Living with MS can often feel like being lost in the woods
Waiting and hoping for a rescue: Necessary, but hard for the less than patient
Years before joining the Army crossed my mind, I was a Boy Scout. We learned all sorts of skills, earned merit badges, and, of course, spent lots of time hiking and camping. I have many fond memories of those scouting years, but one lesson I remember in particular was what to do if you’re lost. The first and most important step: “Stay where you are.”
The Boy Scouts may not have invented that piece of advice, but it’s a sound one. You’re more likely to be found if you stay close to where you were last seen than if you wander so far afield that you need a passport. There are other things to do when you’re lost, but staying put is the priority.
Living with a chronic disease like multiple sclerosis (MS) is, in a way, like being lost. I often feel separated from others while staying in one place and waiting to be rescued (cured). Yet staying put with MS is a hard thing to do.
When I check out new research and clinical trials, I often hear that I’ll have to wait and see. Since patience has never been my virtue, that waiting is hard sometimes. I want to see right now, to be patient zero in a groundbreaking trial. But my level of disability excludes me from most, if not all, such trials.
You’d think I’d be used to it by now, but I’m tired of feeling lost.
Holding on to practical hope
While I’m waiting, I do my best to be what I call “practically hopeful.” If I were lost in the forest and didn’t know when I might be found, I’d still procure water, make a shelter, build a fire, and use that survival whistle I brought along. While lost in MS, I try my best to adapt my home, clothing, and more to fit my situation, and I use varied gadgets that I find helpful. What I don’t want to do is let my practical hope turn into desperation.
I won’t say that I’m always successful at that. I know that, under my usually calm surface, desperation is waiting to tell me there’s no chance of being found. Desperation wants to run in any direction, set fire to the whole forest as a way to be found, or use the trinkets sold by someone who preys on the desperate.
The American pioneer Daniel Boone has been quoted as saying, “I have never been lost, but I will admit to being confused for several weeks.” I’m still confused, but I’m hopeful, practically hopeful, and I’m waiting, even though I don’t like it much.
The U.S. Army Special Forces have some (very) unofficial rules similar to but more involved than the Boy Scout one. As one source describes it, the first is to “always look cool. The second rule is to always know where you are and what you are doing. The third rule is that even if you don’t know where you are or what you are doing [then] you should still try to look cool.”
Thanks mostly to multiple sclerosis, I’m not doing great at any of those, but I’m trying.
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.
About the Author
Comments
Kathy Midgley
I have had my MS since I contracted measles aged 17 for the 2nd time (yes you can have measles twice).This information was given to me at the age of 35 when I had joined a research study into the genetics of MS at Addenbrookes Hospital Cambridge in 1991/92. I knew i wasn't right having eyesight losses and severe headaches for years being told I was suffering from an optical irritation to the optic nerve whilst working as a staff nurse in the eye theatres at Kings college Hospital in London. I achieved a result with help from a friend working in The Central Hospital of nervous diseases in the MS research dept for Doctor Mac Donald, Yes the father of MS research. I was very lucky having one of the first MRI scans for MS in the UK in 1982. I am 71 years old and still have no proper treatment for my MS ! I now live in France with a great health service but still a relative desert for MS sufferers. My experience here of Neurologists in France is they like taking back-handers from drug companies pushing disease modifying drugs like Vampira (think it was called) almost killed me as the resulting rejection of this drug was a disaster for my respiratory system . I needed Oxygen and help from a wonderful district nurse whe happened to be English. She still is my district nurse now 14 years on. My present treatment I have apart from Gabapentin for pain is an antihistamine which apparently helps with re-miyalin of the nerve cells, which i read about thanks to my MS society membership in UK. I am 71 years young and enjoying life doing all the things I am capable of now having retired from my nursing career after 25 years of almost full time working hours in the last 5 years. Running a small holding with my second husband whist we still worked full time. We have 7 grandchildren between us who are in England. My own wonderful son is 52 now and has 2 girls, They have thus far shown no MS symptoms. I though have obviously from other diseases i have inherited a retrograde Celtic gene. As diagnosed in France by the department of genetic disease studies at the University of Sorbonne in Paris . My consultant is a haematologist as I also have hemochromotosis .So all my investigative information about my MS condition seems to come from no neurologist involvement. Perhaps like so many other MS people I am still waiting. Don't give up never lose your optimism in your outlook on life it is what we make it ourselves with help from our friends in the MS society in UK and worldwide.
Benjamin Hofmeister
Wow!!! What a journey! And what a story to go with it!
