Don’t Leave First

Don’t Leave First

Our lives present us with many challenges which we must attempt to learn to cope with. Falling in and out of love, moving away from our parents for the first time, beginning a new job or moving to a new geographic location. We try to process these changes as best we can in conjunction with attempting to learn from our past decisions in attempts to improve the future. There is one thing I just can’t seem to wrap my head around and that is what life would be like if my beloved husband died before I do. I know we all face this dilemma but adding one living with a chronic medical issue, the thought of this can become truly frightening.

I made a deal with my husband a long time ago that the best way for me to deal with the anxiety that this brings on is for him to let me go first. It sounds like a plan, doesn’t it? It makes sense because he’s able to care for himself, drive, walk, and carry items, so he could better cope with the loss of me and still be able to live life alone.

But then there is the reality that we don’t get to pick when our time is up. I try hard not to dwell on the thought of what life would be like without my husband but when I do, I honestly can’t imagine it. He does so much every day to keep me healthy and safe. For instance, every morning, he performs PT on me, put my subluxed shoulder back into position, puts the sacrum back into position and on long trips, he pushes me in a manual wheelchair to keep my legs safe.

Ellen Lenox Smith

These are not actions I can do alone.

He opens containers for me, carries anything over five pounds (my limit living with Ehlers-Danlos Syndrome), drives after my PT to help me keep bones from slipping back out of position, lifts and carries out to the garbage, vacuums, and many more actions that require more strength and agility than I have anymore.

How would I do all these things by myself?

The answer is, I would not be able to. So in addition to losing the man I adore I would have increased pain, faster progression of my condition and at times, more isolation. Boy, as if we need any more emotionally charged obstacles to confront. We need to prepare for this possibility in order to gain some level of confidence that we can persevere this, the worst of circumstances. This sure sounds like something to look forward to, don’t you think?

So, what can we do to live life and deal with these emotions?

  • We need to try and stay as strong as we can and so we can keep caring for those we love in hopes that we have many years together in this aging process we all have to face.
  • We can comfort ourselves in times of mixed emotions facing issues by reminding ourselves that those before us have had to cope with similar issues. They somehow got through this stage of loss in life, so we can do our best to cope too.
  • We need to learn to listen to our hearts and emotions but also need to know when it is time to go back to living life. Dwelling on the unknown can become paralyzing if we get stuck on anxiety it brings on when we hold with these difficulties.
  • We need to consider if a move to a safer, handicap accessible home is in order to make life more feasible someday to possibly be alone.

My fingers are crossed that I will be the one to go first and not have to be tested any more on how to handle life, especially alone and disabled. I have been tested over and over with two incurable conditions and coping with twenty-four surgeries on how to learn to live life with purpose and meaning back.

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.

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Ellen you are TRUILLY blessed most men would walk I believe this from seeing lady GAGA .and men whom come and go I am so happy to hear great things you are very strong lady. I always am the 1 to take care of all but now I am doing me bless you .You are so strong and confident.. Beautiful article thank you for sharing

Ellen when I said I feel hopeless and losing hope as the days go by I meant hope for pain relief and not life itself. I have to be referred to every pain doctor I see and my family doctor just does not like to refer me or anyone.His office actually told me” You have been everywhere and nobody can help you”. I know he is bewildered by the situation all of us pain patients are in but really when they do nothing it just hits really hard. I certainly did not mean to make you feel bad and am glad you are so blessed. I am blessed by the Lord but it is still hard when I see no relief in sight. I have constant abdominal pain, pancreatitis, fibromyalgia, osteoarthritis, back issues and migraines.

Terrie Pettibon

Ellen, I am so happy that you have your wonderful husband to care for you. My husband passed away 13 years ago at 42. He had severe ulcerative colitis, and I have severe Crohn’s disease. Luckily, we never had a crisis at the same time, so we took care of each other as best we could. It’s been very hard since he passed because I’ve been in crisis mode ever since with my Crohn’s. However, with the help of my family and our Lord, I have continued to fight. We are all stronger than we think we are! You and the rest of the people on this site are in my thoughts and prayers.

