Don’t Let the Past and Future Be Obstacles While Living With MS

Thank you for your post - it really resonated with me because I have done exactly the same thing. I wish I could say something to help, all I can say is that you are certainly not alone, and thank you for making me feel less alone :-)

Ben,

The way I have dealt with it, is to think of it as two lives. The first life was near perfect - marriage, family, job, friends, sports. It lasted almost 40 years until my diagnosis. My second life (almost 20 years) is nothing like my first life - hospital appointments, various treatments, treatment trials…. I stayed in my job for 12 years, my marriage isn’t what it was, no competitive sport (I can still cycle and walk the dog for c.20 mins). But travel is no longer an enjoyment, and many friends were linked to hobbies I can no longer do (running, tennis). I hate the loss of independence and spontaneity. Is there hope wit( MS? Each year we get a little worse (or a lot) regardless of the treatment we are on. We hope for remyelination treatments or neuro restorative treatments, but they never seem to get to the pharmacy shelves. It’s a vile, insidious disease and I can’t stand dross such as “I’ve got MS but MS hasn’t got me” or “God never gives you challenges you can’t overcome”. I miss my old life so much. I won’t miss my second life when it’s gone.

When I was first diagnosed 24 yrs ago I was not greatly affected, optic neuritis and fatigue. I ignored the disease for many years. I was too busy in my life with 2 school aged children and 2 working parents. I didn't talk about my MS for many years. I had to leave my job 3 yrs after diagnosis and was then forced to talk about it. I know some people, in their ignorance of MS did not believe me because I could ""walk". I guess I did not miss out on things, raised my children and participated in their lives. Looking back those were the "better" years with MS and wished I had cultivated, nutured more lasting friendships.

After my diagnosis, and being forced to leave my (much loved) 'too active' employment I went to college to train for a 'seated' position.
Time had rolled on and, working with People with Disabilities, one of my colleges (wheelchair bound from age 3,) had asked me "Do you dream?" I'd asked "About what?", his reply had hit me like a ten-tonne truck, he'd simply said "Being able to run fast, ski, or play in team sports..!". Starting to (stupidly) feel a little guilty, I'd said, "I'm sorry, but I've done all of those things.".
Sadly, his condition had taken him at a very early age, but I often think of him... recall his words and am forever thankful that, at least, I'd had the opportunity to use my body... when it worked.

Now unable to do very much at all, I just 'work' with what little I'm left with, and (occasionally) remember my triumphs of the old (me) days.

That's how I've always chosen to deal with my MS, Bob, and I wish you the required peace to deal with yours too. Be happy.

I have secondary progressive MS. I am 78, have kind family & friends. Your comments ring so true. One doesn't want to complain...and to just carry on. But each day is filled with back-tracking to get minor details accomplished. I'm having health problems...and all comes back to MS. And the future is all tangled with this reality. Your post shows me this same distress. Thank you so much for sharing. Ben.

Hi Ben. 9 yrs ago I was diagnosed with Secondary Progressive MS. My doc and I think I’ve had MS for 50 yrs of suffering and visiting major hospitals and physicians and even underwent open back scoliosis surgery that promised to heal my pain but instead put me in a body cast for 9 mos, only to cripple me for the rest of my life. At 81 yrs old, I, like you, am looking back on what I used to do even with the undiagnosed symptoms that were severe. I raised 4 small children as a single mom working two jobs and the stress of life aggravated my symptoms. These were supposed to be my golden years as my kids are adults with their own families, but I’ve not been able to travel, and go to concerts and do what active seniors aspire to. My future looks lonely, as I can’t go anywhere without assistance and am not not mobile. It’s very hard to remain positive. All we can do is the best we can with what we have where we are. I wish you well.

I'm not a great practitioner of mindfulness but I think it has some value here. I think mindfulness is, at least in part, about being in the present. As mentioned in your article we are a product of our past. We cannot leave it unnoticed, but we cannot live there. It is gone. As I write this the moment has passed, yet I am writing what was begun not long ago. I am also headed into the future; I will soon be there. The words will continue to come and then go. I am here in the middle.
So it is with all my life. I can recognize the past and learn. I can look to the future and plan. But I can truly only live now.

