I Was Prepared to Die

I Was Prepared to Die

When you face a progressive, incurable condition, you may reach the point where you are forced to face the issue of your mortality, much sooner than you expected. Chronic medical conditions can often worsen despite your best efforts and often create the feeling of confronting an unwinnable endless battle. You may eventually come to terms with the thoughts that life is coming to closure. You may decide to put your energy into preparing for your ending. It is emotional, yet at the same time liberating to take charge of what little is left in your control.

I live with both Ehlers-Danlos Syndrome and Sarcoidosis that were not diagnosed correctly until my mid-fifties. The news of these two conditions came just a year apart. Due to facing these issues, life brought on many challenges. As I am sure many of you can relate to, there was a loss of a career I adored, the loss of the ability to do simple things like walking, driving, reading and even eating certain foods, along with having to be aware of medications that were not compatible, making life more difficult than I was prepared for. And in time, it appeared, despite my strenuous battle to help myself, my life was coming to closure.

Ellen Lenox Smith

I consider myself a fighter but also one who addresses reality head on. As I confronted my twenty-fourth surgery, just over a year ago, I was at the point of experiencing catatonic episodes due to a blockage of breathing. So, I decided it was time to prepare for the ending I wished to create! I prepared my last wishes that included my memorial service details. I love music and realized it was a chance to share my favorite songs at the service. I also asked a few special friends if they would speak on my behalf. I realized, after meeting my brother and sister in GA, upon the passing of my Dad who was a musician, that we became blank when asked about the details for his service. Having grown up with a composer and director, we suddenly couldn’t even think of the songs he adored. The emotion of the loss just took our memories temporarily away. So, by planning my future service, I realized I would be able to help my family through those difficult decisions that needed to be made and lift that burden for them! And for me, it was freeing to review my life, my passions and what I wanted to be remembered for at my memorial service.

I learned to keep a list by my front door for the rescue or anyone that would come into the home to help. I included details of family to contact, diagnosis, medications for both me and my service dog, necessary equipment lists to bring with me to the hospital - like my bi-pap machine, special therapeutic pillow, etc. I even had some dog food with her medication in baggies ready, in case.

But after hard work, twenty-four surgeries, tons of hours of rehab, eating only foods I could metabolize, medications my body could accept and trying to remain positive, time brought on an unexpected change. For the first time in years, since the second neck fusion, I am now able to read again without dizziness and nausea, able to drive short distances, and even walk down the street if the ground is flat. I never truly thought these could be part of my life again, for I was truly prepared for the ending of life.

So, today, I am learning to live this life again with renewed hope and new dreams. I still have those incurable conditions, but for some amazing miracle, I seem to presently have a new lease on life. I feel grateful to experience things that were unavailable for years, but also know that at any time, things can take a turn for the worse. For instance, living with EDS, a simple hug creates weeks of waiting for inflammation to calm down and bones to settle back into their correct position and hold again. So, I am now coping emotionally with a new direction knowing that this may not prove to be lasting change but appreciating that it is amazing to have, for now. And I smile when I think of this unexpected gift I was given. I know if most had to climb into my body that I am so happy with, they would think I was crazy. As we live with pain and losses, any positive changes are such a gift that help you to appreciate any little positive that comes your way.

I am not sharing this to compare experiences. I am sharing this since I want you to also find hope and just maybe get lucky, like me, with a new lease on life. I figure anytime I have a day feeling improvement, it is a gift beyond my imagination, for I truly was prepared to die. I know this gift isn’t forever, but it is here today, and I will remain grateful and try to make the best of it.

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May life be kind to you,

Ellen Lenox smith

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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Regina Dolan

Thank You for sharing your story!

Carole Porter

Thank you for sharing. I work really hard to keep hope in my heart. God Bless.

Stacie Wagner

I am so glad that you are doing well. Thank you for sharing your story. Please know my thoughts and prayers are with you and your family.

Louis Ogden

Ellen, I have responded to you via ‘contact’ on your website. I felt that would be a bit more private. Please read and respond back if you wish. I left you my email addy in that message. THANK YOU SO MUCH for responding. It lifted my spirits a little !!!

