Are You Missing Some Beauty Too?

Are You Missing Some Beauty Too?

Today it hit me again that there was a beautiful pond behind the small hill on the property we now live on with our oldest son and his family. Everyone else in the family who has visited us has had a chance to follow the old pathways to the edge of the water, observe the beaver dam, watch the fisherman, and enjoy the wildlife on the walk – but that will not ever be my reality.

Are you like me?

Are there locations that are now inaccessible to you, due to your physical limitations?

My first experience with losing direct contact with the natural world occurred years ago when I was confined to a wheelchair for four years. The beach was my love   but the only way we could get me onto it was to use those massive handicap chairs with large tires to maneuver on the sand. My husband would push me onto the sand to get me to a safe chair where I would then stay in place until we had to leave. But picture the scene – sunglasses on, a service dog on the side of the chair and feeling like a spectacle for all to watch. But I learned to suck up my pride and take that ride to get onto the beach.

This past summer, I visited the beach twice. I was able to walk very gingerly on the sand with my own feet again. But I am now headed for a toe fusion due to my feet deciding it was fun but my time for fun was over my feet returned to easily subluxing. I am hoping this simple procedure will stop the dislocation of the toe that leads very rapidly to the rest of the foot subluxing.

Living with Ehlers-Danlos, ligaments, and tendons are defective from birth. As you age, the looseness gets worse and worse and simply walking on the uneven or loose ground becomes problematic. Before you know it, your fibula, tibia, and bones in the feet can sublux out of position or even go to full dislocation. So you learn to try to live very cautiously.  And then you get to spend hours and even days before a physical therapist can return your bones to their correct position. However, with this condition, the longer you wait, the more the body seems to continue to come undone like a domino effect, so the sooner it’s fixed, the less progression, pain, and damage to your body.

So what is not feasible that I loved beside the beach walking and visiting the pond behind the house?

Gardening is another example of beauty I tended to miss at the home we just moved from. On our small family farm, our huge organic garden was far back in the backyard. I spent years not being able to get back there when I was in the wheelchair and then when beginning to return to limited walking, it still presented a problem. For me, walking on uneven ground and even stepping by mistake on a rock or rut causes my reconstructed feet to go back to subluxing. So, after noticing in the local paper one day a beach that was using wooden paths, I decided to slowly purchase them to make a pathway to the garden.  It worked and gave me a return to my love of gardening, harvesting, and peace on our property.

Now living on our new property, one of our sons created a smaller garden for us and we were able to bring the wooden pathways to use not only to walk to the garden but also use in the pathways of the garden. I am thrilled to be able to return to doing something I have loved for years. I may not be able to turn the soil over anymore and must be careful even bending down to plant and harvest, but I can work with that and be safe!

None of us want to face our lives with chronic pain or even permanent disability, but if we take time and consideration, we can find ways to work around the obstacles our condition presents. It takes creativity and patience, but often solutions can be found or “invented”. Whatever activity you may have once cherished, it is important not to give up on the possibility of finding some solution or even a good substitute to help you experience the beauty in life that you have enjoyed in the past.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Ellen Lenox Smith

LORI – you asked: Did you have pain in your feet before they started dislocating.

Yes, it started out with subluxing, partial dislocations before turning to full dislocations. It all happened rapidly – despite using an insert to help hold the arch up, but all just suddenly let loose and loosened rapidly.

jimz

A very nice piece……I also live in the country, in Colorado. I also have a good size garden and pond. Due to my AS and CDM I don’t get out as much as I use to. I haven’t used the garden in over 15 years except to take the dogs and my new pup down to it. I have some older trees half way to the pond, where I spend many summer days sitting and meditating and watching the ducks and birds. It has helped with my pain so much. I do meditate a lot since I stopped all my medications. I miss the days down in the garden with my hands in the earth, That’s the main reason I moved here almost 40 years ago now. My dogs help me quit a bit though. I try to get out as often as I can to walk them which in turn feeds my inner peace.

Lori A. Frushon

God bless you dear lady!!
So sorry you have to go thru what you’ve endured. I love all your articles. They tell the raw truth & somehow end up with a positive twist!! I feel like I know you.
Thank you so much & may you continue to find the beauty in your life!

Debbie P

I really miss camping,fishing and gardening. Thanks for the article.

Lori

I also have Elhers Danlos. I was diagnosed when I turned 60. My daughters and some grandchildren have it. I was interested when you mentioned your feet. Did you have pain in your feet before they started dislocating. I recently had one foot xrayed because I thought I broke it. I dropped something very heavy and it swelled and turned black and blue. I had no break but I asked the ortho doc if he saw any arthritis. He said no it looked fine. My feet hurt all thr time and in my joints of my feet. I wondered if yourd started that way?? Good luck with your surgey.

Thai 7

How bout just about everywhere.
Like thousands of others.
But that kinda comes with deal.
Sadly.

Clive Staples Lewis wrote a fascinating book in the midst of World War II, “The Abolition of Man”. He made the point that our emotions are unique and personal. If we dismiss them as irrational we’ve given up any particular reason to remain alive. Prof Lewis argued that regimenting our emotions and subordinating them to someone else’s was an act of self destruction. The ink of the book was barely dry when the child soldiers of the Hitler Youth amply demonstrated the principle, stupidly fighting adult Russians to the death in Berlin after years of programming themselves to banish all thoughts of failure.:.while their grandfathers fled by submarine to Argentina and began new families.

Anyone who tells you that the emotional impact of illness doesn’t matter, is not to be trusted. Your emotions matter to you. I don’t share Ellen’s passion for gardening so my emotions differ from hers, but they are equally valid for each of us. Giving your friends the freedom to feel differently is a way to understand them better. If the ravages or time are going to wear our bodies down, at least the understanding we gain is a thing we can build up.

Maureen M.

My only child and her family (my 2 grandsons age 9&6) live 3000 miles from me. I have been unable to travel for many years. I have missed out on their births (never held them as babies.) and so much of their growth, school events, sports etc etc.
Also, my gardening and socializing days are long over. My life in pain has become very still.
I have no support whatsoever.
But, I’ve come to accept this life and have grown to simply be grateful for the new, quiet life that God has given me. One day at a time.
The support you have in your life is immense and such a blessing for you.