Everyone is watching the most adorable video of Reese Witherspoon learning about TiKTok (no, this is not a tiny orange flavored candy) from her even more adorable son who literally “can’t even” with his mom.
But nobody is talking about me living out one of my fan-girl dreams of having a conversation with Montel Williams via Instagram. Yes me. On Instagram. I’m surprised too.
Reese and I have something in common – we’re the “moms” of social media.
My amazing (younger, hipper) colleagues will confirm that I have as many questions about Instagram as Reese did in that video with her son about TIkTok.
For those of you who may not know, Montel Williams disclosed years ago that he has Multiple Sclerosis (MS). I was 19 at the time, and a fan – and he disclosed his diagnosis at a press conference with his doctor. Williams shared that he didn’t know how long he’d had MS, but that he believed he had been misdiagnosed for 10 years.
Looking back on the details of this press conference gives me chills because my own darling was misdiagnosed for years – precious, brain-saving years.
So, getting to the story about the Imstagram DMing – is this even what it’s called?
I saw a post on Selma Blair’s Instagram page about her recent stem cell treatment. Let me just state for the record here how amazing Selma is for bravely sharing her journey. In the post she thanks (and tags) Montel for his support but is vague about what that means. I stupidly assumed it meant that he referred her to this amazing specialist who performed this stem cell treatment. The hope is that the stem cells reboot the immune system and stop the progression of the disease.
But the procedure isn’t covered by insurance here in the United States – it’s still considered experimental. Which means that patients either need to get into a clinical trial (hard) or pay up to $150,000 – at least this is what I have heard from some whose loved ones have embarked on this journey.
I was trying to figure out where Selma had her procedure because it must be a reputable institution if a celebrity is having a potentially life-threatening procedure done there. And Selma has not once returned any of my DMs on Instagram (j/k – I wasn’t actually expecting a response) so I thought I would try my luck and ask Montel some questions since he was tagged in that post she shared.
Here’s what I asked him – and here are his answers. And I share this because maybe as caregivers we all need a healthy dose of logic and reality now and again.
RK: Selma Blair talks about how you’ve helped her, did you advise her on stem cell treatment? Do you have recommendations on where to have this treatment done?
MW: MS is different for everyone and what works for me is going to be different for your husband. I can’t give you medical advice and I don’t have a magic bullet. What I hear is your husband isn’t getting the results you both were hoping for out of his current treatment. I was at that place early on. I went to a few different MS doctors until I found one who had a plan for me that felt right.
RK: Wow, thank you for responding. I really appreciate it. If you know what institution is trusted for stem cell treatment, I would appreciate your insight. I’m not asking for medical advice, I’m just having issues figuring out where stem cell treatments take place here. I know it isn’t yet FDA approved – so are people going to Mexico?
MW: I would be cautious about expensive overseas treatments.
RK: Yes, I agree. That’s why this is so confusing. Are people having this treatment done here? Is it part of a clinical trial or are people paying for it to be done here as an experimental treatment?
MW: Careful about clinics that want money for some new miracle cure…
RK: I know. You’re right. If only we could buy our way out of this mess.
MW: Can’t buy your way out of MS…start with things that are most likely to make a difference. If you aren’t getting results, go see some other doctors and see if there are other options.
Aside from him being the most kindhearted human for writing back to a random stranger, I believe there are some really great takeaways here – and the funny thing is that my darling’s doctors have said many of the same things to us over the last 11 years.
- It might be best to avoid medical tourism, especially for something as monumentally critical as stem cell treatment.
- If something looks like a money grab, and feels like a money grab…$150,000 is financially prohibitive, and if there are other options for treatment, it may be best to wait it out until the FDA approves the treatment. For some, there may not be any other option, and it is understandable to pursue something like this.
- Find really great doctors who listen, who you trust, and who are willing to work with you to manage your illness. This, thankfully, we’ve figured out.
While I don’t always fan-girl over a connection like this, it might have been one of the most essential conversations I’ve had with another person living with MS in my whole time as a caregiver. I’m really, really glad he messaged me back.
Also – 3 degrees of separation: Selma Blair and Reese Witherspoon are friends. Selma is friends with Montel Williams. Now I’m friends with him too – which makes me friends-in-law with Reese. A girl can dream, cant she?