By: Ellen Lenox Smith

When life is moving forward, discovering you have been diagnosed with a condition that will be with you forever and permanently change the course of your life is heartbreaking and overwhelming. It took me over a year to begin to put the broken pieces of my puzzle into some formation that began to recreate purpose and meaning, but the journey was heartbreaking and hard.

I have had 25 surgeries, nine catatonic episodes prior to my second neck fusion, and spent four years in a wheelchair. And yet, I am happy and grateful for the life I have now. The transition one goes through to get to acceptance and not give up, is not easy. However, the time you put into redefining yourself is so worth it.

So what can you do if you, too, are diagnosed with a condition that is not going to go away but could potentially progress and permanently alter the course of your life?

  • Allow yourself to mourn your losses- you are human, and what you thought was the possible course of the life you worked towards may not be able to happen.
  • Find ways throughout this process to vent the emotions that are flowing through you- the sense of loss, emptiness, “why me,” “how will I go on,” and “how will others understand.” For me, that cleansing comes with writing.
  • Educate yourself about your condition, and open yourself to talking with others living with the same condition to see what has worked to improve their quality of life.
  • Find a supportive team of doctors. Don’t feel you have to stick with one just because it was someone else’s match. What works for one person is not necessarily right for another.
  • Try to consider unconventional methods of treatment that can’t hurt you but may help you. You never know when a treatment might be right for you.
  • Don’t allow yourself to give up despite the overwhelming days. Instead, wait for that next day and hope you awake feeling that fight that will get you stronger again.
  • Don’t beat yourself up on those really difficult days; we all have them and wonder how we can keep doing this. That negativity comes back in rapidly on that bad day.
  • Think about taking on this simple activity I do every morning- I stand by the window, put my hand over my heart, and run through my mind what I do have in life I am grateful for- family, my service dog, walking again, being alive, nature, peace around me, etc.
  • Be prepared to handle the doubters, the ones that step away from you, and that may include members of your own family. But as this hurt comes on, also notice those that you didn’t expect to come into your life. There are many good people out there with kind, compassionate hearts so let them be your strength and learn to let go of those that cause you hurt, judgment, and rejection. This is not easy but becomes very freeing when you are able to let go of that hurt and judgment. You know your truth; you should not have to keep explaining and trying to reel them back in. Some will come around and others won’t. They have to live with the choices they have made.
  • At some point, the mourning needs to become less of your focus and instead, you need to begin to learn how to live with this new condition.
  • Think of what needs to be done to keep you safe along with your medical support- like stairs or a ramp, equipment, exercise, and possible PT, food, and medications that are safe and compatible. Try to address things within your control to help improve your days.
  • When you have learned to accept this condition is with you, that it is changing the course of your life, and is altering your plans you dreamed of, then figure out how to find your purpose in life again. Simple things like reaching out to help another also trying to cope goes a long way. Maybe you can volunteer from home in some capacity. I am shocked by how many in life are silently suffering. And to add being alone to this formula is heartbreaking.
  • Find your way and learn to hold on to hope even when one tells you there is no cure, to expect progression and a rough road ahead. I have heard all this, have come home devastated and in time, have pulled myself back up and decided to show them I can still live a decent life despite the challenges.

I understand others can’t understand why I can say I am grateful for the life I have. Is it limited? It sure is but I am still here, still able to watch our four son’s lives unfold, still here to share my days with my husband of 47 years together, still here to love and be loved by my service dog, and still here to reach out and try to be there for others. I am not fulfilling the dreams I thought I would have to follow, but I have recreated new expectations like getting out of that wheelchair, taking a walk again, working in my garden, volunteering, advocating, and when lucky, even traveling to conferences to speak and share. No, this was not close to the life I thought I would experience, but it has brought on special friendships and experience due to what I have had to face.

May life be kind to you, and may you, too, find your way back in time.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She also created the Rhode Island Medical Marijuana Patient Coalition, serves as secretary of the Rhode Island Patient Advocacy Coalition, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 47 years and is the proud mother of four adult sons and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.