Don Prue

Ellen, you’re very fortunate to have someone who loves you and can help you through the challenges most people can’t understand. It truly is difficult to ‘go it on your own.’ Most people have family or a circle of friends or a church family but not everyone.
God bless and thank Him every day for what you have now because, like you already said, we have no influence on when our time will be.

I am so glad Ellen that you have someone who cares so much for you. I am a caregiver who is also a chronic pain sufferer. I do not have anyone to care for me except Jesus as I struggle with pain and provide care to my handicapped sister. I have been without pain treatment of any kind since Mar. 4th. So far I have no doctor who has given me the least treatment for my pain. My family doctor did try Meloxicam once but it did not work. I am told to go to pain management but I have tried two of them since I fired my pain doctor in Mar. but they all said they could not help me. I feel they were just trying to get rid of me. Feel abandoned by my healthcare team. I was recommended to a doctor who approved me for marijiana but I have not tried it yet because I am hearing it is really expensive and that would not be in my budget. He is not sure it will help me. I will not take it in the form where I have to smoke it. So strange and pitiful to have the doctors tell me that my medical problem is too bad to help me and so they do nothing at all. I feel more and more hopeless as the days go by. I read about your struggles on this forum and think that you are a lucky woman in so many ways. You have someone who cares for you and you at least have some pain relief, I do not have either of those things. I am glad you are so blessed. I see my urologist soon and will see if she can refer or send me to someone for some kind of pain relief. Just losing hope for any help but I try to keep a positive attitude. That is like the sifting sands, up one minute and down the next.


Something to consider: if you are the partner or spouse of someone with serious and/or disabling medical issues, please think about getting life insurance and making your partner the beneficiary of the policy. It’s one proactive and concrete thing you can do now that will help your partner when you’re gone.

Of course money will not replace a loved one. But the proceeds of a life insurance policy can smooth the transition to this new stage of life, paying for expenses, care, and services that may be needed going forward. Rent or mortgage payments. Health insurance premiums, medical bills. A visiting nurse service or home health aide, house cleaning, handyman services, food delivery, laundry service, etc.

The money itself isn’t the point. It’s a tool. It’s peace of mind for you and your partner. It’s a way to look after your loved one(s), even after you’re gone; it’s a way to help your partner maintain their independence.

Term life insurance is not expensive, and can be converted to whole life insurance at the end of the term. The younger (and healthier) you are when you first buy your policy, the lower the premium will be. Many employers provide life insurance equal to 1x or 1.5x your annual salary, for as long as you are an employee; a policy purchased directly from an insurance company does not depend on your employment status.

Make sure you get a policy with a Disability Premium Waiver rider, which is inexpensive and will take over paying your life insurance premiums should you become disabled.

(Disclaimer: I’m not an insurance agent or expert, just a regular shmoe who happens to have a life insurance policy. Shop around. Educate yourself. Talk to an insurance agent or other person with the right knowledge set.)

Lyrics from the band The Fix. Dying Embers have been forgotten
What is the value of our existence should we Proclaim with such persistence, red or blue what’s the difference. Stand or fall state your peace tonight.


You are right. I have thought of this too, but set up a plan and moved on. Please don’t dwell in the darkness! There’s too much light to be enjoyed!!!☺

Ellen, that subject is a tough one for all around…those with and without a partner. Age in itself causes us to think a lot about who will care for us….illnesses or not.
I’m 65, live alone, have no in person support system, and my only child (and her family) live 3000 miles from me. I have chronic intractable spine related pain issues,CRPS and Systemic Lupus. I struggle every day to get through each day on my own. I will never get too used to it either! It’s very difficult. And the older I get the harder it is. So, I don’t know which is worse… Already knowing what it is like to have to endure tough self care or having an incredible partner who helps with it all and have to worry about being alone without that partner.
No matter what… life is not easy.
Keep Faith Dear Warrior…all will work out as it should, as it is in God’s hands.


Sick with a loving husband? Can’t quite imagine that. Would be wonderful and so much easier I think.

Linda Kay Thomas



I just read an article about a husband and wife doctor practice in Naples FL arrested for illegally prescribing opioids — they did that w/o examining patients, among other things. A pharmacist with a pharmacy in their building also was arrested for dispensing improperly as part of their scheme. For one thing, the husband lost his license as part of a deal from an investigation some years ago and was still prescribing, using his wife’s Rx pad.