Ellen Lenox Smith

Louis Ogden - I understand your dilemma over your beliefs - what our family has always done is to celebrate one’s life - which you could take on and enjoy defining about yourself what you want to be mentioned and remembered And have you ever thought to try cannabis in an oil at night for another alternative for pain? I sleep like a baby which is how I am able to think the next day - take care


Thank you for sharing Ellen, Your strength and positive attitude is uplifting and a breath of fresh air.I am so happy that you were able to find your new lease in life.Wishing you all the best and happiness life.Take every good day as my Friend would say and run with it.

James McCay

Thank you so much Ellen. This will help many more than you can imagine.

I have Advanced Myasthenia Gravis (terminal) with Hyperthymusism (no meds work right, or at all), Degenerative Disc Disease (six discs in my neck & lowest back all with pinched nerve issues), and Fibromyalgia. I had some symptoms my whole life, all ignored by doctors. So I mostly ignored them, but lived everyday like it were my last (within reason). I had a WONDERFUL mostly healthy 16-years of life where I did more than most do in 65+ years of adult life.

Those memories keep me going now homebound and mostly bedridden taking care of myself since 2009. I have no family and one friend who I see occasionally. Honestly, I’d rather be alone most of the time. I’ve been like this most of my life from a bad childhood.

I help many others in many areas with my laptop from bed online. I never stopped educating myself. The Internet is the world’s biggest living encyclopedia and I think it’s a shame so few use it for that reason.
So I share my knowledge with others, I fight autograph forgery fraud for free. I became a Forensic Document Examiner in 1999 only for free and a sports card fraud investigator also for free.

In 1989, I was inspired by Gary Carter (a Hall Of Fame baseball star) and I donated 30,000 sport cards to the Leukemia Society. I did this every year afterwards (up to 200,000 cards a year) until 2015 (when I was too sick to continue). I added autographs I received in-person (many hundreds each year) from 1990-2015. I thought my 1st donation was no big deal, I was told mine was the 1st donation of its size to any large charity. Because of this to inspire others; the Leukemia Society asked if I’d mind “a little publicity”. My story was filmed on the Mets Stadium field pre-game for our local Evening News with Carter, it was in every newspaper, hobby publication, etc. I was in heaven.

Gary died of cancer in 2012 at 57, I’m still not over that one. Day by day…

Marie Foehl

That was exstreamly moving and ready hit home . I too have bin given my cross to bear so to speak and I’m going through a very difficult time with my condition I was thinking about the end may come sooner than I had hoped. I actually had a funeral director knock on my door the other morning. He was there because my husband filled out a survey (as he does everywhere) about pre arranging but left some things blank. We hadn’t been at that place since a family member passed 21/2 years ago. There have been so many signs it’s scary. I applaud your courage and bravery, strengths… I could make this too long.

Thank you for sharing, such a beautiful blessing. Wishing you a million more!

All the best,
Marie Foehl

Louis Ogden

Wow, what a moving story, Ellen. It has really stimulated me to make plans for end of life. I’ve already come to terms with death itself and it does not frighten me but at 69 years old and having dealt with pain since childhood, I must be realistic. I am not a religious person so a traditional funeral and service would make me feel hypocritical. My concern is caused by the constant lowering of my pain meds. Chronic, 24/7 pain can cause death by stroke or heart failure. Do you have any suggestions for me and my dilemma?


What an amazing story. I appreciate your sharing it.
I was stunned to read your bio at the end of it. I dont’ know how you manage to do any type of work. I can’t. My only commitments are doctors appointments, and Walgreens on every day 29 from my last Rx’s. And keeping those commitments is an ordeal. I come home and collapse. And never go out 2 days in a row and never have more than 2 appts in a week.

My SO is in Italy right now, on MY dream vacation. I can’t imagine travelling. The flight alone would do me in for the rest of the trip. Oddly, my pain manager was surprised that I wasn’t going. He knows my limits. How he could think I could take a fun trip is beyond me.


Hello Ellen : ); Thank you for sharing your experience. I’m glad you’re still here and an giving your testimony to inspire others. God Bless you : );

davidkenberg kenberg

I have to tell you that you wrote that perfectly and I so know how you feel and why.We dont expect this to happen to us.We are still important and loved and sometimes we cant see it because of the severity of our pain.The physical feeds into the mental then we say to ourselves I have to do the same thing to with my husband and my beautiful daughter. Its very hard for us. I have learned alot reading your artical. Thankyou and I wish you well and keep fighting. We are true warriors!!!

