Living With Myasthenia Gravis - A Ben's Friends Patient Support Community

A personal Word From TJ (modsupport)

Good Morning Ben’s Friends, and I hope/pray it is for all of you. I have over the last 10 years gotten to know many of you and want you to know just how much I have appreciated all of you over the years, especially now. Like all of you, I came to Ben’s Friends at a low point in my life. I had just received a life-changing diagnosis and was seeking information. I was one of the first members of a new BF community Living with PsA, became active in that community, eventually became a moderator and after a while at the request of DancerMom, our first Mod Support Person started to visit other communities. When she left for a great new life in Europe, I became the new Mod support Person and was able to assemble an amazing team. Last Year Ben asked me and Seenie to become the first Executive Directors of this amazing organization. Over the years in my various Identities - TJ, TJ1, TnTlamb, and I few others I developed a bit of a reputation as a tough old curmudgeon, who sometimes didn’t get it. I certainly am cranky, and most definitely old, but I have always gotten it - after all, I was there too.

Bits and pieces of my story came out over the years, some true, and others assumed. I did start out way back in the seventies with great intentions of being a brilliant surgeon. First, it was urology, then Cardiology, and ultimately orthopedics. Brilliant I never was, as my physical limitations put a stop to that at every turn. I ended up in various stints teaching, researching, consulting and other almost, but never quite there and ultimately business. But what really became my passion was Kids and making a difference in one life at a time. At least That was the goal. Over the last 43 years, my amazing wife and I have fostered dozens and ultimately adopted 8. From there we raised two Grand Kids and finally celebrated an empty nest just before Last Summers Ben’s Friends Foot and Float event. We even hung a no vacancy sign by our front door. THAT didn’t work. Rare disease (which isn’t so rare) has lead to 4 funerals for spouses of the first “litter” and debilitating disease of one child and one grandkid has filled our nest with a 6 and 8-year-old, a 21-year-old grand with Lupus, and her cutest little 1-month-old with a rare form of Spinal Bifida. I am a patient and a caregiver. Last night when I should have been sleeping and/or Visiting the BF community sites and Facebook pages I was up until 3:00 Am assembling a 300 piece dollhouse kit.

So that’s my story, but as why to I am using my “Super Powers” to post to all of our communities at once is another. As you may have heard there is a bit of an International Health Crises occurring out there. My inbox as I am sure is all of yours is blowing up with “what WE are doing about Covid-19” emails. Everyone from my grocery store to this morning my barber has sent me their response. All I can say is “You mean up till now you didn’t clean the place or wash your filthy hands?” But social Mores’ almost require a similar email from us. Don’t look for it because it isn’t coming. We have done a few things including an amazing (and expensive) Partnership with Backpack health, but a response beyond that and a few other things is not necessary. What is necessary is a response from all of us as the community we are. This “missive” if you have chosen to read it is from me and not Ben’s Friends.

Every news report, Facebook post, official Health Department advisory, etc, just makes me that much angrier. They all have the same basic theme that comes with a footnote. “This will be okay” until you read the footnote which refers to “at-risk population” as if we don’t matter as it is a small group who is likely to die from something else soon anyway. What utter nonsense. That group just in the USA represents 30 million people. People like me who have kids to raise, families to support, loved ones to care for, and lives that matter - to someone.

So here is my suggested response:

  1. Now than ever PLEASE make an effort to check in with your community or Facebook group to give support when you can and get support as needed.
  2. Take positive steps for you and your Family - Take control of this thing just as you have your disease and/or caregiving Role. You got this Prepare (your Backpack is a Good Start)
  3. And as I always advise, the best response to those who don’t get it is the liberal use of the middle digit of one or both your hands. Don’t bother trying to educate the ignorant. It won’t work, that’s why they are ignorant
  4. and lastly wash your hands :slight_smile:
    Love to All, TJ