The fist signs of this God-forsaken disease grabbed me when I was not quite 25 years old by way of double vision, slurred speech, and general weakness on the right side. Back in those days (the early ’80’s), there were neither MRI’s nor Disease Modifying Drugs, so after ruling out St. Louis Encephalitis (I am from Houston where we grew our mosquitos to be the size of Buicks), there was nothing to do but wait until I had another ‘event.’ And over the years, I’ve been completely blind in one eye for up to six weeks a couple of times, and I’ve fallen more times than I can count, resulting in stitches, torn tendons, and lots of surgeries to put stuff back where it belongs. Too much nonsense to remember.
So, here I am some 38 years later, ready for HSCT in Mexico in 28 days. I’ve tried it all. Been on a couple of DMD’s costing up to $60K per year, diets, more diets, food plans, Low-dose Naltrexone, supplements of every kind and simple lifestyle changes…you name it, I’ve done it. Actually I did like massage, but it didn’t to much to alleviate symptoms.
The only thing I won’t do is give up.
So let us not grow weary of doing what is good; for if we don’t give up, we will in due time reap the harvest.
What a whirlwind 2018 has been. It was quasi-normal until it all hit the fan. Then it was no longer normal or like anything else I’ve ever known.
That’s ok though. I am 62 years old and if I haven’t learned to roll with the punches yet, I’m in big trouble. Now you may argue that rolling with the punches is not a common response to being sucker-punched in the gut. Or more accurately, sucker-punched in the gut with a 2X4 wrapped in barbed wire coated with acid and spikes on the end.
People tell me frequently that they are amazed at my strength. That really cracks me up. I am not particularly a strong person–especially not emotionally. One thing I am, however, is a learner from past mistakes.
In my early 30’s I experienced the death of three individuals most dear to me, and rather than allow myself to grieve, I stuffed it all. When I finally allowed myself to peek at what had been brewing for months, it was no longer grief. It had fermented into recklessness, anger, neediness and a host of other unhealthy buzzwords that threw me into a trainwreck that took almost two decades to untangle.
Back to 2018 and the adventure.
I’ve had to reevaluate what I consider adventurous. It’s not always fun and usually has at least a hint fear or suggestion of unexpected outcome. And, to that end I maintain that this year has been an adventure. Breathtaking, excruciating, unknown, painful. But, it is still more challenging and rewarding than anything else I’ve ever lived through.
And the year is not even half over.
This time I’ve made grief an adventure rather than something sealed away to ferment. Let’s see where God is taking this thing.
My 6’5″, hilarious, handsome, one-of-a-kind, life of the party, son is gone.
One day he was alive and the next day he wasn’t. The day when my daughter drove from Atlanta to tell me that her brother had died in his sleep lasted far longer than 24 hours. It was 6PM by the time I realized I was still in my night clothes wearing only one sock. The next couple of months were lost; I still don’t know where they went. What’s more, I don’t really want to relive them or even think about them again. People remind me of phone calls and visits that I simply don’t remember.
The official date of death is listed as April 22, 2018 since that’s when his roommates found him, but after checking phone records, etc, it seems that April 20 is more accurate. He was 25 years old.
I’ve had a decision to make involving a verb or a noun. To grieve or be a grieving mother. I have chosen the former. I learned how to grieve by doing it wrong and I won’t do it again. My daughter was burdened with telling me the news that she feared would end my life as we’d all known it. I couldn’t let her be right and allow her to lose me as well as her brother.
Not going through this on my own steam this time. Either God is real or He’s not. Either He’s going to do what He promised He will or He’s not.
The Lord is near to the brokenhearted And saves those who are crushed in spirit.