*If you need support, call the National Suicide Prevention Lifeline at 800-273-8255, or text ‘start’ to the Crisis Text Line at 741741
When I was first diagnosed, I wondered if there would ever come a time when MS would make me not want to live. It’s generally discouraged to speak openly about our darkest and most desperate contemplations, but entertaining worst-case scenarios feels like a pretty natural–maybe even reasonable–thing to do when you find out you’re gonna be sick for the rest of your life.
MS is marketed as a manageable condition. We now have more than 20 disease modifying therapies that promise to make MS boring. And let the choir sing, because these drugs are game-changers for many. But not for all. We can’t ignore the reality that for some people, MS can be so severely disabling that life with MS becomes unbearable.
One of the biggest surprises of my life is how much more MS I can handle than I once thought I could. Despite my ongoing discovery that a difficult life doesn’t have to be a joyless one, when new symptoms appear I still find myself dipping my mostly-numb toe into the water of ‘what will my threshold with this disease be’.
MS is a bfd, and by the power invested in me by God and the internet, I grant you permission to freak out about it from time to time.
That said, I don’t want you to live there. The occasional existential meltdown is not the same as living with the profound feeling that you can’t go on. I want to acknowledge what those of us with MS are up against and to consider what we can do to protect ourselves from the worst of what MS portends. I also want to acknowledge that for some, death with dignity can be a rational choice.
Suicide risk in the MS population is twice that of the general public. There’s a difference between a quality of life that has been so diminished by severe progressive disease that life becomes intolerable and a suicidality that may be influenced by transient or modifiable factors. When 50% of people with MS will experience a major depression–a massive risk factor for suicide–I feel like it’s up to us–the people living with the disease—to tease apart the difference.
When Canada introduced Medical Assistance In Dying (MAID, 2021) for serious incurable “disease, illness, or disability”, I felt relieved that MS was on the list of qualifying conditions. In my own end-of-life fantasies, a last-ditch trip to Switzerland seemed like the only option for a dignified self-determined death. While dying with jet lag seemed particularly cruel and unusual, death by drug-laced chocolate made the effort seem worthwhile.
While my mostly apathetic, half-assed contemplations of an imaginary future I won’t be able to handle feel largely theoretical, the existence of MAID is like a security blanket; a hall pass to a good death, reassurance that I have options if worse should come to worst.
But MAID got a lot more real for me when fellow Tripper and Internet friend Jenny Angus reached out, first to offer me a device that had stopped being helpful for her, and then to tell me she’d applied for access to Canada’s medical assistance in dying program.
Note: giving your shit away is a red flag that you might be thinking of checking out.
The Canadian government has granted Jenny the right to die. When I asked Jenny how it felt to have someone in authority agree that the suffering her MS is causing is unendurable, she expressed relief. In a body she can’t control, access to MAID has given Jenny the ultimate autonomy.
Globally speaking, medical assistance in dying is not widely available for most people with MS. When it is an option, it’s as a last resort and the gatekeepers of access have an obligation to ensure that everything has been done to manage symptoms and optimize quality of life so that no one’s life ends prematurely.
Jenny is a self-described tough bitch, but her MS symptoms rule her day and have stripped her of her sense of purpose. A former athlete and artist, Jenny no longer has the hand and arm strength to paint. But has Canada, society, the world, done enough to support Jenny’s quality of life? When Jenny vented her frustration at the lack of accessible spaces, the staggering cost of MS, the stigma of disability, and the overwhelming shittiness of homecare, I asked what it would mean to her if the dismissive neurologist who mis-diagnosed her, leaving her untreated for a critical ten years, were to apologize for what his oversight cost her.
I can accept that science still needs time to figure out how to reverse nerve damage and cure MS; but in a world where suicide is considered the pinnacle of irrationality while disability is considered a fate worse than death, it’s not enough to say that all life is precious, please don’t die. We don’t do nearly enough to make the lives of the disabled more liveable. We have let the Jennys of the world down.
The leading risk factors for people with MS in pursuit of an early death include level of disability, depression, and social isolation. If you wanna live that Betty White life, there are some things you can do to invest in your longevity.
Degree of disability is a predictor of suicidality in MS. The best way to mitigate and minimize disability is with disease modifying therapies (DMTs). The earlier the better. If you’re like me, and your MS pre-dates the most effective treatments, DMTs might not be able to undo existing damage, but there’s growing evidence they can stave off new damage.
Loneliness shortens lives. Find your tribe.
If you have MS, depression should be on your radar. Don’t suffer. Get help.
Ask your doctor or MS clinic for a consult with an Occupational Therapist (OT), and figure out the hacks that will help you maintain independence. And then, for the love of Miss Vickies, learn to say ‘fuck off’ to the stigma around being helped. We all need help. Reject the misguided idea that independence is a virtue.
I was shocked to learn that bowel dysfunction is a research-proven predictor of suicidality. Then I thought about how all-consuming my own bowel issues can be. I have definitely felt tempted to roll the dice on colon cancer screening just to avoid the nightmare of prepping for a colonoscopy with a neurogenic bowel. However, like depression, a neurogenic bowel is treatable. It can take a lot of work and more than one doctor to get this under control. Don’t give up.
Being approved for medically assisted dying doesn’t mean you are obligated to follow-through. The Grim Reaper doesn’t show up at your door once you’ve been cleared. Unlike your cell-phone contract, MAID doesn’t own you. In fact, Jenny has 10 years to decide if or when she wants to use it.
Before Jenny could work out the ending to her story, there was a third-act plot twist. I’m happy to report that Jenny isn’t out of the game yet. With the love and support of her friends, she suddenly had an opportunity to have a hematopoietic stem cell transplantation (HSCT) in Mexico.
HSCT is highly effective, especially in early and active MS, and if you have MS you should know about it. HSCT is risky, has serious side-effects, can be expensive, and has limited availability; but when it works, it really fucking works. Do your homework and consult trustworthy resources.
After more than 20 years with MS and no new MRI activity since 2017, Jenny knows she’s not the ideal HSCT candidate, and calls this her Hail Mary. She’s done her research and understands that the procedure may not halt her smouldering MS, that chemotherapy may worsen neurological function, but Jenny feels like HSCT is her best shot at exorcising what she calls her MS poltergeist.
Jenny spent much of last year pursuing medical assistance in dying. Now she’s putting all her resources into a chance at a better life. On February 17th Jenny received her stem cell transplant and celebrated what she and other transplant recipients consider her “second birthday”. There was even a cake.
Jenny’s finding a new sense of purpose in speaking her truth and being a voice for others with MS. She’s thoroughly documenting her HSCT journey on a new blog, because she knows the intel can be hard to come by.
I want to thank Jenny for trusting me to share her story and for being so candid about her experience with MAID. Kathy Reagan Young was the first to break Jenny’s story on the FUMS podcast which I highly recommend. Kathy is a leader in this space and a champion for others with MS. Plus, her generous use of the F-word almost rivals my own. Almost.
Jenny, we are all rooting for you.
Look after yourselves, Trippers. MS is hard.