Reintegrating into Society

Reintegrating into Society

When you are young, life is full of promise and adventure. You tend to feel invincible with a future of seemingly unlimited opportunities. So much is innocently taken for granted, as many of us are fortunate enough to be protected, nurtured and guided by well-meaning family and friends. But, as you begin to leave the security provided by your family and transition to a life on your own, with real world decisions to make, you begin to see the world through a different lens. You realize, as you meet so many new people from a variety of backgrounds and experiences, that life presents many with challenges which often prove isolating and at times, physically and emotionally overwhelming, depending on what you must confront. Sometimes, you find you must redefine yourself with new purpose and meaning. Depending on your situation, you may need to adapt your lifestyle in ways you could never have anticipated. It then is necessary to face the challenge of reintegrating into society with changes that are often significant and difficult.

At one time in my life, living with Ehlers-Danlos Syndrome, I spent four years in a wheelchair. It was a tough assignment to take on and in time. I realized it was important to make those around me comfortable relating to me in my life circumstances which had been altered so dramatically. If I was able to show I was still living life and even adding humor to my predicament, it seemed to help others accept me in my new circumstances I realized that often, I needed to take the initiative to allow people feel comfortable with the “new me”. But, after many leg and foot surgeries, in time, I got a chance to gradually walk again. It was so weird to be in a hospital and be assigned to get up and take steps. I had to be taught how to walk again – something that had just been taken for granted. I remember hearing my rehabilitation physical therapist say: “Your steps are too far apart” or “Take smaller steps”. Who would think, in your fifties, one would have to learn how to walk again! So I went from learning to reintegrating into life as a wheelchair bound person and then again as a person learning how to walk again.

Ellen Lenox Smith

I was finally properly diagnosed at the age of fifty-four, with what I was born with, Ehlers-Danlos Syndrome and a year later, Sarcoidosis. I had to face one surgery after another. Of course, these all involved a lot of isolation, extra pain, tremendous discouragement and concern as to who I was to be in the future, assuming I had one. I struggled with this process, mourning my losses and eventually cleansing through writing. In time, I learned to find the positive in my life, not feel like it was only me having to live with pain and hardship. I came to realize that life was tough for so many of us but in different ways. The challenge was to face our altered circumstances and find a new method to cope with our issues, whatever they may be. It was a real trial for me to learn to adjust to being part of society as this handicapped person. It was not the me I knew, and I had to learn how to function as this different person. Yet, just this past year, I have had to again learn to readjust to a different life again. After twenty-four surgeries, adjusting diet, medications and daily physical therapy, I have again happily learned how to reintegrate into society. This time, I am returning to things that I thought were gone forever – driving, reading without dizziness and nausea and walking! It is thrilling but again, an adjustment to return to things that were once part of my life. The weirdest thing is having to work with the emotions. Actions that once triggered catatonic episodes, can still make me tentative, with the mind playing those games making me wonder if I am about to relive traumatic life-threatening experiences. So, once again, for a very good reason, I am now having to learn to adjust to society again as a changed person.

For those of us living with chronic pain, our lives can be like a roller coaster ride.  One day you might be dealing with the social isolation. This so often, can be evident in the lives of the bedridden, one experiencing surgery recuperation, or one being so ill that you aren’t able to participate let alone want to be around others. Or, you can instead have moments of improvements, regaining some of what was lost. You never know what will come next. As a result, you may have a tendency to keep your guard up – sometimes doubting success, and often feeling at a loss as to where you now “fit in” and then facing positive chances after lots of efforts. As these changes come upon us, each time, we must learn to reintegrate into society to cope with the person we are learning to accept to be. May your transitions be towards a positive direction!

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.

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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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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Ann E Stickel

Thank you Ellen. Once again so understandably expressed.

Why are you pretenting. To care. While you’re getting rid of Medicare S,S.S. welfare. The. Idea is get rid on us that are on it.

Thank you Ellen.