The authorities were tipped off by a Target/CVS pharmacist who somehow found out about it.

The facts as reported in this case certainly indicate criminal activity — the type that authorities should go after.

But these criminal doctors and pharmacists are the tiny minority, and why the authorities can’t distinguish between the criminals and the good guys is beyond me.

The article is in the Naples Daily News which is part of the USA Today network of papers.


I also live in dread that my ex SO, who helps me out a lot, will find a new woman who wont’ want him to still help me, or will move or die or whatever. I think that w/o him, I’d have to be in a facility.

I’m very lucky that while my pain caused the breakup, we’ve remained good friends. I think it was easy b/c my pain changed our relationship gradually, over years, so that formalizing that we were only friends was just a technicality by the time it happened.

But honestly, and with all due respect to Ellen, I dont’ get anything out of these emotional earthy crunchy columns. They don’t help me at all. Maybe I’m too worn down and cynical. I don’t know. But I prefer columns that publish actual usable information.

And here’s some actual usable information:

A recent column here asked for our opinions about the new proposed definition of pain. To me, the new definition sounded expansive, and so positive.

But the below link is to an article in yesterday’s STAT Pharma e-newsletter, with an entirely different take on the definition, asserting that it will make access to opioids much harder than it already is.

As stated in the article, comments to the new definition are DUE SEPT 11.
To comment, just link from the article.

Gail Honadle

Why are Prescription Pain Med called a Opioid confusing it with Illicit Drugs like Heroin, Cocaine, Meth and other Illicit Opioids. CDC changed the Language, making it all seem the same thing. They are NOT: Intractable pain refers to a type of pain that can’t be controlled with standard medical care. Intractable essentially means difficult to treat or manage. This type of pain isn’t curable, so the focus of treatment is to reduce your discomfort. The condition is also known as intractable pain disease, or IP. It is NOT Chronic Pain, it is a subset of Chronic Pain that effects millions. No snake oil treatment will work. Most of use have tried all of them with no luck, just a waste of money.

No One speaks on the Dangers of OTC pain meds. Tylenol damages livers, It can be used for 10 days only; the others are both GI and Blood thinners and can’t be used Post Op. Acetaminophen overdose is the leading cause for calls to Poison Control Centers (100,000 year) and accounts for more than 56,000 emergency room visits, 2,600 hospitalizations, and an estimated 458 deaths due to acute liver failure each year.

. A push to expand access to MAT began under the Obama administration, when the overdose epidemic spread to wealthier, whiter communities and forced policymakers to embrace a public health approach to opioids after decades of failed strategies rooted in the war on drugs.

Denise Bault

It is scary to wonder what it would be like to lose someone who has been so helpful. Be glad you have him. My now ex-husband told me he “just stopped caring about me once I started getting sick.” It showed. That’s why he’s an EX. It would be wonderful to have someone help me. My advice is to not dwell on what may happen, because usually it doesn’t. If it does, you have already shown the resilience to carry on despite some really horrible obstacles. God bless!

Lots of us don’t have a partner. Personally, I look forward to an end to pain and crippling depression.

Excellent reasons to make multiple friends. The more people there are, who genuinely like your companionship, the easier it is to mooch the occasional favor from them. “Please” and “thank you” are terribly underused in our culture these days. Angrily screaming “Gimme!” just doesn’t make me appreciated.

Much of the self-imposed social isolation that eats away at our community of fellow patients, arises from fear of the “Gimme!” demands we might hear. The person insulting us for using a handicapped parking space. The person trying to take away our medicine by force. The person who insists that we can’t possibly be as disabled as we say we are, because he imagines picking up a gun and killing himself rather than living another painful day…a paradox we all face when meeting the narcissists around us, who simply don’t grasp that it’s not that simple to put a gun to one’s head and pull the trigger, when we would be abandoning others we love, by dying…narcissistic people can be incredibly difficult to deal with, as they are certain they have all the answers because they never listened to an original question from anybody.

I can’t presume to tell Ellen what to do with herself, but if she was my neighbor and needed a jar opened, I’d want her to invite me over to open it.

We can accomplish a lot more good than we might think, just by setting a good example.