Cheryl’s Story: When the pain never stops

Cheryl Romaire lives in Western Canada. She lives in chronic, unbearable pain as illustrated in her blog post below. Cheryl’s story is tough to read and her pain is hard to imagine, but she represents so many Canadians who have exhausted all medical treatments for their intolerable pain and who are waiting for Bill C-7 to pass in parliament so they can access medical assistance in dying. 

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My name is Cheryl Romaire. I’ve been alive — but very far from living — since October 2017 due to my spine and autoimmune issues, with no chance of being “fixed” or even of improvement, grossly inadequate symptom control, and with the knowledge and fear that my condition will continue to decline. I was diagnosed as having adhesive arachnoiditis, one of the most painful conditions a human being can have (It’s up there with metastatic bone cancer and complex regional pain syndrome). The pain I manage to exist through is progressively getting worse and will continue to do so. It hasn’t been livable for quite some time, and I legally requested MAID for the first time on June 12, 2019. I was denied because I did not have a reasonably foreseeable natural death. I was left trapped at my highest pain level with no relief in sight.

Every second of every minute of every hour of every day I am suffering. It feels like my tailbone is being crushed by a 100lb rock and if it would break it might actually feel better. My left sciatic nerve is stuck spasming so severely that even when I am on a high level of morphine in a hospital and it manages to dull the pain, I can physically feel the nerve moving all the way out of my left foot. The strength and waves of the physical pain from the nerves in my lower back, going down my legs and out of my feet can only be described as lightning bolt stabbing electricity that never stops. Never. Not for one second. It. Never. Stops.

I am about 70% numb completely from the waist down, with roving areas of numbness that go right up to 100%. There are times that my legs are so numb I could stab a needle down to the bone and I feel nothing. Nothing at all. Except of course for the nerves in spasm.

Most of my waist length thick hair has fallen out, my fingernails are falling out, I burn a low-grade fever a lot of the time, have pain in my joints, especially my SI joints, and even though I’ve had low blood pressure for most of my life, I now have uncontrolled hypertension. I cannot go out in the sun without breaking out in a severe rash within minutes. I have to take methotrexate once a week now because I was diagnosed with severe psoriasis, but nothing has improved. My rheumatologist tells me to just continue injecting Ketorolac in my thighs 3 times a day like that’s nothing and has nothing more to offer. Because of those intramuscular injections continuing for over a year now, my thigh muscles are scar tissue filled hamburger that hurt with every step I take. COVID-19 has made many doctors afraid to prescribe biologics.

Three years ago, I was a very fit woman, I did yoga almost every day, and walked my dog four kilometers daily. I now struggle to walk more than about 50 feet without a cane. Sometimes my legs lose strength to the point I struggle to hold my own weight at all (I’m 5’1 and 125 lbs.). I cannot sit down without severe pain and tailbone pressure, at all, ever. Any ride in a car is agony for me. I have been homebound since October of 2017, and I now require help from homecare five days a week just to complete the basics needed for life.

My pain, numbness, leg weakness, and sickness prevent me from living with any sort of quality of life. I exist in suffering while I try everything available to me to get some improvement. In the last three years, I have had 24 invasive and painful spine procedures. I’ve had epidurals, nerve root blocks, corticosteroid injections, median branch blocks, radiofrequency ablations, non-surgical decompression, shockwave therapy, endless physiotherapy, and completed the program at the chronic pain clinic just to name a few. Nothing has worked.

I have spent the last three years, while physically suffering, being run around in endless circles that went nowhere by the health care system, trying to receive even the basics of care from a spine specialist. I submitted two complaints through the College of Physicians and Surgeons of Alberta which were ultimately successful, and I have a stack of apologies, but that doesn’t help my pain. I’ve been told I require a spinal cord stimulator implant, but after taking three very long years of fighting for the referral just to see the functional neurosurgeon who does them, he told me in order for him to consider me as a candidate, I must repeat the yearlong program I just completed in March at the chronic pain clinic again (with no reason for that given), as well as taper off all opiates first. That’s no longer an option. If I didn’t need the opiates, I wouldn’t need the implant.

My pain level now ranges from “barely tolerable to sustain life” to “I wish for sudden death just to stop the pain for a couple of minutes.” I get waves of pain so intense that I vomit spontaneously where I stand with no warning, I shake and sweat, I cannot form a clear thought, and twice now I have lost consciousness just from the severity of my pain alone. Maybe here I should mention that I had two babies with no epidurals and breathed through both labors without screaming. This is worse.

Since September of 2018, my quality of life has been minimal, even though my family does what they can to help. I rely on my son for nearly everything, and that breaks my heart. I struggle to make it from my bedroom to the kitchen to fix something to eat. The basics of personal hygiene are now challenging to me. Sometimes even just having a shower causes me so much pain and takes so much energy that that is the only thing I can do that day. I do not attend family functions; I do not leave my house other than to go to medical appointments. Even just the car ride to and from an appointment is excruciating for me and I suffer for days afterwards. Every second of every minute of every hour of every day the crushing weight of pain on my tailbone increases, and the nerve pain spazzing and shooting down and out of my legs and feet is at times all consuming. I cannot stand up for longer than 10 minutes at a time. I live in a brain fog caused by both the blinding pain and the narcotics used to try to mask it. I am currently on 14 medications. I do not sleep for more than a few hours at a time because of the pain. I am tired. Right down to my soul tired.

Despite all this, I am happy. I have raised two wonderful children who have grown into wonderful young adults that I am so proud of. I have travelled. I have lived. I am not living anymore, and I haven’t been for quite some time. Every minute of every day is agony for me, and it will only continue to get worse. Pain this severe must have an end date.

I have done everything in my power to withstand the never-ending agony for this long, out of love and empathy for my family. It is time for me to be able to feel relief now. My family understands my need to end my suffering, and while they do not wish for me to die, they wish for me to finally be pain-free. They support my request for medical assistance in dying.

Waiting for the new changes to the MAID laws to come into effect has been difficult. Knowing there is relief in sight is what keeps me going now. I am very grateful that I will have the right to choose when to end my suffering, even without a terminal diagnosis. A decision like this is deeply personal and should be made by the person doing the suffering, no one else.

That person is me.

Cheryl Romaire