Rebecca

No Steven its not, I can understand your situation very well. I to am living with terrible chronic pain and I’m no longer able to get any pain medication and it’s completely overwhelming. I have been ill for over 16 years and for more than 10 of those I was taking a pretty high dose of meds but I was still able to work and had some quality of life. Fast forward 6 years and I’m in constant pain, unable to work, mostly bed bound and at this point it doesn’t matter if I live or die. What all these holier than thou people are doing is only making it impossible for people such as ourselves to have any quality of life. The heroin addicts can still get high, and if they want to clean up they can have methadone, or suboxone, (mustn’t let the poor addicts suffer) people that can afford it can still buy it off the street (amazing) but if you have pain you’re just a liar and a drug seeker, I’m so sick of the double standards. And hey if you can be in constant pain and survive by making lifestyle changes, eat antidepressants like skittles, take up biofeedback or yoga, then more power to you. In 10 plus years I managed to have a better life because I was allowed to have something that helped me a lot. I didn’t abuse it I didn’t sell it and I somehow managed to NOT become a heroin addict. What you doctors are doing (and the news media) is causing endless suffering for decent people who don’t deserve it. More and more people will turn turn to suicide because it gets to be too much. This witch hunt needs to stop. As I recall they did the same thing with alcohol once, it was called prohibition. A lot of people died because of it too. And if you cared to look at the statistics way more people died from alcohol related deaths in 2017 than from opioids according to our own government. There is always going to be people who do dumb things, it’s a given that you can’t save stupid people from themselves because if they really want it they’ll find a way to get it. Where is the humanity?

Rob

Ellen, when you write these articles, the truth of these shared experiences is so helpful to me as I also go through the daily experience of pain, fatigue, and depression – because of all the things we can’t do, all the good we want to do – but can’t. How can we avoid feeling isolated while going through these experiences on a daily basis, while everyone around us is living in another world? By connecting to others who are going though it as well – and you do that so welll. Thank you and may you be having one of those “good days.” Compassionate people like you richly deserve it.

Ellen Lenox Smith

Rakel – what I mean is that when the trachea shifts and sternum slips down, I have had episodes of becoming unresponsive – not able to talk, breath, and even get up and walk, for oxygen levels get cut off – this has gotten much better since the second neck fusion. I happened to have had many accidents on that side that weakened it – so a simple hug can also bring this on.

Wonderful Heavenly article Helen!!! Sometimes my pain is so overwhelming I find it increasingly hard to visualize. Sorry all!

Theresa Negrete

Ellen this is beautiful! Your writings stir up twinges of hope for me, thank you!

susan

I enjoy your writing and outlook on your life. It is so true that you (and myself) readjust daily. I also have sarciodosis stage two(whatever) that means, multiple sclerosis, and 2 major back surgeries. I had to learn to walk again. Now I can’t walk with perfect gait I am happy just to be able to at all. Took two bad falls this week and still recovering from them. Next I have to look for a scooter. I never thought in a million years this would be me. Another chapter in my life and I try to find the strength to live it. thank-you. Day to day. Susan Bowie and cats.

Is my plight so differant than others? My life is just being snuffed out. I now get less medicine than I can live with. No amount of exercise, ect will replace it. Is anyone else still here clinging to an impossible situation of forced tapor, torture and insurmountable increasing pain or am I all that is left? Meanwhile, family sees you as an addict who wonit try harder. Cant even have a dog since I am about done? Seriously.

Rakel

Ellen another excellent piece from you. Could you tell me if what you describe as “catatonic episodes” dizziness were part of your EDS? I have EDS less severely than you but following medically not diagnosed head injury suffered something similar for many years. I believe these episodes of feeling detached and only being able to watch TV in bed for days until I “came back into myself”were wrongly diagnosed as ME. Any thoughts? To be ignored in such a state by medical professionals made the experience terrifying. Thank you.

Pam W

Thank you, Ellen!! You are always an inspiration to me, and to so many others who live with chronic pain! Many Blessings to you!

Thank you for this article! It is something I relate to at this moment, and the timing was perfect.