It’s really good to read your blog. I really enjoyed the one before on liminal spaces. Which I have always thought of in a old Celtic way.
And your perspective on past is really helpful too.
I have regretted much in my past life .Some of old family expectations about work etc , MS allowed me to drop. I hoped letting all that go , would free me from MS scars. But no.
I hope I am a better person, through this all, maybe just that.
There is a lot of suffering in this illness , and that makes it for me , as someone very wise said to me, “an upside down gift”
Thank you for blogging.

Right on brother! Couldn’t have said it better. I love my e-trike. There are only so many nice days. But the energy just to get strapped in to go. If I don’t go today, will I have more energy tomorrow? Will I even be able to do it next summer? “Live for today” has a very different meaning. Hard to make the shift to “do what you can while you can”.
Be strong (or do the best you can)!

You obviously hit a sensitive subject. I agree with Ian Q, farther up the stream, completely. The finality is the tough part. There's no rest for the weary.

Hello Ben- This too, is an interesting one. The majority agree with the prior to MS “Good” argument, with the post MS “bad” argument. I think about specific past events from time to time, not that they intrude on me. I think mentally healthy people are free to examine their lives without pressure to avoid or get “unstuck”. The just do it when the opportunity comes up and they want to.

So yes, I have come to a recognition that my post MS life, is probably better than my pre MS life. “Upside down gift” certainly fits. Now I must try to summarize in a few statements.

So in trying to research a DR. McCoy mug for my brother, William Shatner (Capt. Kirk) shares his belief that people should not automatically regret unfavorable directions in their life because maybe continuing in the same direction would have been worse. So that is the same question, isn’t it? Right on time, too. All of my data for the answer is readily available. I had +$100,000 PhD student debt. First job out was with a group, half of whom holded the cards; they were very unethical. I graduated at 32 years. My prior life was full of “nasty people” experiences and their was plenty of heart ache. I was never told how important $ and a house was to women, and my education made me broker.

Then MS. Sued my former employer. Went on disability and my student loans disappeared. Good healthcare at a very reasonable price- never to be cancelled. Became a landlord. Got into antiques and collectables. Collected SSDI. Got married to someone from a different culture. Life clearly is not as bad as it could have been.

So which is better? I have to conclude post MS. What if I could go back in time and avoid the whole mess? Where would I be today? It would only be fun if I could bring my current experience knowledge back with me. Boy I could have a blast then!
But given everything, I’d have to keep it where it is.

Ben, thank you for your military service. I am glad that I read your column today after a few days hiding under the blanket weighed down about the uncertainty that surrounds my life. It’s natural and inevitable to compare. It’s important to remember and acknowledge, but also to avoid self pity. Going down that rabbit hole is a trap for me.

For 17 years, I have remained hopeful for a breakthrough to remyelinate damaged nerve signals, going to the leading MS treatment programs (Cleveland Clinic, Mayo Clinic, Johns Hopkins, etc) .I continue to be beyond disappointed that medicine can replace hearts, eyes, limbs, etc but STILL no progress for MSers. Really?
I have turned my attention now to my 3 amazing daughters (2 enroute to a career in medicine)to educate them on environmental contributors (no history in our family at all but totally correlates with research on EBV & my mono as a teenager.) How lucky I am that I was healthy while raising our family. Given the coverage on EBV & MS and the emotional/financial implications to families, when will science develop a EBV vaccine?! We certainly got right to it with COVID.
Every year for Christmas, my girls get a supply Vitamin D3 /K2 supplements in their stockings. Until our medical community rises to the challenge, my girls eat clean, exercise regularly, learn as much as they can AND most importantly , they continue to tell me Im still the same person to them & what wonderful childhood memories they have. THAT is what keeps me going.