From skeptics to advocates, she and her husband are teaching others how to find relief
Ten years ago, if someone had told Ellen Lenox Smith that she would be growing cannabis, advocating for its medicinal use, and teaching others how to use this form of therapy, she would have thought they were crazy! Yet here she is today: a 67-year-old former elementary and middle school teacher, now educating a different population on ways to cultivate, take, and maintain function through cannabis.
While Ellen knew from childhood that she was unusually flexible and highly mobile, she thought nothing of it. “It wasn’t until I was in my late 40s that my problems became more prominent,” she shares. “As a master swimmer, I began to have excessive shoulder pain from overstretching my ligaments.” To ease the pain, she would stop swimming for a week. But her problems persisted.
In 2004, Ellen was finally diagnosed with Ehlers-Danlos Syndrome (EDS), a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility, and tissue fragility. A year later she was also diagnosed with sarcoidosis, which causes enlarged lymph nodes and granulomas in her lungs. Both these conditions are currently not curable, and Ellen’s cases are severe.
EDS causes her joints to easily sublux (slip out of position), causing excruciating pain. The crippling disease also impacts her organs, and has led to great instability of the neck. She has endured 23 surgeries.
Learning to become more careful
Ellen has learned to become extremely cautious in public because the slightest touch, bump, squeeze, or hug can easily dislodge her joints. With compromised oxygen levels reaching as low as 45 percent, Ellen relies on a BiPAP S/T (a home respirator) to keep her oxygen levels within normal range. She also must sleep at a 30-degree angle because of dysautonomia, and takes low blood pressure medication to prevent her from readily fainting.
Maggie, Ellen’s black Labrador Retriever service dog, is her protector. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator. She even monitors her breathing, which sometimes stops throughout the night. “Maggie will do anything she can to keep me safe; in fact, she has already saved my life multiple times,” Ellen says.
Roadblocks to care sometimes slow her down
Ellen has faced many roadblocks that impede her care. “I am still fighting to find appropriate care for my conditions,” she shares. “Sadly, reaching Medicare age has only restricted me more. Manual physical therapy—one necessity that returns my bones to proper position after dis-alignment—is limited. More horrifying was discovering my compound medications would no longer be covered despite DNA drug sensitivity tests showing I cannot metabolize Tylenol or aspirin, let alone opioids.” She and her husband, Stu, have to pay out-of-pocket for most therapies. It is a huge financial toll, but the only way to keep Ellen functioning and alive.
Ellen had to stop teaching, swimming, and coaching. She can no longer paint the house or help Stu with small home improvement projects, a pastime she once enjoyed. She even lost the ability to walk for four years, and undergoing multiple surgeries isolated her for months from the real world.
To some, it appears that EDS has robbed Ellen of her life, and yet Ellen would disagree. She recognizes that her life has shifted course, but she refuses to become emotionally paralyzed. She and Stu live by the motto that you must enjoy what you have while you have it.
Acting as a role model
Ellen explains: “I have four sons watching how I cope. Knowing EDS is genetic, there is a 50 percent chance my boys will have this disease too. If that is the case, I want them to look to me on how to live gracefully. If these are my circumstances, then I must adjust my attitude so I can enjoy the moments I have with my family and friends.”
Ellen is proactive with her wellness routine, too. She follows a daily exercise regimen (Muldowney Protocol) to strengthen core muscles, and uses pool therapy or a stationary bike. At least three times a week, she attends manual physical therapy appointments. Every evening, she runs a non-invasive electrical stimulation device called VECTTOR. She recently added a supplemental protocol called Cusack. And she also follows a strict diet that prohibits dairy, soy, gluten, tomatoes, peppers, potatoes, eggplant, ginger, and garlic.