I was there last week and today I feel like I could make it a few more years. It’s very much like a roller coaster I’d like to get off of and one day I suppose I will. I’m older and many of my friends are already gone and most of the rest have seen better days. Such is life. Thank you for your story.

Denise Bault

Thank you for your beautiful response. Every so often I have a few hours where my pain abates and I almost feel like I did before getting sick.
Those moments are few and far between, but they are to be treasured! God performs miracles everyday!

Mr Marty

Ellen, thank you for your contributions to this group. Your stories prove that you are a true definition of a Pain Warrior. You are always in my prayers.

Terri James

Your words are truly encouraging Ellen. Through this journey we call life, whether we have chronic pain or not there are always going to be times of sadness and anger as well as joy and happiness. God never promised it would be easy, just worth it. I often tell my little girl that without the sad times we wouldn’t know or appreciate the happy times. It’s good for me to do this for it’s a reminder for myself as well. Thank you so much for sharing your positive outlook on life with all of us. Compared to yourself I’m truly blessed as far as my conditions versus yours go. On the other hand you have a big happy beautiful family, I have one little girl that means more to me than life itself and two people I can honestly say are angels on earth. Often times I think others as well as myself get sad and or angry because we are so alone at times, having very few to talk to or to understand for that fact. As always Ellen, it’s very refreshing to read something uplifting instead of more bad news. I’m very thankful you decided to stay around for a while. I pray your day is absolutely beautiful!🌻🌷🌼

Gary Raymond

Thank you for sharing your suffering with me, Ellen. Communications methods today are miraculous. I don’t feel so desolate after hearing your story.

Yvette Sandoval

I live in Albuquerque New Mexico, does anyone know who or where to find our Advocate?, Dont even have a name, or even if we have an Advocate at all here. I always hear, news on this Opoid epidemic, goin on everywhere, all the time, but here I’ve never heard bout rethinking this soppoate crisis, or about us the chronic pain patients, bein able to get our meds back, or changing things for the good, for helping get us back on track. Our news wont even consider a story bout who this epidemic actually hurt, n who’s suffering because of it. Silence completely on this part of so called epidemic. Pain clinics, well, their offer of help, is only one offer, injections into my spine. I dont want this. I dont want anymore pain, no more injections anywhere. Been there with knees, ankles n spine stimulator. N shots were horrible n never helped with the exception of providing me with more pain. N OMG, the Spine stimulator, was a damn nightmare, this thing made me feel like I was bein electrocuted, everytime I had to pee. Like peeing while holding a fork into an outlet, an awful, awful, bad experience. The only thing that ever gave me relief with my mind body n soul, was my pain medications, n now their gone, for over a year now, from a Dr. Russo, who he n his colleagues apparently think their on the same n equal level of God, or Gods. Ridiculous. But back to point, I need real pain relief help, n I’m tired of dr. Shopping as the CDC,n FDA, puts it, n so far just like Robots, already pre programmed to repeat each other, Injections or leave, are your options, n so far I’ve left. I need a dr. With compassion who believes n knows hes a dr., n k ow what his role in his patients lives. I cant, just cant go back 35 yrs in time, n start again at step one, to try everything over again. I was finally good, n now, I’m just done, if I cant get them back. So if anyone knows anyone that can help, please let me know asap, please. N you can reach me at yseward.ys@gmail.com, all lower case,

Rosalind Rivera

My heart breaks for the writer as I took have many serious and incurable conditions and some that have almost completely confined me to my jail that is my home and my bed. I too have prepared the necessary documentation should my passing come soon or unexpectedly. I do have my Saviour and my Redeemer, Jesus Christ which sustains me often but I have absolutely no support as my children have all but abandoned me. I pray every day for some measure of release from the intense pain that overwhelmed my life and look forward to the day when my suffering finally comes to an end. In the meantime, unfortunately there will be no reprieve for me and I have had to come to accept that sad fact.
Rosalind Rivera
Lucerne Valley, Ca.


Beautiful and will resound with so many of us. Thank you Ellen.