one room of the house and my only connection to the outside world is usually through phone or e-mail. Most weeks I only leave the house if there is a doctor appointment or maybe a dentist appointment and on rare occasions Stephanie and I venture out for a dinner date when I’m feeling up to it. I’m kind of missing interacting with neighbors and friends and encourage anyone who’s reading this if you feel the urge give me a call. A compounding factor to being more of a homebody is that I’ve voluntarily given up my driver’s license and have not renewed it since it expired in December. This sounds like such a simple thing, but it really had a big impact on my mental health. I no longer have the ability to just go somewhere whenever I want because it requires Stephanie or someone else to drive me now. The physical world that is available to me is shrinking more and more.
Hope this doesn’t come across as too negative, but it seems like my circle of friends is shrinking and I’m feeling like I’m kind of out of sight out of mind. In the past few months I’ve had a couple friends that have randomly reached out to me either with a phone call or a text message just saying how are you doing. I just want you to know that those check-ins are much appreciated and I need more of that. A huge bright spot as far as family goes, I’m having more regular and in-depth conversations with my brother and sister and my mom and dad calling them all more often than in previous years. So if you are in the neighborhood don’t hesitate to stop by or call / text / email. In January I also shut down my personal business after operating for exactly 20 years. That’s another group of friends that I’ve missed interacting with. If you have website or training development questions go ahead and call me, I miss being needed!
Bubbles – physical limitations
Another huge set of changes and adaptations (because of my physical limitations) is the reduced spaces I’m able to access both inside and outside of the house. I kind of think of this as the physical reach limitations and my bubble of access and travel becoming smaller and smaller. One of my most missed activities is being able to go outside and walk around the back yard while walking the dogs or doing any kind of yard work or physical labor. Over the past few months, I’ve found that I can’t walk on any type of uneven ground including grass so. I can’t go into the backyard at all. A few weeks ago our grass was starting to get tall and Stephenie had to use the mower for the first time ever to keep it under control. Yard work has always been one of my passions and it was really hard to see her doing something out of necessity that I would gladly do every day if I could. Lots of big emotions that I naturally suppressed and tried not to show!
Another physical limitation that decreases my personal access bubble are the stairs leading up to our second story of the house. Two to three times a week I’m able to make the difficult journey upstairs to the only shower in our house. It is extremely depressing realizing that at some point I will never be able to go upstairs again. As we get closer to starting the construction on the bedroom and bathroom that will be built downstairs, I thought about the whole closet full of clothes that I will never wear again and the shoes that I’ll never be able to walk in again, they all live upstairs… that I’ll never see again at some point. Once the construction is complete, we’ll have a whole master suite downstairs and I’ll be very grateful for that, but that also means my bubble is a little smaller. Eventually when I’m bedridden my bubble will revolve around that one set of new added on rooms!
I’ve been feeling a little depressed lately because my circles and bubbles seem to be gradually constricting and there is nothing I can do about it!
Spheres of Influence
I’ve been reaching out beyond my normal group of contacts to try and engage ALS related support groups. To mostly I’ve offered my website and video production skills. I’m on the Veterans team for the nonprofit I AM ALS, and there I’ve offered numerous ways I could help create content but no one seems to want my services. I’ve created videos but because it was not their idea or was not created, vetted or content controlled by an internal source all efforts have been rejected. OK well then I tried a different approach. I created a program called the ALS Caregiver Appreciation Program. One thing that I’m always wishing I could do is say thank you to the community of people who help me. For example, my neighbor does yard work that I can’t and I’d like to reward that generosity. My idea was to get a corporate sponsor like a restaurant to donate gift cards that I can give to those who support me. I’ve written up a great presentation and sent this to 3 large nonprofit and corporate entities and I can’t even get a simple call back saying thanks but no! I added the focus of this effort to center around the month of May (ALS Awareness) and even tried to define how the branding, marketing and presentation would be a win / win marketing campaign for any sponsor. Still no one even seems to want to acknowledge my efforts! So I’m kind of bummed out that I have what I think are great ideas but no way to take action on them.
Well I think that’s enough negative thinking. I would encourage anyone who reads this to send me a text, call or an email. Not much can be done about the shrinking bubbles of physical access BUT maybe getting out of the house more could be a goal. I’m going to redirect my spheres of influence efforts to focus on the nonprofit I’ve been threatening to launch for the past 9 months. Going to focus my energies, time and attention on getting that launched. You all can help by acting as my conscience and asking when it will launch, what it’s all about and maybe get involved to help.