Not just for hippies and stoners
Yet what has brought her the most significant relief is discovering cannabis in 2007. It was her pain specialist who initially suggested cannabis when he had no other options to offer her. “I laughed,” Ellen recalls. “I thought he was nuts. I was a retired middle school teacher who had tried it once in college with a bad outcome. I thought marijuana was for hippies and stoners.”
But after talking with Stu, they decided it was worth a shot. Converting it to an oil (smoking with sarcoidosis could be fatal), she took a teaspoon before bed—and didn’t wake until the next morning. That was the first time in years she felt calm and was able to sleep through the night!
Nothing had ever worked in her reactive body before. “The National Institutes of Health (NIH) had tried marinol, the synthetic marijuana product, with me in a research study where I gained relief. But the magic of that drug faded fast. It was not my answer—not like medical cannabis.”
Ellen typically uses cannabis at night via an oil she makes with a few indica plants, some high-CBD plants, and THC to assist with sleeping and pain relief. When needed during the day, she will turn to vaporizing, topical lotions, or tinctures.
“It has been a pleasant surprise, how gentle cannabis is on the body,” she emphasizes. “Unlike an opiate that would leave me feeling dazed or with unwanted side effects, cannabis calms me.”
Beginning to advocate
Seeing such a positive transformation, her pain doctor began connecting other patients to Stu and Ellen for counsel. “It basically snowballed from there,” she shares. “We quickly became active in our home state of Rhode Island, joining the Rhode Island Patient Advocacy Coalition (RIPAC) and testifying in any capacity needed to ensure patient access to cannabis.” (Ellen now serves on the RIPAC board.)
Ellen and Stu joined the U.S. Pain Foundation, where they currently serve as co-directors of medical cannabis policy, and were ambassadors for the Arthritis Foundation for 10 years. Ellen speaks regularly to teach others about cannabis, and is a writer for both Pain News Network and 1000 Watts magazine. (She is also the author of two books.) Recently, she was appointed to the Rhode Island oversight commission to ensure compassion centers are appropriate for the patients. She is also a caregiver for five cannabis patients (the highest number allotted in her state).
Ellen and Stu now dedicate their lives to educating others about the benefits of this medicine. One of their sons even created a website for them to direct potential patients to for further information. “Stu and I focus so much of our time and energy on cannabis because we know firsthand how it saved me. We see this as our legacy—to advocate on all levels of government to make sure individuals in every state have the same option of this form of therapy as I do.”
Ellen wishes society would understand that:
- When using medical cannabis correctly, people receive pain relief only. The assumption that individuals are stoned is simply not true.
- Not all people experience the same result from one strain of plant.
- The majority of people using medical cannabis are using oils, tinctures, topicals, or edibles—not smoking it.
- Cannabis is an indigenous plant found in nature that is non-invasive and safe. To date, there is no reported case of death as a result of medical cannabis.
Ellen encourages any eligible patient to consider cannabis as a legitimate medicine for treating pain.
I am 67 years old, and have regained some quality of life. Just like many others, I was scared to try it. Now I am thankful each day for cannabis.
Ellen Lenox Smith has a passion and zest for life that is contagious. Despite her turbulent health, she continues to live with hope and love—largely because of the relief cannabis has brought her.
“Medical cannabis has given both Stu and myself direction, purpose and meaning to our lives again. My life is transformed because of this life-saving plant. I know nothing can cure me, but medical cannabis allows me calm, rest, peace, and more dignity. It has allowed me to be proactive, active and engaged in life. I am forever grateful.”
Americans for Safe Access (ASA): safeaccessnow.org
Ehlers-Danlos Network C.A.R.E.S.: ehlersdanlosnetwork.org
The Ehlers-Danlos Society: ehlers-danlos.com
Pain News Network: painnewsnetwork.org
Rhode Island Patient Advocacy Coalition (RIPAC): ripatients.org
RI Ehlers-Danlos Support Group: rieds.org
U.S. Pain Foundation: uspainfoundation.org
1000 Watts Magazine: 1000wattsmagazine.com