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Well, damn it. Here I was enjoying life, and in July of 2021, at the age of 59, a bomb was dropped into my life. I was diagnosed with arguably one of the worst health news one could receive. ALS (aka Lou Gehrig’s Disease). They don’t know what causes it, and there is no cure. I simply cannot describe what the following month or two was like emotionally. No anger, no denial, just utter grief and sadness at the reality of my life being taken away much sooner than anticipated. Subsequent follow-up visits with neurologists have indicated that it might possibly be a rare case of “PLS”, a slower progressing Motor Neuron Disease (MND), but unfortunately it takes four years of monitoring to determine a case of PLS.
As our house was not wheelchair friendly, the writing was on the wall, we needed to sell our beloved home that we had worked hard on for 18 years, and it also meant shutting down my sign business of 28 years. We did find a nice condo with wheelchair access, but the task of the move and closing the business was utterly exhausting. At the time, it perhaps felt a little premature to make such huge changes only months after the diagnosis, but the timing turned out to be perfect, for I physically could not undertake such a herculean task now. In the first eight months after diagnosis, I was unaware that fatigue is part of a MND, and I really do notice now that I am not the “Energizer Bunny” that I used to be. --------------------- Presently (April 2023), I am still able to get out with my camera, but my balance and walking is becoming more impaired as time goes by, and I can no longer negotiate some uneven terrain. I used to have the balance, coordination and agility of a cat, and losing that is awful. I was also forced to sell my kayak, so my world is slowly getting a little smaller. I am so glad that I went to Cuba, India and Morocco in the last ten years, because when I look back at how I pounded the streets all day like a maniac on those trips, I simply could not do that now either. The other insidious thing about this disease, is that one cannot know what one’s rate of decline is going to be. There are those who have died only a year after diagnosis, and yet other accounts of those who last longer than the typical 3-5 years. I am taking a large number of supplements, and those may be slowing the progression, but it’s impossible to know. I’ve worked so hard all my life, and was looking forward to my retirement years, so to have that taken away is also very disappointing. I will continue to capture images for as long as I physically can. ---------------------- Update – July 2024 I have continued to get out with my camera for as long as I could, but unfortunately my balance has now declined to a point where that is no longer possible. I can barely walk. This pastime requires one to be able to walk over trails, beaches, mountains etc, so this chapter of my life has slowly and sadly come to a close. I could try to continue further, but as with any passion, hobby, pastime, sport etc, it’s very difficult to go backwards in one’s level of ability and results. It would also be unsafe, as I can trip & fall so incredibly easily now, and breaking a hip, sustaining a concussion, or some other injury really needs to be avoided. I have immensely enjoyed photographing birds for the past 10 years, it’s provided me with so many great experiences and memories, and has had me in the great outdoors on a regular basis. This is very sad for me, as there’s so much more I wanted to do, but hey, there’s no guarantees in life, and I’ve had a good one so far. If your legs work, be grateful for that, as it’s that seemingly simple thing that gets you through the world and allows you to do so much. I now watch with amazement (and envy) whenever I see someone speed down a set of steps, whereas I can only do so at a snail’s pace, with a handrail and a walking stick required. I’m now a person who wants to do a lot of things, but trapped in a body that can’t. A major bummer, yes, but I have to remember how lucky I am to have had something that makes saying goodbye so hard. ---------------------- Update - June 2025 After my last update a year ago (above), I didn't touch the camera for about four months. Then, last October, I discovered an "All Terrain" Walker, so I bought it and that allowed me to get back out onto some local trails. This was great, I was able to bring my camera along and start shooting again, even though many locations were still not possible. That was great for a month or two, then I got hammered with Covid, and was stuck at home for about two months. After finally getting over that, I started to get out again with the AT walker, when I sustained another massive body-blow; I had a stroke. Fortunately it was a relatively mild one, but it set me back even further in my ability to walk. Now, about three months later, even though I've experienced some improvement/recovery from the stroke, I cannot take a step without a walker, and at times use an electric wheelchair when venturing out, but the trails need to be quite smooth with that device. Thankfully my driving is unaffected. My speech was affected by the stroke - a little slower and slurred, but I've mostly recovered on that front. Most people can't notice, but I know my speech is still not 100% what it used to be. So I continue to try and get out with the camera when I can, but every outing takes considerable effort, and is fatiguing. I'm approaching the four year mark since my diagnosis, so the doctors are now quite confident that it is PLS, not ALS, so that's great, but my world is indeed becoming smaller, and my life, frankly, more boring. It's very hard to adjust from being very capable and mobile to, well, the opposite. Instagram: "colinfranksphotography" (birds) and "colinfranksphoto2" for everything else. Facebook: https://www.facebook.com/ColinFranksPhotography/ Images are available as prints, ready for framing. All photos are property of Colin Franks, protected by copyright. No images may be used in any way, shape or form without expressed permission. |