Thank you for sharing it and your words of wisdom and experience. If life is what we make it, I'd say you've made one to aspire to.
Ben
Andrew Dzurinko
Ben, Thanks for your service and for sharing your story. My daughter has recently been diagnosed and she sent this to me, I know like you she will stay positive and active. Andy D
Benjamin Hofmeister
You are so welcome Andy! I'm sorry to hear about your daughter's diagnosis. This is the club no one wants to join.
Kit Minden
Forests of Lost and Found
In the realm of shifting sands and sky,
Life's journey painted with hues that belie,
Multiple sclerosis, mini strokes, lymphedema's touch,
A canvas of gains and losses, oh so much.
Once, I roamed the woods and park's embrace,
Walking tall, nature's beauty I would trace,
But now, a captive within walls confined,
Yet in memories, those paths unwind.
Standing firm was once my stance,
But circumstances shifted, a different dance,
Instruments once played with skill and grace,
Silenced by challenges, a different pace.
No longer do I clean and tidy with zest,
Or wield the spatula with culinary finesse,
Washing dishes and dressing, tasks anew,
Adapted movements, strength renews.
The pencil's grasp, the words that flowed,
Written tales in ink, stories bestowed,
A tremor's touch may alter lines,
Yet creativity persists, as art combines.
Tea shop rendezvous, writers' shared delight,
Gatherings transformed, a different sight,
Library tutoring, lessons rearranged,
Knowledge endures, though paths may change.
Camping's night sky, stars aglow,
Mini strokes may dim the afterglow,
Yet within walls or under celestial array,
Beauty persists, embracing each day.
Lost constellations found anew,
In a digital realm, friendships grew,
A vast community, connections thrived,
Through screens and texts, love derived.
A son's care, a rock so strong,
Husband's love, unwavering along,
In the midst of life's tempestuous sea,
Anchor-like love, steadfast and free.
Artificial intelligence lends its hand,
Weaving words, a creative strand,
New ways to view health's domain,
Alternatives explored, knowledge gained.
Gazing at galaxies unknown to sight,
Images from Space Telescope's flight,
A universe unveiled, a wonder to see,
In depths of stars, new perspectives be.
In the tapestry of gains and losses sewn,
A life's symphony, uniquely known,
Though some notes fade or rearrange,
Resilience endures, embracing the change.
Kit Minden
Kim
Thanks Kit. I, too, like to get my feelings out through poetry. So constructive and peaceful. You're a beautiful writer. Thank you.
Kit Minden
Needs some edits - line endiings are not right - but another day. M and mini-strokes leave my hands half-functional for typing so I have to take my time now. Is there somewhere to read some of your work?
Benjamin Hofmeister
My favorite stanza is,
"Once, I roamed the woods and park’s embrace,
Walking tall, nature’s beauty I would trace,
But now, a captive within walls confined,
Yet in memories, those paths unwind."
I often refer to myself as a flightless bird. The demands of gravity are more demanding each day.
I wish I had your voice. Thank you for sharing them.
Alison McLachlan
I enjoy reading Mr Hofmeister's writing so much, he always brings a smile to my face, and often a laugh out loud - great stuff from a great writer! ps., I'm trying to look cool...succeeding is a whole different matter...
Benjamin Hofmeister
Thanks Allison! All we can do is try. If we only succeed 1 out of 100 tries, that's still success, right?
Oh, and I think this is the part where I'm supposed to say, "Mr Hofmeister is my father."
Shirley L Burneff
I too, enjoy your column, and look forward to reading everytime I get email notification. Your writings renew my strength and hope. I am trying desperately to 'look cool,' as I flail about and feebly try to walk, which is becoming more and more difficult. I use the aid of a walker, but need to rely upon my own powers of independent motility trying to accomplish various household tasks. I was a former welder, but now unable to meet those demands of the job. I continue to care for my household of rescue felines, the newest addition a litter of 4 kittens, I am in the process of weaning. It is very difficult living with this disease as it progresses, because people don't often understand how disabling it can be. My sig other is a long haul truck driver, and depends upon me to keep things running at full steam while she is gone, often for long periods. It is lonely and frustrating .
Benjamin Hofmeister
Thanks Shirley! Looking cool shouldn't be this hard. All my cool t-shirts have the cool part on the back where it can't be seen in mu wheelchair.i guess I need to come up with my own line of "cool guy" gear for the disabled community. "Disawesome" or something like that.
Cats and significant others... now there's a column. Unique support networks or things that narrow their eyes at me a lot.