With multiple sclerosis, you don’t get to choose the ladder you climb
Symptom progression has me constantly starting over at the bottom rung
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I’ve always tried to climb every ladder I’ve encountered throughout my career and life in general. In the military, there were nearly unlimited “ladders” to attempt, if you wanted to. My choices led me to multiple new ones, and while I may have started several rungs up at times, I never started at the top.
Starting at the bottom was expected when I joined the military. After that, I could have stayed on the same ladder and kept climbing, but I didn’t. I’d pursue a new ladder, and the people above me made sure I knew I was at the bottom again. I’d have my head held high and receive congratulations one day, only to start a new phase the next as a barely sentient life form who ought to feel lucky to be there.
I never knew that climbing all those ladders was preparing me for life with multiple sclerosis (MS). What I do know is that I didn’t choose to, or ever want to, climb this ladder, and I’ve never felt lucky to be here.
There’s always a new ladder to climb
When I was diagnosed in 2014, it felt like starting at the bottom of a new climb, because I didn’t know much of anything about the disease. When I’d learned what I thought was everything I needed to know about MS and my symptoms, I figured I had made it to the top of that particular ladder. Maybe I did, but if so, it was because I didn’t think I’d ever have any new or worsening issues.
Finding out that I could — and regularly did — experience changes in symptoms was a rude awakening. That first new ladder was the most disheartening and depressing. It didn’t help that, between MS and my attitude toward it, I was barely clinging to the first rung.
Meeting new healthcare providers also feels like an unwanted beginning. To date, I’ve had three neurologists and have seen numerous other specialists and physical therapists. Describing my symptoms and history to each one can feel like starting over.
New or worsening mobility issues usually require me to start from scratch, as well. I quickly climbed the cane ladder just to start from the bottom on the rollator one, and am currently somewhere in the middle of the power wheelchair one. Once I can no longer drive with my one semi-functional hand, I suppose I’ll have to start climbing a new ladder. Unfortunately, all my experience doesn’t make adapting to a new climb any easier.
However, I’m not alone in grasping at each rung. There are people in my life who didn’t choose this either, but they stand beside me anyway. I should do a better job of remembering that when I’m tempted to snap at them for encouraging me when I don’t feel very courageous or for giving me a helpful push now and then.
There are also those climbing similar ladders who reach down to extend a helping hand by sharing advice and their experiences. I can’t explain how grateful I am for those individuals, who have inspired me to do the same for others.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Natalie Sirota
Thanks, Ben for another wonderful column! It really helps to have a positive perspective.
Benjamin Hofmeister
Thank you Natalie!
Ian R
In reality, we have a ladder once we are diagnosed with MS - the EDSS. 0 on this scale in “no disability” and 10 is “death from MS”. We all move up the EDSS ladder, either quickly or slowly. For PPMS the climb tends to be quicker. I’ve had MS (started as RRMS) and am just about to hit 6 after 23 years. One neuro I had did some research and found that, on average, you get about 30 years after diagnosis. This sounds sort of right. My aunt died in her 50s after being diagnosed in her 20s. No amount of analogies (ladders, Army acronyms) changes the outcome. Treatments have some effect, but your own experience with Ocrelizumab shows that the impact is small at best. We are doomed to keep moving up the EDSS ladder until the scientists can identify therapies which halt the underlying destruction of our CNS tissue. Probably too late for you and I.
Benjamin Hofmeister
It's implied I guess, but the edss doesn't make a definite distinction between what someone is able to do for themselves and what requires the aid of another. On paper, I'm an 8.0 meaning I spend all my time in a bed, or motorized wheelchair. However, I do not have the ability to transfer myself from one to the other, so I'd be at a higher level if someone was not available to physically lift me from one to the other. I wonder if we should have a different scale when there's a second person involved? I'm at an 8.0 by myself, but since another person is required, 8 * 2 is now a 16 on what I'm calling the dependent edss.
And I like my analogies and army isms. 😀
Ian R
Thanks for your response. My progression has been slower than yours. But, in truth, your situation scares me to death. I (at 61) can still drive and hobble about with one crutch, but I can see the decline year on year. My kids are mid 20s and settled down - I know yours are relatively young. The ladder scenario hit home with me, as I set myself a point on the EDSS where I’d be jumping off the ladder. I find MS to be a particularly cruel disease - I saw my aunt suffer. In 2026 the experts should have at least been able to stop worsening- it’s the certainty that you’ll continue to worsen that makes MS so difficult to live with.
Benjamin Hofmeister
The truth is, it scares me too.
What were goals turned into hopes and the hopes have changed by getting smaller over the years.
I hope they cure this.
I hope a medication can halt the progress.
I hope a medication can at least slow down the progress.
I hope I can take something to make me comfortable during the progress.
I hope the progress takes long enough for me to see my children reach adulthood.
There's a fine line between hope and Desperation and mine is starting to blur.
Lisa Bowser
I know the feeling about the ladders! When I was first diagnosed, I had 17 lesions on my brain. That was my first ladder. Then out of no where, it seemed to progress into secondary progressive MS, and that ladder was very disheartening. My third ladder has been my broken hip and getting a hip replacement. I might have to say this has been my hardest ladder. They say it was a bad break, and the surgery was equally traumatic. They told me I have to give this a year and a half for recovery. For a patient person, that's a lot to ask. I will tell you I have only found one solution, and that is God. He's getting me through and strengthening me for this journey. Have a blessed rest of your day and continue to be a blessing through your writing. It means a lot to a lot of people. Thank you!
Benjamin Hofmeister
Thank you Lisa! Your reply is a blessing back to me.
Sheryl D Nygard
I really enjoyed your column on the climbing the ladder. I was not in the military, however, I was always climbing ladders in one way or another as a woman and a man’s profession… But I have been resigned now for the last five years to basically a Wheelchair, power one of course 😊 but your column really is inspiring and just let us know that we are not alone in this fight and that if I’m dealing with it, I’m sure someone else is dealing with it too. I try to keep. A positive attitude and I have a great support system around me! I try to be as independent as I can climbing this ladder is as you know, is probably the hardest ladder we will ever have to scale. But it’s inspiration from people like you and knowing that you are keeping up with the fight, is nice.
Thank you for sharing your story with us !
Keep on keeping on brother
Sheryl
(diagnosed 1984)
Benjamin Hofmeister
Thanks for letting me know that I'm not alone Sheryl!